Certificate of Need Application Form Version 09.2016

Name of Applicant

Continuum Care of Rhode Island, LLC

Title of Application

CON Application for Hospice Services January 10, 2017 Resubmitted on: February 3, 2017

Date of Submission

___ Regular Review _____ Accelerated Review (provide letter from the state agency) _____ Expeditious Review (complete Appendix A) Type of review Tax Status of Applicant

_____ Non-Profit

___ For-Profit

Pursuant to Chapter 15, Title 23 of The General Laws of Rhode Island, 1956, as amended, and Rules and Regulations for Determination of Need for New Health Care Equipment and New Institutional Health Services (R23-15- CON). All questions concerning this application should be directed to the Office of Health Systems Development at (401) 222-2788.

?lease have the appropriate individual attest to the following: Thereby hereby true."

that the information contained in this application is complete, accurate and

signed and dated by the President or Chief Executive Officer

2/3/2017

Table of Contents Question Number/Appendix 1 2 3 4 5 6 7A 7B 7C 7D 7E 7F 7G 8A 8B 9 10A,B,C 11 12 13 14 15 16 17 18 19 20A-B 21 22 23 24 25 26A-C 27 28 29A 29B 29C 29D 29E 30 31 32 33 Appendix B Appendix D Appendix G

Page Number/Tab Index 1-3/Tab 1 3 4 5 5 6-12 12-13 13-15/Tabs 2 & 3 15-22/Tabs 4 & 5 23 24-26 26 27 27-30/Tab 6 30 30/Tab 7 31-32 32-33 33 33 33 33 34 35 36-37 37 38/Tab 8 39 39 39-40 40 41 41/Tab 9 42 42 42 43 43 43 44 44-45 45 45 45 46-47 48-51/Tab 10 52-54/Tabs 11 & 12

PROJECT DESCRIPTION AND CONTACT INFORMATION 1.)

Please provide below an Executive Summary of the proposal.

The Applicant, Continuum Care of Rhode Island, LLC (“Continuum”) is proposing to provide Medicare certified, home-based hospice services to residents of Rhode Island and their families with an emphasis on serving minority communities. This new program will serve persons with terminal illness or injury by minimizing their pain and distress and enabling them to maintain dignity through the end-of-life. This program will empower clients to make informed decisions that best meet their medical, psychological and spiritual needs. The services that we provide will facilitate these choices. Continuum employs a multidisciplinary team-based approach to hospice care. Teams draw as needed from a variety of disciplines such as palliative and other medical services, skilled nursing and nursing aide care, homemaker services, medication management, bereavement counseling, physical, speech, occupational therapy, music therapy and nutrition management. Each client team is comprised of the specific staff and expertise necessary to meet its client’s unique needs. Needs, in turn, are determined in each case through an initial, comprehensive case assessment and continued monitoring. Each team works in coordination with its client’s physicians and other care givers in order to achieve specific, concrete goals in such areas as: • • • • • • • •

Pain and symptom management, Social, psychosocial and spiritual needs, Use of necessary medications, medical supplies, and equipment, Advice and support for family caregivers, Specialized service needs such as speech and physical therapy, Use of short-term inpatient care when necessary, Respite for family caregivers, Bereavement support for Support for family and friends.

This proposed service will be operated by Continuum with the expertise gained through experience in providing end-of-life and palliative services in the home setting regardless of where that patient resides, i.e., whether in their own residence, a long term care facility or in a temporary location such as an acute care hospital. Our mission moreover, is founded on our belief that no level of service can be sufficient if those in need do not have access to it. For this reason, Continuum has strived to create an industry-wide model for outreach to underserved populations. Continuum’s affiliated company, Continuum Care Hospice, LLC (“Continuum Care”) operates a model hospice service in Oakland, California established in 2014. This program services approximately 700 patients per year with an emphasis on the African American

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community, a population that has historically faced significant obstacles in access to hospice care.1 The Oakland area is home to a highly diverse population that suffers significant disparity in access to hospice care. Like African Americans, many of these groups experience limited access to hospice services. As demonstrated in Table 1 below, these disparities are substantive: Table 1: CA Percent Pop by Race Vs. Percent Hospice Users by Race White Black Asian Hispanic Oakland Pop by Race -% CA Hospice Users by Race Disparities by Race

35% 75% 40%

28% 5% -23%

17% 6% -11%

25% 13% -12%

Sources, CMS Public Use Files 2014; US Bureau of the Census

This table clearly illustrates that access to hospice care in Oakland is disproportionate to the size of the African-American, Asian and Hispanic populations. A substantial component of our mission has been to address these inequalities. Initially, focusing our efforts on access on the African-American community, Continuum developed a set of tools and practices to address the cultural, health systems’ and other impediments to hospice care that confront this group. These mechanisms deal with specific concrete obstacles long identified by health policy makers and researchers but frequently not well addressed. Examples include the insensitivity to cultural variations in attitudes towards death and dying, the frequent difficulty clinicians have communicating about end-of-life issue or the lack of culturally appropriate sources of information and resources within communities. Continuum has learned that these barriers can be confronted and overcome with constant, concerted effort applying common sense techniques. See also the articles at Tab 1. Using such outreach efforts, Continuum Care’s hospice utilization for African Americans has reached 13% as compared to the local area average of 7% and the California state average of 5%. Continuum Care’s experience, moreover, has provided the opportunity to develop our service model and adapt it to other underserved groups including the Asian and Hispanic populations. Since we began deploying access programs to those communities, we have observed similar success in increasing the proportion of these groups within our service populations.

1

See the Articles at Tab 1 including “African-American Outreach Guide” from the National Hospice and Palliative Care Organization, New York Times article entitled “A Racial Gap in Attitudes Towards Hospice Care,” August 21, 2015 and PBS News Hour Interview entitled “Why African-American seniors are less likely to use hospice,” May 5, 2015.

2

Given our experience with outreach, we have also learned that development of a racially and culturally diverse workforce is another crucial element in overcoming barriers to unmet needs. While this may appear obvious, it bears stating that workforce composition should reflect the composition of the community. This not only facilitates access to service but improves the quality of care as well. In keeping with this commitment, 40% of our present workforce in Oakland are members of minority populations. Continuum specifically seeks to develop hospice services in Rhode Island. Groups lacking equitable access are well documented in Rhode Island and are prominent within many of the state’s special populations including racial and ethnic minorities, persons of Hispanic descent, persons in poverty, the elderly and other disadvantaged groups. Rhode Island comprises a well circumscribed healthcare market in which we can measure our progress and demonstrate our success. The culture of excellence in health care delivery that exists here will facilitate the sharing of ideas and industry wide improvements. We believe that Rhode Islanders would benefit from our approach to service delivery and outreach and we would, in turn, have opportunities to further refine our service model. In providing hospice care in Rhode Island, Continuum will work directly with community organizations, physicians and other health care providers to deploy specific tools and outreach mechanisms that address populations with unmet needs. Such activities are part and parcel of our program model and our mission and will be employed to improve accessibility for all special populations. Our efforts will ensure that all persons who would benefit from hospice care will have the knowledge and opportunity to choose that option if they so desire. In this way we expect to contribute toward the improvement of the broader system of care in Rhode Island while at the same time meeting the needs of specific persons. Continuum expects to achieve an average daily census of approximately 40 patients by the end of the first full year of operation. We expect furthermore approximately 30% of these patients will be members of one or more underserved populations by that time. The capital costs associated with this proposal are $133,000. Operating expenses are projected to be $1,623,593 at the end of the first full year of operation.

2.) Capital Cost

$ 133,000.00

Operating Cost Date of Proposal Implementation

$1,639,000.00

From responses to Questions 10 and 11 For the first full year after implementation, from response to Question 18

07 / 2017

Month and year

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3.)

Please provide the following information:

Information of the applicant: Name: Address:

Continuum Care of Rhode Island, LLC 10 Dorrance Street, Suite 700 Providence, RI

Telephone #:

401-519-3753

Zip Code:

02903

Telephone #: Zip Code:

401-519-3753 02903

Telephone #:

(510) 499-9977

Zip Code: Fax #:

11210

Telephone #:

(401) 274-7200

Zip Code: Fax #:

02903 (401) 751-0604

Information of the facility (if different from applicant):

Name: Address:

Continuum Care of Rhode Island, LLC 101 Plain Street, Providence, RI

Information of the Chief Executive Officer: Name: Address: E-Mail:

Samuel Stern 850 E. 24th Street Brooklyn, NY [email protected]

Information for the person to contact regarding this proposal: Name: Address: E-Mail:

Patricia K. Rocha, Esq. 1 Citizens Plaza, 8th Floor Providence, RI [email protected]

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4.)

Select the category that best describes the facility named in Question 3. Freestanding ambulatory surgical center

Home Care Provider

Home Nursing Care Provider

Hospital 

Freestanding Emergency Care Facility

Hospice Provider

Inpatient rehabilitation center (including drug/alcohol treatment centers) Multi-practice physician ambulatory surgery center Multi-practice podiatry ambulatory surgery center Nursing facility

5.) A. B.

C. D.

E. F. G. H.

Other (specify):

Please select each and every category that describes this proposal. _ construction, development or establishment of a new healthcare facility; ___ a capital expenditure for: 1. ___ health care equipment in excess of $2,451,805; 2. ___ construction or renovation of a health care facility in excess of $5,720,877; 3. ___ an acquisition by or on behalf of a health care facility or HMO by lease or donation; 4. ___ acquisition of an existing health care facility, if the services or the bed capacity of the facility will be changed; ___ any capital expenditure which results in an increase in bed capacity of a hospital and inpatient rehabilitation centers (including drug and/or alcohol abuse treatment centers); ___ any capital expenditure which results in an increase in bed capacity of a nursing facility in excess of 10 beds or 10% of facility’s licensed bed capacity, whichever is greater, and for which the related capital expenditures do not exceed $2,000,000 ___ the offering of a new health service with annualized costs in excess of $1,634,536; ___ predevelopment activities not part of a proposal, but which cost in excess of $5,720,877; ___ establishment of an additional inpatient premise of an existing inpatient health care facility; ___ tertiary or specialty care services: full body MRI, CT, cardiac catheterization, positron emission tomography, linear accelerators, open heart surgery, organ transplantation, and neonatal intensive care services. Or, expansion of an existing tertiary or specialty care service involving capital and/or operating expenses for additional equipment or facilities;

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HEALTH PLANNING AND PUBLIC NEED 6.) Please discuss the relationship of this proposal to any state health plans that may have been formulated by the state agency, including the Health Care Planning and Accountability Advisory Council, and any state plans for categorically defined programs. In your response, please identify all such priorities and how the proposal supports these priorities. In developing the proposed project, The Applicant investigated health planning priorities in Rhode Island. Four documents, in particular, provide the foundation for these goals • The Health Care Planning, Accountability Advisory Council’s Report to the General Assembly, April, 20132 • The Rhode Island Coordinated Health Planning Project Final Report, February 20133 • The Rhode Island Health Assessment & Health Improvement Plan; Rhode Island Department of Health, 2014 4 • 2015 Statewide Health Inventory Utilization and Capacity Study; Rhode Island Department of Public Health, 20155 In addition, The Applicant also reviewed certain other data and policy statements related to disparities and health inequalities in Rhode Island including the Director’s February 2016 guiding principles to ensure health equity and elimination of health disparities. These are touched upon here but are primarily discussed in response to Question 8, below. State Health Planning Policies Goals for future health systems development in Rhode Island are summarized on pg. 6 of the 2014 Assessment & Health Improvement Plan noted above. They are as follows: “To meet the community’s expectation for high-quality, affordable healthcare, the delivery system must: • Deliver healthcare according to the latest scientific evidence using current evidence-based guidelines whenever available. • Improve the quality, efficiency and accessibility of healthcare services. • Improve affordability by ensuring efficient utilization of healthcare providers and services. • Partner with the consumer in his/her healthcare. • Orient the system towards person-center care, with family involvement as appropriate. • Respond to the healthcare needs of the community with cultural and linguistic competency. • Improve the health status of the population.” 2 The Health Planning, Accountability and Advisory Council’s Report to the General Assembly; April, 2013 3 Rhode Island Coordinated Health Planning Project Final Report, February 2013 4 The Rhode Island Health Assessment & Health Improvement Plan; Rhode Island Department of Health, 2014 5 2015 Statewide Health Inventory Utilization and Capacity Study; Rhode Island Department of Public Health, 2015

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These goals follow from a series of analyses presented throughout the documents listed above. Several of these goals are pertinent to The Applicant’s proposal and illustrate how the proposed program will contribute towards certain key planning priorities of the state. 1. The Need to Address Overutilization of Hospital Services Virtually all of the documents cited above refer to the inefficient use of healthcare providers and contribute to rapidly rising costs. Unnecessary use of hospital services is chief among the causes of concern: “Hospital care is expensive and makes up the largest component of healthcare spending in the country. Because Rhode Island has such high rates of hospitalizations, this places a big toll on healthcare spending in the state.” (Health Planning Council’s Report, (item 1 above, Pg. 113) In reaching this conclusion, The 2013 Report to The General Assembly indicates that the possible savings to be gained by reducing unnecessary hospital admissions ranges from a low estimate of $12M annually to a high of $100M - depending on the manner in which capacities are reduced (pp. 4, 16, 17). This study further notes that “in five years the most likely estimates are that Rhode Island will have the equivalent of a full hospital in excess capacity.” (Pg. 6). Other studies concur as well that there is an overly heavy reliance on acute inpatient care in Rhode Island. The Rhode Island Health Assessment & Health Improvement Plan (item 3 above) finds an excessive rate of “preventable hospital days” occurs within the state for elders, i.e., the heaviest users of hospital services: “A preventable hospitalization is a measure of the discharge rate of Medicare enrollees, ages 65 to (with full Part A entitlement and no HMO enrollment) from hospitals for ambulatory care-sensitive conditions. Ambulatory care-sensitive conditions are those with which good outpatient care can potentially prevent the need for hospitalization, or with which early intervention can prevent complication for more serious disease (pg. 113). This Plan indicates that RI’s pattern of overuse lies outside the norm - noting that it is more common in this state that in almost every other state in New England. It states further that the state ranks 36th among all states in the country on this measure. (Pg. 114).

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PREVENTABLE HOSPITALIZATIONS Discharge rate among the Medicare population for diagnoses that are amenable to non-hospi (Data Year: 2011)

Preventable Hospitalizations 80 70.3

70.8

70

62.4 59.8

60

58.2 51.1

0

0

50

0..

-7a) 40 30 20 10 RI

CT

ME

MA

NH

VT

New England States US Average

Best State

Data Source: Dartmouth Atlas

Among the plan’s conclusions is that this situation arises from a failure to rely on effective “alternatives” (Pg. 114). Relationship to The Applicant’s Proposal: The proposed project directly addresses the state’s goal of reducing unnecessary hospitalizations and the related high cost of health services. Hospice care was, in fact, created by Medicare as an alternative to the use of typically intense inpatient care for end-of-life treatment. The essential purpose of hospice is to provide a less doleful and more dignified alternative to hospital based end-of life services. Hospice care furthermore transcends the important benefits provided to individual specific patients. It provides important gains for the healthcare system as well. These include reduction of costs and decreased reliance on inpatient hospital services. “In fully adjusted analysis of outcomes spanning the last seven days of life, subjects enrolled in hospice for one to seven days prior to death had significantly lower average total Medicare expenditures than matched controls ($4,806 versus $7,457, p < 0.01) (Exhibit 1). Consistent with those patterns observed in other enrollment periods, those enrolled in hospice during this period also had fewer hospital

8

admissions, intensive care unit admissions, hospital days, intensive care unit days, and in-hospital deaths.” 6 Each additional Rhode Islander served by the proposed program will constitute yet another individual and another family that has had the opportunity to choose a more dignified and less onerous end-of-life experience while garnering significant cost savings and diminishing reliance on institutional care. 2. The Need to Adapt to Changing Demographics The 2013 Final Report the Rhode Island Coordinated Health Planning Project (item 2, above) places the state’s rapidly changing demographics at the core of forces driving the need for health system change: “Changing demographics is an overarching theme which will impact all aspects of health service delivery and inpatient bed need in the future (pg. 21). Virtually all of RI’s planning documents identify the aging of the population, increasing diversity and the prominence of socio-economic differences as major factors driving misalignment between health services and population needs. This common phenomenon appears throughout the country to varying degrees. It reflects the fact that our health system evolves too slowly in response to a constantly changing population and continually changing needs. This constant gap “adds unnecessary costs to the system” (Item 1, above - pg. 16) and poses a broad range of negative consequences for special populations that heavily impact racial and ethnic minorities, the elderly and certain socioeconomic groups.

6 Kelly et al, Hospice Enrollment Saves Money For Medicare And Improves Care Quality Across A Number Of Different Lengths-Of-Stay Health Affairs 2013 Mar; 32(3): 552–561.

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A multitude of key examples of this phenomenon are cited in the 2014 Assessment & Health Improvement Plan of the Rhode Island Department of Health: Evidence of Populations with Unmet Health Needs in Rhode Island Group Measure African • A higher percentage report having no health insurance Americans and no specific source of ongoing healthcare compared to the overall state and the White populations. • A higher percentage report being unable to afford a doctor at some point in time than of the overall state and the White populations. • A lower percentage women aged 40+ report not having a mammogram in the past two years compared to women in all other populations. Asian and • A higher percentage of Asians and Pacific Islanders Pacific Islanders report having no routine checkup within the past year compared to the White and the overall state populations. • Nearly twice as many Asian and Pacific Islanders report that they could not afford to see a doctor within the past year than the White population. Hispanic / • A higher percentage of Hispanic/Latino adults report Latinos having no health insurance compared to all other groups and the state population overall. • A higher percentage of Hispanics/Latinos report having no ongoing source of healthcare compared to all other groups and the state population overall. • A higher percentage of Hispanic/Latino women report not having a pap test in the past three years compared to women in every other population. Native • A higher percentage of Native American adults report Americans being unable to afford to see a doctor in the past year compared to adults in the White and the overall state populations. • The percentage of Native Americans having no health insurance is more than two times that of the overall state. • Population and nearly four times that of the White population.

Source Page 154, 2014 Assessment & Health Improvement Plan

Page 158, 2014 Assessment & Health Improvement Plan Page 164, 2014 Assessment & Health Improvement Plan

Page 166, 2014 Assessment & Health Improvement Plan

Relationship to The Applicant’s Proposal: As the statements above clearly indicate, inequalities in access to outcomes from health care service clearly exist in Rhode Island. While the proposed program does not address many of the specific types of services cited above, it clearly and forcefully addresses the issue central to them all. That is, the issue of inequities in the delivery of health care.

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As stated in response to Question 1 above, the Applicant believes that “no health service is good enough unless it is accessible to all of those in need.” Ensuring that our services are better than “good enough” is core to our mission. Disparities in Rhode Island are varied and differ across all special populations. As noted above, the proposed program incorporates specific, focused efforts to ensure accomplishment of this goal. These efforts vary by population in respect to the cultural and other causes the underpin them. A key component of our program based upon Continuum Care’s experience in California, will be to engage with each disparity group, apply and adapt tools that have been effective elsewhere and ensure that those who would choose hospice services have the knowledge and access to do so. As we note in the introduction above, we hope the tools we apply with respect to hospice care will stimulate similar activity with regard to other types of services. 3. The Need to Address Services for those with High Prevalence Diseases Seniors are by far the most disproportionate consumers of health care service. With respect to the dying, seniors obviously represent the overwhelming greater percentage. Rhode Island policy makers express clear concern about the distorting impact on the health system of growth in seniors as a proportion of our population: “Rhode Island’s population has fallen (but) the need of residents over 65 years old overwhelms the loss in demand due to a falling population. Thus, the net effect on projected hospital bed need in both the “population growth” and “population decline” scenarios is positive.7” - Advisory Council’s Report to the General Assembly (Item 1, Pg.10) As this finding demonstrates, the growth in the senior population has a clear and distorting impact on the system of delivery and array of area-wide health services. In this particular case, its effect is to drive continued use of costly inpatient care. It also contributes to the prevalence of those disease that are the major causes of death in the state: “Rhode Islanders are dying of heart disease, lung cancer, stroke, and Alzheimer’s disease. Minorities, including Hispanic/alone, heart disease (32%) and cancer (29%) caused the death of 61% of Rhode Islanders. Other major causes of death were chronic lower respiratory disease (6.75%), unintentional injuries (6%), stroke (6%), and Alzheimer’s disease (4%).” 2014 Assessment & Health Improvement Plan (Pg. 22) A high proportion of older persons, in combination with high prevalence of potentially fatal diseases, has a synergistic effect on the need for hospice services. A clear example of this is the combination of an aging population and the high rate of cancer mortality. Health planning documents in Rhode Island frequently point to the state’s high rate of cancer. The Health Assessment and Improvement Plan (item 3, above) notes that “cancer is the second leading cause of death in Rhode Island, accounting for 23% of all deaths in the years 2006-2010.” (Pg. 127). While the solution to this illness lies in prevention and cure, it 7 That is, tends to cause utilization to increase and support inappropriate utilization when alternatives are lacking.

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nevertheless accounts for a large percentage of hospitalizations, including hospitalization of persons with terminal disease. Relationship to the Applicant’s Proposal: The proposed program will help address the compound impact of aging and disease prevalence in Rhode Island. While hospice is obviously not a disease prevention program, it is designed to deal effectively and economically with the unfortunate outcomes that frequently result for many people each year. It provides a line of defense against prolonged intensive but futile maintenance in an acute care facility that robs them of their dignity. At least 50% of the population of the United States have come to adopt this philosophy and this number continues to grow by year. It is beneficial to these persons to make hospice care as prominent, accessible and available as possible. It is beneficial, that is, to these individuals themselves, to their families and for the efficiency and effectiveness of the health care system overall. The proposed program will clearly help to minimize the effects of aging and disease on residents of RI and their healthcare system. In addition, based upon its California experience, it hopes to educate the minority populations that have historically faced barriers to hospice services to ensure the most efficient, quality services at a very difficult time for the patient and family members. 7.) Please discuss the proposal and present the demonstration of the public need for this proposal. Description of the public need must include at least the following elements: A. Please identify the documented availability and accessibility problems, if any, of all existing facilities, equipment and services available in the state similar to the one proposed herein:

Name of Facility/ Service Provider Beacon Hospice, an Amedysis Company Gentiva Hospice aka Kindred aka Odyssey Hope Hospice and Palliative Care of RI Hope Hospice and Palliative care- South office Hospice at VNS of Newport and Bristol Counties VNA of Care New England VNA of Rhode Island- Hospice

Distance Documented Documented from List similar type of Availability Accessibility Applicant Service/Equipment Problems Problems (miles) Hospice Care No No 4.6 Hospice Care Hospice Care

No No

No No

10.1 2.6

Hospice Care

No

No

31

Hospice Care Hospice Care Hospice Care

No No No

No No No

31.6 12.1 9

The Applicant has no documentation of inefficiencies or access difficulties at any of the programs listed above. Nevertheless, The Applicant notes that Rhode Island has a relatively small ratio of total hospice providers to the annual patient load. See Table at page 18. This ratio can be conducive to bottlenecks and roadblocks at periods of especially high volumes.

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The establishment of an additional program to serve state residents would ensure against such difficulties and provide more flexibility and resilience in the system. Furthermore, as noted, our proposal includes a specialized and intensive focus on the unmet needs of minority communities that have a documented lower level of access to hospice services in Rhode Island. This focus will be based upon Continuum Care’s demonstrated expertise and experience in serving the African American and other minority communities in Oakland, California. The Applicant will use this experience to serve the unmet needs of all special populations in Rhode Island that suffer limited access to hospice care. B. Please discuss the extent to which the proposed service or equipment, if implemented, will not result in any unnecessary duplication of similar existing services or equipment, including those identified in (A) above. Answer: The mission of Continuum is to provide home-based hospice services to our clients at their places of residence. To the extent that clients require brief general inpatient care (GIP) for acute symptom management, Continuum will continue to meet their needs in that temporary setting. We project that such episodes will be infrequent, amounting to no more than 1% of our total volume in any one year. Continuum expects to serve approximately 250 patients in its first full year of operation achieving an average daily census of 40 patients by the end of that year and providing over 7,400 days of hospice care. Approximately 84% of these days will be provided in the patient’s own residence, 15% in long term care settings (SNFs) and 1% in hospital settings. As noted above, no more than 1% of these patient days will be classified as General Inpatient Care or GIP and these will be provided in the SNF or acute hospital setting.

Existing Hospice Services In 2014, the RI Department of Health conducted its most recent survey of hospice care in Rhode Island. A summary of the results of this survey is provided at Tab 2. This data indicates that the number of persons using hospice continues to increase in Rhode Island, especially for the category of home based care. By contrast, this data shows declines in the use of hospice care provided in institutional settings (SNF’s). The data, itself, is unclear regarding the extent to which this decline is due to changes in the actual number of hospice patients in SNF’s or in the average number of days provided per client. Nevertheless, total hospice days provided in SNF’s in Rhode Island dropped by 15% between 2011 and 2014 and is projected to drop further as discussed in response to Question 7c below.

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The Applicant believes that the decline in SNF-based hospice days is the result of long standing efforts by regulators to restrain the use of the SNF setting.8 Industry concerns about SNF-based hospice care have existed for several years, driven by fears that it is prone to unnecessary use of care and excessive lengths of stay.9 Such concerns have caused many providers to re-evaluate delivery of care the SNF setting. This, in turn, has discouraged expansion and even encouraged reduction of care provided at SNF’s. See Table on page 20. The Applicant supports these changes in the industry. While clearly there are many patients already residing in SNF’s that would benefit from hospice care, these patients must, however, be appropriately selected.10 Future Changes in Volumes The Applicant notes that the recent contraction in SNF based care in Rhode Island has not impacted the home setting. Services provided in the home expanded during the period of the Department of Health survey (2011-2013) by more than 10%. See Tab 3. The Applicant projects that this growth will continue throughout the coming years and will have increased very substantially by 2018, the first full year of operation for the proposed program. (See Table on page 15 entitled “Projected Change in Hospice Volumes 2011-18”. This growth is based upon continued expansion of the existing base of hospice users in Rhode Island as well as the impact of improving access for underserved populations. These populations are prevalent throughout Rhode Island and experience a highly limited use of hospice in comparison with the majority population as indicated below. Differences in Access by Race 2014 (1)

White African Am Asian Hispanic Total

(2)

(3)

(4)

(5)

(6)

(7)

RI Pop '14 by Race

% of RI Pop '14

Actual MDCR Hospice Users '14

Actual Use Rate ‘14

Total Potential Users

Potential New Users

74%

5,510

0.71%

8%

135

0.16%

589

454

4% 14% 100%

22 185 5,852

0.06% 0.12%

268 1074

246 889 1,589

780,604 83,448 38,027 152,107 1,054,185

---

---

(2) Source US Census Bureau, American Factfinder Data Portal, Multi-year Report, - Census.gov (3) Percent of Total Population by Race; = (2) for each race / total (4) Actual Medicare Hospice Users 2014, Source: CMS Public Use Files (PUF) online portal - CMS.gov; “Medicare Hospice Use & Spending, 2014” (5) Rate of Actual Hospice Use 2014 by Race; = (4) / (2) for Each Race (6) Total potential Users if each Group Use Hospice at White Rate = (5) (for White) * (2) for Each Race (7) = (6) minus (4) for Each Race

8

Medpac, 2015 Report to Congress, Chapter 12 pp 4-5 9 MEDPAC, Report to Congress, Chapter 12: Hospice Services, pp 4-5 10 Health Care Providers Compliance Guide, The Bureau of National Affairs Inc,, Bureau of Hospice & Nursing Home Relationships Chapt 1815, pg. 145

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The Applicant included the impact of broadening access to these groups in its projections of volume growth expected by 2018, the first full year of operation of the program. These projections are discussed further below but are summarized in the following table: Projected Change in Hospice Volumes 2011-18 Home SNF Inpatient Total Setting: Vol 2011 Proj. Vol '18 Proj. Change % Change

135,193 208,999 73,806 55%

205,053 171,849 -33,204 -16%

10,991 12,927 1,936 18%

352,182 393,775 41,593 12%

Source: Applicant's projections, Tab 3.

Given the combination of growth trends and the reduction of barriers to special populations, the Applicant’s projected volume of approximately 7,400 patient days in 2018 is well with the range of growth in projected service needs in the state - constituting less than 10% of projected growth in home based services and less than 17% of growth in all hospice care. In summary, the proposed program will serve a patient base that is well within existing growth parameters for hospice care in Rhode Island. Moreover, The Applicant will specifically reach out to patients who are not presently included in the historical hospice user population in the state including the underserved minority populations. These considerations clearly demonstrate that the proposed program will have no volume related or financial impact on any existing provider of hospice care in Rhode Island. C. Please identify the health needs of the population in (C) relative to this proposal. Answer: Average life expectancy in RI for all residents is presently 79.9 years compared with the highest state (Hawaii, 83) and the lowest (Mississippi, 75)11 At least three of the dominant disease groups affecting population health in Rhode Island occur at rates well in excess of the national average: High Prevalence Diseases In RI RI Rate US Rate Cancer 212.5 185.6 Heart 221.9 192.7 Disease Diabetes 29.4 24 Rates per 100k pop., National Vital Statistics Report V65 No. 4

11 CDC, Wonder Database

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According to the CDC, approximately 7,180 persons died in Rhode Island in 2014. (See table below.12) As in most other states the greatest percentage of these deaths (over 60%) were from heart disease and cancer - in roughly equal amounts. Rates were particularly high in relation to other states for deaths from cancer or accidents and somewhat lower for other causes. While progress will continue to be made in efforts to prolong life and reduce annual mortality rates across the US, death will continue to be a fact which confronts us all. Rhode Island Deaths 2014

Cause

State State Rate Rank

Number

US Rate

1. Heart Disease

2,364

163.4 25th

169.8

2. Cancer

2,326

174.6 13th

163.2

3. Chronic Lower Respiratory Diseases

476

34.7 43rd

42.1

4. Accidents

537

45.3 20th

39.4

5. Stroke

397

27.7 47th (tie)

36.2

6. Alzheimer’s Dis.

346

22.3 28th

23.5

7. Diabetes

258

18.9 38th

21.2

195

12.9 41st

15.9

149

10.4 35th

13.2

132 7,180

12.2 38th

12.6

8. Influenza / Resp. 9. Kidney Disease 10. Suicide Total

Source: CDC

Rhode Islanders, like many US residents, rely heavily on hospice in their last weeks of life and hospice care has evolved in Rhode Island at a pace similar to that of other states. Before the development of hospice programs persons with terminal illness tended to die in hospitals subject to heroic but futile measures to delay the inevitable. This manner of death was unpalatable to many who preferred to end their life in less pain and discomfort and in the presence of those whom they loved. Hospice care began in the last quarter of the last century as a grass roots movement for persons seeking a better way to spend the last weeks of life. Passed into law as a Medicare 12 National Vital Statistics Reports, Vol. 64, No. 6, Supplemental Tables; 2013

16

benefit in 1982, hospice use has grown continually and remarkably ever since. Between 1982, when the hospice benefit was established and the year 2000, volumes virtually doubled each year reaching over one half million persons annually by the end of that period. It seemed at the time that the hospice philosophy was turning into a broad social movement. This was borne out over the next ten years when the number of hospice users increased by another 156%. Since that time more and more people have chosen hospice over acute care hospitals for their end of life care and hospice use has continued to increase at rates similar to those of the previous decade.13 Rhode Island has developed a well-functioning system of hospice care that compares well to other parts of the country. The following Table is based on public use data available from the federal Centers for Medicaid and Medicare and provides an idea of how RI hospice care compares. Comparison RI Hospice Industry w/ Other States -2014 RI US Average High / Low Range Clients / total providers 843 403 122-2,735 Total days / total clients 59 68 44-101 Total $ / client $10,579 $10,804 $6,929- 14,200 Low Users (<7 days) 33% 26% 11% - 34% Long Users (>180 days) 11% 18% 7-19% Avg. Age 84 82 79-84 Dx Cancer 27% 30% 24% - 40% Dx Dementia 26% 20% 9% - 30% Dx Stroke 7% 7% 3% - 11% Dx Cardiac 16% 18% 13% - 26% Dx Respiratory 9% 11% 5% - 14% Source: Public Use Files, 2014; CMS

Continuing rapid growth of hospice care is driven from two perspectives –both of which are firmly evidenced in Rhode Island. The first and most important of these is the continually growing preference among the population to address end-of-life issues in a dignified manner and in the company of their loved ones. Rhode Island performs well in this regard with over 50% of terminal Medicare beneficiaries choosing the hospice option. One indicator of the progress made by Rhode Islanders is the fact that the state exceeds the national average on the ratio of hospice users to total Medicare enrollees. This is a key measure used by CMS to judge progress across the country. Rhode Island, with a ratio index of 2.96% stands above average and ranks very high. While such statistics help gauge accomplishment, they fail to indicate how much more needs to be done. There are, for example, many several states in which this number is considerably higher. It’s worth noting that if RI’s ratio were as high as Arkansas, the highest in the nation, the number of persons using hospice care in RI would virtually double. 14

13 Statistics in this paragraph are from The National Association of Hospice and Palliative Care’s two publications: Growth in US Hospice Programs: 1974--2014. See graph and source attached at Tab 4. 14 See Tab 5.

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In other words, despite good numbers, improvements must still be made in Rhode Island as in the nation as a whole. The fact is that as many as 80% of all Americans with chronic illnesses express a preference to die at home and / or avoid hospitalization at the end of life.15,16 Interesting as well, this percentage may be as high as 88% among physicians.17 The extent to which patients choose the hospice option is related to their knowledge about it and the degree to which access is hindered or facilitated by the health care system. The primary reasons cited by terminal patients for not selecting hospice are misperceptions about hospice, objections to a particular hospice provider or concerns over administrative “systems issues”.18 All of these issues are amenable to improved education, facilitation and better coordination of care. These are all processes that are continually undergoing development and improvement. As change is made, the percentage of the population that chooses the hospice option will continue to steadily increase. The second perspective driving hospice use is a more hard-nosed economic view. At this time of rapidly escalating health care costs, hospice use produces enormous savings over the hospital based alternative to end-of-life care. The continued support for the program by CMS for over 30 years speaks for itself. Savings have been estimated at $2,000 to $6,000 per patient depending on length of hospice use.19 On a national scale these saving become very impressive. One 2015 study found saving as high as $2.43 billion if hospice care was provided effectively to terminal cancer patients across the nation.20 As rate payers and governments have taken notice of these savings, they have and will continue to take steps to ensure an adequate supply of hospice services. Projected Statewide Use of Hospice Services The Applicant utilized a two-step process to project the hospice care volumes through 2009. In the first step The Applicant calculated future statewide volumes based on recent historical use patterns. This approach took into account recent annual increases and declines in volumes, identified rates of change and trended these forward to 2019. In the second step, The Applicant calculated the additional units of hospice care that would be required if minority populations were able to access hospice at the same rate as the majority. As noted, providing access to underserved groups is a key element of The Applicant’s service model. Inequalities in access clearly exist in Rhode Island as elsewhere. Having faced barriers to the use of hospice care, the needs of special populations cannot not be adequately reflected in historical use rates and would not be accounted for in any estimates based on these rates. To adjust for

15 Where do Americans Want To Die; Palliative Care, Stamford School of Medicine, https://palliative.stanford.edu/home-hospicehome-care-of-the-dying-patient/where-do-americans-die/ 16 It’s time for Americans to start thinking about how they wish to die, Quartz, Feb 2014 – citation from The Dartmouth Health Atlas 17 ibid #15 18 Vig, et al, Why Don’t Patients Enroll in Hospice? Can We Do Anything About It? Journal of General Internal Medicine, Oct 25, 2010. 19 Kelly, et al, Hospice Enrollment Saves Money For Medicare And Improves Care Quality, Health Affairs, March 2013 555-561 20 Powers et al, Cost Savings Associated with Expanded Hospice Use in Medicare, Journal of Palliative Medicine, May 2015, 400401

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this, The Applicant supplemented the results obtained in Step 1 with additional estimates of the unmet needs of low access groups. Each of these steps are described below. 1. Historical Trends: The Applicant used The Department of Health’s 2014 survey of all RI hospice care providers as a basis for developing forecasting trends. This survey provided actual hospice volumes by provider expressed as total of “days of service” in each of the “home-based”, “SNF” and “Inpatient” settings. The survey also included data on the total numbers of persons served by hospice programs (combined) across all settings. This data covered the period 2011 through 2013. The Applicant augmented the Department’s survey with additional data of the same type for 2014. This data was obtained from CMS. (Source: CMS Public Use Files for Hospice Care 201421). The addition of this information enabled The Applicant to utilize a longer and more recent period to serve as a basis for projection. Using, thereby, trend data for 2011-2014, The Applicant calculated average rates of change in volumes for each of the three hospice service settings and for the total numbers of persons served per year. These rates were used to project both hospice days and patients to 2019 with results as follows: RI Hospice Days Projected: 2018-2019 Projected Volumes Setting: Year: 2018 2019 2018 2019

Home

SNF

Inpatient

Total Days

187,185 153,912 11,578 352,675 196,267 147,842 11,664 355,773 Percent Shift in Use of Settings from 2011 38% -25% 5% 0% 45% -28% 6% 1%

Total Users 7,149 7,614 -

In addition to demonstrate strong growth hospice care, these results also show a sizable shift in the relative proportions of services - away from the SNF to the home setting. This “rebalancing” parallels patterns occurring in other states as well. It has been driven nationally by long standing concerns that the SNF setting was prone to overutilization and unnecessarily long length of stays. This concern appears to have been a factor in the HSC’s decision in 2014 to deny the request by Athena Hospice to expand hospice care at that time. As the table above demonstrates, “At-home” care continues to increase substantially in terms of both absolute numbers and in relation to care provided in SNF’s. Use of the SNF setting continues to decline. This pattern of service growth is completely consistent with Applicant’s mission of the proposed program which emphasizes care in the home-based setting. 21

Hospice Beneficiary Utilization Files; ALL STATES Medicare Hospice Use and Spending by State Aggregate Report, CY 2014; CMS Chronic Condition Data Warehouse

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2.

Impact of Access to Underserved Populations: The second component of The Applicant’s projection addresses elimination of inequalities in access to hospice care by special populations. This component relies on the concept expressed in the Department of Health’s 2014 Vision Statement: “Every Rhode Islander should have access to high quality, affordable healthcare delivered at the most appropriate time and place.”22 It utilizes the assumption that availability and access should be uniform across all populations as needed – including populations with special needs. a. In order to estimate the unmet need for hospice care by special populations, The Applicant assessed the rate at which the populations have access to hospice services and the degree to which it differs from that of the majority, white population. Because sufficient data is not available to perform this analysis for all populations affected by disparities, The Applicant limited this review to three very large groups for which data is readily available, i.e., African Americans, Asians and persons of Hispanic origin. b. The Applicant performed the following steps in completing this analysis: i. The Applicant obtained population data from the US Census Bureau on the size of the Rhode Island population and proportions represented by each of these three groups. ii. Secondly, The Applicant obtained current levels of utilization for each group – including the majority population – from CMS. Once obtained, the numbers of hospice users for each group was divided by the population of that group to obtain the annual use rate per 1,000 persons. These rates were then compared to measure the disparity in use among the different groups. As can be seen on the Table below, the level of disparity present is striking: While White Rhode Islanders access hospice at the rate of 7.1 persons per thousand population, rates are dramatically lower for other groups including African Americans (1.6), Asians (0.6) and persons of Hispanic origin (1.2).

iii. Finally, The Applicant determined the number of persons in each of the latter groups that would use hospice care if it were available to them to the same degree and in the same manner as the majority population. This was done by applying the “Majority Use Rate” of 7.1, to the each of the special populations and deducting the small number of hospice users (from these groups) from the resulting totals. As the Table below reveals, an additional 1,612 individuals from minority populations would have used hospice care if they 22

RI Department of Health, 2014 RI Health Assessment and Health Improvement Plan, pg. 6.

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accessed it at the same rate as the majority population. This would have represented an increase by more than 25% of the total patients statewide utilizing hospice care.

Projected Unmet Need for Hospice Care Among Certain Special Populations (1) (2) (3) (4) (5) (6) (7) Rate Hosp % /1K Users Hosp Pop Proj Unmet Population Group Population % '14 Users 2014 Use Need White African American Asian Hispanic / Latino Total RI Pop

780,604 83,448 38,027 152,107 1,056,298

74% 8% 4% 14% 100%

5,574 135 22 185 5,916

94% 2% 0% 3% 100%

7.1 1.6 0.6 1.2 5.6

-596 272 1086

461 250 901

Unmet Need / Special Populations 1,954 1,612 * Some special population not included; total pop = 2,000 +/Notes: (1) Column 1:The population for each group in Rhode Island, 2014 (2) Column 2: The % of the total population represented by each group (3) Column 3: Hospice Use in 2014; source: CMS Public Use Files (4) Column 4: The percentage of the total annual hospice use represented by each population (5) Column 5:The current rate of hospice by each population group per 1,000 pop (6) Column 6: The number of hospice users for each group if used at the majority rate (7.1) (7) Column 7: Column (6) minus Column (3)

As the Table above demonstrates, successfully creating access to special populations adds a very large new component to the service base for hospice care in Rhode Island and accelerates the growth of this market considerably by both the key measures of admissions and days of care.

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Projected Unmet Need for Certain Special Populations Thru 2020

Year: 2014 2015 2016 2017 2018 2019 2020

African American Asian Hispanic / Latino Total Admits Pt Days Admits Pt Days Admits Pt Days Admits Pt Days 461 11,522 250 6,238 901 22,528 1,612 40,288 463 11,579 251 6,270 906 22,641 1,620 40,490 465 11,637 252 6,301 910 22,754 1,628 40,692 468 11,695 253 6,332 915 22,868 1,636 40,896 470 11,754 255 6,364 919 22,982 1,644 41,100 473 11,813 256 6,396 924 23,097 1,652 41,306 475 11,872 257 6,428 929 23,213 1,660 41,512

Days Projected @ ALOS 25 days Population Growth Projected at 0.5% per year

This data clearly indicates that the equalization of access to hospice care across populations in Rhode Island would have a very substantial impact on the need for these services – resulting in an overall statewide increase in average daily census of (41,100 / 365) or more than 110 patients per day by 2018. Total Projected Statewide Volumes After completion of Steps 1 & 2, The Applicant combined the results to obtain a described above to obtain at total statewide projection of hospice use in 2018 and 2019. In doing this, The Applicant assumed that the minority use would reflect the same proportions (or distribution across different settings) as current users of hospice. Given this assumption the total projected volume need for hospice services in Rhode Island is as follows:

Total RI Hospice Services Projected: 2018-2019

Setting:

Home

SNF

Inpatie nt

Total Days

Total Users

2018 Per Current Trends Sp. Pops. Included Total 2018

187,185 21,814 208,999

153,912 17,937 171,849

11,578 1,349 12,927

352,675 41,100 393,775

6,301 1,644 7,945

2019 Per Current Trends Sp. Pops. Included Total 2019

196,267 22,787 219,054

147,842 17,165 165,007

11,664 1,354 13,018

355,773 41,306 397,079

6,712 1,652 8,364

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D. Please identify utilization data for the past three years (if existing service) and as projected through the next three years, after implementation, for each separate area of service affected by this proposal. Please identify the units of service used. Actual (last 3 years) N/A Hours of Operation Utilization (#) Throughput Possible (#) Utilization Rate (%)

Projected Hours of Operation* Utilization** Throughput Possible Utilization Rate (%) 1.

FY____

FY ____

FY ____

FY 2017 FY 2018 FY 2019 8 am–5 pm 8 am–5 pm 8 am–5 pm 610 7,447 16,906 641 7,819 17,751 95% 95% 95%

* These are regular office hours. Services are provided 24/7, 365 days per year, as needed. **Patient visits

The units listed in the “Utilization” row of the table above, represent the annual total of all patient visits (including each level of hospice care) projected for the year for which they are indicated. The units for “Throughput Possible” measure the maximum annual total of all patient visits (including each level of hospice care) that can be provided based upon projected staffing for that year. This is an indicator of capacity. The Applicant maintains a capacity that is slightly greater than existing volume to provide an additional margin of staff to accommodate new patients and emergencies. The Applicant projects Continuum Hospice of Rhode Island will begin operations in the latter half of 2017 provided that the pending CON request is approved. This initial period prior to the beginning of 2018 will be devoted to start-up preparations and securing CMS certification. CMS requires hospice providers to be actively engaged in serving a limited number of patients in the time leading up to and during the certification inspection. While this is an absolute requirement, the provider cannot charge for these pre-certification services. The utilization indicated for 2017 in the Table above represents these limited pre-certification services. The Applicant does not bill for these services and, therefore, no revenues are recorded for this year on the Pro Forma table provided in response to Question 18. Continuum expects to receive its certification by 2018 and will begin providing services in earnest at that time. The Applicant therefore projects more rapid yet still moderate growth for 2018 and 2019 as indicated in the table above. The rate of growth projected in these years is in part determined based on our experience on the time it takes to properly develop and implement outreach programs to special populations.

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E. Please identify what portion of the need for the services proposed in this project is not currently being satisfied, and what portion of that unmet need would be satisfied by approval and implementation of this proposal. Answer: The Applicant defines “unmet need” as the difference between the volume of services required by a particular population and the supply of services available to them at some point in time. No indication of current service supply is publically available after 2013, i.e., the final year addressed in the 2014 Health Department survey. While, as our projections show, volume levels have been growing and will continue to grow, The Applicant cannot determine the extent to which existing providers have been able to adequately accommodate this growth. Moreover, for a service like hospice care, use of existing volumes as a proxy for future need is a poor way to assess the adequacy of supply. Based on the continual and virtually uninterrupted growth in annual cases nationally, volumes for any one particular year understate future need by definition. The Applicant has therefore identified three alternative approaches to the identification of unmet need. These are as follows: 1. Underserved Populations: As discussed, members of underserved populations who are Medicare beneficiaries include a measureable number of persons whose needs for hospice care go unmet from year to year. Our projections (above) indicate that these groups will experience an unmet need of 41,306 days of hospice care during 2019. This represents a formidable expansion of the hospice population in the state – increasing the number of hospice patients by 25% and requiring accommodation of more than 110 additional patients per day. By 2019, as reflected in our response to Question 7d, Continuum will provide 16,906 patient days of hospice care to Rhode Islanders. Furthermore, we expect that 50% of these or 8,453 days of care will be provided to members of underserved populations. Therefore by using “disparities in access” as a measure of unmet need, we expect to provide for (8,453 / 41,306 =) 20.5% of this need in 2019 and a greater percentage in the future. 2. Acknowledging Population Preferences: A second way to estimate unmet needs in Rhode Island is to consider the end-of-life preferences of Americans in general. Efforts to study these generally find that 70-80% of the population prefer to die at home and avoid hospitalization at the end of life. (See references / footnotes 15, 16 & 17 above.) According to a periodical published by Stamford University on Palliative Care: • Studies have shown that approximately 80% of Americans would prefer to die at home, if possible. • Despite this, 60% of Americans die in acute care hospitals, 20% in nursing homes and only 20% at home.

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If there is any lesson to be learned from the 35 years of uninterrupted growth in the use of hospice care, it is that we haven’t yet reached a balance between supply and demand. At present, the national average for hospice use among Medicare beneficiaries is approximately 45%, while the Rhode Island average is 54%. Nevertheless both of these measures are a far cry from the 70% - 80% percent found in studies of patient preference. This shortcoming has significant financial consequences as well as implications for quality of care: More than 80% of patients say that they wish to avoid hospitalization and intensive care during the terminal phase of illness, but those wishes are often overridden by other factors. If more intense intervention does not improve life expectancy, and if most patients prefer less care when more intensive care is likely to be futile, the fundamental question is whether the quality of care in regions with fewer resources and more conservative practice styles is better than in regions where more aggressive treatment is the norm. While it may be unrealistic to expect to achieve a stable balance between supply and demand very soon, the strong preference of the population for the concept of hospice still stands as a measure of future need. It would be rational set and work towards reasonable interim targets. If for example Rhode Islanders adopted the goal of increasing the percentage of hospice users by an additional 1% per year, one would identify an unmet in 2019 for more than 10,000 additional days of care. The proposed project would meet over 80% of this need. 3. Improving Existing Services: A third perspective from which to evaluate unmet need is that of existing patients and any significant opportunities for improvement in their care. There are in fact identifiable groups of patients for whom appropriate care requires expansion of the services they receive. To the extent that such improvements require additional days of care, these groups represent a quantifiable source of “unmet need”. One substantial group of such patients are described as “Late Admissions.” The Dartmouth Health Atlas describes Late Admissions as hospice patients who have “enrolled in hospice within three days of death.” Late enrollment is a quality measure of hospice care that is tracked by the state as an indicator of state performance. One 2014 article studies the effects of late enrollment on hospice patients suffering from cancer and their families. The following is among its findings: “Systematic strategies to overcome the barriers related to perceived late referrals are necessary. Some studies demonstrated that a shorter length of hospice enrollment was associated with an increased risk of major depressive disorder in family caregivers, less satisfaction with hospice care of family caregivers, and inadequate symptom management. Another recent study clarified that patients who received less than a week of hospice care had the same quality of life as patients who did not receive hospice care at all.” According to the Dartmouth Health Atlas, patterns of hospice use in Rhode Island are associated with a very high rates of late enrollment. Rhode was ranked third highest in the

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nation with a late enrollment rate of 20.8% of all patients. This level of late admission to hospice effects a population of approximately 1,653 patients based on a projected volume of 7,945 statewide in 2018. As reflected in the quotation above, the benefits received by these patients a significantly diminished – if experienced at all. Although hospice care in Rhode Island performs very well on many quality measures, the frequency of late admissions clearly hinders the effectiveness of the system for patients. Elimination of this deficit would result in the need for additional patient day volume of (3 days X 7,945 patients) 23,835 days of care. From this perspective, The Applicant would be able to meet approximately 35% of this unmet need in 2019. F. Please identify and evaluate alternative proposals to satisfy the unmet need identified in (E) above, including developing a collaborative approach with existing providers of similar services. Answer: The Applicant’s model for the provision of hospice care, as described above, makes special efforts to work with special populations to remove obstacles for those persons who choose the hospice alternative. As described above, Continuum Care has developed, and continues to develop and apply concrete tools and techniques to achieve this goal. This, as noted, includes the development of a diverse workforce that reflects the presence of special populations within the area to be served. In the course of implementing this model at our Oakland facility, Continuum Care has gained valuable experience in knowledge related to the integration of diverse populations as well as the provision of high quality hospice care within all communities. These tools and techniques cannot be separated from the process of providing care itself. That is the sensitivities and techniques necessary for outreach to special populations must carry forward into the care setting in order to both improve access and the quality of the care provided. The Applicant considered but rejected the possibility of partnering with one or more area providers to extend our impact into Rhode Island. This alternative was however rejected because it would, of necessity, dilute our management of the care process from the patient outreach to the actual provision of care in the appropriate setting. As noted above, however, the Continuum Care model incorporates collaboration with other types of care providers frequently involved with hospice patients. This included providers that may be presently serving a client even when we provide the particular service involved. Examples include, physician services, various special therapies (e.g., physical and occupational therapies) and emotional counseling. Continuum works close to coordinate with the patients’ existing providers or any provider the patient may choose. This of course includes as well organizations that may provide domicile services such as assisted living or long term care. This level of coordination is inherent in the Continuum model. We strive to achieve it because it is conducive to higher quality care and lower costs.

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G. Please provide a justification for the instant proposal and the scope thereof as opposed to the alternative proposals identified in (F) above. Answer: The project is projected to address a significant portion of the unmet need for hospice care in Rhode Island by the year 2018. Moreover, the pattern of this care will be primarily in the setting of the patient’s home – helping to reverse a trend that was developing an over-reliance on the provision of hospice care in the SNF setting. This trend was identified the Health Services Council report on the 2014 request by Athena Hospice Services. Moreover, Continuum’s special goal of vigorously providing outreach to special populations responds to a strong need in Rhode Island. As discussed below, the state’s population while diverse, also suffers from the disparities in health care among many groups for many services – including access to hospice care. This element of outreach to persons with unmet needs combined with the projected modest size of The Applicant’s proposal demonstrate that it will not have adverse impacts on existing organizations while responding to significant needs.

HEALTH DISPARITIES AND CHARITY CARE 8.) The RI Department of Health defines health disparities as inequalities in health status, disease incidence, disease prevalence, morbidity, or mortality rates between populations as impacted by access to services, quality of services, and environmental triggers. Disparately affected populations may be described by race & ethnicity, age, disability status, level of education, gender, geographic location, income, or sexual orientation. A. Please describe all health disparities in the applicant's service area. Provide all appropriate documentation to substantiate your response including any assessments and data that describe the health disparities. Answer: Rhode Island’s Health Assessment and Annual Improvement Plan (2014) provides the most comprehensive recent review of health disparities in the state. This document draws an important distinction between the underlying causes of disparity and the actual impact they have on the populations affected. The Applicant has inventoried the full range of the items identified in this plan and categorized them at Tab 6. As review of Tab 6 illustrates, both the varied causes of disparity and their impact on health outcomes are numerous and significant throughout the state. The following examples illustrate this broad range:

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1. Rhode Island has a diverse population with significant socio-demographic and cultural variation. This diversity results in differences in lifestyles as well as access to health services. The resulting impact on health status and health outcomes is profound in many cases. The Assessment and Annual Improvement Plan identifies important several different populations affected by these disparities including racial and ethnic groups, genders, persons with disabilities, persons with different education levels, socio-economic characteristics and age. 2. The following table provides a current overview of the groups most frequently associated with variations in health care in Rhode Island in comparison with their presence among the US population as a whole. Categories in which these groups are larger in RI than in the country as a whole include persons without a bachelor’s degree, persons <65 who are disabled, and persons in poverty. While otherwise the Rhode Island population is reasonably consistent with US averages, the plan indicates that significant levels of disparity are still present in all categories.

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US

RI

Black or African American American Indian Asian Hawaiian, Pacific Islander Two or More Race

13.3%

7.9%

1.2% 5.6% 0.2%

1.0% 3.6% 0.2%

2.6%

2.6%

Hispanic or Latino

17.6%

14.4%

High school graduate or higher Bachelor's degree or higher Disability,
86.7%

86.2%

29.8%

31.9%

8.6%

8.9%

10.5%

6.7%

$54

$57

$26

$31

13.5%

13.9%

3. According to the data at Tab 6 above, there is a distinct variety of health access and outcome disparities associated with many groups. Examples include: a. Tobacco Use: Elevated levels of tobacco use is associated with differences in race and ethnicity, age groups, gender differences, socio-economic differences and gender preference. Examples include persons with disabilities who use tobacco at a rates 50% greater than the general population; persons with annual income below $25,000; and African Americans “who experience higher rates of hypertension and heart disease and report greater difficulty quitting or reducing smoking.” b. Diabetes: Rates of diabetes, high in Rhode Island, are elevated in association education and income levels as well as race, ethnic and language differences. c. Nutrition: Higher levels of poor nutrition and obesity are associated with differences in race, gender and income levels. d. Disease Incidence: Greater incidence of major diseases such as cancer, heart disease are associated with race, ethnicity and income levels. 4. Access to and utilization of health services is also fundamental to the existence of disparities in health status:

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a. The state’s shortage of dentists amplifies disparity of access to dental care. This is particularly associated with type of or lack of insurance (a socioeconomic issue) and results in poor dental health for many racial, ethnic and socio-economic groups identified throughout the plan. b. An overuse of hospitalization is caused by a lack of other alternatives. c. Widely dispersed deficiencies in perinatal and infant health spread virtually across all special populations. As is generally the case elsewhere, health disparities are a significant issue in Rhode Island that limits the overall potential of our health system to “improve health status for all members of the population.” (P6) And should be a priority in all program development. B. Discuss the impact of the proposal on reducing and/or eliminating health disparities in the applicant's service area. This proposal will address disparities in Rhode Island at two important levels. 1. In the first case it will directly address the overuse of hospitalization specifically by making hospice care accessible to special populations who face obstacles to its use. This aspect of the proposal will improve services to special populations and reduce costs to the system. 2. Secondly, Continuum will deploy specific, concrete tools and techniques that address inequalities in access. These will be introduced directly into the system of health providers and community organizations that support special populations. In this way Continuum Hospice’s programs will raise consciousness as to the need for special efforts and stimulate thinking about methods for doing so. 9.) Please provide a copy of the applicant’s charity care policies and procedures and charity care application form. Answer: See Tab 7.

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FINANCIAL ANALYSIS 10.) A) Please itemize the capital costs of this proposal. Present all amounts in thousands (e.g., $112,527=$113). If the proposal is going to be implemented in phases, identify capital costs by each phase. CAPITAL EXPENDITURES Amount Survey/Studies $ Fees/Permits $ Architect $ $ "Soft" Construction Costs

Percent of Total % % % %

Site Preparation Demolition Renovation New Construction Contingency "Hard" Construction Costs

$ $ $ $ $ $

% % % % % %

Furnishings Movable Equipment Fixed Equipment "Equipment" Costs

$ 33 $ 60 $ $

25% 45% % %

Capitalized Interest Bond Costs/Insurance Debt Services Reserve1 Accounting/Legal Financing Fees "Financing" Costs

$ $ $ $ 40 $ $

% % % 30% % %

Land $ Other (specify ________________) $ $ "Other" Costs TOTAL CAPITAL COSTS $ 133 1 Should not exceed the first full year’s annual debt payment.

% % % 100%

B.) Please provide a detailed description of how the contingency cost in (A) above was determined. Not Applicable.

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C.) Given the above projection of the total capital expenditure of the proposal, please provide an analysis of this proposed cost. This analysis must address the following considerations: i.

The financial plan for acquiring the necessary funds for all capital and operating expenses and income associated with the full implementation of this proposal, for the period of 6 months prior to, during and for three (3) years after this proposal is fully implemented, assuming approval. Answer: All funds necessary for capital expenditures and all start-up and for operating expenses not offset by income will be provided by Samuel Stern without reliance on debt for the period of 6 months prior to, during and for three (3) years after this proposal is fully implemented, assuming approval.

ii.

The relationship of the cost of this proposal to the total value of your facility’s physical plant, equipment and health care services for capital and operating costs. The relationship of the cost of this proposal to the total value of your facility’s physical plant, equipment, and health care services for capital and operating costs. Continuum Hospice of Rhode Island does not presently provide services and does not own a physical plant. The cost of this proposal, as noted above is $133,000 including $93,000 for furnishings and equipment and $40,000 for legal and accounting fees. These funds are being provided by Samuel Stern as described above.

iii.

A forecast for inflation of the estimated total capital cost of the proposal for the time period between initial submission of the application and full implementation of the proposal, assuming approval, including an assessment of how such inflation would impact the implementation of this proposal. The Applicant does not expect the capital costs to rise materially in the months between the filing of this Application.

11.) Please indicate the financing mix for the capital cost of this proposal. NOTE: the Health Services Council’s policy requires a minimum 20% equity investment in CON projects (33% equity minimum for equipment-related proposals).

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Source

Amount

Equity*

$133,000

Debt**

$

Percent

Interest Rate

Terms (Yrs.)

List source(s) of funds (and amount if multiple sources)

100% %

%

Lease** $ % % TOTAL $133,000 100% * Equity means non-debt funds contributed towards the capital cost of an acquisition or project which are free and clear of any repayment obligation or liens against assets, and that result in a like reduction in the portion of the capital cost that is required to be financed or mortgaged (R2315-CON). ** If debt and/or lease financing is indicated, please complete Appendix F. Answer: Not Applicable 12.) Will a fundraising drive be conducted to help finance this approval? Yes____ No__ 13.) Has a feasibility study been conducted of fundraising potential? Yes___ No__ •

If the response to Question 13 is ‘Yes’, please provide a copy of the feasibility study.

14.) Will the applicant apply for state and/or federal capital funding? Yes___ No __ •

If the response to Question 14 is ‘Yes’, please provide the source: _____________, amount: ________, and the expected date of receipt of those monies: ______________.

15.) Please calculate the yearly amount of depreciation and amortization to be expensed. Depreciation/Amortization Schedule - Straight Line Method

Total Cost (-) Salvage Value (=) Amount Expensed (/) Average Life (Yrs.)

Equipment Improvements Fixed Movable Amortization Total $ $ $ 93 $ 40 $ 133 $ $ $ $ $ 0.0 $ $ $ $ $ 0.0 6 15

(=) Annual Depreciation $

$

$ 16

33

$3

$ 19

*1* Must equal the total capital cost (Question 10 above) less the cost of land and less the cost of any assets to be acquired through lease financing *2* Must equal the incremental “depreciation/amortization” expense, column -5-, in Question 18 (below). 16.) For the first full operating year of the proposal (identified in Question 18 below), please identify the total number of FTEs (full time equivalents) and the associated payroll expense (including fringe benefits) required to staff this proposal. Please follow all instructions and present the payroll in thousands (e.g., $42,575=$43). Existing N/A # of Payroll Personnel FTEs W/Fringes Medical Director $ Physicians $ Administrator $ RNs $ LPNs $ Nursing Aides $ PTs $ OTs $ Speech Therapists $ Clerical $ Housekeeping $ Home Health Aides $ Social Workers $ Chaplain $ Music Therapist $ Volunteer Coordinator $ Other: (specify) $ TOTAL $

Additions/(Reductions) Payroll # of FTEs W/Fringes .25 $ 48 0 $ 0 1 $ 150 4 $ 344 3 $ 204 $ $ $ $ 2 $ 93 $ 3 $ 151 2 $ 133 1 $ 91 1 $ 43 1 $ 60 $ 18.25 $ 1,317

New Totals Payroll # of FTEs W/Fringes .25 $ 48 0 $ 0 1 $ 150 4 $ 344 3 $ 204 $ $ $ $ 2 $ 93 $ 3 $ 151 2 $ 133 1 $ 91 1 $ 43 1 $ 60 $ 18.25 $ 1,317

*1* Must equal the incremental “payroll w/fringes” expense in column -5-, Question 18 (below). INSTRUCTIONS: “FTEs”

Full time equivalents, are the equivalent of one employee working full time (i.e., 2,080 hours per year) “Additions” are NEW hires; “Reductions” are staffing economies achieved through attrition, layoffs, etc. It does NOT report the reallocation of personnel to other departments.

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17.) Please describe the plan for the recruitment and training of personnel. Answer: Continuum will seek to recruit and develop a diverse staff of qualified individuals with skill levels appropriate to the functions they will perform. Recruitment will rely upon the standard mechanisms of print and internet advertising, use of agencies and contacts with professional schools. All staff are extensively vetted as to character and competence. New staff are provided with training and orientation and work under direct supervision during their initial period of employment. The length of direct supervision is related to their existing level of experience and the judgement of their supervisors. Continuum seeks to retain staff by providing competitive compensation, in-service training and professional development opportunities.

35

18.) Please complete the following pro-forma income statement for each unit of service. Present all dollar amounts in thousands (e.g., $112,527=$113). Be certain that the information is accurate and supported by other tables in this worksheet (i.e., “depreciation” from Question 15 above, “payroll” from Question 16 above). If this proposal involved more than two separate “units of service” (e.g., pt. days, CT scans, outpatient visits, etc.), insert additional units as required. PRO-FORMA P & L STATEMENT FOR WHOLE FACILITY <-- FIRST FULL OPERATING YEAR Actual Budgeted 2018 --> Previous Current CON Incremental Year 20__ Year 2017 CON Denied Approved Difference *1* (1) (2) (3) (4) (5) REVENUES: Net Patient Revenue $ $ 0 $ 0 $ 1,549 $ 1,549 Other: $ $ $ 0 $ $ $ $ 0 $ 0 $ 1,549 $ 1,549 Total Revenue EXPENSES: $ $ $ 0 $ $ Payroll w/Fringes $ $ 296 $ 0 $ 1,317 $ 1,317 Bad Debt $ $ 0 $ 0 $ 8 $ 8 Supplies $ $ 12 $ 0 $ 154 $ 154 Office Expenses $ $ 133 $ 0 $ 58 $ 58 Utilities $ $ 36 $ 0 $ 17 $ 17 Insurance $ $ 24 $ 0 $ 16 $ 16 Interest $ $ $ 0 $ $ Depreciation/Amortization $ $ $ 0 $ 19 $ 19 Leasehold Expenses $ $ 42 $ 0 $ 26 $ 26 Other: Amortization of Start Up Costs $ $ $ 0 $ 24 $ 24 $ $ 543 $ 0 $ 1,639 $ 1,639 Total Expenses $ $ 0 $ (90) $ (90) OPERATING PROFIT: $ Note: As discussed in response to Question 7, no revenues are projected for FY 17 because this initial period is devoted to securing CMS certification. Accordingly, there is no billing or payment during this period.

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For each service to be affected by this proposal, please identify each service and provide: the utilization, average net revenue per unit of services and the average expense per unit of service. Service Type: ROUTINE CARE (numbers are Actual) Service (#s): 610 days 7422 days Net Revenue Per Unit *8* $ $ 0 $ $ 186 $ 186 Expense Per Unit $ $ 301 $ $ 151 $ 151 Service Type: CONTINUOUS CARE Service (#s): 0 days Net Revenue Per Unit *8* $ $0 $ Expense Per Unit $ $0 $

20 days $ 411 $ 151

Service Type: GENERAL INPATIENT CARE Service (#s): 0 days 5 days Net Revenue Per Unit *8* $ $0 $ $ 764 Expense Per Unit $ $0 $ $ 600

$ 411 $ 151

$ 764 $ 600

INSTRUCTIONS: Present all dollar amounts (except unit revenue and expense) in thousands. *1* The Incremental Difference (column -5-) represents the actual revenue and expenses associated with this CON. It does not include any already incurred allocated or overhead expenses. It is column -4- less column –3-. *2* Net Patient Revenue (column -5-) equals the different units of service times their respective unit reimbursement. *3* Payroll with fringe benefits (column -5-) equals that identified in Question 16 above. *4* Bad Debt is the same as that identified in column -4-. *5* Interest Expense equals the first full year’s interest paid on debt. *6* Depreciation equals a full year’s depreciation (Question 15 above), not the half year booked in the year of purchase. *7* Total Expense (column -5-) equals the operating expense of this proposal and is defined as the sum of the different units of service; *8* Net Revenue per unit (of service) is the actual average net reimbursement received from providing each unit of service; it is NOT the charge for that service. 19.) Please provide an analysis and description of the impact of the proposed new institutional health service or new health equipment, if approved, on the charges and anticipated reimbursements in any and all affected areas of the facility. Include in this analysis consideration of such impacts on individual units of service and on an aggregate basis by individual class of payer. Such description should include, at a minimum, the projected charge and reimbursement information requested above for the first full year after implementation, by payor source, and shall present alternate projections assuming (a) the proposal is not approved, and (b) the proposal is approved. If no additional (incremental) utilization is projected, please indicate this and complete this table reflecting the total utilization of the facility in the first full fiscal year.

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Projected First Full Operating Year: FY 2018 Implemented Not Implemented

Payor Mix

Projected Utilization

Medicare RI Medicaid Non-RI Medicaid RIteCare Blue Cross Commercial HMO's Self Pay Charity Care Other: ___ TOTAL

20.)

Total Revenue

Projected Utilization

#

Total Revenue

# (patient visits) 5,735 376

%

$

%

$

77% 5%

1,193 78

0 0

0 0

368

5%

76

0

599

8%

128

369

5%

7,447

100%

Difference Projected Utilization

Total Revenue

%

$

0 0

# (patient visits) 5,735 376

77% 5%

1,193 78

0

0

368

5%

76

0

0

0

599

8%

128

74

0

0

0

369

5%

74

1,549

0

0

0

7,447

100%

1,549

Please provide the following: A.

Please provide audited financial statements for the most recent year available. Answer: The Applicant is a newly formed entity with no financial statements. The financial statements for Continuum Care Hospice, LLC’s most recent year are at Tab 8 (there are no audited statements).

B.

Please discuss the impact of approval or denial of the proposal on the future viability of the (1) applicant and (2) providers of health services to a significant proportion of the population served or proposed to be served by the applicant. Answer: Approval of the proposed application will allow the Applicant to provide quality, cost-effective hospice services with an emphasis on the underserved minority communities and will have no adverse impact on existing providers. Denial of the proposal will prevent the Applicant from providing the needed quality, cost-efficient hospice services to the underserved population and others who would benefit from them. Given the service volumes projected by Continuum, its mission to reach out to populations presently not well served, the proposed project will not adversely impact any other existing provider.

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21.) Please identify the derivable operating efficiencies, if any, (i.e., economies of scale or substitution of capital for personnel) which may result in lower total or unit costs as a result of this proposal. Answer: As noted earlier, the Continuum model seeks to avoid any possible duplication of costs by utilizing, as possible, providers of services such as physicians, specialty therapists, etc. who have existing relationships with our patients. This is done even when Continuum offers these services directly provided that proper coordination and quality can be ensured.

22.) Please describe on a separate sheet of paper all energy considerations incorporated in this proposal. Answer: The proposed project involves no new construction or renovation of public areas. Services are not provided in the Applicant’s facilities but rather in the patients’ homes or in other facilities which the patients are domiciled on a long term or temporary basis. The Applicant will employ efficient energy use techniques within its home office and will seek to organize work schedules & assignments as to minimize use of energy for transportation. 23.) Please comment on the affordability of the proposal, specifically addressing the relative ability of the people of the state to pay for or incur the cost of the proposal, at the time, place and under the circumstances proposed. Additionally, please include in your discussion the consideration of the state’s economy. Answer: While a recent report by the Brookings Institute23 points out several weakness in the state’s economy in comparison to other New England states it also points out certain points to evidence that the economy has been reviving in recent years. This includes factors suggesting strong growth in economic output during the current decade, strengthening productivity and a decrease in unemployment accompanied by increases in average wage. The report notes further that RI has been a leader in R&D investment suggesting significant returns for the economy. Finally, the presence of certain growth industries are further support for increased future growth. These industries include opportunities and Biomedicine, Defense and IT. All of these issues suggest an improving picture since the last decade. The proposed project will contribute the state’s economy by decreasing health care expenditures in the following ways:

23

12 things to know about the big new Brookings report on RI’s economy, as reported by WPRI 1/19/16

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1. It will reduce the statewide unit cost of hospice care by reducing reliance on hospice care provided in SNF’s. As noted earlier, hospice care provided in this setting has been of concern to regulators given the association of this setting with higher lengths of stay and potential duplication of services. 2. In addition, Continuum’s efforts to make hospice care available to underserved populations will lead to substitution of a lower cost alternative for costly end-of-life care in acute care settings. Given these factors the Applicant believes that the proposed project is affordable and will make a meaningful contribution to the state’s economy. 24.) Please address how the proposal will support optimizing health system performance with regards to the following three dimensions: a. Improving the patient experience of care (including quality and satisfaction) Answer: Hospice care option. It competes, per se, with end-of-life care as provided by acute care facilities. While, initially, unknown to the public, choice of the hospice option has grown very rapidly since it was introduced in the 1980’s and as knowledge and access expanded throughout the country. Patients choose hospice care not because they must but because they judge it will be preferable. That is, they prefer it to endof-life in a restricted, frequently painful setting of the acute hospital. The proposed project will improve the experience of end-of-life care for patients and their families by making hospice care more accessible and available for more Rhode Islanders to avail themselves of this preference. b. Improving the health of populations; and While the object of hospice care is obviously not to “improve health status”, it does have a positive effect on one segment of the population; that is, the close friends and relatives of the patient – many of whom will endure a difficult grieving process. Because hospice encompasses care for the entire family and provides the opportunity for family and love ones to participate in the process it contributes to the health and well-being of those close to the patient. c. Reducing the per capita cost of health care Hospice is a less costly alternative to end-of-life care in acute care settings. To the extent that the proposed project makes this alternative more available, it will contribute towards the decrease in the per capita cost of health care.

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25.) Please identify any planned actions of the applicant to reduce, limit, or contain health care costs and improve the efficiency with which health care services are delivered to the citizens of this state. Answer: The Applicant plans to deliver hospice care in an efficient manner at a reasonable cost. The Applicant’s emphasis on providing care in the residential setting is supportive of the recent trend to rebalance the use of settings and decrease the percentage of care provided in SNFs and similar institutions. The 2014 Health Services Council decision on the Application of Athena Hospice Services reflected industry wide concerns that care provided in such settings was prone to overly long lengths of stay and unnecessary provision of services. The Applicant’s proposal will help meliorate this trend. Moreover, The Applicant’s commitment to outreach reach to under severed populations clearly will improve the efficiency for all persons who have the opportunity to choose hospice care as opposed to more costly end-of-life care at an acute care facility.

QUALITY, TRACK RECORD, CONTINUITY OF CARE, AND RELATIONSHIP TO THE HEALTH CARE SYSTEM 26.)

A) If the applicant is an existing facility: For the Applicant, N/A. For Continuum Care Hospice, LLC, none.

Please identify and describe any outstanding cited health care facility licensure or certification deficiencies, citations or accreditation problems as may have been cited by appropriate authority. Please describe when and in what manner this licensure deficiency, citation or accreditation problem will be corrected. B) If the applicant is a proposed new health care facility: See Tab 9. Please describe the quality assurance programs and/or activities which will relate to this proposal including both inter and intra-facility programs and/or activities and patient health outcomes analysis whether mandated by state or federal government or voluntarily assumed. In the absence of such programs and/or activities, please provide a full explanation of the reasons for such absence. C) If this proposal involves construction or renovation: N/A Please describe your facility’s plan for any temporary move of a facility or service necessitated by the proposed construction or renovation. Please describe your plans for ensuring, to the extent possible, continuation of services while the construction and renovation take place. Please include in this description your facility’s plan for ensuring that patients will be protected from the noise, dust, etc. of construction.

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27.) Please discuss the impact of the proposal on the community to be served and the people of the neighborhoods close to the health care facility who are impacted by the proposal. Answer: Continuum is committed to making hospice care a realistic choice for many populations to whom it is currently restricted. This benefits not only the patients involved but indirectly contributes to social equity within the community a characteristic we strive for in our society. The proposed project has no negative implications for neighbors where the service will be provided. The service involves not construction or modification of public areas and poses no material impact on traffic or areas of public use. 28.) Please discuss the impact of the proposal on service linkages with other health care facilities/providers and on achieving continuity of patient care. Answer: Hospice care is comprehensive. It intersects with many aspects of the patient’s life as well as health and social services they may already be receiving or would like to receive from others. Communication with other facilities / providers is vital to the quality of care in order to understand patient’s medical histories, current ongoing issues they face, to avoid duplication and ensure synergy among all those focused on patient needs. These needs are discussed with patients and their families upon the initiation of care. Important points of linkage are incorporated into each patients care plan as appropriate in the form of routine consultations and communications.

29.) Please address the following: A. How the applicant will ensure full and open communication with their patients' primary care providers for the purposes of coordination of care; Answer: As previously noted, the Continuum model of care places a premium on communication with a patient’s existing providers and maintenance of their involvement in the case as per each patient’s wishes. Continuum routinely consults with and informs relevant providers at the beginning of each patient assignment and throughout the duration of care. These activities are included in the plan of care developed for each patient.

42

B. Discuss the extent to which preventive services delivered in a primary care setting could prevent overuse of the proposed facility, medical equipment, or service and identify all such preventative services; Answer: Duplication of services can occur in the absence of good communications with the full range of a patient’s existing providers. Continuum’s policy of provider communication will, among other obvious benefits, avoid and duplication that could otherwise occur. C. Describe how the applicant will make investments, parallel to the proposal, to expand supportive primary care in the applicant’s service area. Answer: As described throughout this application, the Continuum model of services entails the deployment of tools and techniques to promote access to hospice to underserved populations. Among these tools aids and education for primary care physicians to help them explain the hospice alternative to patients including discussion of the end of life experience. These tools moreover will be culturally specific and presented to physicians interactively and provide appropriate resources that physicians can use to communicate with their patients. D. Describe how the applicant will use capitalization, collaboration and partnerships with community health centers and private primary care practices to reduce inappropriate Emergency Room use. Answer: The Applicant will invest in materials and other tools and will expend the time and effort to distribute them to the various person and community organizations (including health centers and practices) to promote education about hospice care. One of the benefits that will be discussed is the ability of hospice to reduce inappropriate use of emergency care by providing the care necessary to avoid the occurrence of emergency or addressing it directly with the context of the program.

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E. Identify unmet primary care needs in your service area, including “health professionals shortages”, if any (information available at Office of Primary Care and Rural Health at (http://www.health.ri.gov/programs/primarycareandruralhealth/). Answer: The US Health Resources and Service Administration lists twelve medical services shortage areas in the State of Rhode Island as follows: HRSA Designated Underserved Areas in RI Central East Providence Service Area Central Falls/Pawtucket Service Area Low Inc - Glocester/Foster/Burrillville Low Inc - Johnston/Smithfield/North S Low Inc - Narragansett Service Area Low Inc - Warren/Bristol Service Area Low Inc - Washington Service Area Northeastern Cranston Service Area Providence Service Area Providence Service Area West Side Newport Service Area West Warwick Service Area Source: HRSA website data portal

State RI RI RI RI RI RI RI RI RI RI RI RI

30.) Please discuss the relationship of the services proposed to be provided to the existing health care system of the state. Answer: Continuum’s model of care emphasizes coordination and communication with other providers in order to accomplish a number of purposes: • • • •

To collaborate with other hospice providers to create synergies, develop standards and improve care; To communicate and consult with other institutions and providers to coordinate services and promote continuity of care; To participate in policy forums to provide input into statewide health policy; To both assist and learn from providers in underserved areas to make hospice care an available option to all patients who would prefer it.

44

In addition, as discussed above, the introduction of Continuum’s services to the existing system will help in lowering statewide health care costs and improving efficiency – impacts that can improve the health care market place for all participants in this system. 31.) Please identify any state or federal licensure or certification citations and/or enforcement actions taken against the applicant and their affiliates within the past 3 years and the status or disposition of each. Answer: None for both the Applicant and Continuum Care Hospice, LLC. 32.) Please provide a list of pending or adjudicated citations, violations or charges against the applicant and their affiliates brought by any governmental agency or accrediting agency within the past 3 years and the status or disposition of each. Answer: None for both the Applicant and Continuum Care Hospice, LLC. 33.) Please provide a list of any investigations by federal, state or municipal agencies against the applicant and their affiliates within the past 3 years and the status or disposition of each. Answer: None for both the Applicant and Continuum Care Hospice, LLC.

Select and complete the Appendixes applicable to this application: Appendix A B C D E F G

Check off:  



Required for: Accelerated review applications Applications involving provision of services to inpatients Nursing Home applications All applications Applications with healthcare equipment costs in excess of $2,451,805 and any tertiary/specialty care equipment Applications with debt or lease financing All applications

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Appendix B Provision of Health Services to Inpatients 1.

Are there similar programmatic alternatives to the provision of institutional health services as proposed herein which are superior in terms of: Answer a. Cost ___ Yes X No b. Efficiency ___ Yes X No c. Appropriateness ___ Yes X No

-

2.

For each No response in Question 1, discuss your finding that there are no programmatic alternatives superior to this proposal separately for each such finding. Answer: a. Cost: Continuum will provide services to patients institutionalized in acute care hospitals and long term care facilities. In the first instance these services will be brief and temporary and will represent existing patients of Continuum suffering from an acute episode. In such cases, Continuum will provide assistance in implementing the patients hospice care plan – but will not provide hospital services. This alternative is the least costly method of providing care to patients who require temporary acute inpatient treatment. Additionally, Continuum will provide care to residents of long term care facility that are medically unable to return home but require hospice care. The only other alternative to this approach is for Long Term Care providers to become simultaneously licensed as hospice providers. This model is fraught with confusion and opportunities for redundant billing and unnecessary provision of services. b. Efficiency: The Continuum model minimizes redundancy – because it is patient rather than provide or “setting” centered. By have a single, low cost organization focus across all settings on the patient’s hospice needs, continuity of care is maintained and duplication avoided. c. Appropriateness: The Continuum model provides for a clear separation of hospice care and other forms such as SNF or long term care. This separation limits opportunities for provision of inappropriate services.

46

3.

For each Yes response in Question 1, identify the superior programmatic alternative to this proposal, and explain why that superior alternative was rejected in favor of this proposal separately for each such finding.

4.

In the absence of proposed institutional health services proposed herein, will patients encounter serious problems in obtaining care of the type proposed in terms of: a. Availability b. Accessibility c. Cost

5.

X Yes ___ No X Yes ___ No X Yes ___ No

-

-

-

For each Yes response in Question 4, please justify and provide supporting evidence separately for availability, accessibility and cost.

Answer: a. Availability: The proposed project increases availability of hospice care in two ways. It adds to the existing supply of services and promotes outreach and access for special populations. If this project is not approved, fewer Rhode Islanders will have the option of choosing hospice care. b. Accessibility: The proposed project promotes accessibility by increasing availability as described above but also by working to ensure that all people in Rhode Island are well informed about their end-of-life-options and have the means through their heath carry provider and their community organizations to learn about hospice care and how to access it. In the absence of these service availability will be diminished. c. Cost: Increased access and availability and a greater supply of hospice care will increase the use of hospice in Rhode Island. The Continuum model, moreover, promotes this increase in the most efficient setting. In the absence of this project the opportunity for this increase and the associated efficiency of the services will not be achieved.

47

Appendix D All applications must be accompanied by responses to the questions posed herein. 1. Provide a description and schematic drawing of the contemplated construction or renovation or new use of an existing structure and complete the Change in Space Form. N/A 2. Please provide a letter stating that a preliminary review by a licensed architect indicates that the proposal is in full compliance with the current edition of the "Guidelines for Design and Construction of Hospital and Health Care Facilities" and identify the sections of the guidelines used for review. Please include the name of the consulting architect, and their RI Registration (license) number and RI Certification of Authorization number. N/A 3. Provide assurance and/or evidence of compliance with all applicable federal, state and municipal fire, safety, use, occupancy, or other health facility licensure requirements. N/A. The office is office space only and no hospice services are provided at the office. 4. Does the construction, renovation or use of space described herein corrects any fire and life safety, Joint Commission on Accreditation of Healthcare Organizations (JCAHO), U.S. Department of Health and Human Services (DHHS) or other code compliance problems: Yes____ No  o If Yes, include specific reference to the code(s). For each code deficiency, provide a complete description of the deficiency and the corrective action being proposed, including considerations of alternatives such as seeking waivers, variances or equivalencies. 5. Describe all the alternatives to construction or renovation which were considered in planning this proposal and explain why these alternatives were rejected. N/A 6. Attach evidence of site control, a fee simple, or such other estate or interest in the site including necessary easements and rights of way sufficient to assure use and possession for the purpose of the construction of the project. See Tab 10. 7.

If zoning approval is required, attach evidence of application for zoning approval.

N/A

48

8. If this proposal involves new construction or expansion of patient occupancy, attach evidence from the appropriate state and/or municipal authority of an approved plan for water supply and sewage disposal. N/A 9. Provide an estimated date of contract award for this construction project, assuming approval within a 120-day cycle. N/A 10. Assuming this proposal is approved, provide an estimated date (month/year) that the service will be actually offered or a change in service will be implemented. If this service will be phased in, describe what will be done in each phase. July 2017

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Change in Space Form Instructions The purpose of this form is to identify the major effects of your proposal on the amount, configuration and use of space in your facility. Column 1 Column 1 is used to identifying discrete units of space within your facility, which will be affected by this proposal. Enter in Column 1 each discrete service (or type of bed) or department, which as a result of this proposal is: a.) to utilize newly constructed space b.) to utilize renovated or modernized space c.) to vacate space scheduled for demolition In each of the Columns 3, 4, and 5, you are requested to disaggregate the construction, renovation and demolition components of this proposal by service or department. In each instance, it is essential that the total amount of space involved in new construction, renovation or demolition be totally allocated to these discrete services or departments listed in Column 1. Column 2 For each service or department listed in Column 1, enter in this column the total amount of space assigned to that service or department at all locations in your facility whether or not the locations are involved in this proposal. Column 3 For each service or department, please fill in the amount of space which that service or department is to occupy in proposed new construction. The figures in Column 3 should sum to the total amount of space of new construction in this proposal. Column 4 For each service or department, please fill in the amount of space, which that service or department is to occupy in space to be modernized or renovated. The figures in column 4 should sum to the total amount of space of renovation and modernization in this proposal. Column 5 For each service or department fill in the amount of currently occupied space which is proposed to be demolished. The figures in Column 5 should sum to the total amount of space of demolition specified in this proposal. Column 6 For each service or department entered in Column 1, enter in this column the total amount of space which will, upon completion of this project, be assigned to that service or department at all locations in your facility whether or not the locations are involved in this proposal. Column 7 Subtract from the amount of space shown in Column 6 the amount shown in Column 2. Show an increase or decrease in the amount of space.

50

Change in Space Form Please identify and provide a definition for the method used for measuring the space (i.e. gross square footage, net square footage, etc.): Not Applicable. ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ ___________________________________________________________________________________ 1. Service or Department Name

2. Current 3. New 4. Space Construction Renovation Amount Space Space Amount Amount

TOTAL:

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5. Amount of Space Currently Occupied to be Demolished

6. Proposed Space Amount

7. Change [(6)-(2)]

Appendix G Ownership Information All applications must be accompanied by responses to the questions posed herein. 1.

List all officers, members of the board of directors, stockholders, and trustees of the licensee, applicant and/or ultimate parent entity. For each individual, provide their home and business address, principal occupation, position with respect to the licensee, applicant and/or ultimate parent entity, and amount, if any, of the percentage of stock, share of partnership, or other equity interest that they hold. Sole owner: Samuel Stern Board Members: Ariel Joudai, CPA - CFO of a Hospice Company Alisa Scheinfeld, Esq. - Attorney Samuel Stern

2.

For each individual listed in response to Question 1 above, list all (if any) other health care facilities or entities within or outside Rhode Island in which he or she is an officer, director, trustee, shareholder, partner, or in which he or she owns any equity or otherwise controlling interest. For each individual, please identify: A) the relationship to the facility and amount of interest held, B) the type of facility license held (e.g. nursing facility, etc.), C) the address of the facility, D) the state license #, E) Medicare provider #, and F) any professional accreditation (e.g. JACHO, CHAP, etc.). A) Samuel Stern – Continuum Care Hospice, LLC sole owner. B) Hospice care provider C) 7677 Oakport Street, Suite 110 Oakland, CA 94621 D) State License #550003034 E) Medicare Provider #75 1626 F) CHAP accredited

3.

If any individual listed in response to Question 1 above, has any business relationship with the licensee, applicant and/or ultimate parent entity, including but not limited to: supply company, mortgage company, or other lending institution, insurance or professional services, please identify each such individual and the nature of each relationship. N/A

52

4.

Have any individuals listed in response to Question 1 above been convicted of any state or federal criminal violation within the past 20 years? Yes___ No . •

5.

If response is ‘Yes’, please identify each person involved, the date and nature of each offense and the legal outcome of each incident.

Please provide organization chart for the applicant, identifying all "parent" entities with direct or indirect ownership in or control of the applicant, all "sister" legal entities also owned or controlled by the parent(s), and all subsidiary entities owned by the applicant. Please provide a brief narrative clearly explaining the relationship of these entities, the percent ownership the principals have in each (if applicable), and the role of each and every legal entity that will have control over the applicant. See Organizational Chart at Tab 11. Samuel Stern is the Sole Member of the Applicant, Continuum Care of Rhode Island, LLC (“Continuum”) that will provide hospice services to Rhode Island residents assuming approval of the Certificate of Need Application and Continuum Care Hospice, LLC that currently provides hospice services in Oakland, California with an emphasis on the African-American community. In similar fashion, Continuum will also focus on the underserved communities in Rhode Island including the African-American, Asian and Hispanic communities.

6.

Please list all licensed healthcare facilities (in Rhode Island or elsewhere) owned, operated or controlled by any of the entities identified in response to Question 5 above (applicant and/or its principals). For each facility, please identify: A) the entity, applicant or principal involved, B) the type of facility license held (e.g. nursing facility, etc.), C) the address of the facility, D) the state license #, E) Medicare provider #, and F) any professional accreditation (e.g. JACHO, CHAP, etc.). Continuum Care Hospice, LLC 7677 Oakport St. Suite 110 Oakland, CA 94621 State License: 550003034 Medicare Provider #: 75 1626 CHAP accredited

7.

Have any of the facilities identified in Question 5 or 6 above had: A) federal conditions of participation out of compliance, B) decertification actions, or C) any actions towards revocation of any state license? Yes ___ No  •

If response is ‘Yes’, please identify the facility involved, the nature of each incident, and the resolution of each incident.

53

8.

Have any of the facilities owned, operated or managed by the applicant and/or any of the entities identified in Question 5 or 6 above during the last 5-years had bankruptcies and/or were placed in receiverships? Yes___ No  •

9.

If response is ‘Yes’, please identify the facility and its current status.

For applications involving establishment of a new entity or involving out of state entities, please provide the following documents: See Tab 12. When Continuum Care of Rhode Island, LLC was formed, 10 Dorrance Street, Suite 700, Providence, was listed as the address for the company’s registered agent and principal office. Since formation of the entity, it was determined that 10 Dorrance Street was not large enough for the office space and the office will be located at 101 Plain Street, Providence, Rhode Island. • Certificate and Articles of Incorporation and By-Laws (for corporations) • Certificate of Partnership and Partnership Agreement (for partnerships) • Certificate of Organization and Operating Agreement (for limited liability corporations)

54 848765.v1

Tab 1

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0.4

•PAII noK Fr ief:if, 01. I. i FE

.AnAerict_-Arx

Table of Contents I.

Overview a. Demographics b. History c. Healthcare Disparities d. African American Origins e. Religion

3 4 4 5 6 7

II.

African American Focus Group Findings a. Death, Dying and Advance Care Planning b. Caregiving c. Understanding of Hospice

8 8 9 9

III. Strategies for Reaching Out to African American Communities a. Get Organized b. Find the Right Fit c. Educate, Support and Listen to Your Community d. Find Your Voice and Let Your Message Be Heard e. Look and Think Beyond Hospice f. Consider Marketing g. Build Partnerships h. Embrace the Faith Community i. Participate In and Host Community Events j. Connect with African American Media

10 10 12 13 15 16 18 19 21 24 26

IV.

28 28 29

V.

Model Outreach Programs and Initiatives a. Bridging the Healthcare Gap: A Touch of Grace Hospice, Inc., Chicago, Illinois b. Connecting though Faith: Nathan Adelson Hospice, Las Vegas, Nevada c. Emphasizing Community-Building: Pike's Peak Hospice & Palliative Care, Colorado Springs, Colorado d. Focusing on Children: Hospice and Palliative Care of Greensboro, Greensboro, North Carolina Resources for African American Outreach a. Professional Organizations b. Educational Tools c. Web Sites d. Literature

30 31 32 32 33 34 35

VI. Acknowledgements

39

VII. Appendix a. Proctor Covenant Statement on End-of-Life Care (pdf) b. Advance Directives and End-of-Life Decisions (ppt) c. Understanding Hospice, Palliative Care and End-of-Life Issues (ppt)

40 40 40 40

Copyright 2008 National Hospice and Palliative Care

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I. Overview

"Hospice offers the best hope not to be alone, to be with family, to have pain controlled, and to be connected to your faith and beliefs. We are as entitled and deserving as anyone else to have these hopes Wiled." — RICHARD PAYNE, MD PROFESSOR OF MEDICINE AND DIVINITY ESTHER COLLIFLOWER DIRECTOR DUKE INSTITUTE ON CARE AT THE END OF LIFE. DURHAM, NC

Harlem Renaissance author, poet and playwright, Langston Hughes (1902-1967) once said, "There is no color line in death." Mr. Hughes understood that however we reach the end of life, our mortality is universal; there is no color line in death and there should not be one in life either. With that thought in mind, it is interesting to note that while the African American population accounts for over 12% of the overall U.S. population, fewer than 10% of those entering hospice programs across the country are African American. Conversely, the white/Caucasian population comprises 80.1% of the U.S. population (U.S. Census estimate for 2006)1 and accounts for more than 80% of hospice admissions.2 Within Medicare decedents ages 65 and older, the disparity is even more pronounced. Researchers have found that in the last year of life, black decedents were less likely to use hospice than white decedents (22% vs. 29%, respectively)., Hospice utilization has also been shown to be "lower among African-Americans than among white decedents, across all age groups," "across all causes of death except Alzheimer's disease" and "in 31 of 40 states." The researchers theorize "that racial disparities in hospice utilization decrease in areas where hospice utilization is more common" and that "one promising strategy to help reduce white/African American disparity in hospice use appears to be to increase access to hospice care for all eligible individuals".4 Given the inequalities described above, the purpose of this Guide is to provide outreach strategies and resources for providers and coalitions to better support African Americans with end-of-life issues.

1

http://quickfacts.censussoviqfd/states/00000.html

2NHPCO Facts and Figures, 2007. www.nhpco.org ,Connor SR, Elwert F, Spence C, Christakis NA. Geographic variation in hospice use in the United States in 2002.J Pain Symptom Manage. 2007 Sep; 34(3):277-85. 'Connor SR, Elwert F, Spence C, Christakis NA. Racial disparity in hospice use in the United States in 2002.Palliat Med. 2008 Apr; 22(3):205-13.

V Copyright MOS Narlona I liospler end

Care Organwation. All rights reserved

The Guide specifically provides you with a review of significant end-of-life issues relevant to African American communities, and detailed strategies and tools gathered from hospice programs and experts. The "Resources" section offers many suggestions for continuing your research and outreach efforts. We encourage you to focus on taking time to get to know your community and fostering meaningful relationships, growing together as you reach out. In addition, the Caring Connections team has a wealth of materials that can assist you with virtually all aspects of your outreach, located at www.caringinfo.org/community. We hope that this Guide will help highlight the importance of improving outreach and access efforts with African Americans in your community, as well as provide practical tools so that ultimately patients and their families will be better served in a culturally competent way, honoring and respecting their traditions. A. DEMOGRAPHICS

r

There are over 300 million Americans living in the U.S. today, 39 million of whom are African American (just over 12 percent of the total population). One out of every four African Americans lives in New York, Florida or Georgia, with the largest concentration in the South (55 percent). The highest proportions are in the District of Columbia (57 percent) and Mississippi (37 percent), and the lowest are in Montana, Idaho and Vermont (less than one percent each). 52 percent of all African Americans live within metropolitan areas, with only 13 percent in nonmetropolitan areas.s Most African Americans are high school graduates, and one in six has a college degree. Median income is about $32,000, one in four live below the poverty level, and about nine percent are unemployed (double the national average). African Americans are less likely to be married than non-Hispanic whites, and a larger proportion of their households are maintained by women. African Americans are more likely to live with and care for grandchildren.

B. HISTORY Many African Americans remember the days of segregation, Jim Crowe laws and violence towards their people. And many African Americans are deeply distrustful of the government and the healthcare system, a distrust that is rooted in both historical and present day experiences. For example, while emancipation from slavery was achieved in 1865, many African American families are only three generations removed from slavery. And as recently as 40 years ago, African American men with syphilis were purposely left untreated and studied to determine the long-term effects of the disease; many died in excruciating pain, all unnecessarily. In addition, a survey of African Americans conducted from 2002-2003, reported in the Journal of Acquired Immune Deficiency Syndrome, found that nearly half of the respondents believe that the U.S. government created HIV/AIDS, in part, as a plot to exterminate blacks.' So when African Americans do seek care for their health, particularly at the end-of-life, it is little wonder that many worry that hospice is just another way to hasten death. ,U.S. Census Bureau. (2004). The American Community — Blacks. www.census.gov/prod/2007pubsiacs-04.pdf. 6U.S. Census Bureau. (2004). The American Community — Blacks. www.censzis.gov/prod/2007pubs/ac.s-04.pdf. 'Bogart, LM., Thorburn, S. (2005). Are HIV/AIDS conspiracy beliefs a barrier to HIV prevention among African Americans? Journal of Acquired Immune Deficiency Syndrome, 39 (2), 213-218.

C, Copyright 2008 National hospice and Palliative Car thgarifmtitm_ All rights rescruud.

rnerticorl OUTREACH GUIDE IL

"Black people still don't believe in the political process, because the process has never served us. We've been betrayed by the political process, betrayed by the medical process, betrayed by each and every process in America, and it's all based on racism. That distrust affects our entire personality in a great many ways." —

AFRICAN AMERICAN FOCUS GROUP MEMBER, NEW YORK, NEW YORK, 2005 (SEE FOCUS GROUP REPORT TN SECTION II)

C. HEALTHCARE DISPARITIES - — Population-specific differences in the presence of disease, health outcomes and access to healthcare are all part of the healthcare disparities conversation. A 2002 Institute of Medicine (IOM) study found that "a consistent body of research demonstrates significant variation in the rates of medical procedures by race, even when insurance status, income, age, and severity of conditions are comparable. Research further indicates that U.S. racial and ethnic minorities are less likely to receive even routine medical procedures and experience a lower quality of health services.", This comprehensive report entitled, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care, basically reveals that African Americans are dying from treatable and preventable illnesses with more frequency than other ethnic groups.

"Among African Americans, nonacceptance of advance directives appears to be part of a much broader pattern of values regarding quality of life, as well as a historical legacy of segregation. [Do Not Resuscitate] DNR orders may be viewed as a way of limiting expensive healthcare or as cutting costs by ceasing care prematurely.

Historically, this

perspective may stem from a long history of distrust of the whitedominated healthcare system."g

For example, African Americans are more likely to develop cardiovascular disease and HIV/AIDS, and are twice as likely to die from diabetes. Cancer incidence rates are ten percent higher overall, with a 25 percent greater chance of dying from it than whites. African Americans have higher infant mortality rates, and are more likely to live with a cognitive disability. Seven million African Americans do not have health insurance, and life expectancy is nearly ten years less than for whites.'° Peer-reviewed medical journals cite countless examples of African American patients experiencing discrimination, from the refusal to administer appropriate medications (most notably opiates), to inferior care. The IOM report specifically found that African Americans are less likely than whites to receive kidney dialysis or transplants, undergo coronary bypass surgery or receive state-of-the-art HIV/AIDS treatments."

BSearight, H. R., Gafford, J. (2005, February 1). Cultural diversity at the end of life: Issues and guidelines for family physicians. American Family Physician, 71(3), 515-522. 'Institute of Medicine. (2002). Report Brief: What Health Care Providers Need to Know about Racial and Ethnic Disparities in Healthcare. Retrieved from wvvw. iorn edu/Object.File/M aster/4/17 5/Disparitieshcproviders8pgFIN AL.pdf: "Centers for Disease Control. (2008). National Center for Health Statistics: Health of Black or African American Population. Retrieved from www.cdc.gov/nchs/fastats/black health.hbn. 'Institute of Medicine. (2005). Addressing Racial and Ethnic Health Care Disparities. Retrieved from www.iom.edu/ObjectFile/Master/33/249/BROCHURE disparities.pdf

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While the reasons for these disparities are numerous and frequently directly correlated to lower socioeconomic status, African Americans do not seek healthcare as often, and when they do, it is often with a physician they may see only once. The healthcare system in America and its many services have made incredible strides over the years, yet much work is to be done with regard to differences in quality of care and treatment options based on ethnic background.

D. AFRICAN AMERICAN ORIGINS For purposes of this Guide, we have limited our focus to US-born African Americans (unless otherwise specified). However, it is important to be aware that eight percent of the total black population is foreignborn, and most came to the U.S. after 1990. The highest percentages live in New York, Massachusetts, Minnesota and Florida, and nearly all were born in Africa or Latin America.12 Recent immigrants may present with advanced disease that has gone untreated, either because of lack of care or a preference for alternative (and potentially less effective) treatments. Others may have undergone extreme trauma as part of their immigration experience or in their home countries, including illegal flight, genocide and extreme poverty. Take the time to learn where the family is originally from and ask about specific healthcare traditions that are important to them; then integrate these treatments into the plan of care. Be sensitive to the special customs of these groups, particularly with regard to traditional medicine.

"I have seen more young people who are immigrants diagnosed with advanced cancer. It's not that unusual for those from a foreign country to present with illness that is further along. And when the patient is young, they're often hesitant to call back home to tell their parents how very sick they are. I have to encourage and facilitate those calls. What's wonderful, though, is that these are often tight communities that provide a network of support. In many cases groups of strangers from the same country immigrated together in search of employment, so their "community" came with them, and it is built on a shared place of origin, culture and tradition." — LYLA CORREOSO, MD, ATTENDING PHYSICIAN WITH THE VISITING NURSE SERVICE OF NEW YORK, NY

12U.S.

Census Bureau. (2007). The American CommunityOBlacks. Retrieved from wivw.censusov4mx1/2007pubs/acs-04.pdf.

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E. RELIGION Historically, African American slaves in the U.S. were denied religious freedom, and racial segregation led to the development of separate, organized religious denominations. While African Americans practice a number of religions, Protestant Christianity remains the most popular with a nearly 76 percent following, the majority of Baptist and Methodist tradition. Seven percent identify themselves as "Other", six and a half percent are Catholic, less than one percent are Jewish and about ten percent do not identify with any religious group." Further, a profile of African American religious participation reveals that 70 percent attend religious services at least a few times a month, and 80 percent pray nearly every day. 27 percent read religious books and 21 percent watch or listen to religious programming on television or radio daily. Overall, 80 percent consider themselves to be either very or fairly religious.14 In African American faith communities, members seek out everything from spiritual guidance, to relationship counsel, to adult vocational education programs. Each African American religious tradition takes great pride in its ability to hold together its congregation even in the gravest of times. From native Africans initial embracing of Western religions while retaining elements of their own native traditions, the evolution of the Black church into today's modern religious practice remains the backbone of African American communities.

Note that because of the popularity of Christianity among African Americans, Christian themes and spirituality predominate throughout this Guide, and many of the strategies tie into a Christian faith base. However, we recognize that not all African Americans are involved with a church, nor are all Christian.

"[Healthcare] decisions and actions taken are often based on religious traditions, such as fasting, prayer, seeking God (specifically God's will) and even asking a doctor to pray with or for the patient and family." — STACIE PTNDERHUGHES, MD, CHIEF, DIVISION OF HOSPICE AND PALLIATIVE MEDICINE, NORTH GENERAL HOSPITAL, NEW YORK, NY

"Religion Newswriters Foundation. (2007). A Guide to African Americans and Religion. Retrieved from www.religionlinkorzitip 070108.php#stats. (2006). Pulpit & Pew: Research on Pastoral Leadership. Section II: Profiles and Studies of African American I aity. Durham, N.C.: Duke Divinity School. p. 24.

"Mamiya, L

Copyrigin 2008 National }Inspire and tkl Itatly.2 Care Organization. All rights rewrved.

Section II. African American Focus Group Findings

In May 2006, NHPCO's Caring Connections conducted two African American end-of-life focus groups in St. Louis, Missouri. Men and women were interviewed separately. Group participants discussed their general feelings and issues regarding end-of-life thinking, talking and planning. Participants were then asked to read and react to topics such as advance care planning, end-of-life caregiving and hospice. Key findings are below. A. DEATH, DYING AND ADVANCE CARE PLANNING Group participants were divided on their comfort level on the topic of death and dying -some seemed at ease, while others felt that it was culturally taboo to even discuss it. Older participants indicated that they talk about it more as they themselves are aging. Generally, there is a conflict between wanting to be informed medically, but being culturally bound to privacy and wanting to turn to and rely on faith first and foremost.

"It interests me now. There was a time when I used to kind of shy away from that, because... there's just something about it that you just don't want to talk about. You don't want to hear about it. But as you get older, it comes to the forefront of your mind and so it's like you want to go and find out things about it."

Most participants were unaware of the true meaning of — AFRICAN AMERICAN FOCUS GROUP MEMBER advance care planning, using it interchangeably with end-ofCOMMENTING ON DEATH life care, which they connected with life insurance and funeral planning. Many misinterpreted the materials they were given, and thought that advance care planning referred to an agency or organization where all advance directives are stored. Hospice staff, therefore, should emphasize the role of the family, and that it is possible to name the person who would make decisions on a patient's behalf. There was significant distrust that even if preferences are specified in writing, that the medical professional in charge would not honor them. "What I sense that you're leading at is, a person fills out a document and then you get this document notarized or something and this goes to some agency and then when the person is ill then the hospital had the responsibility to contact this agency and see if this person has a document ready and the document says or the person says, 'This person wants to be kept alive by all means possible,' then the doctors are going to be bound by that document. I don't think its going to happen like that." — AFRICAN AMERICAN FOCUS GROUP MEMBER COMMENTING ON ADVANCE DIRECTIVES Many said they would not want to be kept alive on life support indefinitely because of a fear of being a burden on their loved ones, but would want a few weeks to be given a chance at recovery. While most feel that advance care planning is a wise idea, concerns were expressed; some even stated that the very idea of writing your wishes down was quite strange, especially "pre-crisis."

CI Copyright 2008 National ilospice and Palliative Care Organw-atisnt. Ali rights reserved.

B. CAREGIVING

The African American family structure is usually tightly-knit, extended, matriarchal, and includes many close friends who are considered kin. While families are more dispersed today, it is still expected that family members will find a way to care for loved ones in their own homes. This choice is always preferred to someone coming 'from the outside.' Therefore, caregiving provides the strongest foundation on which to begin a discussion of end-of-life issues. Participants repeatedly stated, "We take care of our own." It is important to stress that hospice supports caregivers; it does not replace family members or preclude them from playing a central caregiving and decision-making role.

"I think we talk about mostly caring for each other or our loved one at the end, during the end of their life on earth other than just their dying. Blacks seem to be concerned with taking care of their people." — AFRICAN-AMERICAN FOCUS GROUP MEMBER

C. UNDERSTANDING OF HOSPICE About half of the participants had heard of hospice care, although there was much confusion over what hospice really is. Some recognize that hospice is for when "they run out of things to do medically; they can't do anything to cure you." Yet many think of it as a place someone is "sent away to" when their family has "abandoned" them, and equate it to nursing homes. Because nursing facilities are viewed so negatively, it is important to emphasize that hospice care is most often provided in a person's own home. The most frequent concern was the financial aspect, and an inability to believe that Medicaid, Medicare and most private insurance companies cover hospice expenses. Some were still doubtful even after reading NHPCO handouts explaining the Hospice Medicare Benefit.

C..) Copyright 20118 National I lofpim and Palliative Care thganlmtion._All rights reserved.

Section III. Strategies for Reaching Out to African American Communities

There are many ways to conduct outreach that meets the needs of your organization and your community. By showing yourself as a true partner who wants to give, you engender goodwill and open the doors to all members of your community. The most successful outreach programs have been patient, and have taken time to simply observe and listen. We suggest that you be very creative and pursue opportunities that you wouldn't ordinarily consider. Above all, remember the deeply rooted historical issues for most African Americans, and be sensitive to these in your interactions.

A. GET ORGANIZED

Before implementing any strategies in your outreach, it is important to critically assess your existing resources, survey your community, formulate a plan and gather support. This foundational analysis is critical to any outreach effort, no matter which community you are targeting. While it is always noble to want to expand and diversify your clientele, you must be prepared to serve them adequately, should your outreach be successful! •

As you begin, your first step should be an assessment of your existing financial and personnel resources. Will the overall financial health of your organization be able to support the special requests and additional expenses that will arise as you conduct your outreach and your census increases?

Evaluate resources.

Visit the Caring Connections Web site at wwwcarlainfo.orgicommunityfor resources that can get you started. For instance, "The Golden Rules of Outreach" outlines essential elements of outreach, and "Community Assessment Guide" helps you evaluate the specific end-of-life needs in your community.

Additionally, do you already have a staff person who is designated as outreach coordinator? Can you afford to hire new staff? Perhaps you have someone who is already engaged in community outreach, but his/her work is focused on a different ethnic population. Conceivably, this person might be able to take on additional duties, or assume a new role. (We will explore this point in more detail in "Find the Right Fit" section of this Guide.)

• Survey your community. Gather local demographics as well as your own organization's current trends. Learn what African Americans in your community already know (or don't know) about hospice and palliative care. Some may be well aware but choose other options, while others may be misinformed and not understand the true benefits. The focus group findings summarized previously in this Guide offer some insight, and you might consider conducting your own one-on-one informational interviews or organizing small focus groups to gather data specific to your community. Or, hold a town hall meeting to open a wider dialogue.

10 $ Copyright 7008 National Hospice and Palliative Care Organization. All rights

TeSETVV(.1

The structured conversations in this type of gathering provide opportunities for community members to share their concerns, needs and questions about end-of-life care and services. See Caring Connections "Convening Town Hall Meetings" at http://www,caringinfo.org/Community/OutreachStrategiesAndTools.htm for details. With the knowledge gained during these groups and/or meetings, you will have targeted, detailed and intimate information that gives you the most personal perspective on how African Americans in your own community truly think and feel about end-of-life care. Your staff will be better educated and your ability to serve the community will be infinitely greater.

Lyla Correoso, MD has tound that there

is a great lad,

of understanding among both the African American at, well as the general population regarding end-of-life care options and treatment. She d.,:scribeE sonic specific examples. Encountering many caregivers who simply quit their jobs to take care of a parent, spouse

•

•

Be certain that your senior leadership and all levels of staff are on board with your outreach plans. The entire organization should be engaged and share the same vision of inclusiveness and growth. The key element is forming a planning team, which should include staff as well as a wide range of community members. These individuals will ensure that a core working group is in place to support the hard work of your primary outreach liaison, and provide reassurance that he/she is part of a larger team working together to build lasting links between your hospice (or coalition) and African American community members. (More suggestions for team planning and building will be discussed in the "Build Partnerships" section of this Guide). Gather support and form a planning team.

Develop a plan. As you gather your data and support, decide where you want to start. Discuss short and long-term goals and expectations. Develop a plan of action, one that is linked to any existing marketing strategies for hospice access in your service area (see the "Consider Marketing" section of this Guide). Tap into existing networks, particularly the African American hospice outreach programs operating across the country that are highlighted in this guide.

or other loved one, not knowing about the Family and Medical Leave Act (FMLA). Little to no understanding of the concept el

paiiiative care. Hospice home care statistics for the organization revealed there were 5,000 patients who could benefit from the palliative care model but were not getting referred accordingly. So it is not only the patients themselves who are un-informed. hut many healthcare professionals, as well. A suspicion of hospice even among nurses. who in some cases also had very little understanding of advance directives particular problem in the state of New York because patients are required to have healthcare

proxies,i.

in response to this,

special hospice teaching program initiated designed specifically for nursel:.

And to

help those nurses who were

struggling to find the right words with their patients, the organization developed a care with talking points fur use when interacting: ,vith

patients and tarnilie

11 C Copryright 200F. National 1 lospIte and Palliative Care Organization. All rights reserved.

•

Train your team. Make sure your hospice incorporates diversity training into your staff orientation or ongoing inservice education. Train all of your staff, including administrative and clinical personnel, as they are all part of the team. Emphasize the following end-of-life care issues specific to African American communities: healthcare history, healthcare disparities, spiritual aspects of care, and sociological and cultural perspectives on death and dying.

Cassandra Cotton, CNA, CHPNA, of Nathan Adelson Hospice, shares the following story that illustrates the need for staff to be culturally sensitive. "You need to start hy asking, What's in your basin?' This refers to the contents of the personal care kits that patients in her program receive upon admission. Many people don't know that fine tooth combs are difficult to use and can be damaging to African American hair. And so if you present a welcome packet with items that are not suitable for them, it gives the impression that the organization doesn't really know or care about patients It also misses an opportunity for deeper understanding and connection. Give your staff the right tools to care for patients, and make sure they know how to use them correctly.'

An excellent resource is the Duke Institute on Care at the End of Life's APPEAL (A Progressive Palliative Care Educational Curriculum for the Care of African Americans at Life's End) training. Designed specifically for healthcare providers working with African Americans facing serious illness, the curriculum (accredited CEU's) includes a wide range of topics: spirituality, cultural beliefs, values and traditions of African Americans that may influence end-of-life care, the impact of racial disparities throughout the healthcare continuum, and barriers to quality care for African Americans with serious illness and strategies to improve their care. For more information about APPEAL, visit www.iceol.duke.edu.

B. FIND THE RIGHT FIT As you begin your outreach to African American communities, your planning team must be led by the right messenger. This messenger is the one who serves as the primary point of contact and organizer for all African American outreach activities. It is a big job, and hopefully one made more manageable by the support of your entire planning team. In addition, consider the diversity of the team itself. While it is not absolutely necessary and will not guarantee success, if your staff reflects the community you are seeking to serve, your ability to connect may be enhanced, •

Select a messenger. As introduced in the "Get Organized" section of this Guide, if you do not already have a point person, perhaps one can be hired, or another position can be adapted to fulfill the role. Alternatively, you might find a current hospice volunteer or another community member who would be willing to take on these responsibilities in a volunteer capacity. If you can make this happen, we suggest that you clarify how this person will serve as an official representative of your hospice and speak on your behalf. In filling this position, there are some important skills the person must possess. Personality matters more than anything else. Is this person open-minded and creative? Is he/she the type of person who can develop and maintain relationships? Is he/she comfortable with public speaking? What about offering prayers? In many

12 CopyrIgitt 2001i National }Insploe and

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settings at which African Americans will be present, it is expected that a prayer will begin and end a meeting, so he/she must be both comfortable in prayerful environments, as well as saying prayers him/herself. Is he/she able to engage with diverse groups of people? What level of commitment does he/she bring? Can he/she be patient and commit for the long term? Does he/she have a willingness to work after hours and to attend a variety of ftinctions across town? Finding the right fit for that individual who will share your primary message with the community is of the utmost importance, so try to make your match carefully and appropriately. • If you can, hire diversely. Making staff diversity a priority is simply smart and forward thinking - it enriches your organization and ensures that you remain vibrant and growing. For the specific purpose of outreach to African Americans, many hospice programs expressed that it can help if some members of the team look like the patients they serve. So if your staff is not already diverse, consider targeted recruitment to build a team that more accurately mirrors the wide range of people represented in your community. As mentioned in the "Get Organized" section of this Guide, be sure to provide diversity training for all of your staff, especially for those engaged in direct patient and family contact.

"I don't think necessarily you have to be an African American to provide good care to African Americans, but it you're not, you really need to be aware of the culture and some of the issues in that culture, and really look at how you feel about dealing with people from that culture," — AFRICAN AMERICAN NURSE 15

C. EDUCATE, SUPPORT AND LISTEN TO YOUR COMMUNITY Informing, caring for and genuinely hearing the needs of the African American community are essential elements in your outreach, and enrich the opportunity for positive community-building. Simply meet the community where it is. Try to do more listening than talking in your growing relationships. Yet be sure to focus on education, show your support for the family systems that are already in place caring for loved ones, take your time, ask questions and listen to the answers. We suggest that you leave behind any preconceived ideas and stereotypes and don't make assumptions. • Address what hospice is and is not. Be sure to focus on the "mis-facts," and don't assume that everyone is accurately informed. Learn what misconceptions are prevalent, and address the common misunderstandings. One of the biggest barriers to hospice use among African American communities is that they associate hospice with a "place" as opposed to a concept, and that "place" is where they go to die, so it's definitely not a "place" they want to go. There is also the view that suffering is part of hospice because traditional medicine is no longer allowed, or that pain is actually encouraged based on faith beliefs. Clearly, awareness among caregivers is a key to building true understanding.

is From an interview for the Institute of Medicine's "Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care" report, 2002.

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So wherever you are, whenever given the opportunity, explain hospice benefits clearly. The ability to pay should not be a deterrent for anyone, and particularly African Americans who are more often uninsured. Explain the Hospice Medicare Benefit, and how re-certification works, if needed. Patients and families, and even some healthcare providers themselves, are often unacquainted with the benefits available should the patient live past six months; they are also sometimes unaware that some patients "graduate" from hospice.

Cassandra Cotton, CNA, CHPNA, of Nathan „ kft pi e snares this perspective on rile need to educate families about pain end, suffering. "Education is a huge component for patients, families and faith leaders. No one should die in pain. Alleviation of pain does not mean that prayers and hope for healing are discontinued. Pain and suffering are not necessary for atonement uf indiscretions. Yet my own mother viewed her suffering as necessary for past sins. She died believing that if she had had just a little more faith she would have been healed."

•

Support the caregiver. Recognize and respect the strong history and tradition in African American communities of "taking care of our own." African Americans have done so for centuries, and so effective outreach activities should not include a "we'll come in and do it for you ... because we can do it better" message. Offer to support current caregivers, explaining how the interdisciplinary team will care for the family, as well as the patient's physical, emotional and spiritual needs. Explain different options for care, from home-based to inpatient facilities.

•

Take your time and be patient. Because many African Americans are suspicious of hospice and the entire healthcare system, and prefer to keep their illness to themselves, you must be patient throughout this process. Be prepared to make multiple visits, with many family members present, sometimes even with the pastor involved (see the "Embrace the Faith Community" section of this Guide), acting as a family liaison. This won't be a one-time conversation, and you may not get buy-in the first time. You must be willing to go through many rounds with the family so they know you're committed and that you truly have their best interests at heart.

•

Listen to their story. As healthcare professionals, you have an incredible wealth of information — both from your clinical training as well as your professional experiences, and the natural inclination is to want to share all of it. Yet many African American families are not going to be interested in hearing from you just yet — they would rather be heard themselves, first. Sometimes it's best to listen. Many patients and families want someone to take the time to hear about their life's journey.

Gloria Ramsey, RN, JD, a nationally recognized expert in bioethics, nursing education, and health disparities, as well as a professor with the Uniformed Services University of the Health Sciences in Bethesda, Maryland, shares the following observations about the need to respect privacy and how differently African Americans deal with crisis. "What's of concern, from a deeply rooted cultural belief. is that African Americans are very private about diagnoses. The whole notion of people coming to the house, driving the vehicle with the hospice logo on it — these are difficult things for African Americans to accept. The concept of it being 'my business, and I don'( want people in my business' can be struggle, as well, because in an effort to keep people out of 'my business,' families are iceeping out the very people who could be oi oreat help

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You and your team members may need to adjust your approach. Currently, your preferred style for initial consults might be to say, "Here's what hospice can do for you." Instead, begin the conversation with, "What can we do for you?" A frequent comment made by African Americans under hospice care is that they would actually like to be asked what they think, what they know and how you can help. A common statement is "If only we had been asked." So ask the questions and go from there. Eventually, the time will come to share the benefits and support that the hospice team will be able to provide.

D. FIND YOUR VOICE AND LET YOUR MESSAGE BE HEARD Whenever and with whomever you engage, do so consistently, with a clear voice that sends the same message every time — we care, and are here to support you in all of your needs. Be mindful of the actual language used in personal conversations, and if appropriate, integrate faith-based language as you are comfortable. Your words and messages are critical as you strive to be heard. •

Be genuine. This is a simple, yet profoundly important element in your outreach. Be sincere and transparent. Connect deeply, and seek to genuinely empathize with the range of end-of-life issues your African American community is facing. You and your colleagues must be willing to devote time and energy to making lasting changes that support your outreach. With your staff embracing this intention, it is one that your community will eventually buy into. Anything less is disingenuous and will be quickly dismissed as staged efforts to gather people in without true substance.

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Use the right words. Try to use simplified terminology. Palliative sedation, end-of-life care, DNRs, advance care directives, opioids, artificial hydration and nutrition - while these are all used frequently in hospice settings, for someone unfamiliar with the healthcare system and facing crisis, these terms can be very confusing and even frightening. Consider focusing on the term "comfort care," especially in the beginning. When simplifying your language, however, be careful to not do so in a patronizing manner. Many healthcare professionals, who use medical jargon in everyday speech, should be reminded that using less technical language is a basic courtesy to patients and families who are just learning how to navigate the system. In addition, be sure to recognize the connected role of faith and medicine when having conversations with the African American community (see the "Embrace the Faith Community" section of this Guide.) Steer clear of scientific and medical absolutes as much as possible, and if you're comfortable, include references to faith when you engage African Americans in dialogue.

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Rely on word of mouth. Your commitment, your passion and your high standards of care will speak for themselves, and your personal relationships will inspire confidence. Within African American communities, personal testimony and word of mouth are among the most meaningful ways to share trusted information and get your message out. Rely on the good that you do being shared verbally within the various community systems that exist. While this shouldn't preclude some targeted marketing as discussed in the "Get Organized" and "Think About Marketing" sections of this Guide, it is a frequent method of information sharing within the African American community, and one that can be relied on.

Dr. Bernice Catherine Harper, MSW, MSc.PH, LLD, one of the original leaders of the African American hospice movement, a former Medical Care Advisor to the Department of Health and Human Services (HHS), founding president of the Foundation for Hospices in SubSaharan Africa (FHSSA), and a former Board member of the National Hospice and Palliative Care Organization (NHPCO), emphasizes the importance of recognizing the role that "Dr. Jesus" plays for African American Christians facing serious illness, "Among African Americans, there are those who will be suspicious of anyone who purports to have medical answers that are best left to 'Dr. Jesus.' Be careful with any comments that begin with, 'The doctor said ...' or 'The experts all say These statements of medical absolutes will not go

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Regardless of how your planning team is structured or who is in charge, it is critical to operate within more of a social work frame, and less from the bottom-line business perspective. While building the numbers will be vital as you seek to maintain support and justify your outreach efforts, it is not the only thing that matters.

over well. Instead, consider saying, While only God can

Remember that it's not just business.

really know when it's your mother's time, the best medical information tells us that ...' or 'We really can't know for sure, but with God's will and what medical science tells us ...' This manner of explanation is presented in a culturally appropriate manner and takes in the role of faith, and will be 'heard' best

E. LOOK AND THINK BEYOND HOSPICE

There must be a commitment to more than simply introducing African Americans within your community to hospice. It's more than numbers and larger than your organization. It is about social justice and ending healthcare disparities, and helping African Americans recognize that hospice truly helps the living. As you reach out, simply consider the big picture.

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Consider more than the illness. Sometimes a patient's illness is just one part of a bigger, highly complex family system. It's one thing to struggle with physical pain, but altogether another to be so overwhelmed by medical expenses that there simply isn't enough money to buy groceries for the family. Ensure that your staff is aware of the community resources available to help with a wide range of issues, some completely removed from the patient's physical needs, and be certain that they share this information in detail with patients and families. Above all, an environment should be created in which a patient or family member feels comfortable enough to bring these kinds of problems to anyone on the team.

Stacie Pinderhughes, MD, of Norm General Hospital, New York, NY, rernii aft us that, "Blacks and Latinos don't want to 'embrace your dying.' So in communities of color the discussion can't he about the dying. it has to he about the living. Initiatives must answer the question, 'How does this nalliativf

Recognize disparities and remember history. In this Guide's overview and focus group summaries, a very brief review is provided of African Americans views and experiences with regard to healthcare and death and dying. Additional research reflects that many African American doctors themselves treat their own patients differently, too, and are often inclined to treat disease more aggressively, and turn to hospice later, rather than sooner. This attitude is driven both by the patients, who prefer the treatments for longer than is necessary or beneficial, and by the doctors, who want to "do right" by their African American brothers and sisters. Be mindful of the realities of treatment differences, healthcare disparities and basic historical experiences.

Lyla Correoso, MD explains, "Sometimes death is not the biggest factor. Sometimes staff has to focus on concrete services, such as paying for the electric and securing guardianship of ultildrer

care help my living?'"

and/or parents before they can deal with issues of death and dying. Many homes are in need of additional support prior to the onset of illness. that is, there was dysfunction before, su there is no reason to expect that these problems will F. away when tragedy strikes."

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F. CONSIDER MARKETING Marketing is just one aspect of outreach and community engagement along with education, public/community relations and sales. If you don't get your message out, who will? Remember that there are many misconceptions about hospice within the African American community. This is an opportunity to dispel those myths and spread the word about what hospice is, and is not! •

Revise existing collateral or create new materials. Collaborate with your communications team, and be sure that all of your public relations and marketing materials — brochures, newsletters, annual reports, and training manuals — anything that the public will see — offer an accurate representation of your demographics and a thorough understanding of the population you seek to serve. Images that African Americans will connect with include extended family gathered around the bedside of a loved one, families sitting together and holding hands, and a faith leader praying over a patient with family present. Consider revising/re-thinking all of your collateral, including everything from the display boards you set up at area events to welcome packets for patients and families. Some hospices include coupons from local restaurants and hand-made quilts —anything that makes a personal connection and expresses warmth and concern. If you don't have the resources or time to create or re-create your own marketing materials, Caring Connections offers a variety of brochures that you might consider utilizing.

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If your hospice is part of a wider healthcare system in which all public relations and marketing are managed by a separate department, communicate well before any advertising is submitted. Don't let anything go out until many eyes have viewed it, especially your own, checking for accuracy of language and appropriateness of images. Since you are the one delivering the message, be sure that the actual materials are ones that are suitable and present the right ideas to draw in the African American community. Work within your systems.

Sally Sharpe, RN, with Pike's Peak Hospice & Palliative Care in Colorado Springs, CO, serves as palliative liaison for communications and marketing. Revising existing collateral was a key part of her outreach strategy. "We formed a coalition to help look at our existing materials. We found that most only included images of white people, which wasn't an accurate representation of our community at all, and they missed an opportunity to target and address the specific fears and needs of the African American community. So we created a new brochure and video that includes images of African Americans, Hispanics, Asians and Caucasians. Basically, the pictures in the outreaa materials have to look like your community, and having a specific Handout just fertile population you're targeting critical. It should also include the right buzz tiS, which, in this case, are, relief af sidievimj, comfort, family and faith, and overall, less of E. focus on death and more no 'transition.'

18 'c Copyright 2008 National Hospice and Palliative• Care Organisation. All rights reserved.

G.

BUILD PARTNERSHIPS

The foundation of all outreach is relationships, built over time on deep trust and understanding. Seek them out in both obvious and obscure areas. Commit to fostering meaningful, life-long partnerships with a wide variety of African American groups in your community. Nurture them and continually re-examine them to be sure they are thriving and mutually beneficial. This section lists a number of ways and a wide range of organizations that you can turn to, to get your community-building underway and your partnerships established for vibrant, mutually beneficial, long-term engagement.

Stacie Pinderhughes, MD, oilers the following suggestion for connecting with area businesses,

specifically local restaurants. "Food is very important in African American culture. It is life. It is nurturing. So building a relationship with Sylvia's, a well-known restaurant in our area, has been vital. Sylvia's agreed to provide meals to hospice patients and their families once a week. Having a restaurateur of this caliber come in with food that is familiar, is key. Offering families the opportunity for table fellowship is important. Theologically it is very Eucharistic: and this brings great peace to all who are with us."

As discussed in the "Get Organized" section of this Guide, it is imperative to gather support. Your planning team can be comprised of staff and volunteers (with all interdisciplinary team members represented), as well as a wide range of African American community leaders. Don't leave anyone out! Invite local faith leaders, healthcare professionals, business leaders, academics and students to be a part of the team that will guide your outreach. Invite members to attend meetings, and encourage them to consider committing to meeting regularly to provide guidance, suggestions, focus and oversight.

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Engage the entire community.

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Learn about African American organizations. There are numerous groups, committees, organizations

and coalitions within your community geared specifically towards African American interests and needs. Some are nation-wide, and others are based right in your own community and serve the needs of your population. Gather this information by simply asking anyone in a position to know, scouring local media, noting community events, surfing the Internet and checking your local Yellow Pages. When you have a fairly comprehensive list, and have done the necessary research to learn about their priorities and interest, start reaching out. (Suggestions for how to do this may be found in the next two sections, "Embrace the Faith Community" and "Participate in and Host Community Events.")

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Some of these groups include: + Professional organizations, such as the National Medical Association (www.nmanet.org), National Black Nurses Association (www.nbna.org), and the National Association of Black Social Workers (WWW.11absworg) + Local chapters of the NAACP (www.naacp.org), National Urban League (www.nul.org) and National Black Chamber of Commerce (www.nationalbcc.org) + Multi-cultural centers, both within the Cheryl Gilkes, a professor of sociology and community and on college campuses African-American studies states: "Throughout + Health-related organizations, such as HIV/AIDS, history, black churches have shielded African child/maternal health, diabetes, heart disease, and Americans from the harmful effects of others personal and structural racism and their + Sororities and fraternities on college campuses, worship services have also functioned as a and their related alumni groups and members therapeutic community where people can sing through the National Pan-Hellenic Council (a with jay and exuberance or cry out in pain coalition of the nine largest historically African among Oinsii who care and understand."1 American Greek-letter fraternities and sororities with over 1.5 million members) + Men's organizations, like 100 Black Men of America (www.100blackrnen.org) and the Masons (www.freemasonry.orz) •:• Women's organizations, including the National Council of Negro Women (www.ncnw.org) and Sisterhood Agenda (www.sisterhoodagenda.corn) • Join them. While you may be asked to attend a specific group meeting as a result of the relationships you build, also be proactive and join them, showing your commitment and passion for their cause. Contact their leadership first, and ask whether they have any topics they would like you to address at one of their upcoming meetings (see the "Participate In and Host Community Events" section of this Guide.) If they don't have something in mind, offer your own presentation ideas, and set aside a singular agenda of promoting your own hospice. Instead, use these opportunities to get to know the members themselves and to learn about their needs. Promoting your program and welcoming new consumers will come in time. Caring Connections offers a Faith Community Outreach Guide that can serve as a supplement to this section. It provides a very comprehensive review of why reaching out to faith communities is so important and detailed strategies for how to do so. Visit www.caringinfo.org/Cominunity, then click on "Faith Outreach" to download the Guide for free.

'6Gilkes, C.T. (1980). The Black Church as a therapeutic community: Suggested area for research into the black religious experience. Journal of the Interdenominational Theological Center, 8, 29-44.

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Link up. Hospice can be linked to so many causes in your

community, presenting perfect partnerships for collaboration. An example is the Balm in Gilead programs, which focus primarily on African American HIV/AIDS awareness and cervical cancer (ISIS Project). Often, their events will be cosponsored by local churches. (See the "Embrace the Faith Community" section of this Guide.) By pooling resources on projects and events, the benefits can be enormous. •

Gloria Ramsey, RN, JD, relates, "You want to go into a place where you're building upon existing and already established relationships and infrastructure. You can't build that capacity and do the work, too. There needs to be great give and take between both parties. After you've made your assessment (because you need to know your baseline), let them assess it they went to work with you, too. Build on the knowledge you gather atoqt community, culture and church — all these must go together."

Young adults, teenagers, even `tweens' have the energy and enthusiasm of youth, and an excitement and passion about causes that can invigorate families, schools and communities. Many are often seeking to fulfill community service hours, either through their school or their church, and will eagerly take on a variety of tasks within your hospice, providing diversity through ethnicity and age! Young people will be eager to help spread the word about you and what you do, especially if they're engaged in a project that excites them. So don't leave this pool of potential participants out when seeking opportunities for partnership-building. Involve and engage young people.

H. EMBRACE THE FAITH COMMUNITY Within African American communities, faith can carry more weight than medicine. As discussed in the "Religion" section of this Guide, many African Americans are deeply connected to their faith community and will turn there for support before seeking help from other agencies. The church serves as the bedrock of spiritual activity, a center of social engagement, an "If I can't have cure in my body, at least indispensible source of information on all topics and a let me have healing in my soul." critical foundation of support in times of crisis. BISHOP SIMON GORDON, TRIEDSTONE FULL GOSPEL BAPTIST CHURCH, • Faith is "It." Studies suggest that African Americans are CHICAGO, ILLINOIS willing to participate in health education programs such as smoking cessation, blood pressure and cancer screenings when they are held at their churches, mosques, and synagogues. And since the place of worship is often the primary source of information on a wide range of subjects, it offers one of the best ways to reach the widest audience in a safe, trusted environment.

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Find your "In." Begin by identifying the person who handles health-related issues. This might be a lay leader, member of the Diaconate (deacon or deaconess), parish nurse, the head of the congregational care ministry or a social worker who serves as bereavement coordinator. He/she can be your conduit to the pastor (unless you are able to meet with the pastor from the outset). Set up a time to meet and find out the needs of the congregation. If appropriate at the first meeting, offer to host an advance directive or a hospice session. If the church holds its own health fairs, ask to set up an exhibit. Consider attending services regularly. Come early and stay late for personal introductions and to distribute materials if appropriate. Become a presence in the church. In time, congregants will know you as the hospice contact, and may start coming to you with their needs. Research shows that there are more than 1,700 churchsponsored outreach programs providing for the spiritual and physical well-being of African Americans. These programs cover basic needs such as food, clothing and shelter; financial aid and counseling for personal problems; health-related concerns such as HIV/AIDS and substance abuse; and recreation and fellowship for youth and families.17 So within this spectrum of faith-based support, be aware that you may be competing with many requests from other groups and simply emphasize that hospice can also be a part of those conversations.

Sally Sharpe, RN, involves pastors as intimately as possible in ali interactions, particularly in the very beginning. "We ask pastors to be present when the initial meeting takes place with a family, or at e minimum, to call in from thei► offices while we're meeting with the family. The best strategy is to try to make sure that the pastor is actually there in the home. We have developed a great relationship with our African American community and church. If the pastor is pro-

process much easier, and infuses ii with trust and security"

hospice, it makes the

one. Not all clergy and faith leaders have the skills to advise families on end-oflife decisions. Be aware that many families will keep their pastor intimately involved in discussions and decisions about their care. Some families will even ask their pastor to be present for at least the initial meeting with hospice admissions staff. Welcome his/her presence and encourage the family to keep that relationship strong. The Pastor's role is a critical

Generally, pastors emphasize the duality of spirituality and proper medical care, and when serious illness is involved, it is important that he/she understands the wide range of hospice services, and how they can support his/her congregants. Be aware that some families see the pastor's job as praying for healing, first and foremost. While the pastor him/herself will acknowledge that he/she cannot work miracles, the mere suggestion of hospice might be of concern to a family who will perceive it as a pastor turning away from faith and more towards medicine. Pastors often find themselves negotiating the delicate balance between continuing to pray for hope and healing, but also encouraging the supportive network and resources of hospice. "Billingsley, A. (1999). Mighty like a river: The Black Church and social reform. New York: Oxford University Press.

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Celebrate life and living, and the role of faith and hope! Explain that hospice is not

Dr. Bernice Catherine Harper, MSW, MSc.PH, LLD, skates rhis perspective on the need to recognize death and dying and views

about giving up and ending life prematurely, but instead about celebrating life and making the time remaining as meaningful as possible. Hospice's focus is appropriately on life and living, with the ever-present acknowledgment of the role that faith plays. Because faith and healthcare are inextricably linked within African American communities, your team will be unsuccessful if you avoid spirituality and talk only about medicine. But do emphasize that accepting hospice does not mean the patient must give up faith and hope for healing. Hope is always a part of hospice.

hvrrice within African American communities. "Re aware that African Americans, like most of us, are not into death and an

dying; they are into life and living! As a general rule, they see death as going home. and going away from a wok of discrimi• nation and hardship. So they can't get too excited about hospice.

lo them, hospice is a white aviddte class rttovement, and not one they view as personally applicable. So we need to help them understand it and be aware of it and present it to people of color in the appropriate cultural context. Be prepared to address the underlying concerns of the patient and family who will respond with, 'Where have you been my whole life? When I needed clothes? Or food? Now you come when I'm dying. But I'm going home. I don't need this now.' We need to break those barriers to healthcare and hospice for African Americans."

Check out Caring Connections' It's About How You LIVE campaign toolkit and NHPCO's 200809 Outreach Guide which uses the theme of Hope, Dignity, Love...It must be hospice. Both resources contain a collection of ideas, suggestions and materials to help you with your outreach efforts.

The Duke Institute on Care at the End of Life, and the Duke Divinity Office of Black Church Studies developed the Proctor Covenant Statement on End-of-Life Care. The covenant serves as an initial pledge signed by faith leaders from across the country to support initiatives to improve end-of-life care in the black church. The Proctor Covenant statement is available to view and download in the Appendix of the Guide and can be -used as a theological statement on quality care at the end of life and a defining statement, standard and guide for African American clergy. For more information, visit

www.iceaduke.edu.

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I. PARTICIPATE IN AND HOST COMMUNITY EVENTS To help make hospice a household word in your community, participate in local community events, especially ones organized by and for African Americans, or ones that target issues of interest to the African American community. Organize events and invite everyone to participate. These can be held in conjunction with existing events or independently. Either way, find the appropriate focus and work collectively to plan successful gatherings that energize and inform and bring your diverse groups together. 1 As with many other elements of your outreach, the key is to take your time and do your research before rushing into things. Excellent tools and resources are available at www.caringinfo.org/event planning toolkit, where you will find checklists for planning your event, sample flyers and posters, even how to publicize your event. While most event planning strategies can be effective regardless of your audience, some will be more successful depending on the specific community you are trying to reach. The following essential elements are geared specifically for participating in and hosting events for African American audiences. •

Come to my house! Look for opportunities to invite folks to "your house." Welcome all potential partners and interested parties to an inaugural event to initiate your outreach (see the "Build Partnerships" section of this Guide). Community or prayer breakfasts are often very successful and can be incorporated into a workday. Ask one of the attending faith leaders to offer a blessing before the meal, thereby acknowledging the integral role that spirituality plays from the very beginning. Think very creatively about opportunities to gather. For instance, an event scheduled around the birthdays of Charles Drew (the father of the modern blood bank) or Daniel Hale Williams (the physician who performed the first successful open heart surgery) is an excellent way to honor the contributions of prominent African Americans, built around a creative celebration that also focuses on wider healthcare/hospice topics. In conjunction with your coalition or planning team, select a prominent community figure to host the event.

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Can I come to your house? As your relationships grow, invitations to "go to them" may come. If you sense reticence, spend more time getting to know one another, and in time, as trust is established, the call may happen. If appropriate, bring copies of your collateral materials to distribute.

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Make your message relevant. Don't waste your new partner's time or yours by trying to guess which topics will be of most interest. Ask your contacts which issues are important to them. Combine this with the data from your community surveys. (See the "Get Organized" section of this Guide.) You can serve as a clearinghouse organizer for a variety of topics, all with specified relevance to that community group. Hospice, advance care planning, caring for the caregiver, and how to pay for healthcare may be topics to offer depending on your initial assessment.

24 CI Copyright 2110h Nat iotiad tiospire and Puldiatwe Care Organization. Al! rights reserved.

• Team up. Don't try to do it alone! As mentioned in the "Build Partnerships" section of this guide, there are many other organizations with whom you can partner and host joint events. Hospice can play a role with health prevention groups focusing on HIV/AIDS, diabetes and cancer, or offering bereavement support to families of accident, suicide or homicide/gang-related victims. Families affected by homicide or gang violence are a natural outreach for hospice since staff members are experts at loss. Bereavement support to families experiencing loss bridges a gap and shows hospice as an inclusive caring group of experts who seek to help all those who are facing death and dying. However, when referring to what might be perceived as a stigmatizing topic for African American communities, be sure to avoid the suggestion that the issues are solely African American problems; homicide, gang violence and crime are universal societal concerns. •

Go everywhere, attend everything. There is rarely a lack of African American-focused community events to attend. Go to as many as you can, and invite staff members with you, particularly if it's to a high profile event, such as a gala or an awards banquet. Include a diverse representation of staff disciplines and ethnicity. And, if appropriate, bring your table-top displays and handout materials.

Toula Wootan, Director of Community Relations

for Community Hospice of Northeast Florida in Jacksonville, turned her outreach into a special initiative on community relations, targeting everyone who might be in need. She says, "It's air about elationship-biliiding, and the overall goal should be one of community building. You must be patient and take time to build trust particularly around healthcare. You need to show that you care about the health and welfare of the community. Show your sincerity by taking things a step further. For instance, we've partnered with one of our city hospitals for indigent care. We reach out by providing preventative care to local churches. In addition, we have the largest murder rate in the state of Florida. So to address a broad community concern, we launched an initiative called 'Operation Safe Street.' We involved many community groups, particularly African American churches. The focus was on gun control. We're experts in loss and bereavement. but can otter Our support in ways other than hospice. We try to show that we care about the community, holistically. Om message is that we're here to care for you, and we're concerned i'ibutA the saute issues that you're facing."

Examples of events include:

❖ Black History Month ❖ Martin Luther King, Jr. Day + Kwanzaa (usually celebrated by younger families in addition to Christmas) + Juneteenth celebration (www.juneteenth.corn) ❖ Women's and men's group meetings and conferences •S Fashion shows ❖ School productions ❖ and more ...!

,r•

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"You should always ask to participate in health fairs or other community events, such as nineteenth celebrations. These events are a part of the community, and you should absolutely be there to help support the event and the occasion itself Some will be invitation-based, so your goal, as part of relationship-building, is to be the one invited. If you've built the right kind of relationship, one that is focused on more than death and dying, they'll see you as a resource and want to include you. So if you've been the first to reach out and trust has been built, you will be seen as a true partner" — SALLY SHARPE, RN PIKE'S PEAK HOSPICE, & PALLIATIVE CARE COLORADO SPRINGS, CO

J. CONNECT WITH AFRICAN AMERICAN MEDIA The opportunities to get your message out are plentiful and consider the media outreach as an extension of your outreach plan. Research your local media, and determine which are targeted to African Americans. There are often daily, weekly or monthly periodicals, published by and for the African American community, as well as radio and television stations (both secular and religious) geared specifically to the same. •

Research media outlets. While you may have already done a good amount of market research on your community, as described in the "Get Organized" section of this Guide, do some specific digging to gather all of the information you can on your local media, learning which demographics they target. Turn on your radio and television and tune into their stations. Listen to the advertisements and make lists of popular topics and personalities. This may give you some insight into what's being advertised - by whom and to whom. However, because many people not of African descent rely too heavily on the media for research into the African American community, be appropriately cautious of the information you come across. Many African Americans will tell you that their community is much different than even the black media portrays them. A good comparison is the representation of Italian-Americans in literature and film, where an almost fantasy version is concocted with its emphasis on mafia ties. The best way to research real African Americans is to go into their communities and participate in their everyday activities.

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Make contact. As you have with all other groups or individuals, make formal and sincere introductions. Explain your intent. But before asking about advertising or articles, get to know key staff members - reporters, publishers, DJs. Invite them to join your advisory group, or come to a specific event. As with all of the strategies, a personal relationship will take you much further than throwing collateral at a media representative and expecting it to lead to a prominent feature.

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Get your advertisements and articles printed. Buy advertising space and submit articles - and don't necessarily propose something that solely features your hospice, at first. Instead, help celebrate a traditional African American holiday (see the "Participate in and Host Events" section of this Guide). While "Hospice X honors Topic Y" is getting your name out, it's being done in a more subtle and gracious manner. In time, you might present a specific ad or article on your hospice or coalition — and make sure that it is appropriate to the African American community, featuring images and language that are relevant and fitting.

Sharon Lefton, Senior Director of Access Initiatives, VITAS Innovative Hospice Care® of Chicagoland, suggests that

it's wise to link up with ethtr'tc•specific media. but to bk. subtle in your advertising with them. "Historically, African American businesses weren't able to advertise or be employed by some local media, so they created their own This has built a rich pool of African American media specialists who know how to reach their audience. While our objective is to get VITAS' name out, we try to do it in ti way that is not just about hospice. We submit ads that convey a message of 'When you may need us the most.' This way, we create a presence and an awareness of VITAS in the community ir, an understated way."

Find your own spokesperson. There may be an African American celebrity, local or national (e.g., music industry representative, civic leader, local business owner) who would be interested in becoming another voice for hospice. If a high-profile personality lives in your own community, or someone you know has a personal contact that could be promising ... pursue it!

As all of these strategies suggest, one of the most important things that your organization must do when working with any cultural community for the first time is to build trust. Gaining the trust of a community takes time. Developing trust must be your main goal when seeking new partnerships and relationships. In our goal-oriented society, it is all too easy to focus on project goals rather limn relationships. However, meaningful relationships ma the best path to longterm accomplishments. This is the best guarantee to successfully build partnerships and implement outreach activities with the African-American community.

For more information and resources on outreach to diverse communities, visit www.caringinfo.ory/communityr and click on 'Diversity Outreach'.

27 ei Copyright 2008 National Hospice and l'allianve Care Organization, All rights reserved.

IV. Model Outreach Programs and Initiatives

A. BRIDGING THE HEALTHCARE GAP: A TOUCH OF GRACE HOSPICE, INC., CHICAGO, ILLINOIS After working in the hospice field for many years, Dr. Jennifer Moore knew she wanted to help decrease healthcare disparities among minorities, and specifically, increase the use of hospice services among African Americans. Her solution? Founding and directing her own hospice, one that would focus on serving African Americans in the inner city. With a mission of bridging the healthcare gap among minorities and improving the overall quality of care to the local population, A Touch of Grace Hospice, Inc. focuses on the highest standards of care and cultural sensitivity, and provides extensive and ongoing diversity education and training for its staff, serving a census that is comprised of 97% minorities. Moore understood what the barriers were from the outset — primarily distrust and misunderstanding. She found that increasing minorities' use of hospice must begin with healthcare provider education, and how hospice itself is presented. She advises professionals to stay away from typical "med-speak" and to present information in a culturally appropriate manner. The role of faith must be emphasized, not in a sense of giving false hope, but relating to their fears, and acknowledging the need to pray for hope and healing. Another large obstacle is re-informing the community on what hospice truly is, and dispelling myths, especially those pervasive among African American communities. So education is a key component — in all of her outreach, with individual patients and families, as well as staff. Moore has found that once the community is well informed, residents become more receptive to the hospice dialogue. And the fact that her staff mirrors the community it is serving (94% are African American) is a particularly beneficial aspect. Moore's key outreach strategies include the following: • • + + + + ❖

Create and make available culturally sensitive material Acknowledge the faith of the community Address what hospice is not Strive to have healthcare staff that looks like the community you're serving Meet with people one-on-one and be genuine Rely on word of mouth Consider more than end-of-life needs, because for some families, you have to start there before you can even talk about hospice

28 Virlopyrii,ilit 2008 National Irovice and Palliative Gare Otgani.-ation All tight. rosenitid.

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B. CONNECTING THOUGH FAITH: NATHAN ADELSON HOSPICE, LAS VEGAS, NEVADA

It's personal for Cassandra Cotton, CNA, CHPNA, Community Relations and Outreach Coordinator at Nathan Adelson Hospice. After making a career switch to hospice after her own mother became ill, Cotton found fewer African Americans being served, and set out to change that. So she turned to her faith community, and with the support of her supervisor and pastor, established The Caring Touch Ministry at her church, one the largest congregations in the state. The ministry's goals are to support those who have been diagnosed with a life-limiting illness or are experiencing a debilitating disease, and to provide ongoing education about hospice services and continue the dialogue on end-of-life issues with the wider community. Cotton says, "The education process begins with identifying the role of both the faith community and hospice. For centuries, faith communities have been the epicenter of caring. Hospice providers must find ways to educate faith communities and engage faith leaders in end-of-life care conversations. The congregation must have an informed, trained leader who has an understanding of the range of hospice services and how these services are delivered." Cotton's first steps with The Caring Touch Ministry were to create a task force that helped spread the word throughout the congregation, and conducting a survey of the congregation to learn what they knew about hospice. She found great misunderstanding about hospice and a reluctance to discuss death and dying. So her strategies focused on hospice education, and training a core team of congregants to serve as members of the hospice ministry. Members now serve as hospice educators, spiritual caregivers and important referral sources. Her next and ongoing initiative was setting up a workshop as part of a wider church health fair, entitled, "Getting Your House in Order." The focus was on advance care planning, presented in a scripture-based way so that the message of "preparing for your home-going" was one the community would hear. She emphasized the importance of building partnerships for the event, and linked with other churches, local Social Security and Medicare offices, the Nevada Center for Ethics and Policy, elder-law attorneys and notaries, nurses and hospice aides, volunteers, and funeral directors. She made sure that other community partners, such as local eateries and entertainers, would provide in-kind donations, and make the event fun and interactive. "Getting Your House in Order" events provide ongoing education and are well received by the entire community. And The Caring Touch Ministry serves as a solid link between its congregation and Nathan Adelson Hospice.

29 rripyriglit 2008 National 1-1ospice and Palliative Gare Organization. All ngIns reserved.

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C. EMPHASIZING COMMUNITY-BUILDING: PIKE'S PEAK HOSPICE & PALLIATIVE CARE, COLORADO SPRINGS, COLORADO In 2001, One Voice At a Time (OVAT) was begun as an initiative by Pike's Peak Hospice and Palliative Care (PPHPC) to address the under-utilization of hospice services by African Americans in Colorado Springs/El Paso County. Led by Sally Sharpe, a nurse who serves as palliative liaison and director of communications and marketing, OVAT quickly turned into a community-building endeavor as well. Recognized locally and state-wide for its innovative ideas, OVAT has received multiple awards, including the Outstanding Achievement Award from the Colorado Hospice Organization in 2003, and the Urban League Community Outreach Award in 2004. The OVAT advisory committee was formed with the intention of not simply informing the community of what PPHPC does, but also listening to what the community's needs were. OVAT staff focused on spreading that message. Within a year of its inception, OVAT had reached out to other prominent organizations in the African American community such as the Black Leadership Forum, NAACP and the Urban League. From the initial support a coalition was created, including staff, ministers of local congregations, prominent African American leaders and a wide range of community members simply interested in supporting the cause. Recent events include healthcare conferences and fairs, Urban League Elder gatherings, and an NAACP-sponsored Freedom Fund. And as a part of bereavement outreach, an OVAT committee member suggested "Barber Shop Gatherings," which has turned into a popular way to support local African American men in one of their most comfortable settings. In 2003, OVAT released new brochures and a video geared directly towards end-of-life care for African Americans and other minorities. PPHPC credits its success to building strong relationships, initiating community gatherings and always making face-to-face contact (as opposed to direct mailings). While promoting OVAT events, it also sought to build the initiative beyond hospice. OVAT has become a community-building and enriching program, and together with the strong ties built with both the African American and other minority communities, continues to spread the message of hospice and palliative care.

Ct)isyrighl 200& Stilliurial Hospice and PallirAtive Cate Orgarlie.otion. AIL riglzLs toiervui

D. FOCUSING ON CHILDREN: HOSPICE AND PALLIATIVE CARE OF GREENSBORO, GREENSBORO, NORTH CAROLINA Kids Path, a unique children's hospice program developed by Hospice and Palliative Care of Greensboro, is the most diverse program of all those offered by the organization, serving well over fifty percent minorities in both North and South Carolina and West Virginia. Housed in its own facility, it cares for children ages 3 — 18 who are living with serious, progressive medical conditions. In addition, it provides support for children and youth experiencing the grief associated with the illness or death of a loved one. The goal of Kids Path is to enhance the quality of life for children and those who share their lives while regaining a sense of normalcy. Ursula Robinson, Vice President of Clinical Services, explains that "the program is unique in that it targets all sick children, not only those with a six-month prognosis and eligible for Medicare, but situations where the doctor does not believe they will reach adulthood. It is palliative care in the truest sense." Currently serving 40 children, it also reaches out to grieving children whose parents are in hospice. Kids Path is the only vendor allowed in the Guilford County school system. While the demographics of the area show a majority of Caucasian residents, Hospice and Palliative Care of Greensboro and Kids Path serves a very high percentage of African Americans in the community, more than the average hospice. Robinson works with families and the wider community, emphasizing education. "For those who are eligible for hospice benefits and services, it is their right to receive them. We find that far too many don't utilize hospice simply because they don't understand what is available and what they are entitled to." For African American families with terminally ill children, Kids Path serves a community need that offers quality care to minorities, while building trust, faith, hope and understanding.

31 Copyright 2008 National Hospice and Palliative Care Organiration. An rights reserved.

V. Resources for African American Outreach

A. PROFESSIONAL ORGANIZATIONS

• Bureau of Labor Statistics (BLS), www.b1s.gov/news.releaselempsit.nr0.htrn, is the principal fact-finding agency for the federal government in the field of labor economics and statistics. The BLS is an independent national statistical agency that collects, processes, analyzes and disseminates essential statistical data to the U.S. public, Congress, other federal agencies, state and local governments, and the business and labor sectors. • Caring Connections, www.caringinfo.org, a program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer and community engagement initiative to improve care at the end of life, supported by a grant from The Robert Wood Johnson Foundation. Caring Connections provides free resources and information that address end-of-life issues such as advance care planning, serious illness, caregiving, grief and more. •

Duke Institute on Care at the End of Life, www.iceol.duke.edu, is a catalyst for growth and transformation, a global resource to improve care for those at life's end. The mission of the Institute is to create and promote the growth of knowledge and to encourage the application of that knowledge in caring for the whole person at life's end.

•

Institute of Medicine of the National Academies (TOM), www.iorn.edu/?id=33252, provides a vital service by working outside the framework of government to ensure scientifically informed analysis and independent guidance. The IOM's mission is to serve as adviser to the nation to improve health. It provides unbiased, evidence-based and authoritative information and advice concerning health and science policy to policy-makers, professionals, leaders in every sector of society and the public at large.

• National Center for Cultural Competence (NCCC), www11.geowtown.edu/research/gucchd/nccc, provides national leadership and contributes to the body of knowledge on cultural and linguistic competency within systems and organizations. Major emphasis is placed on translating evidence into policy and practice for programs and personnel concerned with health and mental healthcare delivery, administration, education and advocacy. • National Center for Health Statistics (NCHS), www.cdc.gov/nclis/fastats/black health.litm, is the nation's principal health statistics agency and operates as a part of the Centers for Disease Control and Prevention. The NCHS compiles statistical information to guide actions and policies to improve the health of US citizens. It serves as an excellent public resource for health information and a critical element of public health and health policy.

32 © Copyright 2008 National !Inspire and Palliative Care Orgaririarinn. All rights reserved

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National Hospice and Palliative Care Organization (NHPCO), www.nhpco.ou, is the world's largest and most innovative national membership organization devoted exclusively to promoting access to hospice and palliative care and to maintaining quality care for persons facing the end-of-life and their families.

•

Office of Minority Health (OMH), www.onthrc.gov/templates/browse.aspx?1v1=28T1v1ID=51, seeks to improve and protect the health of racial and ethnic minority populations through the development of health policies and programs that will eliminate health disparities. It advises the federal government on public health program activities affecting American Indians and Alaska Natives, Asian Americans, Blacks/African Americans, Hispanics/Latinos, Native Hawaiians and other Pacific Islanders.

•

Robert Wood Johnson Foundation, www.rwjforg/reports/gn/046134.htm, seeks to improve the health and healthcare of all Americans. Its efforts focus on improving both the health of everyone in America and their healthcare — how it's delivered, how it's paid for, and how well it does for patients and their families. U.S. Census Bureau, www.census.gov/prod/2007pubs/acs-04.pdf, serves as the leading source of quality data about the nation's people and economy. This link is to a 2004 report that present a portrait of the African American population in the U.S. It provides a wide range of information on demographic, social, economic and housing characteristics of the population.

B. EDUCATIONAL TOOLS

•

APPEAL (A Progressive Palliative Care Educational Curriculum for the Care of African Americans at Life's End) Training, Duke Institute on Care at the End of Life, www.iceol.duke.edu/events/2008appealtraining.html, is designed for healthcare professionals working with African American patients and families facing serious illness in hospitals, hospices, outpatient clinics, nursing homes and office-based settings and covers a wide range of issues pertinent to end-oflife care, from cultural issues to healthcare disparities. Participants include physicians, nurses, social workers, medical chaplains and other clergy, psychologists, counselors, hospice and hospital administrators, pharmacists and family caregivers.

•

Key Topics on End-of-Life Care for African Americans, Duke Institute on Care at the End of Life, www.iceol.duke.edulresources/lastmiles/index.html. Topics covered in this on-line book range from the impact of health disparities on end of life decision-making to spiritual aspects of care at life's end, to sociological and cultural perspectives on death and dying and finally, even to health policy considerations. The information is provided for individuals and organizations interested in increasing their understanding of African American perspectives on end-of-life care that influence important questions such as access to hospice and palliative care, and the quality of care delivered in those settings.

33 OCopyright 2008 National Hospice and Palliative Care Organir.ation. All rights reserved

C. WEB SITES

•

African Americans.com, www.africanamericans.com/Demographics.htm, has over 750 web pages on the African American community. The site covers many topics, including black history, the civil rights movement, slavery, African American art, and black gospel music. It also includes profiles of famous African American historical leaders such as Martin Luther King Jr., Muhammad Ali, Frederick Douglass, as well as current black celebrities, like Tiger Woods, Michael Jordan, Serena Williams, and more.

•

Black Demographics.com, www.blackdemographics.conz, provides interesting facts and statistics about the African American population nationwide.

34 Copytqllt 200,4 National liovice and Pailiallve Care Oiganization. Ali tights rescued .

D. LITERATURE

Articles Anderson, K.O., Mendoza, T.R., Payne, R., Valero, V., Palos, G.R., Nazario, A., Richman, S.P., Hurley, J., Gning, I., Lynch, G.R., Kalish, D., Cleeland, C.S. (2004). Pain education for underserved minority cancer patients: a randomized controlled trial. Journal of Clinical Oncology 22 (24): 4918-4925. Bogart, L.M., Thorburn, S. (2005). Are HIV/AIDS conspiracy beliefs a barrier to HIV prevention among African Americans? Journal of Acquired Immune Deficiency Syndrome, 28(2), 213-218. Born, W., Greiner, K.A., Sylvia, E., Butler, J., Ahluwalia, J.S. (2004). Knowledge, attitudes, and beliefs about endof-life care among inner-city African Americans and Latinos. Journal of Palliative Medicine, 7(2), 247-56. Bouton, B.L. (2004). The Compelling Need for Cultural Competence. Hospice and Palliative Care Insights, 4, 4-7. Buchanan, J. (2008). Medicine meets a culture gap. USA Today. Retrieved February 15, 2008 from www.usatoday.com/news/health/2008-02-13-doctors-cultural-cornpetency N.htm Burrs, F.A. (1995). The African American experience; breaking the barriers to hospices. Hospice Journal, 10(2), 15-8. Carter, C.L., Zapka, J.G., O'Neill, S., DesHarnais, S., Hennessy, W., Kurent, J., Carter, R. (2006). Physician perspectives on end-of-life care, factors of race, specialty, and geography. Palliative Support Care, 4(3), 257-71. ColOn, M., Lyke, J. (2003). Comparison of hospice use and demographics among European Americans, African Americans, and Latinos. American Journal of Hospice and Palliative Care, 20(3), 182-90. Connor, S. R., Elwert, F., Spence, C., Christakis, N.A. (2008). Racial disparity in hospice use in the United States in 2002. Palliative Medicine, 22: 205-213. Cort, M.A. (2004). Cultural mistrust and use of hospice care, challenges and remedies. Journal of Palliative Medicine, 7(1), 63-71. Cotton, C. (2004). Hospice and faith communities, An experience of how to share the care. Hospice and Palliative Care Insights, 4, 13-16. Crawley, L., Payne, R., Bolden, J., Payne, T., Washington, P., Williams, S. (2000). Initiative to improve palliative and end-of-life care in the African American community. Journal o f the American Medical Association, 284(19), 2518-21. Fears, D. (2005). Study: Many Blacks cite AIDS conspiracy. Washington Post, p. A02.

77 ctipy right 2008 National Hospice and Palliiitive Cie Olgam4ition. All rights. reserved.

Fischer, S.M., Sauaid, A., Kutner, J.S. (2007). Patient navigation, A culturally competent strategy to address disparities in palliative care. Journal of Palliative Medicine, 10(5), 1023-1028. Freeman, H.P.; Payne, R. (2000). Racial Injustice in Health Care. New England Journal of Medicine, v.342, n.14, p.1045-1047. Freking, K. (2008). Minorities cite healthcare disparities. USA Today. www.usatoday.com/news/health/2008-0310-health-disparities N.htm Gaffin, J., Hill, D., Penso, D. (1996). Opening doors, improving access to hospice and specialist palliative care services by members of the black and minority ethnic communities. Commentary on palliative care. British Journal of Cancer, 29, S51-3. Gardia, G. (2004). Diversity in volunteer programs; what are our needs? Hospice and Palliative Care Insights, 4, 36-37. Gordon, A.K. (1995). Deterrents to access and service for blacks and Hispanics, the Medicare Hospice Benefit, healthcare utilization, and cultural barriers. Hospice Journal, 10(2), 65-83. Greiner, K.A., Perera, S., Ahluwalia, J.S. (2003). Hospice usage by minorities in the last year of life, results from the National Mortality Follow back Survey. Journal of American Geriatric Society, 51(7), 970-8. Han, B., Remsburg, R.E., Iwashyna, T.J. (2006). Differences in hospice use between black and white patients during the period 1992 through 2000. Medical Care, 44(8), 731-7. Haas, J.S., Earle, C.C., Orav, J.E., Brawarsky, P., Neville, B.A., Acevedo-Garcia, D., Williams, D.R. (2007). Lower use of hospice by cancer patients who live in minority versus white areas. Journal of General Internal Medicine, 22(3), 396-9. Johnson, K.S., Kuchibhatla, M., Tanis, D., Tulsky, J.A. (2008). Racial differences in hospice revocation to pursue aggressive care. Archives of Internal Medicine, 168(2), 218-24. Johnson, K.S., Kuchibhatla, M., Tanis, D., Tulsky, J.A. (2007). Racial differences in the growth of non-cancer diagnoses among hospice enrollees. Journal of Pain and Symptom Management, 34(3), 286-93. Kagawa-Singer, M., Blackhall, L.J. (2001). Negotiating cross-cultural issues at the end of life, "You got to go where he lives." Journal of the American Medical Association, 286(23), 2993-3001. Kapo, J., MacMoran, H., Casarett, D. (2005). Lost to follow-up: ethnic disparities in continuity of hospice care at the end of life. Journal or Palliative Medicine, 8(3), 603-8. Kvale, E.A., Williams, B.R., Bolden, J.L, Padgett, C.G, Bailey, F.A. (2004). The Balm of Gilead Project, a demonstration project on end-of-life care for safety-net populations. Journal of Palliative Medicine, 7(3), 486-93.

t:7•CopyrIght ?Oa National IIcisfike and I'dihative C:are Oiganizarion. All rights reserved.

Lundgren, L.M., Chen, S.P. (1986). Hospice, concept and implementation in the black community. Journal of Community Health Nursing, 3(3), 137-44. Miller, A. (2008). Limited medical access hurts Georgia's minorities: Fulton among worst counties, report says. Atlanta Journal-Constitution. Retrieved April 25, 2008 from www.ajc.com/metro/contenVinetro/stories/2008104/191medical 0419.html Moore, J. (2004). African American leadership in hospice and palliative care; the need for an increased presence. Hospice and Palliative Care Insights, 4, 27. Mundell, E.J. (2008). Cultural beliefs may keep Blacks from hospice care. HealthDay. Retrieved February 7, 2008 from www.healthday.com/printer.asp?AID=612355 Neubauer, BJ., Hamilton, C.L. (1990). Racial differences in attitudes toward hospice care. Hospice Journal, 6(1), 37-48. O'Mara, A.M., Arenella, C. (2001). Minority representation, prevalence of symptoms, and utilization of services in a large metropolitan hospice. Journal of Pain and Symptom Management, 21(4), 290-7. Payne, R., Payne, T.R., Heller, K.S. (2002). The Harlem Palliative Care Network. Journal of Palliative Medicine 5(5): 781-792. Payne, R., Medina, E., Hampton, J.W. (2003). Quality of life concerns in patients with breast cancer, evidence for disparity of outcomes and experiences in pain management and palliative care among African-American women. Cancer, 97(1), 311-7. Reese, D.J., Ahern, R.E., Nair, S., O'Faire, J.D., Warren, C. (1999). Hospice access and use by African Americans, addressing cultural and institutional barriers through participatory action research. Social Work, 44(6), 549-59. Rhodes, R.L., Teno, J.M., Connor, S.R. (2007). African American bereaved family members' perceptions of the quality of hospice care: Lessened disparities, but opportunities to improve remain. Journal of Pain and Symptom Management, 34(5), 472-479. Rhodes, R.L., Teno, J.M., Welch, L.C. (2006). Access to hospice for African Americans, are they informed about the option of hospice? Journal of Palliative Medicine, 9(2), 268-72. Rosenberg, N.D. (2001). 2 levels of treatment: Pain control lags for minorities and women. Milwaukee Journal Sentinel. Retrieved April 9, 2008 from www2.jsonline.com/alivelnews/aprO1/pain23042201a.asp Rosenfeld, P., Dennis, J., Hanen, S., Henriquez, E., Schwartz, T.M., Correoso, L., Murtaugh, C.M., Fleishman, A. (2007). Are there racial differences in attitudes toward hospice care? A study of hospice-eligible patients at the Visiting Nurse Service of New York. American Journal of Hospice and Palliative Care, 24(5), 408-16.

37 Copyright 2008 National lospire and Palliative Care Organi7asion. All rights reserved

Schmidt, L.M., Kinsella, A. (2003). Enhancing communications with multicultural patient populations. Caring, 22(3), 32-5. Searight, H. R., Gafford, J. (2005). Cultural diversity at the end of life: Issues and guidelines for family physicians. American Family Physician, 71(3), 515-522. Soltys, F.G. (1986). Recruiting black volunteers for a hospice setting, understanding the community and your role in it. American Journal of Hospice Care, 3(6), 22-6. Welch, L.C., Teno, J.M., Mor, V. (2005). End-of-life care in Black and White: Race matters for medical care of dying patients and their families. Journal of the American Geriatrics Society, 53, 1145-1153. Zapka, J.G., Carter, R., Carter, C.L., Hennessy, W., Kurent, J.E., DesHarnais, S. (2006). Care at the end of life: Focus on communication and race. Journal of Aging and Health, 18(6), 791-813.

Books and Guides

Holloway, K.F.C. (2003). Passed On, African American Mourning Stories. Durham, NC: Duke University Press. Murphy, P.A., Price, D.M. (1998). Dying and Grieving in the Inner City. Retrieved March 4, 2008 from www.hospicefoundation.org/teleconference/books/lwg1998/inurphy price.pdf Prograis, L., Pellegrina, E. (2007). African American Bioethics, Culture, Race and Identity. Washington, DC: Georgetown Press.

38 110 Copyright 2008 National Hospice and Palliative Care Organization All rights rewrved,

; ith:-11:=11-1 GUIDE 14 wommi i

VI. Acknowledgements

Author: Juliette Marchioli National Hospice and Palliative Care Organization Alexandria, VA Contributors: Lyla Correoso, MD Visiting Nurse Service of New York New York, NY

Ursula Robinson, MSW, LCSW Hospice and Palliative Care of Greensboro Greensboro, NC

Cassandra Cotton, CNA, CHPNA Nathan Adelson Hospice Las Vegas, NV

Sally Sharpe, RN Pike's Peak Hospice & Palliative Care Colorado Springs, CO

Bernice Catherine Harper, MSW, MSc.PH, LLD Former Medical Care Advisor, HHS Founding President, FHSSA Former Board Member, NHPCO Rockville, MD

Toula Wootan, MSH Community Hospice of Northeast Florida Jacksonville, FL

NHPCO Staff: Sharon R. Latson, BA VITAS Innovative Hospice Carer of Chicagoland Chicago, IL

Melanie Abijaoude Philip Banks Kathy Brandt, MS Helen Ennis Gwynn Sullivan, RN, MSN Emil Zuberbueler, BS

Jennifer Moore, PhD A Touch of Grace Hospice, Inc. Chicago, IL Stacie Pinderhughes, MD North General Hospital New York, NY

Duke Institute on Care at Tracey A. Adams, M Div Richard Payne, MD Jeanne Twohig, MPA

Gloria Ramsey, JD, RN Uniformed Services University of the Health Sciences Bethesda, MD

39 Cr Copyright 7.008 National 1Totpiot arid Palliative C.are Organization. All rights reserved.

e End of Life:

OUTREACH GUIDE

VII. Appendix

Click

links below to view and download the documents. All documents may he accessed al www.caringiiiro.orgIcoinniunity then clicking on "Diversity Outreach".

('roctor_covencint Srateinen on End-oalle care 1pdf) Advance rnreetives and End-ol-Life Decisions Lppt) t;JOer:stei ding Hospice, Palliative' Care and End-of-Lae Issues (p_pt)

40 Copytight 2008 National Hospice and Palliative Care Organisation. All rights teerred,

A Racial Gap in Attitudes Toward Hospice Care - The New York Times

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A Racial Gap in Attitudes Toward Hospice Care By SARAH VARNEY AUG. 21, 2015

BUFFALO — Twice already, Narseary and Vernal Harris have watched a son die. The first time — Paul, at 26 — was agonizing and frenzied, his body tethered to a machine meant to keep him alive as his sickle cell disease progressed. When the same illness ravaged Solomon, at 33, the Harrises reluctantly turned to hospice in the hope that his last days might somehow be less harrowing than his brother's. Their expectations were low. "They take your money," Mrs. Harris said, describing what she had heard of hospice. "Your loved ones don't see you anymore. You just go there and die." Hospice use has been growing fast in the United States as more people choose to avoid futile, often painful medical treatments in favor of palliative care and dying at home surrounded by loved ones. But the Harrises, who are AfricanAmerican, belong to a demographic group that has long resisted the concept and whose suspicions remain deep-seated. It is an attitude borne out by recent federal statistics showing that nearly

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half of white Medicare beneficiaries enrolled in hospice before death, compared with only a third of black patients. The racial divide is even more pronounced when it comes to advance care directives — legal documents meant to help families make life-or-death decisions that reflect a patient's choices. Some 40 percent of whites aged 70 and over have such plans, compared with only 16 percent of blacks. Instead, black Americans — far more so than whites — choose aggressive life-sustaining interventions, including resuscitation and mechanical ventilation, even when there is little chance of survival. The racial gaps may widen after January 2016, when Medicare is to begin paying physicians for end-of-life counseling. In 2050, blacks and other minorities are projected to make up 42 percent of people aged 65 and over, up from 20 percent in 2000. At the root of the resistance, researchers and black physicians say, is a toxic distrust of a health care system that once displayed "No Negroes" signs at hospitals, performed involuntary sterilizations on black women and, in an infamous Tuskegee study, purposely left hundreds of black men untreated for syphilis. "You have people who've had a difficult time getting access to care throughout their lifetimes" because of poverty, lack of health insurance or difficulty finding a medical provider, said Dr. Maisha Robinson, a neurologist and palliative medicine physician at the Mayo Clinic in Jacksonville, Fla. "And then you have a physician who's saying, 'I think that we need to transition your mother, father, grandmother to comfort care or palliative care.' People are skeptical of that." Federal policies surrounding hospice also arouse suspicion in black communities because Medicare currently requires patients to give up curative therapies to receive hospice benefits. That trade-off strikes some black families, who believe they have long had

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A Racial Gap in Attitudes Toward Hospice Care - The New York Times

http://www.nytimes.com/2015/08/25/health/a-racial-gap-in-attitudes-...

to fight for quality medical care, as unfair, said Dr. Kimberly Johnson, a Duke University associate professor of medicine who has studied. African-American attitudes about hospice. Dr. Johnson said her black patients were more likely to believe there are actual religious prohibitions against limiting life-sustaining therapy, and that suffering can be redemptive, or "a test from God." And those beliefs, she added, were "contrary to the hospice philosophy of care." But some doctors and clergy members are trying to use church settings to reshape the black community's views, incorporating the topic in sermons, Bible study groups and grief and bereavement ministries. Dr. Robinson, who is black and a daughter of Tennessee pastors, has been helping pastors develop faith-based hospice guidelines. She tells them, "God can work miracles, yes he can, but even in hospice." That message recently rang out from the pulpit at God Answers Prayer Ministries, an African-American church in South Los Angeles, as Bishop Gwendolyn Coates-Stone delivered a sermon on advance care planning. "It's such a great cost to hold on to some of those sicknesses and diseases that eventually are going to take us out," she exclaimed into a microphone, bobbing and weaving in a swirl of royal purple robes. "Just like Jesus talked about his death and prepared his disciples for his death, we ought to be preparing our disciples for our death!" In a moment of benediction, Bishop Coates-Stone made a direct plea: "Help us Lord to have the courage to have conversations with our families," she said, "that will also not leave them wandering and wondering, 'What should I do in case of the death of a loved one?' " Independent journalism. More essential than ever. Subscribe to the Times

A gathering of older blacks convened recently by Dr. Robinson in Leimert

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A Racial Gap in Attitudes Toward Hospice Care - The New York Times

http://www.nytimes.com/2015/08/25/health/a-racial-gap-in-attitudes-...

Park, a middle-class Los Angeles neighborhood, underscored the challenges such efforts still face. "Hospice has not been a good place for African-Americans, unless you're in a white facility and usually you're one of few black people there," said one woman, who along with others attending the gathering asked not to be identified in order to speak frankly. Others in the group nodded. "It gets into money," another woman said. "The treatment is a little bit better, but then there is still the discrimination." Advance directives, in particular, are often seen as sinister, a way for insurance companies to maximize profits. "If you say you want at all costs to live, and they say, 'Well, your insurance company doesn't allow that,' then they're going to pull the plug anyway," said the host of the gathering, Loretta Jones, 73, the founder of Healthy African-American Families in Los Angeles. To help allay those concerns, physicians need to be more explicit during end-of-life discussions, Dr. Robinson said. "We have to be much clearer about why we're trying to have those conversations, or we'll continue to see a pattern of people who really want life-sustaining interventions even when there's limited potential benefit." Camille Wicher, the vice president for clinical operations at Roswell Park Cancer Institute in Buffalo, who has studied African-Americans' end-of-life choices, said hospitals needed to enlist black families who have had good hospice experiences to share their stories with friends and church members. "That's how we learn," she added. "We learn from each other." The Harrises are trying to use their experience to carry out that work. The agony of their son Paul's death in a hospital room informed their treatment decisions when their next son, Solomon, became gravely ill. When his doctor conceded that blood transfusions were of little help, Solomon assented to

A Racial Gap in Attitudes Toward Hospice Care - The New York Times

http://www.nytimes.com/2015/08/25/health/a-racial-gap-in-attitudes,

hospice care in his parents' home. If he was going to be robbed of his future, Solomon would not, his parents decided, be robbed of a good death. As his health failed, nurses from the hospice in Buffalo managed his pain and bathed him tenderly. A social worker helped the family grieve and counseled his young children. All the while, parishioners from his parents' church visited Solomon, amazed to find that hospice was not the grim banishment they had envisioned. "One of the members said, 'I thought you were going to put Solomon in hospice,' " Mrs. Harris recalled. "I said, 'We did."Well, when is he going?' I said, `They come here.' They come to your house?"Yeah, they're taking care of him right here.' " There was even time for reflection, as Solomon wrote in a poem called "After Life." "Fear death?" he wrote. "No, I await death." Solomon died a short while later, but the Harrises say his death has had a lasting effect. "The people in our immediate circle now view hospice positively," Mrs. Harris said. "I think our experience was powerful enough that it changed people's attitudes." Mr. Harris, the pastor of Prince of Peace Temple Church of God in Christ, often evangelizes about hospice during his Sunday morning sermons, while Mrs. Harris has enlisted the wives of black pastors in Western New York, known as the First Ladies, to counter negative views about palliative care. At a recent meeting, the women discussed older church members who might benefit from hospice, and Mrs. Harris wanted to hear how parishioners in the women's churches responded to some recent outreach. "It really opened up people's eyes to the negative stigma of it, feeling like,

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A Racial Gap in Attitudes Toward Hospice Care - The New York Times

http://www.nytimes.cotn/2015/08/25/health/a-racial-gap-in-attitudes-...

`I'm just putting my loved one away, and not caring for them,' " said. Joyce Badger of Bethesda World Harvest International Church in Buffalo. "The power of knowledge that we've gained is really going to help our community." This article was produced in collaboration with Kaiser Health News, an editorially independent program of the Kaiser Family Foundation. A version of this article appears in print on August 25, 2015, on page D1 of the New York edition with the headline: A Racial Divide on Hospice Care.

© 2016 The New York Times Company

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Why African-American seniors are less likely to use hospice PBS NEWS HOUR May 5, 2015 at 6:30pm est Black seniors are more likely than whites and Latinos to forgo hospice care. Due to deeply felt religious beliefs and a long history of discrimination in the U.S., African-American patients are often reluctant to plan for the end of their lives, and more skeptical when doctors suggest stopping treatment. Special correspondent Sarah Varney reports on efforts to change some of those beliefs. JUDY WOODRUFF: End-of-life planning is gaining favor with more and more Americans. But lagging behind this trend are African-Americans, who research shows are, more so than whites and Latinos, skeptical of options like hospice and advance directives. Special correspondent Sarah Varney begins our report in Los Angeles. This story was produced in collaboration with our partner Kaiser Health News. SARAH VARNEY, Kaiser Health News: Dr. Maisha Robinson, a neurologist at the University of California, Los Angeles, is on a mission to change how black seniors die in America. Dr. Robinson grew up a pastor's daughter in Tennessee. Now she's working with pastors like Bishop Gwendolyn Stone in Los Angeles to urge black families to plan for the end of their lives. DR. MAISHA ROBINSON, University of California, Los Angeles: If you look kind of in the Bible, all the people, of course, that Jesus healed, a I died. They went on to die. WOMAN: Right. It's an awesome idea to remind people. They know, but of course they don't want to hear it. BISHOP GWENDOLYN STONE: It's not fun thinking about death. SARAH VARNEY: African-Americans are more deeply religious than other racial or ethnic groups. Three out of four pray daily and more than half attend weekly church services. In many black churches, the belief is that only God, not a doctor or a patient, decides when a life ends. BISHOP GWENDOLYN STONE: I believe that he's got a home on high for me that's not made with human hands. SARAH VARNEY: But Stone says there's a basis in Scripture for planning ahead. BISHOP GWENDOLYN STONE: And just like Jesus prepared his disciples for his death, we ought to be preparing our disciples for our death. Amen?

http://www.pbs.orginewshouribb/african-american-seniors-less-likely-use-hospice/

SARAH VARNEY: There is an ideal image of a good death in America, a clearly worded legal directive reflecting a patient's wishes, avoiding painful and unnecessary medical treatments. But that ideal image is often at odds with the realities of black spiritual life and the lessons AfricanAmericans carry forward from their painful history. As late as the mid-1960s, segregated hospitals were common, and legal, throughout the United States. Even in so-called mixed race hospitals, black patients were often housed on separate floors. The notorious Tuskegee syphilis study, a government-led experiment on black males, lasted until 1972 and killed more than 100 men. Dr. Kimberly Johnson is a geriatrician and associate professor of medicine at Duke University. She says, for African-Americans, the history of abuse is not a cultural artifact. The toxic distrust of the health care system is still deeply felt today. DR. KIMBERLY JOHNSON, Duke University School of Medicine: They receive care in facilities that were largely either segregated or facilities where they — they or their parents or their grandparents wouldn't have been allowed to have received care. And, as a result, they are really suspicious of the kind of care they receive. SARAH VARNEY: Dr. Johnson says black patients and their families then are understandably skeptical when a physician suggests withdrawing medical treatment or stating their wishes in advance. Researchers have found about 8 percent of African-Americans, compared to 43 percent of whites, have an advance directive or living will. And, regardless of income, black patients are more likely than whites and Latinos to forgo hospice and say they want to be kept alive on life support, even when there's little chance of survival. Hospice has been much more successful reaching white middle-class patients. But here in Buffalo, New York, an influential group of African-American pastors and their wives are confronting the skepticism and fears about hospice in the black community through personal stories and prayer. Narseary Harris and her husband, Pastor Vernal Harris lead the Prince of Peace Temple Church of God in Christ in Buffalo. Two of the Harrises' three sons, Paul and Solomon, died from sickle cell disease, an incurable condition that causes the red blood cells to break down. Paul endured a painful and prolonged death at age 26. REV. VERNAL HARRIS: In the African-American community, to put your loved one in a place like hospice, it was something that you never even thought of It didn't matter how ill your — the person was. We believe that, if they were, alive, it was our responsibility to take care of them until they passed. SARAH VARNEY: When their next son, Solomon, grew gravely ill, Narseary says a palliative care specialist urged them to choose hospice.

2

NARSEARY HARRIS: He said, Mrs. Harris, Solomon doesn't have a lot more time. And I really want to recommend hospice care for you. I said, 'We don't want hospice.' He said, 'Mrs. Harris, you don't have to make a decision right now, but let me just introduce you to Hospice Buffalo.' And I said, 'OK, well, we can — we will do that.' I said, 'Solomon, you OK with that?' And he said, `OK.' He wanted to be cremated, and this is actually his urn. SARAH VARNEY: Solomon moved into his parents' home, and soon caregivers from Hospice Buffalo arrived. NARSEARY HARRIS: They talked to Solomon. They explained what they were going to do, and Solomon said, 'OK, so when do I have to go?' And they said, 'You're not going anywhere.' REV. VERNAL HARRIS: Yes. NARSEARY HARRIS: You're going to stay right here. REV. VERNAL HARRIS: Yes. NARSEARY HARRIS: We're coming to you. That's him at school. SARAH VARNEY: Looking at family pictures, the Harrises recalled how both sons had convulsed with pain, a problem that Solomon's hospice nurses addressed. One son's death wholly redirected the passing of another. NARSEARY HARRIS: To see Paul go through that kind of pain, and Solomon going from days of that kind of excruciating agony to being able to sleep, literally go to sleep and not see him, you know, go through that, that was the — I can't even tell you. SARAH VARNEY: At the Harrises' church. word spread quickly that Solomon was dying, peacefully, at home. NARSEARY HARRIS: I said, 'You guys got to come over and see this for yourself.' REV. VERNAL HARRIS: Yes. NARSEARY HARRIS: My sister's thoughts about hospice changed ... my mother's ... the members of our church... SARAH VARNEY: Narseary Harris has been sharing her story with the wives of black pastors across western New York and urging them to help reshape the community's views about hospice.

3

But, back in Los Angeles, at a gathering of black seniors, the challenge Dr. Maisha Robinson faces in changing minds is unmistakably on display. LORETTA JAMES: I want them to do whatever they can. That means they can resuscitate me, to hook me up to a breathing machine, to take and put I.V.s in me, and keep me hydrated. Do not starve me to death, like they did my mother. SARAH VARNEY: Robinson says doctors have to better explain their motivations when it comes to end-of-life decisions. DR. MAISHA ROBINSON: It's the intention that is unclear, many times, in the minds of African-Americans. I think we just have to be much clearer about why we're trying to have those conversations, or we will continue to see a pattern of people who really want life-sustaining interventions even when there's limited potential benefit. SARAH VARNEY: Changing those beliefs seems a daunting challenge, especially when startling racial health disparities remain. But, for pastors like Gwendolyn Stone, easing the pain of death is a worthy calling. For the PBS NewsHour, I'm Sarah Varney in Los Angeles.

4

Tab 2

Summary of Results of RI 2014 Survey; Hospice Use 2011 -13 Hospice Utilization in Rhode island Annual Volunes by Days of Care

Setting: Home

SNF

Inpatient

Total

2011

Beacon Hospice, An Amedisys Company

14,209

60,218

1,964

76,391

Gentiva Hospice

28,179

63,634

2,025

93,838

Home & Hospice Care of Rhode Island

68,918

77,889

6,890

153,697 945

Hospice and Palliative Care Hospice at VNS Of Newport & Bristol Counties

8,574

1,600

102

10,276

VNA of Care New England

7,139

990 -

8,129

VNA of Rhode Island-Hospice

8,174

722

10

8,906

135,193

205,053

10,991

352,182

NA

NA

NA

NA

38%

58%

3%

100%

Total % Change fr Prior Year Distribution by Setting 2012

Beacon Hospice, An Amedisys Company

16,046

66,716

1,689

84,451

Gentiva Hospice

27,389

54,783

877

83,049

Home & Hospice Care of Rhode Island

75,014

74,787

7,351

157,152 1,003

Hospice and Palliative Care 110

9,846 6,983

552 -

VNA of Rhode Island-Hospice

6,798

705

11

7,514

142,076

198,668

10,038

351,785

Totals

Total % Change fr Prior Year

1,125

11,081

Hospice at VNS Of Newport & Bristol Counties VNA of Care New England

7,535

5.1%

-3.1%

-8.7%

-0.1%

40.4%

56.5%

2.9%

99.7%

Beacon Hospice, An Amedisys Company

12,829

53,341

1,350

67,520

Gentiva Hospice

29,955

48,875

1,447

80,277

Home & Hospice Care of Rhode Island

82,124

68,893

7,932

158,949

Distribution by Setting 2013

787

Hospice and Palliative Care Hospice at VNS Of Newport & Bristol Counties VNA of Care New England VNA of Rhode Island-Hospice

11,139

737

8,152

2,305 -

4,984 -

96

11,972 10,457

-

4,984

Total

149,183

174,151

10,825

334,946

% Change fr Prior Year

5.0%

-12.3%

7.8%

-4.8%

44.5%

52.0%

3.2%

99.8%

Distribution by Setting Volume Change '11-'13

13,990

-30,902

-166

-17,236

% Volume Change '11-'13

10.3%

-15.1%

-1.5%

-4.9%

Avg Annual Percent Change '11'-13

5.17%

-7.54%

-0.76%

-2.45%

Pg 1

Continuum Hospice

Summary of Results of RI 2014 Survey; Hospice Use 2011 -13 Hospice Utilization in Rhode island Admissions / Discharges Annual Admissions

Misc . Statistics LOS (Median) Discharges

ADC

2011 Beacon Hospice, An Amedisys Company

735

130

109

209

729

708

27

252

2,839

321

10

421

31

30

176

178

16

28

346

352

27

30

93

93

21

24

4,949

1,812

Beacon Hospice, An Amedisys Company

584

345

20

231

Gentiva Hospice

602

568

22

225

3,218

314

9

429

Gentiva Hospice Home & Hospice Care of Rhode Island Hospice and Palliative Care Hospice at VNS Of Newport & Bristol Counties VNA of Care New England VNA of Rhode Island-Hospice

Total % Change fr Prior Year

964

2012

Home & Hospice Care of Rhode Island Hospice and Palliative Care

28

30

Hospice at VNS Of Newport & Bristol Counties

199

183

19

30

VNA of Care New England

280

275

27

28

VNA of Rhode Island-Hospice

104

106

19

22

5,015 1.3%

1,821 0.5%

Beacon Hospice, An Amedisys Company

962

943

18

184

Gentiva Hospice

641

634

22

216

3,568

393

9

435

24

24

Hospice at VNS Of Newport & Bristol Counties

215

219

15

33

VNA of Care New England

334

318

33

34

68

69

23

14

5,812 797 15.9% 863 17%

2,600 779 42.8% 788 43%

120

916 -49 -5.1% -48 -5%

Total % Change fr Prior Year

965 0.2%

2013

Home & Hospice Care of Rhode Island Hospice and Palliative Care

VNA of Rhode Island-Hospice

Total Change Prior Year % Change fr Prior Year Change '11-'13 % Change '11-'13

Pg 2

Continuum Hospice

Tab 3

Calculation of Volume Projections - Continuum Hospice The following describes the methods used in developing projections of future hospice volumes for this application: VOLUME GROWTH: The Applicant projected growth of hospice volumes using the steps and methods as follows: Step 1

Established an historical base for use in trending volume data using RI 2014 hospice provider survey augmented wl CMS data for 2014. A. Established a 4 year historical base for projection using the following data: Source Year Setting: Home SNF Inpatient Total RI Survey 2011 135,193 205,053 10,991 352,182 RI Survey 2012 142,076 198,668 10,038 351,785 RI Survey 2013 149,183 174,151 10,825 334,946 CMS 2014 154,871 180,791 11,238 347,716 Calculation CNG '11-13 19,678 -24,262 247 -4,466 Calculation CNG '11-14 14.6% -12% 2% -1% Avg Annual 4.85% -3.94% 0.75% -0.42% CMS data was obtained from CMS public use files online portal; https://www.cms.gov/Research-Statistics-Data-and-Systems/Statistics-Tren dsand-Reports/Medicare-Provider-Charge-Data/Hospice.html B.Calculated future growth based on Avg Annual % CNG '11214 2015 162,385 173,661 11,322 347,368 2016 170,264 166,811 11,407 348,482 2017 178,525 160,232 11,492 350,249 2018 187,185 153,912 11,578 352,675 2019 196,267 147,842 11,664 355,773 2020 205,789 142,011 11,751 359,552 C. Choose years 2018 & 2019 as focus for Application given start-up timeline for proposal

Step 2

74160.336-1

Estimated base year 2014 volume needs for underserved populations A. Determined % of Rhode Island population represented by majority (whites) and certain underserved groups* Source: American Fact Finder, US Bureau of the Census; 2014 Pop Group Population % of Pop White 780,406 74%

1

Continuum Hospice

African American Asian Latino I Hispanic Total

83,448 38,027

8% 4%

152,107 1,053,988

14% 100%

Step 2 Continued B.Identified differences inproportion of use among population groups Source: CMS Public Use Files Portal (A) (B) (C) Diff % Pop % Use 74% 20% White 94% African American 8% 2% -6% Asian 4% 0% -3% Latino / Hispanic

14% 100%

Total

3% 100%

-11%

C. Calculated Use rates per 1,000 pop for each group by dividing # of users per group by total Source: CMS Public Use Files Portal (A)

(B)

Users White African American Asian Latino / Hispanic Total

% Use

(C)

Use Rate 100k pop 7.1 94%

5,574 135 22

2% 0%

1.6 0.6

185 5,916

3% 100%

1.2

D Calculated Underserved Population and Unmet Need* (A)

(B)

Group Group Pop Pop/1000

74160.336-1

(C)

(D)

(E)

(F)

Use Rate

Total Potential Users

Actual Users

Unmet Need

2

Continuum Hospice

White African American

780,406

780

7.1

5,574

83,448

83 1.6 596 461 135 Asian 38,027 38 0.6 272 22 250 Hispanic / L 152,107 152 1.2 1,086 185 901 274 Total 1,053,988 342 1,612 1,954 * The underserved population and unmet need were determined by: 1.Calculating the population of hospice care users there would have been for or each group if each group used hospice at the same rate as the majority, ie 7.1 per 1,000 pop as shown in column C of section C above. Calculation of Column (F) was = Column A x Column B of Section C above. 2.And, subtracting the number of actual users for each group, as identifed in Section C above, Column A Step 2 Continued D. Calculated Unmet Need 2014 to 2020 Admissions = Unmet Need identified in Section D, above increased by 1/2 of 1 percent each year for population growth Patient days = Projected admissions for each group X ALOS of 25 days African American Year: 2014 2015 2016 2017 2018 2019 2020

74160.336-1

Admits 461 463 465 468 470 473 475

Pt Days 11,522 11,579 11,637 11,695 11,754 11,813 11,872

Admits 250 251 252 253 255 256 257

Asian

Hispanic ILatino

Pt Days Admits Pt Days 6,238 901 22,528 22,641 6,270 906 6,301 910 22,754 6,332 915 22,868 6,364 919 22,982 924 6,396 23,097 6,428 929 23,213

3

Total

Admits Admits 1,612 1,612 1,620 1,620 1,628 1,628 1,636 1,636 1,644 1,644 1,652 1,652 1,660 1,660

Continuum Hospice

Pt Days 40,288 40,490 40,692 40,896 41,100 41,306 41,512

Tab 4

HOSPICE ANNUAL GROWTH FROM 1982 - 2014

Patients Served by Hospice in the US: 1982 to 2014

Patients Servedby Hospice

1,800,000

1,656,000

1,600,000 453.000 1,51L000

1,400,000

1;41%000 1341.000 / 1.300,000

1,200,000 1,000,000

/ wawa "sawn

800,000

790;000

600,000

546,000 450,000 A40,000 246,000

400,000 200,000 0

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Tab 5

Attachment for footnote 14 Percent Medicare Beneficiaries Use Hospice in 2014 Medicare State

Benef's

Use Hospice

Percent

Arkansas

584,889

34,540

5.91%

Utah

332,922

11,014

3.31%

Iowa

561,461

17,735

3.16%

Ohio

2,111,104

65,314

3.09%

Oklahoma

665,825

19,950

3.00%

South Carolina

908,531

27,101

2.98%

Alabama

947,310

28,051

2.96%

Rhode Island

199,901

5,916

2.96%

3,888,261

114,869

2.95%

174,566

5,051

2.89%

Georgia

1,468,630

42,327

2.88%

Texas

3,516,912

101,161

2.88%

Idaho

270,913

7,759

2.86%

Kansas

477,520

13,655

2.86%

Louisiana

773,650

21,787

2.82%

1,114,049

31,250

2.81%

549,798

15,004

2.73%

Michigan

1,855,600

50,399

2.72%

Wisconsin

1,023,781

27,688

2.70%

Pennsylvania

2,493,027

65,878

2.64%

Oregon

727,224

19,214

2.64%

Nebraska

305,969

7,975

2.61%

1,125,297

29,262

2.60%

Florida Delaware

Missouri Mississippi

Indiana

361,284

8,976

2.48%

1,718,863

42,538

2.47%

Colorado

755,214

18,465

2.45%

Minnesota

888,371

21,673

2.44%

2,030,247

47,766

2.35%

433,598

10,081

2.32%

Tennessee

1,206,356

28,025

2.32%

Massachusetts

1,191,694

26,544

2.23%

New Mexico North Carolina

Illinois Nevada

West Virginia

411,785

9,171

2.23%

Connecticut

620,887

13,827

2.23%

New Jersey

1,466,034

32,148

2.19%

California

5,482,813

120,194

2.19%

Maryland

906,499

19,577

2.16%

1,311,884

28,224

2.15%

Virginia

Maine

299,699

6,442

2.15% ATTACHMENT CONTINUED

Montana

194,922

4,069

2.09%

Hawaii

237,336

4,928

2.08%

1,146,301

23,635

2.06%

New Hampshire

259,087

5,256

2.03%

North Dakota

116,858

2,337

2.00%

Kentucky

846,798

16,458

1.94%

South Dakota

151,924

2,878

1.89%

Vermont

128,074

2,270

1.77%

86,802

1,383

1.59%

New York

3,286,882

45,817

1.39%

Arizona

1,092,674

14,679

1.34%

Wyoming

92,114

1121

1.22%

Alaska

80,108

732

0.91%

Washington

District of Columbia

Source: Kaiser Family Foundation Health Data Portal

Tab 6

ATTACHMENT DISPARITIES IN HEALTH CARE BY SPECIAL POPULATION AND NATURE OF DISPARITY SOURCE: RI Rhode Island's Health Assessment and Annual Improvement Plan (2014) Population

Disparity

Page

Description 18% of Rhode Islanders have disabilities, evenly distributed between males and females. Adults ages 75 and older (51.3%) have the majority of

Age

Disability

Age

Poverty

Age, Gender

Alcohol Use

19 disabilities. 93 20.4 % of children in RI live in poverty, below the national average of 21.3. Nearly 19% of men ages 50 and older engage in binge drinking, compared to nearly 13% of women 171 age 40 and older. Premature birth rates are highest among women with public health

Age, Income

Infant Health

150 insurance.

Age, Race, Ethnicity,

Tobacco use disproportionately affects a few minority youth populations

Sexual Preference

in Rhode Island: African American, Hispanic/Latino, lesbian, gay, bisexual, and youth unsure of their sexual identity (LGBU), and youth with physical Smoking

147 or emotional disabilities. Disabled individuals in Rhode Island are found to exhibit obesity rates that

Disability

Nutrition

19 are nearly double of those without disabilities.

Disability

Smoking

19 without, but less likely to partake in substance abuse. As of the 2010-2011 school year, there were 24,836 children (18% of all K12 students) enrolled in special education, but fewer students with disabilities (58%) graduated as compared to the students without

Disablitiy

12 disabilities 12.0% of adults without a high school diploma are diagnosed with diabetes, compared to 6.4% of Rhode Island adults with at least some college education. Forty-two percent (42%) of adult diabetics in Rhode

Education

Diabetes

20 Island are disabled [20]. Between 2007 and 2009, 7% of the Rhode Island youth population (ages

Education

13 16 to 19) were not in school but were working.

Disparities Inventory 1

Continuum Hospice

Native Americans were the dominant racial/ethnic group of the youth 13 population who were working instead of attending school (15%).

Education

Hispanics represented the largest number of youth working, and the 13 lowest high school graduation rates. [10].

Education

162 Leading causes of death among Hispanics: heart disease, cancer, stroke Gheart Disease, Cancer,

perinatal condition abd unintentional injuries.

Stroke, Perinatal Ethnicity

Conditions, Accidents The majority of new HIV cases among adults were in the men having sex with men (MSM) population. The majority of new cases reported were male (75%), white (54%), and between

Gender

HIV

21 ages 30-39 (42%) [22].

Gender

Nutrition

15 Men are more likely to be overweight than women. The majority of women with income under $49,999 were overweight or

Gender

Nutrition

15 obese, with the rate declining as income rises.

Gender

Nutrition

15 70% of men at all income levels are obese. The proportion of RI's population over 60 is growing more rapidly than other age groups. More than 25% of RI's population will be 60 and older

General

Age

171 by 2030, an increase of 32 % from 2012. RI has a 31.5% health disparity, ie the percent difference in adults aged 25 and older who did not graduate high school and adults with at least a high school education who self-report being in excellent or very good health. This is lower than national average; but there are probablyregions within the

General

Disparities

121 state where the disparity is far greater. Within the core cities, white non-Hispanic students only made up 20% of

General

Education

11 the student populations, while Hispanics made up 53%. Black and Hispanic students show less student engagement than their

General

Education

12 white and Asian classmates.

Disparities Inventory 2

Continuum Hospice

General

Education

12 Male students are less engaged than their female classmates The majority of public school students (pre-kindergarten through grade 12) who received bilingual education services, deemed as "English Language Learners (ELL)" are from core cities. For example, during the 2011-2012 school year, 6% of the total public school population were ELL

General

Education

12 students; and 76% of the population resided within the core cities Infant mortality rate in the 4 core cities is 8.1 as compared to 5.3 in remainder of the state. Risk factors for infant mortality include low birthweight, preterm birth, delayed or no prenatal care, maternal age

General

Infant Health

General

Language

124 (older than 40 or younger than 20), and smoking during pregnancy. 10 79% of the state's population speaks only English at home RI has a high rate (70.3) of preventable hospitalizations in the Medicare

General

Over Use Hospitalization

113 population for diagnoses that are amenable to non-hospital based care 14.5% of Rhode Island adults with reported annual incomes of less than $25,000 are diagnosed with diabetes, compared to 7.9% of adults

Income

Diabetes

20 diagnosed with diabetes with annual ncomes of more than $75,000. Low income populations with less education have a higher prevalence of

Income

Diabetes

116 diabetes. 25% of people with household incomes less than $25K smoke, and 11% of

Income

Smoking

71 people with household incomes above $50K.

Disparities Inventory 3

Continuum Hospice

Insurance

Dental Health

Coverage., Income

112 Approximately 97% of Rhode Island dentists work in private practices, while 3% work in a public health setting, such as in a dental safety net site. The majority of dentists in private settings do not uniformly accept individuals with all types of insurance coverage. Dental safety-net providers provide comprehensive oral healthcare services regardless of an individual's insurance status or ability to pay. However, their capacity does not and cannot meet the needs of all who need dental care. A significant portion of the state has insufficient capacity to serve low-income populations. As of January 2014, the federal Bureau of Health Professions has designated all or part of 14 Rhode Island communities as DHPSAs that lack dental services. Rhode Island needs an estimated 33 additional

Lead Paint Exposure

primary care dentists (general and pediatric dentists) to provide oral healthcare to 167.310 underserved residents. 13 80% of homes were built before 1940 when lead paint was allowed. In 2011, 180 children had an elevated blood level (greater tnan 10 axed!)

Lead Paint Exposure

13 for the first time in their lives. 65% of RI children living in poverty live in Central Falls, Pawtucket,

Location, Age Proverty

94 providence and Woonsocket. Tooth decay, tooth decay originated-inflammatory pulp/periapical lesions,

Medicaid Pop.

Dental Health

or toothache were more frequently reported by Medicaid enrolled and 14 uninsured adults. Obtaining oral healthcare is a persistently challenging issue for certain Rhode Island populations: children and families with low income, those of

Minorities, Age, Preg Dental Health Non-English

racial and ethnic minorities, pregnant women, individuals with special 14 health care needs and the elderly. While the ESL students spoke 84 different languages, the vast majority

Speakers

12 (75%) spoke Spanish.

Non-English

12 Both nationally and within Rhode Island, ELL students scored significantly lower on standardized tests than their classmates.

Speakers

Disparities Inventory 4

Continuum Hospice

Poverty Poverty

12 12% of the population was below the poverty line as of 2011. Compared to the non-Hispanic white population, all minorities had a 13 higher percentage of their populations living in poverty. For whites and African Americans, heart disease, cancer, stroke and unintentional injuries are the 1st, 2nd, 4th and 5th causes of death respectively; disabetes for African Americans, and chronic resppiratory 154 diseases for whites. Elevated risk factors for cardiovascular disease- obesity, hypertension, 126 smoking, diabetes and physical inactivity - are a challenge in RI IN RI, age adjusted cancer mortality rate is 20% higher for African Americans than whites, 43% higher for colorectal cancer mortality, and 128 48% higher for breast cancer mortality. 152 There are 51,560 African Americans in Rhode Island, making this group the second largest minority population in the state (4.9%). Nearly 99% of African Americans in the state live in urban areas. Estimates from the 20072009 American Community Survey data indicate that the median age for the African American population is 29.0 years whereas the total state median age is 39.4 years. Nearly 93% of the African American population is age 65 or younger, while 86% of the state population is age 65 or younger.

Race

Accidents

Race

Cancer

Race Race

Cancer General Information

Race

HIV

Race

Infectious Disease

Race

Nutrition

As of 2008, persons with AIDS were by race: Hispanic, 18%; African 21 American 25%; white 55%; and others 2%. Gonorrhea, chlamydia and hiv/AIDS are more common among African 21 Americans than other minority groups. Non-hispanic African American men have the highest rate of being 15 overweight or obese.

Race

Nutrition

15 Asians and Pacific Islanders have the lowest overweight and obesity rates.

5

Disparities Inventory Continuum Hospice

African Americans experience higher rates of hypertension and heart disease and report greater difficulty quitting or reducing smoking. This is likely due to greater nicotine inhalation as a result of smoking Race

Smoking

71 mentholated cigarettes.

Race

TB

21 Asian and Pacific islanders had the most cases of tuberculosis The leading causes of death among Native Americans are heart disease

Race

Heart Disease , Cancer

166 and cancer. The percentage of Affrican Americans living below the poverty level is about two times that of the overall state population and almost three times that of the White population. The medican household income for African Americans is $38,500. That is $16,200 less than the state median and about $21,000 less than that for the White population. A lower percentage of African Americans graduate from high school than that for the White and overall state populations. The percentage of African Americans who are unemployed is almost two times the percentage

Race

Income

152 unemployed in the White and overall state populations. The percentage of Asians and Pacific Islanders living below the poverty level is slightly higher than that of the overall state population and almost two times that of the White population.The Asian population has a lower unemployment rate than all other minority groups and the overall state population. The median household income for Asians and Pacific Islanders is about $56,700. That is $2,000 above the state median and about $2,800

Race

Poverty

157 less than that for the White population. Non-Hispanic, white Rhode Islanders experience the most poisoning events overall, while non-Hispanic African American Rhode Islanders

Race , Ethnicity

Poisioning, Overdose

22 proportionately experience the greatest number of overdose events .

Disparities Inventory 6

Continuum Hospice

Race / Ethnicity

Dental Health

Race / Ethnicity

Diabetes

Race / Ethnicity

Diabetes

Race / Ethnicity

Disability

Race, Gender

HIV

Race, Poverty

Violence

People of minority race/ethnicity are underrepresented in the state's oral health professions and among the existing dental education programs. Limited diversity among the oral health workforce is a significant barrier to underserved Rhode Islanders, especially racial and ethnic minority 111 populations. Males make up only a slightly higher percentage of diabetics than females. Regarding race/ethnicity, black, non-Hispanic adults make up the greatest number of diabetics, totaling 15.7% of the population, followed closely by Hispanic adults (11.3%). Diabetes prevalence is increasing mostly among black non-Hispanic adults. Rhode Island adults whose primary language is Spanish are diagnosed with 20 diabetes twice as often as those whose first language is English. Diabetes prevalence is increasing more quickly among African American, non-Hispanic adults and adults of multiple races than among Hispanic and 116 white non-Hispanic adults. As of 2009, Native Americans in Rhode Island had the highest number of individuals with disabilities and self-care limitations. Similarly, there are slightly more Hispanic/Latinos that are disabled (24.7%) than nonHispanic/Latinos (19.8%). The white population was noted to have the highest daily activity limitations from disabilities. From 1982-2008, 29 children (ages 0-12) were diagnosed with AIDS in Rhode Island; the majority were male (69%) and AfricanAmerican (52%). The main reason was transmission from a mother 22 infected with HIV (86%) [22] African American and Hispanic males ages 15-24 are disporportionately affected by violence. There is a strong correlation between violence and 84 poverty, one of the social determinants of health

7

Disparities Inventory Continuum Hospice

Tobacco use disproportionately affects a few minority populations in Rhode Island: African Americans, pregnant women, people with Race, Pregnancy, Health Status

Smoking

Race/ Ehnicity, Age

Poverty

disabilities, people with chronic disease, and 71 people with low socioeconomic status. 94 Minority children are more likely to grow up poorer than while children During 2008-2012, Native Americans (11.9%), Black/African Americans (11.2%), and Asians (9.5%) had the highest rates of low birthweight, compared to Whites (7.1%) and those of

Race/ Ethnicity

Infant Health

16 Hispanic ethnicity (7.8%). Black/African Americans (74.7%) had the lowest rate of first trimeser prenatal care, followed by Native Americans (76.6%), those of Hispanic

Race/ Ethnicity

Infant Health

17 ethnicity (77.6%) and Asians (77.9%).

Race/ Ethnicity

Infant Health

Infants born with low birth weight by mother's race are: Native American 17 13.1%, black 11%, Asian 9.3%, Hispanics 7.7%, and whites 7.1%. Whites and the general state population have better maternal and child

Race/ Ethnicity

Infant Health

17 health outcomes than the racial and ethnic minority populations. Native Americans have the highest birth rates and the highest number of

Race/ Ethnicity

Infant Health

17 infants with low birthweight.

Race/ Ethnicity

Infant Health

17 African Americans have the highest rate of infant mortality. During 2009- 2011, Native Americans had the highest rate of teen

Race/ Ethnicity

Teen Pregnancy

19 for Whites (46.3).

pregnancy (172.1 per 1,000), a rate that was nearly four times the rate Black Americans Americans (116.4) and those of Hispanic/Latino ethnicity (111.0) had high teen pregnancy rates that were approximately 2.5 times the rate of Whites. The teen pregnancy rate among Asians (58.6) was close Race/ Ethnicity

Teen Pregnancy

to the statewide rate (53.1) for this time period, but was still 27% higher 19 than the rate for Whites.

Disparities Inventory 8

Continuum Hospice

Rhode Island's dentist shortage will likely become more critical in the coming years. That will affect the state's most vulnerable populaitons: families with low-income, underserved perinatal women and adults, elderly in nursing facilities, and those of minority race/ ethnicity - who have difficult obtaining dental care due to geographic, cultural or Vulnerable Populatio Dental Health

110 finanncial barriers. The leading causes of death in the Asian/Pacific Islander populations are: 157 cancer, heart disease, stroke and unintentional injuries.

Disparities Inventory 9

Continuum Hospice

Tab 7

CONTINUUM CARF HOSPICF

Charity Care Policy Policy No. C:3-031.1

PURPOSE To provide care to patients who are unable to afford Hospice care.

POLICY As determined by Provider on a case by case basis, Provider will provide free care to qualifying patients for Hospice services. Services and/or supplies (i.e. SNF Room and Board) rendered under contract by an outside provider are not eligible for free care and will be billed to the patient.

ELIGIBILITY a) Patients must meet Medicare Hospice eligibility requirements. b) Patients must be uninsured, or underinsured and possess no alternate payor source. c) Patient must have limited financial assets. d) Patient income must be less than the Federal Poverty Limit

CONTINUUM CARF HOSPICF

e) Patient must apply for governmental assistance programs for which they may qualify. If a patient is ineligible for or has been denied governmental assistance patient may be eligible for charity care.

CONTINUUM CARF HOSPICF

CONTINUUM CARE HOSPICE CHARITY CARE APPLICATION

Patient Name: ______________________________________ DOB: ______________________________________________ HIC #:______________________________________________ Patient Contact Number:______________________________ DPOA:_____________________________________________ DPOA Contact Number:_______________________________ Please attach an explanation (two paragraphs or less) of why you are applying for free care, include a short summary of your financial situation as well as any government assistance programs that you have applied for or may be eligible for. Describe any insurance you may have - including governmental programs such as Medicare or Medicaid. Describe your family and living situation. Continuum may require Tax Returns, pay stubs, W-2s or other documentation to determine eligibility.

Current Monthly Income:____________________________________________ Previous Year Income: ______________________________________________ Total Assets:______________________________________________________ Total Liabilities:____________________________________________________ Current Address:_________________________________________________ _________________________________________________________________

Signature: _____________________________________Date:___________________________

Tab 8

Continuum Care Hospice LLC

Balance Sheet As of December 31, 2016

Dec 31, 16 ASSETS Current Assets Checking/Savings

375,476.30

Accounts Receivable

1,150,498.74

Other Current Assets

3,660.00

Total Current Assets

1,529,635.04

Fixed Assets

885.97

Other Assets

7,236.00

TOTAL ASSETS

1,537,757.01

LIABILITIES & EQUITY Liabilities Current Liabilities Accounts Payable Credit Cards Total Current Liabilities Total Liabilities

266,147.35 27,800.71 293,948.06 293,948.06

Equity Member Equity - Affinity of Oak

634,823.13

Member Equity - Prime Palliativ

384,383.00

32000 · Retained Earnings Net Income Total Equity TOTAL LIABILITIES & EQUITY

-690,498.71 915,101.53 1,243,808.95 1,537,757.01

Page 1 of 1

Continuum Care Hospice LLC

Profit & Loss January through December 2016

Jan - Dec 16 Ordinary Income/Expense Income 40000 · Medicare Income

5,474,106.06

41000 · Medi-Cal Income

583,962.58

42000 · Managed MediCal Income

342,570.73

43000 · Private Insurance Income

367,022.68

43900 · Self Pay Income 44000 · Charity Claims 45000 · Interest Income

1,130.22 722.88 1,097.54

49000 · Contractual Adjustments

(212,875.32)

49999 · Room & Board Passthrough 100%

(463,734.90)

Total Income Expense 50000 · Clinical Salaries and Benefits 50100 · Clinical Mileage 50101 · Clinical Tolls 51000 · Medical Supplies

6,094,002.47 977,456.05 51,171.63 2,064.00 79,072.78

52000 · Durable Medical Equipment

195,649.25

53000 · Pharmacy

241,730.39

55000 · Other Direct Costs

13,898.48

59999 · Room & Board Expense (5%)

23,186.74

60000 · Advertising and Promotion

15,761.46

60200 · Automobile Expense

99,338.05

60300 · Background Screening

18,401.30

60400 · Bank Service Charges

3,647.69

61700 · Computer and Internet Expenses

9,900.66

62500 · Dues and Subscriptions

3,289.79

63300 · Insurance Expense 63600 · Laboratory Fees 64000 · Legal & Professional Fees 64300 · Meals and Entertainment 64400 · Medical Records 64500 · Office Expense 64900 · Office Supplies 66000 · Payroll Expenses 67100 · Rent Expense 67200 · Repairs and Maintenance 67500 · Software 68000 · Taxes

113,373.87 601.13 343,823.19 10,242.89 4,861.52 10,970.54 39,638.56 2,640,452.93 50,658.00 360.83 118,442.24 6,285.01

68100 · Telephone Expense

47,682.52

68400 · Travel Expense

51,111.90

68500 · Uniforms

4,346.30

69999 · Miscellaneous

1,481.24

Total Expense Net Ordinary Income Net Income

5,178,900.94 915,101.53 915,101.53

Page 1 of 1

Tab 9

QUALITY ASSESSMENT AND AND QUALITY ASSESSMENT PERFORMANCE IMPROVEMEMNT PERFORMANCE IMPROVEMEMNT

Agency Quality Assessment and Performance Improvement Structure The agency’s Quality Assessment and Performance Improvement (QAPI) Committee identifies and addresses quality issues and implements corrective action plan as necessary.

Mission Continuum Care Hospice’s mission is to provide the terminally ill patient and their loved ones with the support and care they require to live their lives comfortably. Our Hospice team strives to enable the patient and family to maintain dignity and quality of life. Our goal is to provide physical, emotional, and spiritual comfort. We strive to empower the patient and family by providing them with the tools, information and support they need to make informed decisions. We provide ongoing support for family and friends for as long as it is needed. We believe that Hospice care should be available to any and all persons with an illness for which there is no cure or for persons who elect not to attempt a cure, resulting in a limited life expectancy. To carry out this mission, the agency provides:

• Relief of pain and other symptoms of illness on a 24 hour-a-day basis

• An end of life program focused on the dying patient and families overall well-being, caring for the mind, body and spirit.

• Education to families, caregivers, and the community at large in the areas of death and dying, grief, hospice and palliative care.

Membership The Executive Director is the chairperson for the committee and responsible for creating the QAPI culture, environment for change and facilitating quality assessment and performance improvement process. The executive director is responsible for selecting and appointing the committee members.

Required Members • • • •

Executive Director serves as chairperson Director Professional of Clinical Services Medical Director 3-5 members of the agency staff

Ad Hoc Teams Ad hoc teams may be appointed by the QAPI Committee to participate in quality project. Team members are selected depending on the Performance Improvement Project (PIP) problem or issue identified.

Purpose of the Quality Assessment and Performance Improvement Committee The QAPI Committee has the overall responsibility and authority to conduct a confidential review of information for the identification of concerns and trends for negative findings. The completion of tasks may be accomplished through designated individuals or quality project teams. Specific responsibilities include: • • • •

Identify trends in clinical outcomes Evaluation of data related to systems and services offered to patients Monitor new systems and services Monitor customer and patient satisfaction

A functional Quality Assessment and Performance Improvement (QAPI) Committee is responsible for evaluating and prioritizing QAPI activities based on results of aggregated, analyzed data. This will ensure that the organization is providing appropriate, high-value, effective and efficient services in accordance with its mission and current standards of practice. Through QAPI activities, the organization provides a mechanism for identification and prioritization of opportunities for problem identification and improvement in care and operations.

Requirements of the Committee • • • • • • • • •

The QAPI Committee meets monthly The chairperson selects a co-chair to act in the chairperson’s absence and assists with the committee’s work. Committee members are required to attend regularly scheduled meetings The committee focuses on significant areas of improvement each month The committee tracks progress of agencies performance improvement plans Confidentiality is maintained Only trended information, no patient specific information, is communicated outside the QAPI Committee Committee tracks and analyzes adverse patient events Agency staff are kept informed of PIPs and involved in QAPI process

Committee Agenda/Minutes Attendance records are confirmed by signature section on monthly agenda/minutes. AIM statements and action plans are developed, reviewed and revised at each meeting. Follow-up to the prior month’s plan is documented as well as a creation of a new plan for the current month.

The process for determining the agenda items for the monthly QAPI Committee meetings includes:

Review of Reports • • • • • • • • •

Discipline specific reports and quarterly peer audits Customer Concern Reports Safety Committee Infection Control PIP status and report Survey Reports Satisfaction Survey Results Outcome data HIS data

Performance Improvement Performance improvement is an ongoing interdisciplinary process that is designed to improve the delivery of services and patient outcomes. The objective of performance improvement is continuous improvement through an ongoing evaluation of administrative, clinical, managerial and support process that most affect patient care. The agency sets priorities to gain strategic view of its operating environment and to ensure the consistent quality of care provided over time. In addition to high volume, high risk areas, the agency tracks and analyzes adverse patient events, or pain and symptom control. The agency demonstrates how staff contributes to its quality improvement efforts.

Routine Measurement of Indicators

Indicator/Outcome

Patient & Family Centered Care Family willingness to refer Overall Quality of Care Reponse after hours/weekend

Sources of Data

Frequency of Measurem ent

Sample Size

Accountability

DEYTA DEYTA DEYTA

quarterly quarterly quarterly

100% 100% 100%

ExecutiveDirector ExecutiveDirector ExecutiveDirector

Bereavement POC meets family needs Ethical Behavior and Consumer Rights Employees oriented to Ethics policy Patient Eligibility Clinical Excellence & Safety Pain assessment/management Appropriate use of GIP Respite available for caregiver need Continuous Care utilization Evaluation of contracted Services Evaluation of adverse events Organizational Excellence Governing Body achieves functions of hospice care Workforce Excellence Staff competency evaluated Required inservices All employees complete onhire orientation Compliance with Laws & Regulations Survey Readiness : mock survey CMS mandatory quality reporting: NQF measure CMS mandatory quality reporting: Structural measure

Bereavment Records

quarterly

10%

Executive Director

Employee Files

On-hire

100%

Office Manager

Admission and Recert documentation

Quarterly

10%

Clinical Supervisor

Chart Audit Chart Audit

Quarterly Twice yearly Twice Yearly Twice Yearly Annually

10% 100%

Clinical Supervisor Clinical Supervisor

100%

Clinical Supervisor

100%

Clinical Supervisor

100%

Executive Director

Each Event

100%

Executive Director

Governing Body Minutes

Annually

100%

Executive Director

Personnel Files Personnel Files Personnel Files

Annually Annually Annually

100% 100% 100%

Office Manager Office Manager Office Manager

Chart Audits/ administrative records Chart Audits

Annually

10%

Monthly

10%

Executive Director/Clinical Director Clinical Director

QAPI plan approved by governing body

Annually

Chart Audit Chart Audit Contract Reviews Incident Log

Stewardship & Accountability Met budget and financial goals Financials set by Governing Body Performance Measurement

Annually

Executive Director

100%

Executive Director

Staff Inservices provided on QAPI QAPI planned carried out by Governing Body

Inservice log

Annually

100%

Executive Director

QAPI minutes

Annually

100%

Executive Director

PLANNING FOR CHANGE: QAPI AND OUTCOME MEASURES Quality improvement is not confined to patient care needs and extends beyond patient assessments to examine all components of the operation and how this affects the consistent quality of care over time. An example of an agency specific quality indicator may be to assess the recruitment and retention of staff with minimal turn-over rates. By establishing this priority the agency could gain knowledge of its clinical operating environment and how it relates to patient outcomes. Implementing a PIP based on data collected will enable the agency to assess processes within the operation and the impact on patient care from a broader context.

EVALUATION OF THE QAPI PLAN The QAPI committee reviews and revises Performance Improvement Plans (PIP’s) each month to monitor on-going progress. Different patient care measures may require different data collection timeframes. The nature of the data element will determine the timeframe for collecting and updating the QAPI PIP plan. At a minimum the QAPI committee updates the ongoing improvement projects quarterly. An impromptu meeting can be called at any time by a member of the team if a problem arises.

GETTING STARTED The key to a successful PIP is to tackle problems in a systematic way. Although it sounds easy, teams may struggle with how to get started and stay on track. Once data is collected a common mistake is jumping to conclusions in generating theories about the cause of problems. Another issue may be creating too broad of a problem statement that is vague or difficult to follow. One of the best ways to implement a PIP is to use a tool as the model or guide to follow. One of the most commonly used tools is the Plan-Do-Study-Act (P-D-S-A) model*.

FRAMEWORK FOR CHANGE The PDSA cycle provides a framework to facilitate the implementation of change. The change begins with a plan and ends with action based on the knowledge gained through the process steps of the cycle.

PDSA Improvement Cycle Act results justify adopting a new method

• If

thicument the new 111.1011.1: 1311111eMeni UCH' standa

rd

Plan . Objective for this experiment (this turning of the l'I)SA cycle) • Plait the experiment • Set titril.illottall definitions • Predict:4m • 1111:11 would

Study • Review the results. what did we learn?

%As

lli%

results mean.'

Do • Rim the exper intent • Collect texuli%

• Compare to predictions • Is another turn of the PISA cycle warranted') • If this wipience of PDSA cycles should be stopped stop.

from Management NI.:this: Building Enterprise Capatitlit% by John Hunter

AIM STATEMENT What is trying to be accomplished? Improvement requires setting aims or goals. The aim statement is a clear and full intention of what is to be accomplished. The aim statement is timespecific and measurable defining the specific population of patients that are affected. Mutual agreement on goals and allocating the people and resources is necessary to accomplish the aim. Establishing SMART aim statements includes being: S Specific • State the expected outcome clearly M Measurable • Develop numerical measurement and targets A Achievable • Set stretch goals

R Reachable • Adjust action steps as needed T Time bound • Stay focused on objectives • Redefine the aim statement if indicated

EXAMPLE - HOSPICE Performance Improvement Project (PIP) • Family Evaluation of Hospice Care results show family confidence in what to do about changes in their family member’s condition between visits is currently at 65% for the last two quarters • Governing Body is focusing quality projects on improving the family experience with hospice care • Staff feels if families were provided consistent guidance and reinforcement in dealing with changes in condition; result would be increased confidence level managing the patients care AIM STATEMENT • By April 2015, 85% of individuals will respond that they were very confident about what to do with changes in their family member’s condition between visits when asked on a call made the month after the family member’s death

DETERMINATION OF A SENTINEL EVENT Many investigations may conclude with an incident report. Events categorized as sentinel events require additional investigation and possible reporting to state agencies and CHAP. A sentinel event is an incident that results in, or is likely to result in, serious physical or mental harm to a patient, potential litigation or misappropriation of property. The focus on determination of a sentinel event is on the harm or potential harm to the patient. Some examples of a sentinel event appear below. The list is not intended to be all-inclusive: • • • • • • •

head trauma suffocation burns suicide attempts drowning poisoning sexual assault hypothermia choking anaphylaxis

• • • • • • • • • • •

fall resulting in injury severe weight loss injuries of unknown origin animal or unusual insect bites or stings patient to caregiver altercations suspected or patient complaints of abuse or neglect heat stroke or exhaustion medication error resulting in harm unexplained, unexpected death stage IV pressure ulcer fire injuries or smoke inhalation elopements without immediate patient return, resulting in injury to the patient or property damage improper feeding or positioning of an individual with known aspiration risks resulting in aspiration

ROOT CAUSE ANALYSIS If an identified sentinel event has occurred, the Quality Assessment and Performance Improvement Committee complete a root cause analysis. Completion of the analysis assists the agency in resolution of the issue. The analysis includes the answers to the following questions: • • • • •

What steps need to be taken to protect the individual patient? What steps need to be taken to protect other similar patients? What systems or processes need to be put in place and what is the time frame for implementation? What educational presentations need to be developed and presented? A root cause analysis follows a step by step process to ensure the plan developed focuses on the real cause of the issue.

The process includes: • • • • • •

Possible contributing factors Human factors Equipment Controllable environmental factors Uncontrollable external factors Other

Analysis of findings • • •

Common cause Proximate cause Related processes and symptoms identified for improvement

Plan • • • • •

Improvement plan directed at processes Orientation/training Systems designed to identify risk Barriers to communication Planned actions identified

ROOT CAUSE ANALYSIS (CONT.) Monitor • • • • •

Actions implemented Responsibility for implementation assigned Performance Improvement Projects (PIP) initiated Evaluate Facilitated through QAPI committee Effectiveness of plan/actions evaluated through PIP status report

The plan, actions taken and on-going monitoring are forwarded to the QAPI Committee for trending and resolution.

Tab 10

THE DISCOVERY GROUP, INC. UNLOCKING OPPORTUNITIES ONE INVESTMENT AT A TIME

February 1, 2017 Sam Stern Continuum Hospice www.com inuumhospice.com

BAY TOWER MEDICAL CENTER 101 Plain Street, Providence, RI

RE:

It was a pleasure speaking with you on the phone and learning of your interest in our property. This Letter of Intent is in response to your request for a proposal regarding leasing space at 101 Plain Street. BAY TOWER MEDICAL CENTER offers many amenities which include the following: ❖ Ideally located on the hospital campus adjacent to Rhode Island and W&I Hospitals ❖ Located within close proximity to the new access points to and from 1-95, 1-195 and the Knowledge District ❖ Free on-site secured parking ❖ Completely remodeled building with new infrastructure which includes new energy efficient window system, high efficient HVAC systems, new electrical, plumbing, fire alarm and elevator systems. ❖ Building renovations were completed in accordance with LEED standards. ❖ 2 onsite generators ❖ 24 hour on-site security and concierge service Below are the general terms and conditions we would be willing to enter into a Lease Agreement with Continuum Care of Rhode Island, LLC: Landlord:

101 Plain LLC

Tenant:

Continuum Care of Rhode Island, LLC

Building Size:

Approximately 84,321 Gross Building Area

Use:

Office - Medical Billing Office

101 PLAIN STREET, 1ST FLOOR, SUITE 100 PROVIDENCE, RHODE ISLAND 02860 (401) 729-8000 P - (401) 729-4300 F

THE DISCOVERY GROUP, INC. UNLOCKING OPPORTUNITIES ONE INVESTMENT AT A TIME

Sam Stern Continuum Hospice Page 2

Premises:

Approx. 1,100 Rentable Square Feet on the Lower Level Approx. 1,006 Useable Square Feet on the Lower Level

Base Term:

Five (5) years.

Base Term Rent:

Years 1-5:

$2,150.00/Month - $50/Mo. Increases/Yr.

Operating Costs & RE Tax: Landlord shall pay the following base costs: Operating Costs: Real Estate Taxes:

$4.35/RSF — Landlord responsibility $3.98/RSF — Landlord responsibility

Tenant will pay it's pro rata share of any increase in Taxes and Operating Expenses over base cost stated above. Tenant will pay for their janitorial services for their premises

Corporate Guarantee:

Subject to review of financials

Security Deposit:

Equal to One Month's rent.

Utilities:

Tenant will be responsible for all gas and electric charges for their Premises. Gas and electric will be separately metered if any.

Bathrooms:

Shared bathroom in common area.

101 PLAIN STREET, 1s` FLOOR, SUITE 100 PROVIDENCE, RHODE ISLAND 02860 (401) 729-8000 P - (401) 729-4300 F

THE DISCOVERY GROUP, INC. UNLOCKING OPPORTUNITIES ONE INVESTMENT AT A TIME

Sam Stern Continuum Hospice Page 3

Lease Commencement:

On the date of Lease Execution

Rent Commencement:

The sooner of (i) 30 Days from Landlord delivery of space or (ii) the day tenant opens for business. Landlord will deliver the space approx. within 30 -60 days from lease execution.

Condition of Premises:

Landlord will deliver the premises to Tenant with the following improvements: 1.) 2.) 3.) 4.) 5.) 6.)

Standard ceiling tiles Standard lighting Carpet Sheetrock/painting on perimeter and single office walls, New HVAC with distribution Electrical and fire safety system per code.

101 PLAIN STREET, 1ST FLOOR, SUITE 100 PROVIDENCE, RHODE ISLAND 02860 (401) 729-8000 P - (401) 729-4300 F

THE DISCOVERY GROUP, INC. UNLOCKING OPPORTUNITIES ONE INVESTMENT AT A TIME

Sam Stern Continuum Hospice Page 4

Parking:

Tenant will be allowed parking for up to 3 cars in an area designated by Landlord, most or all will be tandem. Visitors will have access to the visitor parking area (approximately 45 spaces) in common with the rest of the building.

Signage:

Tenant will be allowed to install Tenant's signage on the main Lobby directory and the directory on Tenant's floors.

Contingency:

Contingent on Tenant receiving Certificate of need from the state. This contingency expires June 1, 2017.

This Proposal is subject to our mutual execution of a lease, which will include, but not be limited to the above provisions. These terms shall not be construed as binding until Landlord and Tenant have executed a mutually satisfactory lease. Location is subject to other proposals released on said premises I look forward to hearing back from you. Sincerely, THE DISCOVERY GROUP, INC.

Owner/Authorized Signature

Dan Feiner" Date

101 PLAIN STREET, 1' FLOOR, SUITE 100 PROVIDENCE, RHODE ISLAND 02860 (401) 729-8000 P (401) 729-4300 F

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Tab ii

Appendix G – 5

Continuum Care of Rhode Island, LLC

Continuum Care Hospice, LLC

Sole Member – Samuel Stern

Sole Member – Samuel Stern

Tab 12

RI SOS

Filing Number: 201629060130

Date: 12/22/2016 12:23 PM

State of Rhode Island and Providence Plantations Office of the Secretary of State

Fee: $150.00

Division Of Business Services 148 W. River Street Providence R102904-2615 (401) 222-3040

110Pe Limited Liability Company Articles of Organization

(Chapter 7-16-6 of the General Laws of Rhode Island, 1956, as amended) ARTICLE I The name of the limited liability company is: Continuum Care of Rhode Island LLC ARTICLE II The street address (post office boxes are not acceptable) of the limited liability company's registered agent in Rhode Island is: No. and Street:

10 DORRANCE

City or Town:

SUITE 700 PROVIDENCE

ST. State: RI

Zip:

02903

SAMUEL STERN

The name of the resident agent at such address is: ARTICLE III

Under the terms of these Articles of Organization and any written operating agreement made or intended to be made. the limited liability company is intended to be treated for purposes of federal income taxation as. Check one box only a partnership

a corporation

X disregarded as an entity separate from its member ARTICLE IV

The address of its principal office of the limited liability company if it is determined at the time of organization: No. and Street:

10 DORRANCE ST

City or Town:

SUITE 700 PROVIDENCE

State: RI

Zip:

02903

Country: USA

ARTICLE V The limited liability company has the purpose of engaging in any lawful business, unless a more limited purpose is set forth in Article VI of these Articles of Organization. The period of its duration is:

X Perpetual ARTICLE VI

Additional provisions, if any, not inconsistent with law, which members elect to have set forth in these Articles of Organization, including, but not limited to, any limitation of the purposes or any other provision which may be included in an operating agreement:

ARTICLE VII The limited liabilty company is to be managed by its

X Members

or

Managers

(check one)

(If managed by Members, go to ARTICLE VIII)

The name and address of each manager (If LLC is managed by Members, DO NOT complete this section): Title

Individual Name

Address

First, Middle, Last, Suffix

Address, City or Town, State, Zip Code, Country

ARTICLE VIII The date these Articles of Organization are to become effective, not prior to, nor more than 30 days after the filing of these Articles of Organization. Later Effective Date:

This electronic signature of the individual or individuals signing this instrument constitutes the affirmation or acknowledgement of the signatory, under penalties of perjury, that this instrument is that individual's act and deed or the act and deed of the company, and that the facts stated herein are true, as of the date of the electronic filing, in compliance with R.I. Gen. Laws § 7-16. Signed this 22 Day of December, 2016 at 12:26:19 PM by the Authorized Person. SAMUEL STERN Address of Authorized Signer: 10 DORRANCE ST SUITE 700 PROVIDENCE, RI 02903

Form No. 400 Revised 09/07

0 2007 - 2016 State of Rhode Island and Providence Plantations All Rights Reserved

RI SOS

0

Filing Number: 201629060130

Date: 12/22/2016 12:23 PM

State of Rhode Island and Providence Plantations

Department of State I Office of the Secretary of State Nellie M. Gorbea, Secretary of State

I, NELLIE M. GORBEA, Secretary of State of the State of Rhode Island and Providence Plantations, hereby certify that this document, duly executed in accordance with the provisions of Title 7 of the General Laws of Rhode Island, as amended, has been filed in this office on this day: December 22, 2016 12:23 PM

Nellie M. Gorbea Secretary of State

0-2064-0

mr2DEPARTMENT OF THE TREASURY 7INTERNee ReevENOE SERVICE 45999-0022 CINCINNATI OH Date of this notice:

12-22-2016

Employer Identification Number: Form: SS-4 Number of this notice: CONTINUUM CARE OP RHODE ISLAND LLC SAMUEL STERN SOLE MBR 10 DORRANCE ST STE 700 PROVIDENCE, RI 02903

CP 575 G

For assistance you may call us at: 1-800-829-4923 IF YOU WRITE, ATTACH THE STUB AT THE END OF THIS NOTICE.

WE ASSIGNED YOU AN EMPDOYER IDENTIFICATION NUMBER Thank you fur applying for an Employer Identification Number (PIN). We assigned you EIN 81-4764927. This EIN will identify you, your business accounts, tax returns, and documents, even if you have no employees. Please keep this notice in your permanent records. When filing tax documents, payments, and related correspondence, it is very important that you use your EIN and complete name and address exactly as shown above. Any variation may cause a delay in processing, result in incorrect information in your account, or even cause you to be assigned more than one SIN. If the information is not correct as shown above, please make the correction using the attached tear off stub and return it to us. A limited liability company (LLC) may file Form 8822, Entity Classification Election, and elect to be classified as an association taxable as a corporation. If the LLC is eligible to be treated as a corporation that meets certain tests and it will be electing .5 corporation status, it must timely file Form 2553, Election by a Small Business Corporation. The LLC will be treated as a corporation as of the effective date Of the S corporation election and does not need to file Form 8832. To obtatn tax forms and publications, including those referenced in this notice, visit our Web site at www.irs.gov. If you do not have access to the Internet, call 1-800-829-3676 (TTY/TDD 1-800-829-4059) or visit your local IRS office. IMPORTANT REM/Nets:RS: • Keep a copy of this notice in your permanent records. This notice is issued only one time and the /RS will not be able to generate a duplicate copy for you. You may give a copy of this document to anyone asking for proof of your EIN. * Use this EIN and your name exactly as they appear at the tap of this notice on all your federal tax forms. • Refer to this EIN on your tax-related correspondence and documents. If you have questions about your EIN, you can call us at the phone number or write to us at the address shown at the top of this notice. If you write, please tear off the stub at the bottom of this notice and send it along with your letter. If you do not need to write us, do not complete and return the stub. Your name control associated with this EIN is CONT. You will need to provide this information, along with your EIN, if you file your returns electronically. Thank you for your cooperation.

{IRS USE ONLY}

12-22-2016 CONT 0 9999999999 SS-4

575G

Keep this part for your records.

CP 575 G (Rev. 7-2007)

Return this part with any correspondence SO we may identify your account. Please correct any errors in your name or address.

CP 575 G 9999999999

Your Telephone Number Best Time to Call DATE OF THIS NOTICE: 12-22-2016 EMPLOYER IDENTIFICATION NUMBER: 4 FORM: SS-4 NOBOD

INTERNAL REVENUE SERVICE CINCINNATI OH 45999-0023 ,,,,,

CONTINUUM CARE OF RHODE ISLAND LLC SAMUEL STERN SOLE MBR 10 DORRANCE Sr STE 700 PROVIDENCE, RI 02903

OPERATING AGREEMENT

Continuum Care of Rhode Island, LLC A Single Member Limited Liability Company ARTICLE Company Formation 1.1 FORMATION. The Member (as defined in Section 1.8) hereby does form a Limited Liability Company ("Company") subject to the provisions of the Limited Liability Company Act as currently in effect in the state of Rhode Island as of this date. Articles of Organization shall be flied with the Secretary of State. 1.2 NAME. The name of the Company shall be: CONTINUUM CARE OF RHODE ISLAND, LLC. 1.3 REGISTERED AGENT. The name and location of the registered agent of the Company shall be: Samuel Stern 10 Dorrance St. Suite 700 Providence, RI 02903

1.4 TERM. The Company shall continue for a perpetual period unless, (a) The Member votes for dissolution; or (b) Any event which makes it unlawful for the business of the Company to be carried on by the Member, or (c)Any other event causing dissolution of this Limited Liability Company under the laws of the State of California. 1.6 BUSINESS PURPOSE. The purpose of the Company is to conduct any and all lawful business pursuits. 1.7 PRINCIPAL PLACE OF BUSINESS. The location of the principal place of business of the Company shall be: 10 Dorrance St. Suite 700 Providence, RI 02903 The principal place of business may be changed to a location the Member may select. The Member may also choose to store company documents at any address the Member chooses.

1.8 MEMBER. The sole member of Continuum Care of Rhode Island, LLC is Samuel Stern (the "Member). The name and place of residence of the Member are contained in Exhibit 1 attached to this Agreement, 1.9 ADMISSION OF ADDITIONAL MEMBERS. Except as otherwise expressly provided in the Agreement, additional members may be admitted to the Company at the exclusive discretion of the Member through issuance by the company of a new interest in the Company or a sale of current a percent of current Member's interest. ARTICLE II Capital Contributions 2.1 INITIAL CONTRIBUTIONS. The Member initially shall contribute to the Company capital as described in Exhibit 2 attached to this Agreement. The total value of such property and cash Is $50,000. 2.2 ADDITIONAL CONTRIBUTIONS. Except as provided in ARTICLE 6.2, no member shall be obligated to make any additional contribution to the Company's capital. ARTICLE III Profits, Losses and Distributions 3,1 PROFITSILOSSES. For financial accounting and tax purposes, if there are members other than the Member, the Company's net profits or net losses shall be determined on an annual basis and shall be allocated to the members in proportion to each members relative capital interest in the Company as set forth in Exhibit 2 as amended from time to time in accordance with Treasury Regulation 1.704-1. If there are no members other than the Member, the Company shall be treated as an entity that is disregarded as separate from the Member for federal income tax purposes, 3.2 DISTRIBUTIONS. The Member shall determine and distribute available funds annually or at more frequent intervals as the Member sees fit. Available funds, as referred to herein, shall mean the net cash of the Company available after appropriate provision for expenses and liabilities, as determined by the Member. 3.2 TAX ELECTIONS. The Member may make any and all tax elections for the Company in his sole and exclusive discretion. ARTICLE IV Management 4,1 MANAGEMENT OF THE BUSINESS. The management of the business is invested in the Member who may delegate responsibilities to the Board (as defined below) in her sole and exclusive discretion. 4.2 THE BOARD. The board shall initially consist of the Member, Ariel Joudai, CPA and Alias Scheinfeld, Esq. (the "Board"). The composition of the Board may vary from time to time at the sole and exclusive discretion of the Member. 4.2 MEMBER. The liability of the Member shall be limited as provided pursuant to applicable law. The Member is in control, management, direction, and operation of the Company's affairs and shall have powers to bind the Company with any legally binding agreement, including setting up and operating an

LLC company bank account, provided however, that the Member's powers shall rot affect the Member's limited liability under applicable limited liability company law. 4.3 POWERS OF THE MEMBER. The Member is authorized on the Company's behalf to make all decisions in accordance with ARTICLE 4.2 as to (a) the sale, development !case or other disposition of the Company's assets; (b) the purchase or other acquisition of other assets of all kinds; (c) the management of all or any part of the Company's assets; (d) the borrowing of money and the granting of security interests in the Company's assets; (e) the pre-payment, refinancing or extension of any loan affecting the Company's assets; (f) the compromise or release of any of the Company's claims or debts; and, (g) the employment of persons, firms or corporations for the operation and management of the company's business. In the exercise of its management powers, the Member is authorized to execute and deliver (a) all contracts, conveyances, assignments leases, sub-leases, franchise agreements, licensing agreements, management contracts and maintenance contracts covering or affecting the Company's assets; (b) all checks, drafts and other orders for the payment of the Company's funds; (c) all promissory notes, loans, security agreements and other similar documents: and, (d) all other instruments of any other kind relating to the Company's affairs, whether like or unlike the foregoing. 4.7 NOMINEE. Title to the Company's assets shall be held in the Company's name or in the name of any nominee that the Member may designate. The Member shall have power to enter into a nominee agreement with any such person, and such agreement may contain provisions indemnifying the nominee, except for his willful misconduct. 4.8 EXCULPATION. Any act or omission of the Member, the effect of which may cause or result in loss or damage to the Company shall not subject the Member to any liability. 4.10 INDEMNIFICATION. The Company shall indemnify the Member in the event she was or is a party defendant or is threatened to be made a party defendant, pending or completed action, suit or proceeding, whether civil, criminal, administrative, or investigative (other than an action by or in the right of the Company) by reason of being the Member of the Company, Manager, employee or agent of the Company, or is or was serving at the request of the Company, for instant expenses (including attorney's fees), judgments, fines, and amounts paid in settlement actually and reasonably incurred in connection with such action, suit or proceeding. 4.11 RECORDS. The Member shall cause the Company to keep at its principal place of business or other location such records as are required to be maintained by applicable law. ARTICLE V Compensation 5.1 MEMBER MANAGEMENT FEE. The Member shall be entitled to compensation commensurate with the value of any services rendered to the Company. 5.2 REIMBURSEMENT. The Company shall reimburse the Member for all out-of-pocket expenses incurred by the Member in connection with the Company. ARTICLE VI Bookkeeping 6.1 BOOKS, The Member shall maintain such books of account as are required by law. Such books shall be kept on such method of accounting as the Member shall select. The Company's accounting period shall be the calendar year.

6,2 MEMBER'S ACCOUNTS. If there are additional members, the Member shall maintain separate capital and distribution accounts for each member_ Each member's capital account shall be determined and maintained in the manner set forth in Treasury Regulation 1.704-1(b)(2)(iv) and shall consist of his initial capital contribution increased by: (a)Any additional capital contribution made by him/her, (b) Credit balances transferred from his distribution account to his capital account, and decreased by: (a)Distributions to him/her in reduction of Company capital; (b) The member's share of Company losses if charged to his/her capital account, ARTICLE Vii Transfers 7.1 ASSIGNMENT, According to the appropriate Court, should the Member have a creditor with a judgment that was issued en assignment of the membership interest, the creditor shall only obtain an assignment of the membership interest, not the actual transfer of Membership in the LLC. The new assignee does not have any rights of the Member or have the ability to be involved in management of the LLC or the right to dissolve the LLC. The new assignee is only granted rights of the distributions of the Member's interests, if the Member decides to distribute at all, not the rights of membership. The assignee must release the Member's interests back to Member upon payment of the judgment in accordance with the appropriate Court ARTICLE VIII Dissolution 6.1 DISSOLUTION. The Member may dissolve the Company at any time. Upon dissolution the LLC must pay its debts first before distributing cash, assets, and/or initial capital to the Member or the Members interests. The dissolution may only be ordered by the Member, not by the owner of the Members interests. CERTIFICATE OF FORMATION This Company Operating Agreement is entered into and shall become effective as of the Effective Date by and among the Company and the person executing this Agreement as Member. It is the Members express intention to create a limited liability company in accordance with applicable law, as currently written or subsequently amended or redrafted. The undersigned hereby agree, acknowledge, and certify that the foregoing operating agreement is adopted and approved by each member, the agreement consisting of five pages, constitutes, together with Exhibit 1, and Exhibit 2, the Operating Agreement of Continuum Care of Rhode Island, LLC, adopted by the Member as of December 22, 2016

Member: Jr J

Printed Name

Cf(v r•-•

Signature Percent: 100% EXHIBIT I LISTING OF MEMBERS As of the tenth day of October, 2018 the following is a list of Members of the Company: Name: Samuel Stem Percent 100% EXHIBIT 2 CAPITAL CONTRIBUTIONS Pursuant to ARTICLE 2, the Member's initial contribution to the Company capital is stated to be $50,000. SIGNED AND AGREED this-22rd day of December, 2016.

Member