Institute-Based Sustainable Palliative Care Program: A Unique Initiative of “Cancer Treatment Center Program”
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India is the second-most populous country in the world and contributes to 17% of the global population. India is aging rapidly. The elderly will constitute 10% of the population by the year 2021. People are living longer and are experiencing more comorbidities. The incidence of noncommunicable diseases is on the rise. Over a million new cancer cases were detected in 2012. The GLOBOCAN 2018 has estimated a two-fold increase in cancer burden in India. India is thus reeling under the combined onslaught of an aging population and the twin burdens of communicable and noncommunicable diseases.
The Indian health-care system, like elsewhere, is built on an acute care paradigm, and is ill equipped to deal with the onslaught of chronic life-limiting diseases. In India, about 5.4 million people a year are estimated to require palliative care services, with the highest number being the terminally ill elderly. Every year, 9.8 million people die in India, most of them with unbearable pain and suffering, of which 60% are expected to benefit from palliative care. Despite palliative care being available in India since the 1980s, and the National Program for Palliative Care being initiated in 2012, <2% of India's population have access to palliative care, with <4% having access to morphine. The efforts of nongovernmental organizations and few committed individuals have birthed many community-driven initiatives that provide flexible, cost-effective, palliative care. Specialist palliative care services have been given the required thrust with the introduction of postgraduate programs in palliative care in tertiary care centers. Yet, despite three decades of presence in the country, coverage of palliative care services remains patchy and incomplete, with some regions having better access to palliative care services than others.
Improving access to palliative care in the geopolitical milieu of India is a Herculean task. The World Health Organization has established a public health strategy to effectively integrate palliative care into the existing health-care systems. This includes four components: (a) development of appropriate governmental policies and programs, (b) improved and continued availability of essential pain medications, (c) education of health-care workers and public, and (d) implementation of palliative care services at all levels of the society. Given the socioeconomic and health-care environment in India, in addition to the existing community and specialist services, a generalist service, based in an institution, has the potential to reach a larger population. Incorporating palliative care services into the various public as well as private sector medical colleges and research institutions can cater to this need. The Cancer Treatment Centre (CTC) program was initiated with this objective in mind.
The Lien Foundation in partnership with the Asia Pacific Hospice and Palliative Care Network created the Lien Collaborative for Palliative Care in 2012. The objective of this collaborative was to create capacity for palliative care in low- and middle-income countries by training personnel from various government hospitals and facilitating the availability of essential pain medications within these countries. After a successful run in Sir Lanka, Bangladesh, and Myanmar, the collaborative extended its activities into India in collaboration with the All India Institute of Medical Sciences, Delhi. When this initiative was conceived in 2016 (CTC1), an ambitious aim was put forward, to bring palliative care services and oral morphine to 100 of the 327 CTCs in India in accordance with the National Programme for Palliative Care of the Government of India (2012). This project capitalizes on the availability of a core team of experienced palliative care experts within India, supported by international resource persons, who serve as volunteer faculty, to speed up the creation of palliative services nationally. A 14-month pilot program was started in July 2016 and involved ten CTCs in six states, with year-long mentoring by the resource persons and mentors. An end-of-the-project audit of the CTC1 centers showed the establishment of palliative care services in five of the ten CTCs, with availability of morphine in these centers. A second enhanced CTC2 program was initiated in January 2018 involving nine CTCs from seven states. Incorporating the lessons learned from the CTC1, the second program had a more standardized and structured format. This systematic approach helped in lowering dropouts and aided in establishing palliative care services in eight of the nine sites. Currently, 13 sites from seven states are participating in the third program, CTC3. The success of the program lay in identifying dedicated care providers (two doctors and two nurses) from institutes and enabling them to integrate palliative care services in the continuum of care, thereby improving patient care. To ensure organizational support and opportunity to the team members to develop palliative care services, a written commitment was sought from the head of the selected institution and administration. In addition to the above, one of the objectives of this program was to create centers of excellence in each state so as to provide teaching and training to district hospital and primary health-care centers of respective states.
One of the main objectives of the National Program for Prevention and Control of Noncommunicable diseases such as cancer, cardiovascular diseases, diabetes, and stroke is to establish and develop capacity for palliative care. For complete integration of palliative care into the health system and for patients to access them, services have to be sustainable; supply of medications should be uninterrupted; and support from hospitals, community, and government is essential. The CTC program is unique in that it focuses on these outcomes and empowers institutions to initiate and provide sustainable palliative care services in the institutions and helps in identifying and empowering palliative care champions who can then teach and train medical personnel at the various district and primary health-care centers, thereby increasing accessibility to palliative care and pain relief.
This project is funded by Lien Collaborative and conducted in collaboration with Asia Pacific Hospice Network.