Community participation in palliative care
Keywords: community participation, coverage, palliative care, cost effectiveness, public health
The community palliative care projects of northern Kerala and the Neighbourhood Network in Palliative Care, NNPC exemplify a solution to a worldwide problem - how to achieve meaningful coverage and care for the terminally ill. They demonstrate the way to"Palliative Care for All".
Having supported the creation of the Indian Association of Palliative Care and its journal in the early 1990s, I have been disappointed by the lack of pragmatic, realistic solutions for India., Instead, many of the mantras of the west have been regurgitated. I have been closely involved with the development of pain relief and palliative care in India since 1980, and I judge the NNPC approach to be among the most important, relevant, and realistic for achieving meaningful coverage in India. The majority of India's terminally ill are in its 500 plus districts, and it is in those districts that they should get their care, their pain relief, and their palliative care - not in the big specialized centres. So in the mid 1990s, I made the Calicut Kerala community approach a WHO Demonstration Project., At the same time, the Indian Ministry of Health and Welfare tried to initiate similar approaches in other districts - something that, as expected, failed. The NNPC is so far the only model that has successfully shown the way forward to the charge I often repeated when Chief of Cancer, WHO, that "The same attention we give those that enter life, the newborn, we should give those that leave life, the elderly and terminally ill".
Therefore, I am very happy to have been given this opportunity to comment on the NNPC, and as the suggested questions by the Editor, Reena George, are well thought through and important, I will keep to the format of addressing those questions in the order raised.
Q: What is the potential of community involvement in palliative care?
A: Enormous. The community approach is the only realistic model for achieving significant coverage of care for two thirds of the world's terminally ill. Meaningful palliative care requires a combination of socio-economic, cultural, and medical solutions. Only by the active involvement of the community in addressing all three factors can palliative care reach all sufferers in need of it. The cultural and socio-economic factors are equally or more important to what kind of death we face, than the purely medical. Today there is an overemphasis on the medical approach, and only by empowering the community can this be balanced.,
The Palliative Care District Projects of Northern Kerala have showed the way forward for many of the world's countries.,,, They are one of the very few that have made palliative care a popular health movement, and this in a true Gandhian spirit "for the people, by the people, with the people". The NNPC have shown that local communities can be empowered to identify the chronically ill (e.g. also paralysed and bedridden) and the terminally ill, regardless of disease or cause, and to support them and their families with self-sustainable community led services despite limited economic resources and without any outside economic support. In other words, the community has taken responsibility for the care of its chronically and terminally ill. Bravo!
The hospice approach or the institutionalised medical approach has failed to reach the majority of those in need of palliative care, covering only a lucky few. The West is not always best. There, birth and death have been institutionalised and traditional cultural support systems have been lost to a purely medical approach that, in the very near future, will not be sustainable, much less reproducible in the rest of the world considering the rapid aging of the populations. The ratio of caregiver to caretakers has already reached a ratio of 2:1 and may soon be 1:1, and today's brilliant hospital/hospice care for the select few will not be possible for the majority of the world's terminally ill.
Death is a natural and unavoidable fact of life. The attitude of a community, a society, to the dying elderly who constitute the majority of global deaths, and to the chronically ill is more important for a good death than the purely medical approach. Palliative care starts here! The four principal needs identified as important to provide in-home care of the terminally ill in order of importance to size of the problem are: social support, psycho-spiritual support, nursing care, and medical clinical management. The community approach of the NNPC addresses at least the first three of those four, and partially the fourth.
Achieving proper nutrition, relieving social isolation, alleviating poverty, establishing contacts, assuring family support, and maintaining basic hygiene are the worldwide priorities in social support that the NNPC has effectively addressed when covering the majority of the terminally ill in their districts. Information, referrals, and needed transport have been provided for too. Transportation is not by expensive ambulance services or project cars but by the volunteer privately owned cars. Psycho-spiritual support starts to work when the terminally ill are recognised as such and given attention and their families are supported in their care. To share a moment, a look, a silence - to touch, to listen, and to show empathy as the volunteers do goes a long way. Helping with unfinished business helps as does recognising a depression and informing the health professionals.
The volunteers are doing much of the needed nursing care such as wound care, cleaning out of maggots, doing bedsore prophylaxis, promoting and maintaining good hygiene, and nutrition, supervising the taking of prescribed medications, and supporting and empowering the family members in their care.
Medical clinical management has admirably addressed one of the main symptoms that can be controlled in the terminally ill, namely pain. Affordable generic immediate release morphine, not available even in many medical centres or hospices, is easily available and given. Numerous doctors in the districts have taken extra courses in pain relief and palliative care, and an effective referral system has been built up and supported by the community. The social web is probably a key factor in the success.
Three of the major impediments for implementing existing knowledge, namely weak human resources, lack of institutional infrastructure, and lack of financing, have been addressed and solved by NNPC. This offers one explanations for the success of the NNPC. Repeatedly, these same three issues have been identified as problems that have to be solved before knowledge can turn into action and improve health systems.
While with WHO (1980-1996), I initiated a public health approach for palliative care to improve coverage by implementing existing knowledge in a rational way, to close the "Know-Do Gap". The WHO Pain Ladder  and policy recommendations  were developed. In 1990, WHO recommended to all its member states that "Pain relief and palliative care programmes are incorporated into their existing health care systems: separate systems of care are neither necessary or desirable" and " to ensure that equitable support is provided for programmes of palliative care in the home" and that "In the light of the financial, emotional, physical and social burden carried by family members who are willing to care for patients in the home, governments should consider establishing formal systems of recompense for the principal family care givers" and "should ensure the availability of particularly morphine." Only a few countries, e.g. the Nordic countries and Catalonia, Spain, have implemented this.,,, However, each country has to find solutions for the care of its terminally ill according to its cultural and socio-economic circumstances. The Kerala Community approach certainly is in accordance with WHO recommended Public Health and Primary Health approach.
Human resources have been mobilised for palliative care and broad capacity building for home care done, based on ethical principles and equity for all. The infrastructure for home care was strengthened without building expensive separate buildings and buying special project cars, which are common errors in many other projects.
The people have raised the necessary financing for all the people in their local districts. The people have take ownership of the program, thus creating economic self-sustainability. The people in the community have taken responsibility for caring for their terminally ill, addressing their social, spiritual-emotional, and physical pains and sufferings.
There is no way to compare "quality" without objective numerators such as numbers covered or ratio of professional caregivers to caretakers. Audit, standards, and quality are other popular mantras al la mode from the West, which are being murmured uncritically before any palliative care is in place to reach an acceptable number of sufferers. "Don't sell the skin of the bear before he is killed"
In summary: I judge the NPPC community approach in the districts of Malappuram, Kozhikode, Trichur, and Wynad to be potentially not just very important but extraordinary important.
Q: What are the limitations?
A: Per se there are no limits to the concept. The world is the limit. If it could be implemented globally, it would be the most important advancement in palliative care. It could have a very positive impact on many of the 58 million people who die yearly and on their family members, thus improving the quality of life for over 100 million people. 
However, a limitation at present is the uncertainty of the cross-cultural robustness of this approach, whether it can be implemented in other districts in India, and in other countries with different socio-economic and cultural conditions. Foreseeing this, a highly competent and motivated research couple, the Pampallonas, were introduced to the WHO District Community palliative care demonstration project, Calicut, some years ago. Research is ongoing to try to identify what has made it work in Kerala and to isolate "generic" factors that may be effective anywhere. Thus the uncertainty of its "exportability" remains a drawback until answered.
An unsuspected negative effect might also be that because of the approach's cost effectiveness, it may not get needed support from the medical profession to completely cover the fourth important parameter - i.e. medical clinical symptom control. Medicine and health care is more and more an industry driven by needs for profit, greed and kickbacks. Health care is becoming a business at all levels, from ambulance transports to unnecessary laboratory tests to over treatment, especially as observed in South Asia. Because of the international pharmaceutical industry's refusal to provide affordable generic morphine and instead aggressively marketing new drugs that are not better but are prohibitively more expensive, medical colleagues are quick to prescribe expensive drugs, affordable only to a minority, for routine pain control. Terminal care and death can easily be commercialised in India, and then only a few idealists will offer medical coverage affordable for the majority.
Another problem is the negative attitudes by specialists who do not realise the importance of coverage and are unwilling to accept that it is not a question of either or, but of two interdependent but complementary approaches - everything for a few vs. something for all needing it - each with advantages and disadvantages. When the caravan moves on, the dogs bark- and there may be lot of barking from the medical palliative care specialists when the community approach marches on.
An approach that provides valuable support and care and addresses the key problems of the terminally ill for all in need of it in a community would ethically,, take priority over the presently favoured approach of using a multidisciplinary team of palliative medicine experts in specialized nursing, psychiatry, counselling, and bereavement to care for a lucky few. It will never be possible to sustain the latter option to cover all. Common sense is, however, not common. Both approaches are needed and one should not exclude the other.
Q: What programmes would you rate as the examples of achieving good palliative care coverage with community participation?
A:The powerful community approaches in AIDS in USA have been very successful and offers good examples of how to make such an approach a part of the people's health agenda, influencing the policy makers and decision makers globally.
The (community) palliative care initiatives in AIDS in South Africa and cancer and AIDS in Uganda,, have led to government policies and recommendations. The South Coast Hospice Home Care Initiative´ s reproducibility has been tested in several provinces and in both rural, super rural, and urban areas.,,,
The Catalonia WHO Demonstration project,, has been evaluated the longest. It has been providing palliative care since 1990 for the terminally ill who are dying of cancer, old age, chronic diseases, and AIDS, and has covered over 80 percent. It is a combination of NGO and community based approaches with official policies and governmental support.
The Kerala District community and NPPC projects for terminal care is the newest and it is a financially self-sufficient community approach, initiated, run, and owned by the people. It is unique, and if it can be implemented elsewhere, it would be one of the most important steps forward in global palliative care.
Q: What are the pluses and minuses of the community initiative in Calicut?
A:The pluses dominate, so let us start with the minuses
•The lack of hard nosed quantitative data (when the Manjeri Workshop was held in November 2004). However, data is being collected and analysed with respect to needs, coverage, morphine consumption, interventions done, quality and patients and family satisfaction.
•Clear borders need to be identified for interventions by volunteers with policies for referrals and additional medical support, if available.
•The uncertainty of the reproducibility of the Kerala community approach and its transplantability to other districts in India and other parts of the world. Again, research is ongoing to try to identify what makes the community approach work and is isolating the factors that "generically" could be used in other cultures and socio-economic communities. Some districts in Assam, in the northeast part of India, (opposite to Kerala in the southwest) have already started the community approach and are putting the concept of NNPC to the test.
Long-term research is ongoing addressing the uncertainties mentioned above and data are already forthcoming.
•The NNPC has succeeded in making palliative care a people's movement in health, to address in a pragmatic and realistic way one of the major events in our life- death - and made the people take responsibility and ownership for the care of the terminally ill in their society.
•They have established high ethical standards of equity allowing all to be covered.
•They have demonstrated an alternative to the present over-medicalised, over-specialised, institutionalised, and in the long run unaffordable care of the dying.
•They have demonstrated a financial self-sustainability with all needed money being raised by the people themselves, even in a society that is economically relatively poor.
•They have shown that the key problems of the chronically ill and terminal ill within the categories of social support, psychosocial support, nursing care and even medical clinical management can be covered by empowered volunteers and laymen.
•Another plus is that the community approach offers an alternative to the moral decline seen in the public health sector over the last 15 years. India´ s government is in the bottom of the league with respect to economic allocations to health. In this situation, it seems unlikely that palliative care will be covered. Privatisation and commercialisation of medicine seem to take over where the public services are fading out. In this situation, the NNPC also offers a healthy alternative in terminal care.
Q: How can one balance quality assurance with wide coverage at low cost?
A:Simple - by common sense. First, evaluate what palliative care can be done in the community to allow a high number to be covered with interventions that will benefit and support the patients and their families. Then document that they have sufficient positive effect, set standards, and monitor quality.
Establish a policy by which patients should be referred to a doctor or specialists qualified in palliative care, if at all possible - e.g. within a reasonable referral distance, and provided they have capacity to cover an increased load of new referrals. If this is not possible, it should not prevent the palliative care at community level from being done. Imagine the two approaches as sitting in a triangle, the specialist approach as a tiny pyramid at the top and the community approach filling up the rest of the triangle from a broad base, all in the triangle being palliative care [Figure - 1]
Avoid comparing the quality with an intervention, which is done, supported by a multidisciplinary team covering many fewer patients. Many interventions done at community level may not be done in the institutions, some may be done in both, and some better, in one - e.g. some of the medical symptom control is better done by the multidisciplinary team.
You should not compare chocolate with mango. The problem with standards, quality, and audit is the lack of a clear numerator, the input done for the quality of output achieved. It is absurd to expect that a multidisciplinary team (a specialist in palliative care, various nursing specialists, a social worker, a psychiatrist, a counsellor, a religious chap, plus or minus volunteers) will cover the world's palliative care needs.
However, a recent debate article questioned the community approach asking, "How basic is palliative care" and "What is palliative care- a speciality care delivered by a multidisciplinary team of professionals? Or is it basic care that anyone with some commitment and training can provide to the community in need?" Much of what is done in the NNPC certainly qualifies as palliative care as defined by WHO. Perhaps we one day may call the community palliative care standard palliative care and the multidisciplinary version super sophisticated care.
The same colleague defends "a position that restricted the number of referrals, keeping in mind the ability of the multiprofessional team to cope and deliver standard care" because a volunteer said "We should refuse none and seek more and more." There is an ethical problem of injustice and equity here when we know the multidisciplinary team doing the palliative care never will achieve sufficient coverage.
Our colleague does not accept the number of people covered by a programme as a measure of its effectiveness and suggests instead the quality of care as the measure (without a numerator). Really? Instead our colleague has an ethical problem with the community approach stating "Is it right to offer people something just because there is nothing, or are we duty bound to strive for the best even though we may have to limit the numbers we are caring for in the process?" Really!
The final question raised in this honest debate article is: "Can we rid palliative care of centrality of the professional multidisciplinary team, leaving care to volunteers, and still call it palliative care?" I hope my earlier elaborations have answered this question. Both are needed as in the symbol of the triangle [Figure - 1] describing their places in palliative care, both are important for making the picture complete.
I hope that the super sophisticated care establishment will identify with the community palliative care approach and continue, as done at my time in WHO, to help to distil, develop, and provide "methods that are scientifically valid, acceptable and maintainable at community level," similar to the WHO Pain Ladder.
The Pain Ladder and the Northern Kerala Districts Community Programmes are true to the charges that WHO gave to the world in the Declaration of Alma Ata aiming at "Health for All" through the concept of primary health. The Alma Ata declaration is quoted by the NNPC in the introduction to their excellent workbook "Primary health care is essential health care based on appropriate and acceptable methods and technology made universally available to individuals and families in the community through their full participation and at a cost that the community and country can afford to maintain in the spirit of self-reliance" The district community approach in palliative care now, twenty six years later, shows the way forward for palliative care to "Palliative Care for All". Let that become our war cry!
Q: What could be your do's and don'ts for some one venturing into community participation?
A: Don't ask me; ask Mathew, Anil, Suresh, Rajshree, Shabeer and Sandro. They know. All I advised my medical students was "Listen twice as much as you talk"
[Figure - 1]