Palliative Care and Human Rights

1. Palliative Care and Human Rights Diederik Lohman

2. 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)

3. 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

4. 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

5. 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

6. 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.

7. 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.

8. 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?

9. 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

10. 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

11. 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

12. 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.

13. 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

14. 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.