Example 2: Petitioning the State Human Rights Commission for Access to Palliative Care in India
Project Type: Advocacy
Pain and Palliative Care Society
Medical College, Calicut, Kerala, India
Institute of Palliative Medicine Calicut
Medical College, Calicut, Kerala, India
Web: www.instituteofpalliativemedicine.org Located in Kerala, India, the Institute of Palliative Medicine, Calicut (IPM), is the first World Health Organization Collaborating Center (WHOCC) in the developing world and the fifth WHOCC in Palliative Care in the world overall. The IPM is the leading training institution for palliative care in Asia.
In India, medical professionals do not receive training in palliative care as part of their medical education. Also, India has no palliative care policy and most states continue to implement strict drug control laws even on medicines with palliative care purposes. Terminally ill patients in Kerala could not obtain needed palliative care from trained professionals or pain relief medication.
“The detection of cancer in a parent is a calamity for the children, spouse and affected parent. During the last days of our mother’s life, we alternately watched her for signs of pain, keeping an eye on the amount of (weaker) painkillers in hand. We spent a fortune in time and money on meeting Government officials—we knocked on the door of every Government official concerned with narcotic control. We were surprised to find that the officials were sympathetic to our case; clerks and officers who are labeled as bureaucratic, were courteous and kind. We received tons of sympathy, but not a milligram of morphine.” –Ghooi RB. “A mother in pain”. The Lancet 1998; 352;1625.
A cancer patient and the Director of the Institute of Palliative Medicine petitioned the State Human Rights Commission for the provision of palliative care in government hospitals in the State of Kerala.
Results and Lessons Learned
The Human Rights Commission issued its recommendations in 2006, giving the Government 30 days to produce an action-taken report. The recommendations declared palliative care as part of the right to life guaranteed under Article 21 of the Constitution. To this end, the Human Rights Commission directed the government to make palliative care a compulsory part of medical education and practice by, among other things:
- taking steps to include palliative medicine in the curriculum of nursing and undergraduate medical students;
- providing training in palliative care to medical staff in government and private hospitals;
- setting up a pain and palliative care hospital in every district; and
- providing enough medicines for relieving pain.
The recommendations also include substantive guidelines for palliative care training, stating that training should inform medical professionals on (i) communication, (ii) legal decision making, (iii) pain in cancer patients, (iv) medical complications in patients with terminal illness, (v) psychiatric and neuro problems of patients with terminal illness, and (vi) spiritual support to terminal patients with terminal illness.
The Government took several steps to develop the palliative care program in Kerala. First, it adopted a Palliative Care Policy (2008). The policy outlines the Government’s commitment to palliative care, proposed a new law to ensure availability of palliative care medicines, and established the guidelines on palliative care education for health care professionals.
Second, the Government amended the Kerala Narcotic Drugs and Psychotropic Substances Rules (1985) in 2009. This modified the laws on procuring and dispensing morphine, and simplified the process of licensing for health care centers. With the amendment of this law, morphine became more available and shortages were no longer a problem. The Government also issued a brochure on the Standard Operating Procedures (SOP) involved in applying for licensing, and how to procure and dispense morphine (available at www.instituteofpalliativemedicine.org/sop.pdf).
The palliative care program in Kerala has become a model for palliative care initiatives in developing countries. Today, there are more than 200 community based organizations that provide palliative care services and more than 300 government initiatives. In addition to strong high-level policy guidance, a community level organization called the Neighbourhood Network in Palliative Care (NNPC) was created in 2001. NNPC is instrumental to the palliative care success in Kerala through its provision of thousands of palliative care volunteers, who are supported by medical professionals.
Human Rights Commission Decision
Economist Intelligence Unit, Ranking end-of-life care around the world (highlighting Kerala’s program on pg 24-25). http://graphics.eiu.com/upload/QOD_main_final_edition_Jul12_toprint.pdf