1. Swiss Re – Pandemic Risk Talk Ethical issues in palliative care for patients with M/XDR-TB Geneva, 19 November 2010 Palliative Care and M/XDR-TB meeting 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. Palliative Care and M/XDR-TB Geneva, 19 November 2010 Relevance of the topic? in palliative care

3. Palliative Care and M/XDR-TB Geneva, 19 November 2010 Ethical issues related to palliative care Justice Autonomy Professional responsibilities Cultural issues Issues for further discussion

4. Palliative Care and M/XDR-TB Geneva, 19 November 2010 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. Palliative Care and M/XDR-TB Geneva, 19 November 2010 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 Patient autonomy Obtaining Valid Informed Consent: the role of patients & family in decision-making

6. Palliative Care and M/XDR-TB Geneva, 19 November 2010 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. Palliative Care and M/XDR-TB Geneva, 19 November 2010 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. Palliative Care and M/XDR-TB Geneva, 19 November 2010 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. Palliative Care and M/XDR-TB Geneva, 19 November 2010 Thank you very much! Contact: reisa@who.int