Research

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 unethical to conduct research with those at the end of life. [1]

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. One study describes ‘compassion’ and ‘vigilance’ as themes when investigating strategies that researchers have employed to manage ethical concerns in end-of-life research. [2]

Ethical concerns surrounding research with vulnerable populations include issues of consent; the resources and literature listed here may be of help.

  1. Wohleber AM, McKitrick DS, Davis SE. Designing research with hospice and palliative care populations. Am J Hosp Palliat Care. 2012 Aug;29(5):335-45. Epub 2011 Nov 21.
  2. Hickman SE, Cartwright JC, Nelson CA, Knafl K. Compassion and vigilance: investigators' strategies to manage ethical concerns in palliative and end-of-life research. J Palliat Med. 2012 Aug;15(8):880-9. Epub 2012 Jun 25.

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Relevant Studies

Websites

  • 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
  • The European Association for Palliative Care has Research documents available on their website.

Guidelines / Documents / Factsheets


Last updated 15 February 2017