IAHPC Regional Report
Palliative Care in India and Government Action
Economically, the last decade appears to have been good for India. The gross domestic product (GDP) grew at an average rate of 6.4 per cent per year. The population growth slowed for the first time in decades. Literacy rose from 52 to 65 per cent during the 1990s. Between 1993 and 1999, at least 90 million Indians rose out of poverty and the poverty ratio declined from 36 to 27 per cent.
Unfortunately, the economic progress does not seem to have been matched on the health front. India continues to be among the top ten for almost any communicable disease, and remains the world leader in diabetes, hypertension and coronary artery disease2. This paradoxical situation is explained by the low priority given to health by India’s planners. The World Health Organization (WHO) recommends that 5% of any nation’s spending should be on health. India’s national health policy mentions 3%, but the reality seems to be different. In India’s national budget for 2008-09, the proposed spending on health remains at about 1%. It appears that the planners have forgotten the ancient adage, “Health is wealth”.
This backwardness in planning health policy results in needless suffering associated with any disease. At first look, it might appear that lack of resources is the main reason for this. But this seems to be only partially true. The country does indeed have the latest in medical technology, though most of the time it is available only to the affluent. The lower middle class and the poor have no access to effective government-sponsored health care or to any health insurance scheme. When patients can afford it, or in the uncommon event that they receive free treatment because they are poor, what is available to them is only high-tech investigations or curative treatment modalities. For example, the patient with cancer may get expensive surgery, radiotherapy and chemotherapy, but if he is in pain, he will have no access to oral morphine. In the absence of reliable statistics, we can only make guesstimates, but going by the quantity of morphine that leaves the government’s Opium and Alkaloid Factories (the only source of legal morphine in the country), less than 0.4% of the needy have had access to it3. Current efforts in palliative care need to be viewed against this grey backdrop.
One of the most promising developments in the last three years is the growing, and significant, involvement by the government in palliative care delivery. Though the government of India has, since the 1980s accepted that pain relief and palliative care should be essential features of cancer care, this has not resulted in pragmatic action. In 2006, the government for the first time invited palliative care specialists to be part of a task force to formulate strategy for palliative care as a part of the country’s national cancer control program (NCCP). Whether the task force’s recommendations will be taken up and acted upon is yet to be seen. However, this is a positive development.
On the policy front, the state of Kerala has taken positive steps. On the 15th of April, 2008, it became the first state government in India to declare a palliative care policy. This came about as a culmination of a decade of advocacy by the palliative care community and because of actions by the government following a proposal submitted to it by the NGO “Pallium India” in November 1995. In response to the proposal, the government of Kerala authorized a committee comprised of the stakeholders in the palliative care scene to formulate a strategy document. The committee’s recommendations were largely accepted by the government in formulating the policy.
As envisaged by the policy of the Kerala State Government, its health care delivery system would incorporate palliative care delivery. This would be done with the involvement of community based organizations (CBOs) and local self-government organizations (LSGOs). In its short term action plan, the policy envisages:
- Establishment of palliative care services in government medical college/ district hospitals in the state;
- Development of 100 new community based palliative care programs in the state and training of 300 volunteers in each district;
- Availability of essential palliative care drugs including oral morphine and other opioids in all such palliative care centers and appropriate modifications to the standard operating procedures for the same;
- Training of health care professionals in the government sector (sensitisation programs for 25% of all health care professionals, 10 day foundation courses in palliative care for 150 doctors and 150 nurses and 4 - 6 weeks’ certificate courses for 50 doctors and 50 nurses);
- Formation of common platforms for coordination of palliative care activities in at least 25% of local self-government institutions in the state;
- Integration of palliative care services into field visits by health inspectors and junior public health nurses;
- Incorporation of palliative care in medical, dental, nursing, pharmacy and paramedical courses;
- Development of four more palliative care training centers in the state;
- Sensitisation programs in palliative care for officials and elected members of local self-government institutions; and
- Evaluation and review of strategy at the end of a two year period.
Thanks to the keen involvement of many committed officials and thanks to the political leadership, the government of Kerala is moving fast with the implementation of the policy.
Two questions arise out of this. First, will such a step dangerously compromise the quality of care delivered to the patient? Will the government-run palliative care program really have the patient-centered approach of NGOs? Will the expansion program with tight deadlines result in creation of palliative care programs that do not have the commitment or expertise to do good for patients and families? This is indeed a concern. It is hoped that the proposed collaboration between government agencies and NGOs will help to maintain some minimum standards of care.
Second, what would be the relevance of the Kerala policy on the national scene? Can the central government create a national palliative care policy based on the Kerala document? And can other state governments follow suit? The answer might be yes and no. The framework could be used as a guide; and this is indeed an advantage. But it would be a mistake to apply the same strategy to the whole country. After all, Kerala is a tiny state covering only 1% of the geographical area of India. It has a high literacy rate, which facilitates community involvement. It also has the foundation of 15 years of community-based palliative care activity in the state, especially with the leadership given by the Pain and Palliative Care Society (PPCS), a WHO demonstration center. We cannot expect the same strategy to work all over India, especially in those areas where the community’s involvement may be more difficult to achieve and where palliative care is still an unknown entity.
Given the diversity in India, each state will need to develop its own policy that suits its needs and its social and cultural background. And the central government will have to develop a policy which would provide guidelines for general application and provide an umbrella of support, especially in matters relating to opioid availability and education.
The social and economic progress in India in the last decade gives new hope for the future. If the health front has not kept pace with the general growth, health care activists need to ask themselves whether they have been active enough to guide the political and executive leadership in the right direction. Perhaps the palliative care community could be effective in changing the mindset both among professionals and administrators. Maybe we will lead them to the realization that medical technology, in its quest to conquer disease, has the potential to destroy the patient and family socially and emotionally. Maybe we will be able to demonstrate to them that the right combination of technology and humane care can truly result in physical and psychosocial well being. Maybe we will be able to persuade them not to reject the WHO definition of health4 as an impractical dream. Maybe that will lead to a tomorrow in which the planners will give due importance to health care, and in which health care delivery will incorporate the application of the principles of palliative care.
References:
- Gurcharan Das. Indian Paradoxes. Times of India. 3 June 2008.
- Thomas G; Srinivasan S. Budget 2008 and health care: less of the same? Ind. J. Med. Ethics: 2008 V:2.
- Rajagopal MR, Joranson DE. Opioid availability in India – an update. J Pain Symptom Manage. 2007; 33(5):615-22.
- Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference, New York, 19-22 June, 1946. Official Records of the World Health Organization 1946, no. 2, p. 100.
M.R.Rajagopal MD
Professor of Pain and Palliative Medicine, SUT Academy of Medical Sciences
Chairman, Pallium India and IAHPC Board Member
PJRRA 65, Pothujanam Road, Kumarapuram
Thiruvananthapuram 695011, Kerala, India.
www.palliumindia.org
Email this page to a friend!
Top of Page |
