Unbearable Pain
October 28, 2009

A Way Forward

The introduction of palliative care throughout India at tertiary, secondary, and primary health facilities as well as in the community is urgently needed to prevent the gross and unnecessary suffering of millions of people throughout the country. The Indian government, as a signatory to various international human rights treaties, must play an important role in making this happen. Yet, to date, the central and state governments have, by and large, abdicated this duty, leaving it to nongovernmental organizations and individual healthcare workers to develop these health services.

To move palliative care services forward—and to live up to its obligations under international law—the Indian authorities, at both central and state levels, need to urgently formulate and implement a plan of action for developing palliative care services and overcoming the various policy, regulatory, and educational barriers described in this report.

In doing so, the authorities in India have the enormous benefit of being able to draw on local solutions. India is blessed with a considerable number of extremely knowledgeable and committed palliative care specialists who have been grappling with these barriers for more than a decade. There are best practice examples at various levels, for community-based and institution-based palliative care. A model for regulatory reform already exists. Five medical colleges are already teaching palliative care as part of undergraduate medical education, and a number of teaching hospitals have developed models for palliative care and pain management instruction at the postgraduate level.

But as long as the central and state governments fail to assume their role in developing palliative care services, progress will continue to be marginal in most places.

Refraining from Interference with and Facilitating Development of Palliative Care

At present, the Indian government and state governments violate the obligation to refrain from taking actions and enforcing policies that interfere with palliative care, and the obligation to take steps to facilitate its development. This situation can be remedied by taking the following steps:

 

 

On policy development

In order to comply with the right to health, the Indian government and state governments need to put in place relevant policies or strategic plans for the development of palliative care and to incorporate a meaningful palliative care component in the national cancer and AIDS control programs. Human Rights Watch recommends the following steps on policy development:

  • The Indian government should convene an inclusive meeting of all relevant stakeholders, including the Ministry of Health and Family Welfare, the drugs controller general, the Department of Revenue, the Medical Council of India, the narcotics commissioner, the Indian Association of Palliative Care, the Institute of Palliative Medicine, Pallium India, and other leading palliative care groups, to develop a national palliative care policy and a strategy for its implementation. The policy and strategy should address all existing barriers to the development of palliative care, including policy, regulatory, educational, and other obstacles. It should set clearly defined benchmarks and timelines for overcoming these barriers and introducing palliative care in both institutional and community settings. It should set up a system for periodic review of progress and adjustments of benchmarks, as necessary.
  • The Ministry of Health and Family Welfare should implement, to the extent possible, the recommendations made by the palliative care taskforce. If certain aspects of the recommendations are not carried out, it should publicly explain the rationale for such decisions.
  • As part of its efforts to develop palliative care services at ART and community care centers, the National AIDS Control Organization should develop clear benchmarks and timelines for providing these services, including by incorporating instruction for healthcare workers on palliative care and ensuring availability of opioids at community care centers and ART centers.
  • State governments should organize stakeholder meetings with the health department, drugs controller, excise department, directorate of medical education, healthcare providers, and palliative care specialists to develop plans of action, with concrete benchmarks and timelines, for the development of community-based palliative care services. Drawing on the experiences of Kerala and other states, these stakeholder meetings should, among others, lead to:
    • Development, adoption, and enactment of state palliative care policies;
    • An assessment of the need for palliative care and the barriers to its development;
    • Identification of funding for development of palliative care services in the community;
    • Development of a plan for the gradual incorporation of palliative care instruction into undergraduate and relevant postgraduate curricula for healthcare professionals; and
    • Introduction of the model rule for opioid availability, if not already adopted, with clear operating procedures to ensure smooth implementation.

On education

The Indian government and state governments need to set a clear standard for education in palliative care to ensure that healthcare providers—first and foremost those who see large numbers of patients in need of palliative care—have at least basic training in the discipline. Human Rights Watch makes the following recommendations on ensuring adequate education for healthcare workers:

  • The Ministry of Health and Family Welfare, the Medical Council of India, state directorates of medical education, representatives of medical colleges, and palliative care providers should jointly develop a plan of action for the gradual introduction of palliative care instruction into curricula for medical and nursing education.
  • Until this has happened, the Medical Council of India should specifically encourage medical colleges to integrate basic instruction on palliative care into the existing curriculum, as a number of medical colleges have already done.
  • The Medical Council of India should include palliative care as a topic in exams for medical licenses.
  • The Medical Council of India should mandate rotations in palliative care units for students of certain postgraduate programs, including oncology, to ensure clinical exposure to palliative care.
  • The Ministry of Health and Family Welfare should develop nodal palliative care training centers in each of India’s five geographical regional zones, as recommended by the palliative care taskforce.
  • The Ministry of Health and Family Welfare should develop training modules for doctors, nurses, social workers, counselors, and volunteers, in cooperation with the Indian Association of Palliative Care, the Institute of Palliative Medicine, Pallium India, and other relevant palliative care groups.
  • The National AIDS Control Organization should incorporate palliative care instruction into its training courses for HIV/AIDS healthcare workers.

On drug availability

To comply with its obligations under international human rights law, India must take immediate steps to ensure an effective supply and distribution system of opioid medications; avoid excessively strict drug control regulations that interfere with opioid availability; and prevent fear of legal sanction among healthcare workers. Human Rights Watch makes the following recommendation:

  • State governments that have not yet done so should immediately implement the model rule as proposed by the Department of Revenue. The role of the excise department, which has no expertise on medical or healthcare issues, in the licensing of healthcare providers for opioid medications should be eliminated all over India.
  • The Department of Revenue should issue a clarification to state governments that the model rule applies to all formulations of morphine, not just oral morphine. Drugs controllers who currently limit the application of the model rule to oral morphine should allow its application to injectable and liquid morphine as well.
  • The Department of Revenue should recommend the simplification of access to opioid medications other than morphine. Availability of and accessibility to these medications continues to be severely limited by the cumbersome procedure established under the NDPS Act. The role of the excise department should be eliminated, the licensing system simplified, and validity periods of licenses extended.
  • State governments that have not yet included oral and injectable morphine into their lists of essential medicines should take steps to do so, as recommended both by India’s central government and the World Health Organization.
  • The narcotics commissioner and Narcotics Control Bureau should ensure that India reports on morphine consumption annually, as required by the 1961 Single Convention on Narcotic Drugs.

Fear of legal sanction among healthcare workers

Human Rights Watch believes that unintentional mistakes in handling opioids should not be subject to criminal liability. We therefore recommend that

  • The NDPS Act should be amended or an exception should be introduced to clarify that section 26 does not apply to unintentional mistakes by healthcare workers.

Ensuring Integration of Palliative Care into Health Services

As noted above, palliative care remains poorly integrated into cancer and HIV/AIDS care in India. To respect its obligations under the right to health, the Indian government needs to undertake the following steps:

  • Develop a clear plan for the integration of palliative care into cancer care services and provide funding for the implementation of that plan. The April 2006 recommendations of the taskforce that the Ministry of Health and Family Welfare appointed are such a plan. The government should either implement it or, if it deems aspects of the recommendations unacceptable, should clarify what these aspects are and why, and either revise the plan accordingly itself or ask the taskforce to do so. The revised plan should then be implemented as soon as possible.
  • The government should develop a plan for the integration of palliative care services into health services for people living with HIV and AIDS, and allocate funds to implement that plan. A rational public health approach requires that as countries scale up their ART programs they should also scale up palliative care services, particularly considering that the cost of providing palliative care is very small compared to that of ART programs.
  • The Indian government and state governments should seek to invest additional funds into the development of community-based palliative care services, as the provision of palliative care in institutional settings is not sufficient to meet the needs of patients. Indeed, the World Health Organization recommends the development of community-based palliative care as an inexpensive and cost-efficient model that is particularly appropriate for low- and middle-income countries. To date, only the government of Kerala has made such investments.

Recommendations to the INCB and Donors

To the International Narcotics Control Board

  • Consistently report in its annual report on the availability of controlled substances for medical and scientific purposes in countries, including on specific barriers that impede such availability.
  • Plan a fact-finding mission to India, with availability of controlled substances for medical and scientific purposes as one area of focus. On such a mission, the INCB delegation should meet both with relevant government officials and representatives of palliative care organizations, such as the Indian Association of Palliative Care, Pallium India, and other leading palliative care groups.
  • Urge India to submit data on consumption of morphine every year, as required by the 1961 Single Convention on Narcotic Drugs.
  • Request information from the Indian government about efforts it has made to ensure adequate availability of controlled substances for medical and scientific purposes, and about remaining barriers.
  • Establish regular contact with key palliative care leaders to ensure the INCB receives information on opioid availability barriers directly from healthcare providers.

To international donors

  • Ensure that palliative care and pain management are an integral part of any programs that are funded to provide care and treatment services to people living with HIV and AIDS.
  • Require that supported healthcare institutions obtain a license for morphine and other opioid analgesics and maintain an adequate stock of these medications.
  • Financially support training of healthcare workers at ART centers and community care centers on palliative care and pain management.