In response to a growing demand for palliative care, Dr. Suresh Kumar sees the need for healthcare to go beyond standard institutions and medical facilities. He has designed a volunteer-led care system that provides an alternative to the rigid and ineffective medical institutions of the region. Dr. Kumar’s approach moves services from institutions and hospitals to neighborhoods and homes in order to effectively address the social, psychological and medical dimensions of care.
The New Idea
The Institute for Palliative Medicine (IPM) founded by Dr. Kumar in 2003 is one of the few training institutions for palliative care in Asia and the only institute focused on community led care. IPM has created the Neighborhood Network for Palliative Care (NNPC), which is currently operating throughout the state of Kerala through a network of neighborhood-level units. The network links volunteers trained by the IPM program, full-time doctors, staff and auxiliary nurses to serve over 2,500 patients a week. By placing communities at the center of this palliative care network, Dr. Kumar is creating a critical role for communities in the healthcare system and making palliative care more affordable and accessible.
Dr. Kumar recognizes that institutional healthcare delivery systems are ill-equipped to meet the changing demographics and needs of society. Palliative care is still only accessible to 8 percent of the 100 million people in need of it globally. To provide effective treatment to a growing number of patients with incurable and chronic diseases, he has created a volunteer-led model that effectively distributes the responsibility, cost, and resources among the larger community.
Rather than viewing the provision of palliative care as a medical problem with a social component, Dr. Kumar believes the treatment of chronic diseases and incurable illnesses are social problems with medical components. Dr. Kumar has created a sustainable model in which community volunteers run independent, local palliative care centers with medical professionals and nurses serving in a supportive role. Each neighborhood-level care unit raises funds from the surrounding communities to support its efforts. Each unit also employs doctors and nurses as needed to support their work. The volunteers typically provide home care, which removes a huge financial burden on the healthcare system and the patient’s family. Free care is provided to poorer individuals, who constitute the majority of the centers’ patients. Thus the services provided by the local units improve the quality of palliative care as it pertains to the socioeconomic impact of the illness along with direct medical needs.
In the process of taking care of the terminally ill, Dr. Kumar has seen volunteers develop strong qualities of empathy, leadership, and teamwork. Volunteering with Dr. Kumar’s organization can be seen as an entry point for developing more effective citizenship.
The improvement of healthcare services over the last few decades has significantly increased the quality and longevity of life of much of the world’s population. According to the U.S. Department of Health and Human Services, the number of people above the age of 65 in the world is projected to reach one billion (or one-eighth of the global population) by 2030, rising by 140 percent in developing countries.
However, the shift in global demographics is posing a new set of challenges for the healthcare system. For instance there are now more people living with heart disease than dying from heart attacks. Increased longevity means that the demand for end-of-life care is likely to rise sharply. There are few countries (developed countries included) that have incorporated palliative care strategies into their overall healthcare policy. For instance, training for palliative care is rarely included in healthcare education curriculum. This contributes to the lack of trained medical professionals who can effectively address the issues of pain and suffering in patients.
Palliative care is defined by the World Health Organization (WHO) as an approach for treating life-threatening illness that diminishes the negative impacts of an illness upon a patient and his or her family by focusing on alleviating pain and holistically treating the patient. In standard institutional systems, however, palliative care is only provided through hospices. While hospice care is designed to cater to a patient’s medical needs, it often leaves out emotional, psychological, and social aspects of treatment. Despite the fact that palliative care has existed in India for over twenty years, only 2 percent of patients receive it: still unaffordable to the vast majority of the population.
Although there are approximately sixty hospices run by citizen organizations (COs) and religious groups across India, there has not been any sustainable effort to address the issue of palliative care at scale. While volunteers are traditionally involved with supporting hospices, their role has been limited to administrative activities and fundraising. Volunteers are mobilized in limited numbers to support the operations of the hospices.
Existing institution-driven models are not designed to reach a majority of the Indian population in need of services. They have failed to recognize that palliative care needs exist well beyond the scope of institution-based treatment. The fact that 75 percent of terminally ill and chronic disease patients in the United States choose to receive care at home as opposed to seeking treatment at hospices demonstrates that alternative treatments are possible. Furthermore, these alternatives must center on trained caregivers that can provide quality care.
Volunteers form the backbone of the NNPC. The IPM starts working in an area by organizing a public meeting with a few socially active citizens and introducing them to the issue of palliative care provision. IPM invites them to undergo a 16-hour basic training that covers different aspects of palliative care, focusing on particular roles they can play as individuals and as a team. During the training, volunteers are asked to conduct home-visits and document problems faced by terminally ill or bed-ridden patients in their neighborhood. The volunteers collectively discuss solutions and design a social support program tailored to their community. The initial focus of the NNPC is to provide emotional and financial support to patients in their locality. The volunteers start raising funds and other resources from the community and mobilizing additional support to get the local center off the ground.
Once NNPC has stabilized its presence, IPM recommends them to formally register as a charitable society. This way each neighborhood group is an independent legal entity governed and accountable under the applicable laws. Each NNPC center is also connected to a group of other centers within their district that meets every month. Each district-level group identifies and supports the salary of a full-time nurse who attends to the patients and provides the volunteers guidance in caring practices. Typically three to four NNPC centers share the services of at least one full-time trained doctor. From time to time, other doctors also contribute their time voluntarily. Outpatient clinics are established in larger neighborhoods and in-patient facilities are available at the IPM headquarters and through agreements with numerous local private hospitals.
Volunteers have the most frequent interactions with patients; however they do not provide any medical advice or perform medical duties. The IPM trains medical professionals in the area of palliative care to support the efforts of its volunteer teams. Individual volunteers act as emotional support for patients and their families, and work to support families by providing critical non-medical care, overseeing medical compliance, and working with family members to increase and inform their participation. Volunteers advise patients about nutrition and transportation needs. They also help the families improve their socioeconomic status by engaging them in revenue-generating activities, such as making handicrafts and setting up small shops. Finally, volunteers connect patients to existing local healthcare providers, COs, and local government, as required for more specialized care.
The IPM currently operates NNPC centers in fourteen districts of Kerala through a network of 200 neighborhood level units. It brings together 10,000 trained volunteers, 60 full-time doctors, 150 staff nurses and 200 auxiliary nurses. Each unit serves at least 60 to 75 patients under their care at any point of time and the network as a whole sees over 2,500 patients a week. The profiles of the patients vary; approximately 50 percent of the patients in the network are terminally ill and 30 percent are suffering from cancer. The remaining 20 percent are comprised of patients suffering from HIV/AIDS, chronic psychiatric conditions, and problems related to old age. Over 60 percent of the patients are below the poverty line and 55 percent are women.
The profiles of the volunteers are also diverse. They include auto-rickshaw drivers, shop owners, teachers, retired bankers, officials and farmers. Depending on their availability, some volunteers may contribute just a few hours a week, while others take up the job nearly full-time. Dr. Kumar believes that the impact of his work goes far beyond palliative care: by having volunteers work in teams they are able to develop personally—learning skills of empathy and leadership. Volunteers do not restrict their support to terminally ill patients, but provide services to all patients, such as severely disabled children in poor families.
To catalyze the spread of the idea, IPM collaborated with Malayam Manorama, the most widely circulated newspaper in Kerala, to create a joint media campaign entitled, “We Are With You.” The campaign consisted of a series of articles and news reports on palliative care and a notification of the establishment of three telephone lines for people to register as volunteers. This campaign proved so effective, that IPM received 50,000 calls in the first three weeks of the campaign. IPM conducted training sessions for those who registered. In addition, the campaign actively advocated for palliative care support from the government and COs. The movement attracted the attention of state and local politicians and eventually led to the government of Kerala creating a state-level policy on Community Based Palliative Care in 2008.
The policy establishes the government’s commitment to provide palliative care to all those in need. It also recognizes home-based palliative care as a part of the healthcare system and the need for existing healthcare institutions to develop adequate manpower to provide required medical support. The National Rural Health Mission is the main channel for the implementation of the policy and IPM is the implementing agency. Conscious of the limitations of creating a parallel system, Dr. Kumar ensures that IPM plays an important role in training and building cohesive collaboration between the communities, health care professionals in government, private institutions, and local government.
The next step for Dr. Kumar is to spread the community based care model for incurable and incommunicable diseases to other states in India and other countries. Dr. Kumar is cognizant of the fact that Kerala has a uniquely cohesive social environment that allows this kind of movement to succeed. Spreading the idea to other states in India will require the model to combat strong caste, gender and religious politics. However, Dr. Kumar believes that the issue of caring for the terminally ill has a unifying power: every individual and family, irrespective of social or religious status, has to deal with the issues of physical decline and death at some point in time. Therefore, he believes that community-based palliative care has the potential to combat differences and help nurture a new generation of changemakers.
Dr. Kumar believes that any doctor, nurse or volunteer can become a catalyst for implementing this idea in their community. He strongly believes that there is no need to wait for the entire ecosystem to exist; every single individual can start volunteering with patients and bring in more people and resources. Dr. Kumar plans to develop palliative care initiatives with partner organizations in different parts of India and abroad. He is currently establishing partnerships with organizations in Switzerland, Thailand, and Sri Lanka to pilot his idea.
Dr. Kumar and his four siblings grew up in a family of teachers in a village in the state of Kerala. Since he was a child, he remembers sitting in on meetings of the teachers’ union that his father conducted at home. Exposure to these environments drew him to a number of different political movements beginning at age of 17.
While studying at Calicut Medical College in Kerala, he became even more politically active and had a strong inclination for socialist views. As a leader in the political movement at his college, he spent time organizing students to work with grassroots groups, conducting meetings and discussions. He was also involved in organizing college strikes against the privatization of healthcare. During this time he developed the skills to organize groups and interact with the public freely. He also gained a grounded understanding of the realities of poor people’s lives.
He also became a member of Medico Friend Circle. MFC is a nationwide platform that unites social entrepreneurs, activists, practitioners, and scientists interested in public health. Interaction with this circle helped Dr. Kumar realize that health issues are not only medical problems but also create political and social problems.
Interested in psychiatry, Dr. Kumar volunteered with a psychiatry hospital his last year of college. Deeply disturbed by the cruel attitude toward the patients he witnessed, Dr. Kumar decided to improve the situation. He filed public interest litigation against the hospital, which informed the government and the public of the injustices taking place within the hospital system. As a result of his experience, he chose not to pursue a career in psychiatry.
Dr. Kumar knew he wasn’t interested in being a practicing doctor. He quit his job after only six months to start teaching, while also engaging in social work as a secretary for the People’s Union for Civil Rights in Calicut. During this time, Dr. Kumar reflected on how to make medical work more socially and politically meaningful. It was while pursuing his postgraduate degree in anesthesiology that he met Professor M.R. Rajagopal, who was exploring the issues of access to medical palliative care. The issue assumed a greater significance for Dr. Kumar when he worked as an anesthesiologist in a private clinic. There, he experienced the frustration of doctors whose patients are terminally ill, and as a result, are keen to help control pain and reduce their suffering. However, such care wasn’t possible within the existing healthcare framework.
This thinking led Dr. Kumar to co-found the Pain and Palliative Care Society in 1993 with Dr. Rajagopal. The organization initially focused on biomedical support for terminally ill patients through an inpatient clinic but by 1999, it had grown to encompass twenty-four palliative care medical centers. Despite the care being institution-based and focused on medicine, the organization had surprising success fundraising for its efforts in local communities.
In 2000 it became clear to Dr. Kumar that the social issues associated with terminal illness were more of an obstacle to providing care than the medical issues. Therefore, he realized that any comprehensive palliative care initiative had to be community-driven. Dr. Kumar knew that to spread the movement effectively, he needed to develop a world-class research, training, and advocacy institution, which could create and conduct trainings for volunteers, doctors, and nurses in palliative care. With this idea in mind, Dr. Kumar established the Institute of Palliative Medicine.