Community participation in palliative care: A comment
Correspondence Address: Source of Support: None, Conflict of Interest: None DOI: 10.4103/0973-1075.16640
Source of Support: None, Conflict of Interest: None
Keywords: community participation, palliative care
At the outset, I must admit that I have more questions than answers.
To begin with, what do we mean by the word 'community?' Are we referring to a collection of people who inhabit a particular geographical space? Or should our description be guided by the criteria laid down by sociologists, for whom a community implies people who live together, have regular face-to-face contacts and enjoy complex relations with one another? What about well-meaning people who wish to volunteer their time and effort to help others who they may never have met; do they form a community? To take this further, could not paid professionals with a particular expertise and commitment, who wish to perform a public service, be regarded as a community?
Next, we come to the word 'participation.' What do we mean by participation in the context of palliative care? Are we talking about the delivery of care by a trained team of multidisciplinary professionals? Or, are we thinking of an amorphous set of interventions carried out by those whose sympathy arises from shared lived-in experiences, as in a community? Or, do we propose a mix of the two; perhaps even reactivating the now moribund primary health centers to contribute their energies alongside those of trained palliative care professionals and members of the community?
There is also a need to clarify our understanding of the role of palliative care. Do we see it as care that requires specific expertise, best delivered by a trained multidisciplinary team of professionals, or is it primarily about holding hands? Or, if the two are to go together, who is the leading partner? Certainly in terms of the definition given by the Expert Committee of the World Health Organisation in 2002, the emphasis is on expertise: 'palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual (emphasis mine).'
To sum up, not only should we be clear as to what we mean when we use the terms 'community' and 'participation,' but we must also decide how much of the emphasis in palliative care should be on expertise in caring. One way that has been suggested to find an answer is to undertake a carefully conducted programme of research, which will evaluate the efficacy of different efforts. However, for this to work, we need to be aware of our own biases.
There is a tendency amongst us to mourn the loss of a traditional past with its sense of a closely knit and concerned community. Yet, when we look closely at the requirements of palliative care delivery, can we overlook the specifics of the dying patient's deepest needs? Are the interests of this sick person best served by amorphous interventions extended by well-meaning people, perhaps even neighbors, or by trained professionals comprising doctors, nurses, and counselors? What has been our experience at CanSupport?
The CanSupport domiciliary palliative care programme began in 1997. It was a response to the objective situation prevailing on the ground as well as to a subjective experience.
Everyday there are hundreds of patients with terminal cancer in Delhi who are turned away from treating institutions once their second or third lines of treatment fail. These are people who, by and large, are now practically bankrupt, at the end of their emotional tether and have nowhere else to turn. I personally accompanied one such young woman to numerous quacks in Delhi and elsewhere who offered her the hope of a cure. Finally, the only recourse for her mounting pain was oral morphine. She did not begrudge the uncomfortable hours she had to spend, constantly shuffling her body on a hard wooden bench, while she waited for her turn in the OPD of a local cancer hospital.
Her obvious physical symptoms demanded first and foremost a medical response to ease her pain and make her physically more comfortable. She was, besides, a young woman who was dying prematurely and who had consequently slipped into an acute depression. She needed expert help. She and her family had no dearth of support from family, friends, employers, and well wishers - the community, as it were - but this was not enough. Her situation was tragically cruel but, alas, is quite common among terminally ill patients.
I must say that I had no solutions to offer her at that time but I was determined to find a way to help people like her. The germ of an idea to provide continuing care at home to people with advanced cancer, using a team of experts, was beginning to take form.
The reason I relate this incident is to make the point that CanSupport's domiciliary programme from its very inception responded to a very real and vital need. Those of us who started it were also people who had had our own personal experiences with cancer. We came together as a band of volunteers with a common and very specific mission, to bring comfort and appropriate care to people and families who were battling alone with end stage and life threatening disease. Our volunteers today run the day care and telephone help line services and help with fundraising and other sundry tasks. They also provide much needed back up and support to the home care programme in terms of garnering resources in the form of free drugs and medical equipment, food rations, and sponsorships for children's education.
The experience we had gained early on, during the pilot project that we had conducted jointly with the Institute Rotary Cancer Institute (IRCH) at AIIMS in 1997, had made it clear to us that domiciliary palliative care was best done by trained professionals. I recall moments when I, as a visiting counselor, had to step outside, as I could not bring myself to gaze upon the terrible wounds that the nurse was dressing. There were also times in those early days when my companion on home visits, Ruth Wooldridge, a qualified nurse from the UK, expressed a need to have a doctor at hand for an accurate medical assessment that would help pinpoint the cause of a patient's physical distress and therefore the appropriate treatment to relieve it. It is, clearly, also a question of being honest enough to accept one's limitations. Consequently, from the beginning, we have employed nurses, doctors, and counselors, given them training in palliative care, and they have worked as a team. Our experience over these past 8 years further suggests that there is no substitute for a professional team that includes a doctor. While the nurse and counselor are most welcome and become close confidants, patients and families repeatedly ask for the doctor and are reassured by his/her presence.
We not only believe that it is in the interest of those we look after to have people care for them who are knowledgeable and able to intervene when required in a safe and effective manner, we also feel that the continuity of care is a must. This is something that we cannot ensure, along with confidentiality, when it comes to volunteers. They, naturally, have personal and family commitments that often take precedence and thus are not always available. It is very disturbing for patients to be confronted by a new face every now and then. On the other hand, it is equally difficult for them to open up to people who live in their localities, who are easily available and with whom they are familiar. These are people with whom they have a shared history; sometimes good sometimes bad. They do not view them as disinterested outsiders.
We are constantly asked by a number of our patients to park our vehicle at a safe distance, away from the curious eyes of neighbors. It is a request we abide by, as we are only too aware that not only is it a matter of preserving confidentiality but that in our society cancer carries a stigma that can impact negatively on the patient and on the family. It is the reason why people tend to hide the diagnosis even from those closest to them. Keeping this in mind, rather than enrolling volunteers from outside, we would rather teach the primary caregivers basic nursing skills and give them our mobile telephone numbers so that they can always stay in touch with our team. We have found that even the most illiterate are willing and able to learn and make most effective caregivers. Involving them in the care of their patients is also a way of helping them rebuild their shattered self-esteem and add to their sense of worth. Many families we care for have been reduced to the status of beggars thanks to the exorbitant costs of cancer treatment. It is nice for them to feel that they have something to contribute.
Besides the day-to-day involvement of our volunteers, we also have a wide network of family contacts, friends, associates and well wishers. They come from all walks of life and from all parts of Delhi, India and the world. A significant number of those who support us have been touched by cancer in one way or the other or have experienced the blessing of hospice in their lives. They act as our good will ambassadors and help carry the message of our work with them where ever they go.
To conclude, I have focused on the involvement of people from different walks of life and sections of society in the various programmes of CanSupport; however, I would hesitate to describe them as a 'community.' As far as the nature of participation is concerned, it flows from our understanding at CanSupport, borne out by our experience, that palliative care is best delivered by experts from different disciplines. This is why our multidisciplinary home care team is at the forefront of delivering domiciliary palliative care. We do use volunteers for providing back up and for other purposes but perhaps the word 'popular' or 'public' would be more accurate and helpful to describe their participation rather than the word 'community.' I would like to contend that this is true for the phenomena that we are witnessing in Kerala and elsewhere as well, where palliative care services are growing and developing at their own pace in reference to the context. For me, therefore, the debate of community participation versus other forms of participation in palliative care is a nonstarter. The much more relevant and important question is: how can we best meet the physical and psychological needs of the dying patient? If we keep this as our central theme we shall, I believe, be able to see through much of the romanticism that accompanies terms like 'community participation.'