Ethics in Palliative Care Research: Navigating the Complexities

Dr Yakubu Salifu is a lecturer in Palliative Care at the International Observatory on End of Life Care at Lancaster University, and a member of the QNI Community Nursing Research Forum. Yakubu had years of experience as a nurse, then nurse-academic, before switching completely to academia. He also teaches on the Ethics in Biomedicine Module at Lancaster, and is a member of the Faculty of Health and Medicine Ethics Review Committee. Beyond academia, he works as pro bono CEO of COMPASS-Ghana, a palliative care charitable organisation registered both in the UK and Ghana.

In this blog, he describes the importance, and some of the complexities, of palliative care research.

Palliative care research is essential for enhancing the quality of life for patients with life-limiting illnesses and their families. Given the vulnerability of these populations, ethical considerations in palliative care research are paramount. Researchers must balance the pursuit of knowledge with the moral obligations to protect, respect, and conduct the research in an ethical manner¹. Ethics is a vast field, and the ethical process and governance may differ from country to country. This blog highlights some key areas on how to navigate the ethical challenges in palliative care research particularly for community-based early career researcher. Some key ethical principles and challenges to consider:

• Cultural sensitivity:

Understanding and respecting cultural differences in attitudes toward illness and end-of-life care is essential. Researchers should engage with community leaders and members of the public to ensure that the research approach is culturally appropriate and respectful early into the research design process and before applying for ethics approvals.

• Respect for autonomy and informed consent:

Ensuring that participants are fully informed about the research’s aims, methods, risks, and benefits is crucial. Researchers must communicate clearly and sensitively, considering the participants’ ability to provide consent. It must be noted that end-of-life care is experienced as a relational unit. In some cases, involving family members and caregivers in the consent process may be necessary to ensure comprehensive understanding. This process respects patient autonomy.

• Beneficence and non-maleficence:

The wellbeing of participants must be the primary concern. Researchers should design studies that maximise benefits (beneficence) and while avoiding causing harm (non-maleficence). It is an ethical imperative to design and conduct a study that ensures participants are not harmed or caused distress through the research.

• Confidentiality and privacy:

Particularly given the sensitive nature of palliative care, strict measures must be in place to protect participants’ personal information. This includes anonymising data and ensuring secure storage to prevent breaches of confidentiality.

• Vulnerability of participants:

Palliative care patients can experience significant physical and emotional stress. Researchers must approach them with compassion and empathy, taking care not to add to their burdens. This includes considering the appropriateness of conducting interviews in patients’ homes and ensuring an appropriate protocol to manage any observed distress and that access to support services are in place ahead in case they are needed.

• Managing dual roles:

For researchers who are also clinicians, it is crucial to maintain clear boundaries between clinical care and research roles. I have found myself in this dilemma before and I know how difficult it can be to navigate. Following ethical principles and thinking ahead about what to do if such situations arise helps to ensure that the focus remains on the research objectives rather than providing therapeutic input.

These ethical principles are useful in guiding the design and the conduct of palliative care research. At Lancaster University, our PhD Palliative Care programme places greater emphasis on these ethical considerations – and more – equipping our students with the skills and knowledge needed to navigate these complex challenges effectively and conduct robust and ethical research.

For readers seeking additional resources on research ethics involving vulnerable populations, there are several key open-access papers and resources such as work by Dempsey et al.² that provide useful considerations when planning and conducting qualitative research.

References:

¹Farrimond, H. (2012). Doing ethical research. Bloomsbury Publishing.

²Dempsey, L., Dowling, M., Larkin, P., & Murphy, K. (2016). Sensitive interviewing in qualitative research. Research in nursing & health, 39(6), 480-490

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