Palliative care research is helping to identify best practice for the care of the dying. Palliative care patients have long been considered a vulnerable population, and for many years it was considered inappropriate to conduct research with those at the end of life. 

In more recent years it has been reasoned that facilitating participation in research has allowed these patients to continue to have a ‘voice’, and to contribute to the care of those that will follow. However, not everyone takes this view. Some family members feel that they should protect patients from distress or further burden by not allowing them to participate in research. Some health professionals hesitate to propose them as a potential research subject. Talking through the benefits of research (and the ability to withdraw at any time) to those who are ‘protecting’ them may help to alleviate their concerns.

Ethical issues surrounding research with vulnerable populations have included such concepts as consent, and there are resources and literature here that may be of help.

Resources

• The National Health & Medical Research Council (NH&MRC) has information on:
  • National Statement on Ethical Conduct in Human Research (2007)
  • Making Decisions about Tests and Treatments: Principles for better communication 
  • General Guidelines for Medical Practitioners on Providing Information to Patients
  • Challenging Ethical Issues in Contemporary Research on Human Beings
• End of Life / Palliative Education Resource Centre (EPERC) Fast Facts
  • Informed consent in palliative care part 1
  • Informed consent in palliative care part 2
• Masso M, Dodds S, Filders D et al, Ethical Research in Palliative Care: a guide through the Human Research Ethics Committee process, Centre for Health Service Development, University of Wollongong, 2004
• The International Association of Hospice and Palliative care IAHPC Manual of Palliative Care 2nd Edition has a section on Ethical Issues.
• The Center for Bioethics, University of Minnesota (US) has a document: End of Life Care: An Ethical Overview
• The Southern Cross Bioethics Institute website provides access to information on bioethical legislation in Australia,much of which is relevant to palliative care. It can be different in each State and Territory, such as the Consent to Medical Treatment and Palliative Care Act 1995 (SA) and the Medical Treatment Act 1994 (ACT).
• Consumer information on Human Research Ethics Committees can be found from the Better Health Channel
• Information on Improving patient information and decision making is available from the Consumer Health Forum
• The Jean Hailes Foundation for Women’s Health has information on Making Informed Decisions including information about clinical trials and research.
• The European Association for Palliative Care has Clinical and Research documents available on their website.

Related CareSearch Pages

Nurses Hub
Communication
Advanced Care Planning
Working with Families

Research
Conducting research in Palliative Care
Ethics

CareSearch Review Collection
Research

Free Full Text Articles

Jubb AM. Palliative care research: trading ethics for an evidence base. J Med Ethics. 2002 Dec;28(6):342-6.

References

• Casarett D, Knebel A, Helmers K. Ethical challenges of palliative care research. J Pain Sympt Manage. 2003 Apr;25(4):S3-5.
• Reid J. Conducting qualitative research with advanced cancer patients and their families :ethical considerations. Int J Palliat Nurs. 2009 Jan;15(1):30-3.
• Chapple A. Interviewing people with terminal illness: practical and ethical issues. Nurse Res. 2006;14(1):50-8.
• Dean RA. McClement SE. Palliative care research: methodological and ethical challenges. Int J Palliat Nurs. 2002 Aug;8(8):376-80.
• Gysels M, Shipman C, Higginson IJ. Is the qualitative research interview an acceptable medium for research with palliative care patients and carers? BMC Med Ethics. 2008 Apr 24;9:7.

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This page was created on 27 August 2010
Last updated 27 August 2010*