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What are some examples of effective human rights programming in the area of palliative care?

• Introduction
• Rights-based programming
• Example 1: Petitioning the state human rights commission for access to palliative care in India
• Example 2: Litigation to ensure access to morphine in India
• Example 3: Regulatory reform in Romania
• Example 4: Integration of patients’ rights standards in hospice accreditation in South Africa
  

Introduction

In this section, you are presented with four examples of effective activities in the area of palliative care and human rights. These are:

1. Petitioning the State Human Rights Commission for access to palliative care in India
2. Litigation to ensure access to morphine in India
3. Regulatory reform in Romania
4. Integration of patients’ rights standards in hospice accreditation in South Africa

Rights-based programming

As you review each activity, ask yourself whether it incorporates the five elements of “rights-based” programming:

• Participation
  Does the activity  include participation by affected communities, civil society, marginalized groups, and others?  Is it situated in close proximity to its intended beneficiaries?
• Accountability
  Does the activity identify both the entitlements of claim-holders and the obligations of duty-holders?  Does it create mechanisms of accountability for violations of rights?
• Non-discrimination
  Does the activity identify who is most vulnerable, and how?  Does it pay particular attention to the needs of vulnerable groups such as women, minorities, indigenous peoples, and prisoners?
• Empowerment
  Does the activity give its beneficiaries the power, capability, capacity, and access to bring about a change in their own lives?  Does it place them at the center of the process rather than treating them as objects of charity?
• Linkage to rights
  Does the activity define its objectives in terms of legally enforceable rights, with links to international, regional, and national laws?  Does it address the full range of civil, political, economic, social, and cultural rights?

Finally, ask yourself whether the activity might be replicated in your country:

• Does such a project already exist in your country?
• If not, should it be created?  If so, does it need to be expanded?
• What steps need to be taken to replicate this project?
• What barriers need to be overcome to ensure its successful replication?

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Example 1: Petitioning the state human rights commission for access to palliative care in India

Project type
Human Rights Commission Petition

Health and human rights issue
In India, training in palliative care was not included in the education of medical staff, and patients in certain districts could not obtain needed care and pain relief medication.

Actions taken
A cancer patient and the director of the Institute of Palliative Medicine, of the Kozhikode Government Medical College, petitioned the State Human Rights Commission for the provision of palliative care in government hospitals.

Results
In 2006, the Commission directed the government to:

• Take steps to include palliative medicine in the curriculum of nursing and undergraduate medical students  
• Give training in palliative care to medical staff in government and private hospitals
• Set up a pain and palliative-care hospital in every district.
• Provide enough medicines for relieving pain.

The Commission ordered an action-taken report from the government within 30 days.

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Example 2: Litigation to ensure access to morphine in India

Project type
Litigation

Health and human rights issue
In 1985, the Narcotic Drugs and Psychotropic Substances Act instituted strict controls on the distribution of morphine in India. This had tremendous impact on the use of morphine for medical purposes. Supplies of medical morphine dwindled from over 750 kilograms per year in 1985 to only 56 kilograms in 1996. Thus, while India was the major exporter of opium to the world, patients with severe pain did not have access to morphine. Moreover, a whole generation of doctors graduated without experience in its use and unaware of its potential in treating patients.

Actions taken

• Dr. Ravindra Ghooi filed a public interest litigation in the Delhi High Court on behalf of cancer patients in the country, requesting the rationalization of procedures for the supply of morphine for medical purposes.
• Dr. Ghooi filed suit after the death of his mother. His mother had breast cancer, but due to a previous history of diabetes and a stroke, she was not a candidate for aggressive cancer therapy. Nonetheless, she suffered from significant pain. Her physicians were not able to obtain even 1 mg of morphine for her treatment. Dr. Ghooi himself went through an enormous amount of bureaucratic red tape and spent his time and money meeting with government officials, but was ultimately unsuccessful.

• In 1998, the High Court affirmed, “It is a right of patients to receive any medication they need, particularly morphine.” 
• The Court then directed the state government to speedily attend to morphine requests and to pending hospital applications for morphine licenses. It further encouraged patients to approach the court if unsatisfied.
• This court case worked in tandem with other advocacy efforts to increase access to palliative care medications.  In 1993, the Pain and Palliative Care Society formed to develop community-based palliative care provision in India, and over the next seven years, the Society helped established twenty outreach palliative care programs throughout Kerala.  By 2002, eight of the twenty-eight states in India amended their rules governing access to morphine.

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Example 3: Regulatory reform in Romania

Project type
Law reform

Health and human rights issue
Romania’s drug-control policies were more than 35 years old and imposed an antiquated regulatory system on pain medication based on inpatient, post-surgical management of acute pain. This restricted prescription authority, making access to opioid treatment difficult for patients with severe chronic pain due to cancer or AIDS.

• In 2002, a Romanian team composed of health care professionals working on cancer, HIV AND AIDS, pain, and palliative care and representatives from narcotic authorities and the ministries of health, social welfare, and insurance attended an IPCI workshop on ensuring the availability of opioid analgesics for palliative care.
• The Romanian team returned home and advocated for the creation of a national commission to reform Romania’s opioid control policies.
• To convince regulators that a change in opioid law was needed, one argument the team used was to point to Romania’s patient rights law, which stated, “The patient has the right to palliative care in order to die in dignity.” (24/2003, Cap VI, art. 31).
• The Ministry of Health agreed to the formation of a Palliative Care Commission (PCC) to study the matter.
• Finding that Romania’s opioid control policies fell short of WHO guidelines, the PCC invited the Pain & Policy Studies Group from the University of Wisconsin to collaborate in the preparation of recommendations.

• Based on the resulting report, the Ministry of Health drafted legislation to replace the old narcotics law. Parliament passed this into law in 2005. The Pain and Policy Studies Group then worked with the Ministry of Health on implementing regulations.
• Under the new law, special authorization is no longer necessary to prescribe opioids for outpatients, non-specialists can prescribe after receiving certified training, and there is no dosage limitation.
• Romania is currently conducting a country-wide effort to educate healthcare professionals in the use of opioid analgesics.

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Example 4: Integration of patients’ rights standards in hospice accreditation in South Africa

Project type
Development of patient care standards

Health and human rights
Founded in 1988, the Hospice and Palliative Care Association of South Africa (HPCA) is a professional membership organization for hospice and palliative care organizations. One of its core missions is to ensure professional palliative care services and to guarantee a high standard of care to patients and their families. HPCA thus wished to develop accrediting standards and procedures for hospices in South Africa. Patient rights are central to HPCA’s philosophy—providers view themselves as advocates for their patients—and would thus have to figure prominently in criteria developed.

• In 1994, a HPCA Standards Committee was created to work with the Council for Health Services Accreditation of South Africa (Cohsasa), the accrediting body for facilities in compliance with health professional standards, to formulate comprehensive palliative care standards for hospices.
• The Committee developed standards covering 13 key areas with patient rights as one of them. Patient rights language is further embedded throughout.
• A chapter on patient rights addresses processes to: identify, protect, and promote patient rights; inform patients of their rights; include the patient and the patient’s family, when appropriate, in decisions about the patient’s care; obtain informed consent; educate staff about patients’ rights; and guide the organization’s ethical framework.

• In 2005, the HPCA/Cohsasa standards for hospice accreditation were published and recognised by the International Society for Quality in Health Care Incorporated (ISQua).
• Eleven South African hospices were granted full Cohsasa accreditation in 2006, and another 26 should be fully accredited in 2007.

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