Sue Duke Consultant Practitioner/Senior Lecturer, University of Southampton UK Helen Bennett

1. Palliative Care in Africa: - Making it real 19th – 21st September 2007

2. The practice of palliative care research: emergent ethical issues identified from a narrative and systematic literature review Sue Duke Consultant Practitioner/Senior Lecturer, University of Southampton UK Helen Bennett Care Manager, Naomi House Children’s Hospice Winchester UK Palliative Care in Africa: - Making it real 19th – 21st September 2007

3. Aims • What debates are raised in the literature with respect to the ethics inherent in palliative care research with ill adults? • What conclusions can be drawn from the literature to guide ethically sensitive research in palliative care?

4. Method • Narrative, systematic review of the literature • Objective - robust, transparent and coherent process • Captured literature beyond research studies • Valued and respected the complexities of research practice • 533 papers were identified • 51 were reviewed

5. Database searches = 341 Hand and focused internet searches = 284 After duplications removed n = 92 Met inclusion criteria = 55 Excluded = 37 Papers reviewed and critically assessed n = 55 Included after review and critical assessment = 51 Excluded after critical review and assessment = 4

6. Findings • Debates raised were predominately concerned with ‘naming the problem’ and using principle based ethics as a basis for discussion • Knowledge drawn on to support debate rarely underpinned by ethical or philosophical theory • Emerging contemporary debate about how to enhance the importance of the quality of research practice (research governance issues)

7. People with palliative care needs are vulnerable and this makes palliative care research is a ‘special case’ ‘no research is morally justifiable in this client group’ (p298) de Raeve L (1994) Ethical issues in palliative care research Palliative Medicine 8, 298-305

8. Palliative care research is not, a ‘special case’, research is possible if sensitively designed • Patients still have decision making capacity • Ethical principles can still be applied to palliative care research • Benefit to participants in process of ‘telling their story’ • Need for practitioners to understand patient experience Addington- Hall (2002, 2005); Agrawl (2003); Barnet (2001); Beaver et al (1999); Cassarett (2003); Casserett and Helmers (2003); Casarett and Karlawish (2000); Kristjanson et al (1994)

9. Not undertaking research is more harmful than not undertaking research • Designed carefully • Conducted sensitively Arraf et al (2004); Casarett (2005); Wilkie (1997)

10. Particular issues are raised by palliative care research: access, institutional, professional and family gate-keeping • Energy depletion, attrition, emotional burden • Practitioner perceptions of research (gatekeeping access) Dean and McClement (2002); Ewing et al (2004); Hudson et al (2005), Karlawish (2003); Koenig et al (2003); Seymour and Ingleton (1999); Seymour et al (2005); Stevens et al (2003)

11. Constraints in palliative care research are less to do with ethical and methodological concerns and more to do with financial and external review issues Fine (2003); Lee and Kristjanson (2002); Stevens et al (2003); Hudson (2003); Kristjanson et al (1994), Phipps et al (2005); Stevens et al (2003); Williams et al (2006)

12. These issues do not exempt research from being rigorous Rees (2001)

13. Consent may change as focus of study changes • Consent – need to consider process, continual and advanced consent and how consent might be influenced as a study focus changes Lawton (2001)

14. Researcher’s perceptions and values influence the degree to which an individual’s right to self-determination is upheld • Kristjanson et al (1994)

15. Emerging debates Addington-Hall J (2002) Research sensitivities to palliative care patients European Journal of Cancer Care 11(3), 220-224 Clark D, Ingleton C and Seymour J (2000) Support and supervision in palliative care research Palliative Medicine 14(5), 441-446 Seymour J and Skilbeck J (2002) Ethical considerations in researching user views European Journal of Cancer Care 11(3), 215-219 Seymour J, Payne S, Reid D, Sargeant A, Skilbeck J and Smith P (2005) Ethical and methodological issues in palliative care studies Journal of Research in Nursing 10(2), 169-188 Hopkinson J, Wright D and Corner J (2005) Seeking new methodology for palliative care research: challenging assumptions about studying people who are approaching the end of life Palliative Medicine 19(7), 532-537.

16. Emerging debates • Ethical decisions are not confined to research design but permeate the conduct, analysis and reporting of research • Skill of the researcher is important in ensuring ethical conduct and study coherence and the quality of the research outcome • Research practice requires the ability to act reflexively with complicated sets of issues and values • Supervision and support for researchers is as important as available support and counselling for participants • Ethical conduct of research requires integration of principle ethics (justice and rights) with respect care and responsibility, voice, authenticity and standpoint

17. Ethically sensitive research in palliative care is possible but… • needs to be considered in both the design of the research and the process of conducting research Julia Addington-Hall

18. Ethically sensitive research in palliative care is possible but… depends on : • the skill of the researcher • the skill of their practice • the situated decisions they take on a day-to-day basis • and the relationships they develop with patients, families and health care professionals. Jane Hopkinson

19. Ethically sensitive research in palliative care is possible but… • researching people’s experiences can be emotionally draining and have an emotional impact on the researcher • It is important to practice safely by ensuring researchers have adequate support and supervision Jessica Corner

20. Conclusions • The ethical process of research is about articulating perplexity • There is no abstract set of principles that point to what decisions need to be made or what actions have to be taken • Research is as much about values as it is about method and outcome • Integration of a principled approach with the morality embedded in responsiveness to other people captures voice, and guides ethically sensitive research that acknowledges a person’s autonomy and best interests.