Reflections on India

by Liliana De Lima, MHA
IAHPC Executive Director

Many articles have been written and published about palliative care in India reporting the progress achieved in the field. Palliative care workers in the country have made incredible efforts, some for more than 20 years, to improve the care of patients with life limiting conditions as well as helping their families. Advancements in program development, education and opioid availability have been achieved thanks to the commitment of these great individuals and the support of organizations in other countries.

One of the most featured and widely recognized is the state of Kerala, located in the Southwest coast of the country. Kerala has been able to develop and implement a community palliative care model and it has adopted a state policy on palliative care, something that has not happened in the rest of India. Kerala is definitely a beacon and a role model in the provision of palliative care at the community level. There is a strong network of support from volunteers, professionals and technicians working throughout the state caring for thousands of patients and their families. Many representatives of organizations, such as the World Health Organization (WHO), have featured the case of Kerala in their publications and presentations.

Thanks to this recognition, several community based programs in Kerala have received funds and donations from organizations and individuals in developed countries enabling them to strengthen their capacity, establish new training programs, and improve the quality of care provided by their home care teams.

After my visits to the different programs and reflecting on what I saw and heard during my stay in India, I believe that the international palliative care community, the WHO, and funders need to target support at other programs and models of care throughout the country. During the Congress of the Indian Association for Palliative Care in New Delhi, I heard speakers suggest that the Kerala model should be applied to the rest of the states and maybe other developing countries as well. However, I think this is simplistic and may carry unwanted negative consequences.

Here are my reasons for concern:

• Kerala is not the same as the rest of the country – in fact, the state differs from all the others. The capacity of the civil society to influence changes in state policy is quite unique and privileged. It is also the state with the highest literacy (including highest female literacy), thanks to sound policies on mandatory education for children and the prohibition of child labor.
• The promotion and showcasing of the Kerala initiatives has generated a significant amount of funding from international sources to community programs in the state. This has increased their capacity and sustainability, which is extraordinary and well deserved. It has also resulted in a not surprising cycle: More funding increases visibility which in turn results in more funding. Because most of the programs in other states have not been recipients of donations, there is a gap now between the level of development of the palliative care community programs in Kerala, and the rest. This gap has increased over the years and will continue to do so if international funders fail to also support hospital based and community programs in other states.
• There is a lot of suffering going on and much futile care is applied in clinics and hospitals (both private and public) throughout the country, including in Kerala. Unless we are able to support Indians in their effort to develop and establish programs in medical universities and teaching hospitals, this needless suffering and wasting of resources will continue. In addition to supporting community based programs, we should advocate for the inclusion of palliative care in these institutions.
• We should also advocate to professionalize palliative care and to recognize it as a subspecialty in medicine and nursing. Many extraordinary, talented professionals are forced to leave the field because there are no job opportunities in palliative care, and those who stay either work ad honorem or have to raise funds from private or international donors to pay for their salaries. We need to adopt strategies to ensure that paid positions in palliative care are created and incorporated in the institutions’ budgets as well as in community level programs, and to guarantee the continuity of the field.
• According to data from the (WHO), almost 800,000 deaths were caused by cancer in India in 2002, and data from the MOH estimates more than one million (see http://mohfw.nic.in/kk/95/i9/95i90e01.htm and http://tinyurl.com/cq6yhx Out of the designated 24 Regional Cancer Centers (RCCs) in India, only a few have operationally effective palliative care programs, and very few are staffed with full time physicians and nurses. In most RCCs, terminally ill patients usually are cared for in the wards, mixed with patients who are in active treatment. Support for salaries, education and capacity building for palliative care are urgently needed in the RCCs around the country.
• The average consumption of morphine for 2001 (the last year for which country consumption statistics are available) was only a staggering small 0.1 mgs/capita: Five grams less than the global average and half of the average of the SEARO region (from PPSG data in http://www.painpolicy.wisc.edu/internat/SEARO/India/opioids.pdf ), and less than 1% of the estimated need to alleviate patients with cancer pain in India (see http://www.painpolicy.wisc.edu/publicat/07jpsm/india07.pdf ). A lot of work has been done to ease the existing barriers in the laws and regulations in different states, including Kerala. My guess is that most of the morphine consumed in India probably occurs in Kerala at the community level and in the few RCCs which have operationally effective palliative care programs, with little or no availability anywhere else. Strategies to improve availability and access to morphine in other states should be encouraged and supported.
• We should support individuals in other states who are working with their local governments to develop a state policy on palliative care. Palliative care needs to be recognized as a component of care and the states’ governments should assign a budget for its provision. Otherwise, there is the risk that politicians, legislators and finance ministers may take the easy route, arguing that palliative care should be community based, provided by volunteers and funded by the civil sector.
• An unwanted consequence resulting from this, insofar as palliative care is concerned, is that India could end up having two parallel systems of care, with little integration of the community services with the rest of the health care system. Under current conditions, community providers do not have strong support to rely on at the primary, secondary or tertiary levels. The burden of complications, acute emergencies and special needs should not fall on the shoulders of community care providers. Carers should be able to refer patients to institutions and specialized services when needed.

The recognition and credit received by the community programs in Kerala are well deserved, but the lack of support to programs and initiatives in other states is not. In our commitment to support Indians in their efforts to develop palliative care throughout their country, we should be careful to ensure that we strengthen its provision at all levels of care, while avoiding the presumption that models can be transported and implemented everywhere. India is a complex country with vastly different cultures, ethnic groups, political preferences, local governments, demographic and economic conditions. We need to hear what Indians throughout the country are saying, and then provide help and guidance, not impose what we believe is appropriate.

I am very grateful with all the wonderful people who welcomed me in their programs and allowed me to spend time with them. They are all extraordinary and committed individuals who are working tirelessly to bring comfort and care to patients throughout the country. It was an experience that enriched my life in many ways.

Houston , March 2009.