Overcoming the challenges of conducting research with people who have advanced heart failure and palliative care needs

Research on the palliative care needs of heart failure patients is scant and requires development to provide a sound evidence base for improved care; but there are distinct practical and ethical challenges in conducting research with this population. This paper presents an integrative review of the literature that aims to describe these challenges and discuss potential strategies by which they may be addressed. It is recognised that heart failure is a volatile condition making identification of the end of the life phase difficult. This leads to an array of other issues; firstly clinical teams tend to use this as a rationale for their failure to discuss palliative care issues with patients and families, making identification of the population difficult and research related communication challenging. Symptom volatility also creates methodological problems for researchers in deciding patients' eligibility, securing user involvement and contributes to sample attrition in research. There are also substantial ethical challenges for researchers in terms of gaining access and ensuring patient autonomy in this population. Acknowledgement of these issues and discussion of strategies by which they can be addressed has the potential to augment clinical research, develop practice and ultimately produce the much needed improvements in patient care required for those with advanced heart failure.