JOSPM 1 (2012) 11-22/ Jivan J Sharma

Reflections of post graduate physiotherapy students in palliative care: qualitative study Jivan J Sharma, MSc, Sheffield Hallam University Abstract: The purpose of this qualitative study was to explore the perceptions of Indian physiotherapists for palliative care. In this twenty – first century where newer technical expertise and recent advances in treatment are reaching its heights, the concept of palliative care has also undergone a sea change in the past few years. It is to be viewed that in India the curriculum of medicine, nursing and other paramedical services such as physiotherapy, occupational therapy, psychology etc. don’t include palliative care as a specialization in post graduation or as a subject in under graduate studies. In this study, the researcher explored physiotherapists understanding of palliative care via one to one face interviews. Participants displayed a reasonable grasp of the wider concept of palliative care, but the specialists’ role was ill-defined and it was clear from the way the participants narrated their experience that they view their role more than just a physiotherapist and also a strong sense of putting appropriate holistic approaches together to improve overall QOL was evident. 3 themes and 5 sub themes emerged from the interviews. Main themes were recognising role, emotional concerns and lack of resources. Taking the perceptions of physiotherapists it will be a research to raise the consciousness of all physiotherapists about their role, responsibilities and skills in this important area of patient care that may act as catalyst for future strategies to be devised. Key words: physiotherapist; palliative care; post graduate; terminal illness. __________________________________________________________________ illnesses such as pulmonary, cardiac, AIDS, neurology and elderly which conforms to the holistic approach of treatment, thereby bringing about an improvement of the overall quality of life (QOL) of not only patients but as well as their families by a multi disciplinary approach. The widely accepted definition of World Health Organisation (WHO) describes palliative care as ‘‘Palliative care is an approach that improves the quality of life of patients

Introduction The twenty – first century is being proclaimed as the era of medical excellence. Where newer technical expertise and recent advances in treatment is reaching its heights, the concept of palliative care have also undergone a sea change in the past few years.1 Concept of palliation has extend his boundaries from the more traditional cancer therapy to many other contemporary life limiting 12

JOSPM 1 (2012) 11-22/ Jivan J Sharma be conducted to consider their view points. This qualitative paper will take into account the individualistic approach of physiotherapists which may be further helpful for evidence based practice and development of a rational approach to provide optimal patient care. Research conducted in developed countries have suggested provision and opportunities for inclusion of palliative care in undergraduate(UG) curriculum for medical students and nurses coupled with post graduation education that is footing far ahead in terms of physiotherapists and developing countries perspectives. Although a physiotherapy student has no specific training in palliative care, he or she must face the realities.8 Emotional concerns, stress and helplessness have been increasingly recognised by health professionals10 in the care of dying but how do physiotherapists muddle through this? Taking the perceptions of physiotherapists it will be a research to raise the consciousness of all physiotherapists about their role, responsibilities and skills in this important area of patient care that may act as catalyst for future strategies to be devised.

and their families facing the problem associated with a life-limiting illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, 2 psychological and spiritual''. An empirical understanding of the various needs of patient with life limiting illness is essential for effective palliative care so that we (medical, paramedical, social workers) can try to fulfil all these while delivering our services to improve overall QOL. Other than symptomatic problems which can be effectively alleviated by providing quality care and the concept of dying with dignity3 further includes psychological, spiritual and social aspects of end of life care. To meet these essential needs of patient and care givers, effective inter4 professional team work and 5 communication skills are necessary. Extensive literature exists elaborating the view points of medical doctors, nurses, patients and even care takers but a little result comes out with physiotherapy or physiotherapist as search terms in palliative care studies. Even though physiotherapist as a part of team have a substantial role in improving the condition of the patients for the remaining span of their mortal lives (through exercises6, symptom controls7, improving daily activities8), this role has gone unrecognised9 and is evident from the fact that insufficient literature exists defining the role and the significance of physiotherapists as palliative care givers. Studies are yet to

Study design: The author selected descriptive phenomenological approach11 to understand the perspectives of Indian physiotherapists as his participants. This approach is found to be useful when scant information exists12 and the result produced is a description of

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JOSPM 1 (2012) 11-22/ Jivan J Sharma those with phenomenon13.

exposure

to

interviewed at the learning centre of SHU. The interviews lasted between 19 to 38 minutes. Initial 2 to 3 questions were asked to set the interview tone and to make the environment calm and relaxing. All broad and open ended questions were designed with an aim of discovery rather than checking (Appendix 4). More information was gathered by using probes and prompts. Based on the ongoing analysis the interview was modified and 2 questions were reframed. Finally at the end of the interview also, an open ended question was asked that if the participants want to add something that they feel the interviewer has left or missed which was important to them.

the

Participants: Study commenced after gaining appropriate ethical approval from Sheffield Hallam University (SHU) research ethics board. Initial invitations for the study were provided via electronic mails to all the Indian physiotherapists doing their post graduation in SHU. Potential participants with experiences in palliative care in any set ups were identified. Keeping the confidentiality and participants safety in mind one to one semi structured interviews were conducted to explore their in depth perceptions and experiences. Participants were made fully aware of the nature and purpose of the study through participation information sheet and written consent was obtained. As the study deals with the experiences of treating patients at the end stage of their lives, the author was prepared before hand in case any emotional issues breaks up, and SHU support and counselling address and booklet was kept handy.

Data analysis: All interviews were digitally recorded and transcribed. Conventional content analysis was used to evaluate the data. This approach is suitable to gain direct information from study participants without imposing preconceived categories or theoretical perspectives14. First each transcribed verbatim was read several times in a go to obtain a sense of whole followed by word to word understanding. Initial codes were derived by highlighting the words that appear to capture key thoughts and potential concepts. Data was organised by topics and themes were coded into categories which were refined and findings were developed.

Procedure and data collection: 10 potential participants were identified and 8 were approached for one to one face interviews. 2 participants could not participate because of their other responsibilities. The interviews were conducted at locations chosen by the participants. Most choose to be interviewed at their homes although 2 choose to be

All transcribed verbatim were forwarded to respective participants for member checking and their feedback 14

JOSPM 1 (2012) 11-22/ Jivan J Sharma enhanced the methodological rigor. Inter researcher triangulation approach was used through an independent researcher who further analysed the data and themes for a check under strict confidentiality. Only the primary researcher knew the identities of the participants and all identities from the data was erased. Peer debriefing further helped the author to maintain objectivity and participants were allowed to assist with an open ended prospect with the notion of data triangulation.

having an additional home based palliative experience of 6 months to 1 year. One of the participants has worked at community level on an average on 6 hours every week. Half of the participants gained some experience during their compulsory internship programme during bachelor’s degree where as none of the participants received any specialised formal training in palliative care. However one member attended a 3 days workshop of understanding palliative care though it was for general medical professionals and nurses.

Findings:

It was clear from the way the participants narrated their experience that they view their role more than just a physiotherapist and also a strong sense of putting appropriate holistic approaches together to improve overall QOL was evident. 3 themes and 5 sub themes emerged from the interviews.

Participants 8 eligible physiotherapists volunteered to participate in the study with an overall experience from 2 to 5 years. Majority of them have worked in multi speciality hospital set ups while 2 were

Themes

Table I Key themes and sub themes Sub themes

Recognising role

*Modification as per patient’s needs *With respect to relative query *With respect to patient enquiry

Emotional concerns Lack of resources

*During the sessions *Demise of the relationship

with no specific training in palliative care, they were attentive and recognised patient’s needs at the end of their lives.

Recognising role: Although the participants were trained and worked in different specialities 15

JOSPM 1 (2012) 11-22/ Jivan J Sharma

Modification as per patient’s needs: Approach of providing care was found to be modified in all the participants keeping the physical and emotional conditions of these patients in mind. Physiotherapists do have skills to assists patients in symptoms relief and range of physiotherapy methods like respiratory management, analgesic modalities, different re-education techniques and relaxation therapy was mentioned and a great emphasis on clinical reasoning was given. Main aim was to concentrate on the QOL not the duration.

With respect to relative query, Participant 3 -- Sometimes relatives are curious about the rehabilitation part and how we can help the patients, then we must share our short and long term plans. Participant 1 -I used to reassure them, explain them about the current situation and tried to minimise the suffering … after all they are going to lose their near or dear ones [long pause]. I think they also need some type of care and counselling. With respect to patient enquiry: cultural complexities were emphasised by the participants that makes it difficult and different for each individual patient. Many of the relatives do not want to inform their sufferer member. So physiotherapists have to mould as per the team decisions. This ethical issue of informing the patient stills persists and is beyond the scope for this article. Some comments from the participants were as in case where relatives refused to give clear picture,

Participant 2 -I could realise the pain and suffering in the bio psychosocial context. I had to change my approach from hands on to hands off…making them comfortable through my words. Participant 8 -It many times depends on the patients also. Some are strong and need less support or actually they are prepared, but… can’t leave them like that… we should modify ourselves to deliver the best. Response against enquiry from the relative and patient: Anyone can become sad, depressed and anxious when some dear one is near to death. There are always lot of queries from the care givers side and health care team needs to discuss these carefully. Informing the diagnosis was viewed as complex and varied responses were identified. Although consultant plays a major role here but the physiotherapists have to answer to these enquires due to their profound communication with the patients.

Participant 4 -- I never tried to tell them what they are suffering from, but used to explain the pathology part in lay terms. I used to say, I am a physiotherapist and more information you can avail from your consultant. Where the patients know, Participant 6 -- It is very difficult to handle this situation and the best you can say is, everyone has to try their best and we also have to…we have to encourage them for maximum participations and efforts. 16

JOSPM 1 (2012) 11-22/ Jivan J Sharma Demise of the relationship: this moment is always traumatic for everyone but the intensities vary. Because of the profound communication a therapist also guarantees a personal relationship up to the time of death. Emotionally challenge vies were:

Participant 2 -- It was difficult for me to what to tell and what to hide…the words were never planned, they just comes out according to the situation having more emotional concerns and support.

Emotional concerns:

Participant 5 – It is always sad and traumatic for me, as I share good therapeutic relations with them, but I had to avoid the emotional component. Participant 2 – At the start of your professional life, initially when you hear such news, you become sad and disappointed. But it’s a part of life … have to take it.

All participants described their work as stressful, struggling and emotionally challenging during their physiotherapy services and after the demise of the relationship as patient expired. 80% mentioned their feelings as depressed and sad with the news that patient has expired and 20% of the participants said they were prepared, not a sudden shock and better for the patients and carers. During the sessions: because of the nature of the work and the responsibilities, physiotherapists have to cope up with the emotional demands of their work and need to provide the psychological and emotional support to the patients.

Some participant’s viewed that illness was a burden for not only patients, but for family also and recognising this is also essential for a practical approach. Participant 6 – Everyone was prepared for it and it did not come as a sudden shock, though it is stressful and shocking, but that unbearable pain is no longer there.

Participant 8 – I always used to encourage my patients, giving them more support and motivation, but somewhere back of my mind it was always there that the patient is not going to survive for long… was very hectic and challenging.

Lack of resources: Though all the participants showed a great confidence level in providing care to palliative patients with their less specialised experience, all of them expressed the need for lot more support in the form of specialised training and education. Emphasis on additional training in UG, planning of continuous professional development (CPD’s) through specialist physiotherapists and skills development was outlined.

Participant 2 – I have to challenge myself with a strong heart that even I can't cure them, but I know I can make them feel better and I used to have more of healing words instead of healing touch.

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JOSPM 1 (2012) 11-22/ Jivan J Sharma Participant 7 – Lack of opportunities are keeping physiotherapists behind in this area. We do have PG in MSK, Respiratory, Neurology but we don’t have anything in this and I haven’t heard of any short physiotherapy courses also in this…

development but also for the inner qualities and relationships – insight which is not possible only through classroom learning. Thus if more opportunities are available more skills, knowledge, understanding and values can be developed that will not only improve the standard of care but also humanity. Though the participants were attentive and recognised patient’s needs at the end of their lives; eliciting the patients and relative’s perceptions will provide directions for the professional to approach them. Tailoring the information was evident and do vary on individualistic basis. As the patients and the carers have distinct needs and issues, they have to be carefully discussed.

Participant 8 – If I would have taught this in the same way I learned anatomy and biomechanics; I would have given a lot to my patients.

Discussion: The findings of this study displayed the perceptions of Indian physiotherapists in this challenging field of care. Although the participants had less experience in specialised palliative care their narratives establish the fact that they are able to identify the various needs of patients with life limiting illness and hence aware of the wider concept of palliative care. Recognising their role with all the holistic approaches of symptom control, emotional and psychological support was evident, but the means by which it can be organised to provide such therapy were limited to changes in the current curriculum in under graduate and post graduate studies. Research has shown that students acquire skills more effectively when taught in experiential format15 and interaction with the patients and relatives can be an effective learning tool16. While the participants in the study described their reflective practice as their learning tool; literature has suggested a need for ongoing learning 17 , not only for the professional

Emotional concerns were surrounded by the participants and they described their work as emotionally challenging and stressful. Motivation, psychological support and encouragement were expressed for a sense of security and hope for the patient and family. Physiotherapists do have to cope up with this emotional demand through out their work and even after the death of their patients. Literature also suggests that health professionals are increasingly recognising this stress. This is only from the physician 18 and oncologist’s 19 view points and thus more research is also needed from physiotherapist’s sight. Participant's thoughts were found to be limited for dealing with the religious and spiritual needs of these patients. All participants accepted that this is one of the important components at the end stages of life to improve overall QOL and identified 18

JOSPM 1 (2012) 11-22/ Jivan J Sharma order to emphasis this approach, teachers should include doctors, paramedical, nurses, social workers, voluntary agencies, chaplaincy and care takers which may help to achieve effective communication skills and team work that is essential in any care and organisation.10

that their role as a physiotherapist is limited and in this family members should be involved. India being home to many cultures consists of a multi faith society. A broad understanding of all the regions will be definitely difficult and adequate time and skills may be required to uncover and address such issues. Overall the participants identified palliative care as one of the core content area for undergraduate education. This requirement is necessary for better care and understanding. They believe that the way they learnt or adapted their approach towards the patients can be further improved by providing a generic evaluated undergraduate curriculum coupled with continuing professional development and post graduate education. The age of the patient was also one of the contributing factors that increase the challenges for physiotherapists. It was found to be difficult for the participants to vary their treatment in terms of psychological needs of these different age groups and the need for more education was expressed with emphasis on more of training associated with their bachelor’s degree and other relevant specialised areas in palliative care like paediatrics, geriatrics, cancer, elderly, etc.

The views generated in this study were of physiotherapists with less specialised palliative care experience, further expert opinions may help to refine or addition of some hidden themes. Researcher's focus was on perceptions of Indian physiotherapists and it is accepted that these perspectives may be different in other cultures and countries. However it is prudent not to generalise, as cultural diversity influence the principles and values, therefore views from ethnically different physiotherapists will provide broader understanding and are recommended for future researches.

Conclusion: This study points out the fact that lack of understanding of palliative care is not the problems faced by Indian physiotherapists but newer approaches are need to be considered to equip them to cater the needs of patients with life limiting illness. Also the other point of relevance pinpointed by this study is to look for avenues such as workshops, curriculum devised for imparting skills to deal with these specialised group of patients and to research the improvement of the overall scenario from a physiotherapist's perspective thereby

Furthermore participants recognized that local guidelines of the hospital trust and team decisions will also explains their hidden roles and effective communication with not only patients but also between team that will enhance the quality of care. Thus it is suggested that if palliative care is a multidisciplinary speciality then in 19

JOSPM 1 (2012) 11-22/ Jivan J Sharma suggesting a definitive role that needs to be played by them in palliative care in India.

Acknowledgements: The author is grateful to his supervisor Dr Hazel Horobin for her invaluable support and would like to acknowledge all the participants, independent researcher and peer for their valuable thoughts and services provided in this study.

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JOSPM 1 (2012) 11-22/ Jivan J Sharma Appendix 1: Palliative care in India

training during under graduation suddenly faces the uphill task of providing care to terminally ill patients and many a times is unable to cope with the emotional stress associated with it. This lack of understanding in the specialized field of palliative care is a problem with all healthcare professionals and thus hinders an effective team effort to provide care to the patients.

India is a developing country and healthcare issues concerning its more than a billion strong populations are many.1 Of these the major health hazards being infectious diseases the lion share of whatever resource available is utilized for detection and its control. Recent trends emerging show that leaving behind infectious diseases cancer and AIDS have taken center stage as the main cause of mortality in India. This trend has caused the healthcare sector to take essential steps towards palliative care which was unknown until the last 15 -20 years. Although recent measures suggest the advent of specialized care centers to provide palliative care but the rate at which the number of patients with life limiting illness are rising, the care center have been unable to provide services to all. Other than the rapid rate of occurrence of these diseases there are other obstacles for development of a palliative care standard equivalent to those in countries like United States of America and United Kingdom.

Another major setback to the provision of palliative care in India is the governing economics linked to it.3 India being such a big population and the number of patients suffering from different life limiting illness doesn’t have a social security system unlike USA and UK. The social security system in these countries allows the patient to afford palliative care which is costly. This problem of affordability is further enhanced when the majority of patients belong to a stratum of the society mostly rural and semi-urban which lacks proper nutrition, health care facilities and are mostly daily wage workers and small scale farmers. The lack of infrastructure in these sectors i.e. rural and semi-urban sectors worsens the scenario a bit more.

Among the many obstacles faced the lack of training for healthcare professionals to provide palliative care is the chief and primary concern.2 It is to be viewed that the curriculum of medicine, nursing and other paramedical services such as physiotherapy, occupational therapy, psychology etc. don’t include palliative care as a specialization in post graduation or as a subject in under graduate studies. Thus when a physiotherapist after completion of

Health awareness is an issue to be regarded in the Indian context as this is not a problem faced by developed countries in palliative care. Majority of life limiting illness is asymptomatic in initial stages. Due to a lack of awareness among the population about these disorder most of them are detected at end stage and during this period and the period leading up to 21

JOSPM 1 (2012) 11-22/ Jivan J Sharma palliative care systems in other countries may not suit the conditions in India. Hence an ethical dilemma persists among the patients as well as the care givers to chart out the actual course of action to be followed.

detection and treatment, the patient sustains a lot of trauma and emotional stress. According to World Health Organization guidelines palliative care should strive to control and reduce the suffering of patients.4 Thus due to lack of awareness among patients and family members the care which should have been provided during such traumatic conditions is not available to them. This distress on part of the patient is further increased manifold due to the prevailing stigma associated with these disorders in the society. In some sections of the society such illness is termed as the curse of previous misdeeds by the individual. This clearly highlights the ignorance rampant among the general public.

Many of the above described obstacles need to surmounted and by meticulous multi-pronged strategies to simultaneously counter lack of health awareness, lack of infrastructure, ethical acceptance in the society and financial aid to this specialized field of healthcare India can develop an indigenous model for the sake of providing some respite to these patients in their final journey and as Oscar Wilde remarked” It doesn’t matter how long, but how you live”. Thus be it whatever country or religion, everyone wants soul should rest in peace.

India being a panorama of different cultures a large number of alternative systems of medicines is available.1 In mostly the rural sectors of the healthcare system where proper medical facilities are lacking patients consult the local vaidyas (doctor of ayurveda) or the hakims( physician in Unani medicine). Mostly the symptoms are treated with much concern rather than the underlying pathology. This though may provide temporary relief to the terminally ill patients but doesn’t fulfil the continuous care necessary for these patients. India being home to many cultures consists of a multi faith society. Many different religions thrive in such optimal conditions. Religions like Hinduism preach the idea of reincarnation, supreme salvation etc. Thus a ditto copy of the prevailing 22

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