WORLD MORTALITY RATE HOLDS STEADY AT 100% 7 billion people will die

Palliative Care  is everybody’s business ‐global perspective  S Scott A Murray, St Columba’s Hospice Chair of Primary Palliative Care AM S C l b ’ H i Ch i f P i P lli i C Primary Palliative Care Research Group, University of Edinburgh, Scotland, UK www.chs.ed.ac.uk/gp/research/ppcrg.php Co‐Chair, International Primary Palliative Care Research Group

Dealing with dying will help: patients, relatives, clinicians, society

Palliative care is more than a specialty • • • •

It’s an approach to dealing with patients Attitude -caring Knowledge- basic information Skills-listening

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5 reasons why it is everybody’s business

WHO Definition of Palliative Care Palliative care is an approach that • improves the quality of life • through the prevention and relief of suffering ff i • by means of early identification and assessment and treatment • of pain and other problems, physical, psychosocial and spiritual. WHO 2002

1. All illnesses

3. All dimensions

2. All times from diagn

4. All cultures

5. All settings

Profile of People who die UK1900 / Age at death 46 • Top 3 causes 1. Infectious diseases 2. Accidents 3. Childbirth

UK 2020 Age at death 80 • Top 3 causes 1. Cancer 2. Organ failure 3. Frailty/ dementia

• Disability before death ¾ Not much

Disability before death ¾ Months - many years

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“Cancer” Trajectory, Diagnosis to Death

The three main trajectories of decline at the end of life

Cancer

High

Function

Specialist palliative care available

Low

Death

Onset of incurable cancer

Time

-- Often a few years, but decline often < 4 months

Generally predictable course, short decline Murray, S. A et al. BMJ 2008;336:958-959

Relatively well resourced hospice care fits well

Copyright ©2008 BMJ Publishing Group Ltd.

Organ System Failure Trajectory High

(heart, lung, liver … failure)

Function

Organ failure trajectory

Low Frequent admissions, selfcare becomes difficult

Death

Time

~ 2-5 years, but death usually seems “sudden”

Needs: acute care for exacerbations, chronic care, support at home*. No service designed to routinely meet the needs of this pattern of decline *No one seems to believe we have got this even half right. Delamothe T. BMJ 2009;338:b11457

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Dementia/Frailty Trajectory

Frailty trajectory

High

Function

Low

Death

Onset deficits in activities of daily living, speech, ambulation

Time

Variable up to 6-8 years

Needs: Integrated clinical care Long term support at home, carer support, possibly nursing care. Care homes with reliably good end-of-life care

Identifying community based chronic heart failure patients in the last year of life: a comparison of the Gold Standards Framework Prognostic Indicator Guide and the Seattle Heart Failure Model Kristin Haga, Scott Murray, Janet Reid, Martin Denvir. Heart 2012 98: 579-583 doi: 10.1136/heartjnl-2011-301021

BMJ Feb 2011

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PhD research project: Living and dying with advanced liver disease Researcher: Barbara Kimbell With support from: Prof SA Murray, Dr M Kendall, Dr K Boyd, Prof J Iredale, P f P Hayes, Prof H Dr D A MacGilchrist M Gil h i t

Living and dying well with end-stage liver disease: time for palliative care?

Life after stroke‐ is palliative care relevant?   A better understanding of illness trajectories  after stroke may help clinicians identify patients  for a palliative approach to care.  Gillian Mead, Eileen Cowey, Scott A Murray

• wileyonlinelibrary.com. DOI 10.1002/hep.25621

When to shift gear?

Function High

Caring for people with organ failure: 3 stages

Stage 1 Physically well Stage 2 Active supportive and palliative care Stage 3 Terminal care Sentinel events t Death

Low Time

Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005; 330:1007-1011.

Boyd K and Murray SA . Recognising and managing key transitions in end of life care. BMJ 2010;341:c4863.

Copyright ©2005 BMJ Publishing Group Ltd.

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Function High

Caring for people with organ failure: 3 stages

Stage 1 Physically well Stage 2 Active supportive and palliative care Stage 3 Terminal care

Care Plan

Last days Care Pathwayy

Sentinel events t

Death

Low

Gold standards Framework Time

When is a patient palliative? • Would you be surprised if Mrs A were to die within the next 12 months? Joanne Lynn USA

• Study in cardiology ward revealed that this question identifies 60 -70% of admissions • Avoid “prognostic paralysis* ” *Murray SA, Boyd K, and Sheikh A. Palliative care in chronic illnesses: we need to move from prognostic paralysis to active total care. BMJ 2005. 330:611-12.

Link to spict

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3 Mutiple dimensions: multidisciplinary care physical social

psychological spiritual

Grant E, Murray SA, Sheikh A. Spiritual dimensions of dying in different cultures. BMJ 2010;341:4859.

Murray SA, Kendall M, Grant E, Boyd K, Barclay S, Sheikh A. Patterns of social psychological and spiritual decline towards the end of life in lung cancer J Pain Sympt Man 2007; 34: 393-402

Dying is a 4-D activity What’s happening with respect to other dimensions of need?

His old friends won’t even take a cup of tea with me now I’ve got cancer” Mrs LR.

Method • Thematically analysed the serial interviews as case studies longitudinally and then crosssectionally from a number of studies. • Identified the presence and characteristics of social, psychological and spiritual needs

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Spiritual needs “great nurses and departments they are so caring”

“living with uncertainty” “It was like a black hole”

“It’s much worse the second time round”

“You don’t know what is is going to happen to you, fear is the worst thing”

• Everyone has them if faced with a serious illness • Relates to meaning and purpose of life • People may or may not use religious vocabulary • Such needs may cause distress Murray SA, Kendall M, Worth A, Boyd K, Benton TF, Clausen H. Exploring the spiritual needs of people dying of lung cancer or heart failure: prospective qualitative interview study. Pall Med 2004;18:39-45

Fluctuations of physical, social, psychological and spiritual wellbeing in family carers of patients with lung cancer

Murray, S. A. et al. BMJ 2010;340:c2581 . Copyright ©2010 BMJ Publishing Group Ltd.

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4

All settings

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5 All nations: International inequalities in dying

Outline comparison Edinburgh, Scotland 4 main issue existential or spiritual distress

4 main issue physical suffering, especially pain

g effective 4 analgesia

4 analgesia unaffordable

4 anger in the face of illness 4 “just keep it to myself” Liz Grant Murray SA, Grant E, Grant A, Kendall M. Dying from cancer in developed and developing countries. BMJ 2003;326:368-72.

Chogoria, Kenya

4 acceptance rather than anger 4 community support accepted

4 spiritual needs evident but 4 patients comforted and unmet inspired by belief in God

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5 reasons why it is everybody’s business 1. All illnesses

3. All dimensions

2. All times from diagn

4. All cultures

5. All settings

Challenge 4. Potential of palliative care in primary care • Over 50% would prefer to die at home • But in UK 20% of people p p die at home • Gold standards framework in >90% UK practices • NECPAL, RAD, • Kerela, India

Keri Thomas

Geoff Mitchell

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N Engl J Med 2013; 368:1173-1175March 28, 2013DOI: 10.1056/NEJMp1215620

Palliative Care is everybody’s business

Prof Scott A Murray, Primary Palliative Care Research Group, University of Edinburgh, Scotland, UK www.chs.ed.ac.uk/gp/research/ppcrg.php

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