Ethical issues in palliative care for patients with M/XDR-TB Geneva, 19 November 2010

1. Ethical issues in palliative care for patients with M/XDR-TB Geneva, 19 November 2010 Palliative Care and M/XDR-TB meeting Andreas Reis Department of Ethics, Equity, Trade and Human Rights

2. Relevance of the topic? in palliative care

3. Ethical issues related to palliative care • Justice • Autonomy • Professional responsibilities • Cultural issues • Issues for further discussion

4. Equitable Access to palliative care • Inequities of access between countries • Legal barriers • Lack of resources • Inequities of access within countries • Socioeconomic factors • Stigma and discrimination • address the needs of specific populations to the extent they represent barriers to care: • e.g. HIV/TB treatment within IDU population: stigma, clinical management; • children: misunderstandings regarding how children experience pain

5. Patient autonomy Obtaining Valid Informed Consent: the role of patients & family in decision-making • Need to establish a real possibility for the patient to participate in the decision making process, including the opportunity to modify his/her decision: • Adequate information given to patients • Possibility (time) to interact with health team • Families to be included where appropriate – culture-dependent • Need to establish special mechanisms for: • Evaluating the patient's autonomy to express his/her choice • Incompetent patients (e.g. children, persons with mental impairments) • Limits of autonomy? • potential risks to care-givers and community • shortening of life

6. Professional Obligations • Patients have a right to sufficient pain control, and health care workers have a professional duty to provide care, including palliative care • Health professionals have to be trained to: • Evaluate the patient's autonomy • Inform patients about treatment options and corresponding consequences in terms of risks and benefits • Use pain medication and other palliative treatments appropriately. • Be sensitive to cultural aspects.

7. Cultural issues and barriers • Barriers in implementing palliative care can exist at the level of the patient, the family, the community, the health professional, national regulation • Barriers in part stem from the diversity of ways of understanding fundamental concepts: e.g. dignity, individual rights, quality of life, harmony, etc. (in some cultural contexts suffering can "make sense") • Language barriers: expression and quantification of pain (cultural and psychological barriers), possibility to address the idea of death • Modalities for implementation of palliative care: home care/hospital, compatibility with religious or communitarian customs • So: Training has to address not only the lack of knowledge but also complexity of social and cultural issues

8. Further issues for discussion - Potentially life-shortening interventions • Goal of actions: pain control/termination of life - Life sustaining interventions: futility of treatment - Assisted suicide

9. Thank you very much! Contact: reisa@who.int