This article, “Seeking new methodology for palliative care research: challenging assumptions about studying people who are approaching the end of life” by Jane B Hopkinson, David NM Wright, and Jessica L Corner, published in Palliative Medicine in 2005, addresses the significant ethical and practical challenges inherent in palliative care research, particularly concerning patient recruitment. It is widely recognized that there is a crucial need to strengthen the evidence base for palliative care, and understanding the concerns of fragile patients is vital for clinical decision-making to achieve patient-led outcomes.
Historically, research in this field has often relied on the perspectives of healthcare professionals or lay-carers, which has limitations, especially when the focus is on the patient’s illness experience. However, recruitment into studies involving palliative care patients has proven exceptionally difficult, leading to small and unrepresentative samples that compromise the rigor of studies. Recruitment rates have been reported as low as 17% for surveys and 9% for outcome evaluations, sometimes rendering trial work non-viable. These difficulties stem from very real practical challenges, such as patients experiencing pain, fatigue, and anxiety, which can hinder their ability to participate in self-completion measures or structured interviews. Additionally, ethical concerns arise from the potential for harm outweighing any benefit for individuals approaching the end of life, as participation might involve loss of time and energy without direct advantage or require discussing distressing issues.
Challenging the widely held belief that it is inappropriate to study people nearing the end of life, this paper presents a participatory approach as an effective methodology to overcome these barriers. The authors detail the application of this approach in an in-depth, multi-methods study investigating weight loss and eating difficulties among people with advanced cancer receiving community palliative care services in the South of England in 2003.
The core of the proposed methodology lies in its collaborative and dynamic nature, where power is negotiated between the researcher and the researched. This involves a continuous dialogue about methods and decision-making informed by local knowledge and experience, transforming the process into one of mutual learning. This context-specific participatory approach proved to be feasible, successful, and acceptable to clinicians, researchers, and patients, leading to a high recruitment rate. Out of 272 eligible patients, 233 were given a questionnaire, and 199 patients returned it, achieving an impressive 85.8% response rate. Nurses involved in the study expressed surprise at the willingness of very sick people to contribute, with many patients welcoming the opportunity to participate and support work that could help others. The study suggests that offering choice to participate can be life-affirming for patients, potentially becoming an integral part of care with its own therapeutic value.
This research highlights that by actively involving clinicians, service users, and other stakeholders in shaping the research process, and by making the methods consistent with palliative care philosophy and practice, it is possible to develop a robust evidence base for the field.
Reference for this article:
Hopkinson, J. B., Wright, D. N. M., & Corner, J. L. (2005). Seeking new methodology for palliative care research: challenging assumptions about studying people who are approaching the end of life. Palliative Medicine, 19, 532–537.