Palliative Care and Human Rights

Diederik Lohman

The Rights-Based Approach to Palliative Care

• Palliative care is not just a question of good medical or public health practice.

• It is a right for patients with a need.

• It is an obligation for the government to take reasonable steps to provide the care needed or facilitate its availability.

• Based on the right to health (Article 12 International Covenant on Economic, Social and Cultural Rights) and prohibition of inhuman and degrading treatment (Article 7 of the International Covenant on Civil and Political Rights)

Violation of Right to Palliative Care

• There is significant patient suffering (from physical pain or other symptoms)

• There is a feasible remedy

• The remedy is not available to the patient

• There is no legitimate justification for the lack of remedy

The Case of Pillai

• Male patient around 30 years old• Truck driver• Lives in Trivandrum, Kerala• HIV+, on ART• Successfully treated for pulmonary TB in 2006• Develops severe pain in 2007

The Case of Pillai 2

• Doctor diagnoses him with extrapulmonary TB of the spine and initiates TB

• Prescribes ibuprofen for pain• Patient experiences no relief• After new complaint of pain, TB doctor says

that he has a “serious illness and the pain won’t just go away.”

• AIDS doctor tells patient that the pain will go away once the TB is cured

The Case of Pillai 3

• Pain subsides only after 6 months of treatment• Patient describes pain as follows:

I had pain in my back and both legs. My legs twisted into an abnormal position. My legs would turn inside and my toes up. It was a pricking pain that was excruciating. I could not sleep as the pain was particularly bad at night.

Some observations

• TB and AIDS doctors manage complex diseases• Doctor with basic palliative care skills could

almost certainly have provided significant relief.

• One of India’s most experienced palliative care doctors lives in the same town but patient was never referred.

Doctors’ Role

• Question primarily of medical ethics

• Did doctors do enough to try to provide relief?

• Why didn’t they look at possibility of referral?

Government’s Role

• HRW research focuses on role of governments as parties to human rights treaties

• Examine policy barriers to adequate availability of palliative care

• Three key areas of barriers: Health policy, education of healthcare workers, drug availability

Health Policy

• In disease control strategies, focus often on prevention and treatment; palliative care neglected

• Lack of structural approach to palliative care

• No treatment protocols or referral mechanisms

Lack of Training

• Palliative care not included in medical school curricula, post graduation programs, rotations, CME

• Doctors do not know how to treat pain and other symptoms

A doctor at a large AIDS hospital in India told us:

Every second or third patient complains of neurological pain. But I was never taught how to treat pain. I know how to treat fever, not pain. So we focus on the cause of the pain and trying to treat that.

Drug Availability

• Drug availability enormous problem for controlled medications like morphine:– Poor supply and distribution systems– Regulatory frameworks that restrict ability of

healthcare providers to stock and prescribe morphine

– Severe penalties for mishandling opioid medications

Right to Palliative Care

• It is an obligation for the government to take reasonable steps to provide the care needed or facilitate its availability.

• Violation when there is no legitimate justification for the lack of remedy.