“The best way to go”; navigating hospital end of life care research dilemmas

Introduction: It is essential to listen to caregivers’ end of life care experiences to evaluate how well we support dying patients and their caregivers in hospital. Given the sensitive nature of this topic, researchers must design recruitment and data collection tools which minimise participant distress. This poster summarises the epistemological, methodological and ethical dilemmas encountered regarding two projects on hospital based end of life care at Monash Medical Centre Clayton.
 
Methods: The first dilemma was whether our research should quantify satisfaction with care or understand the qualitative experiences of caregivers. Secondly, we needed to design data collection tools which produced meaningful data without causing distress.  Finally, multi-staged recruitment processes ensured researchers engaged respectfully and appropriately with bereaved caregivers. 
 
Findings: Primarily qualitative designs have achieved a greater appreciation of the nuanced end of life experiences of caregivers in hospital with a quantitative tool further capturing satisfaction scores for specific care domains. Semi-structured interviews were not distressing for participants with many expressing gratitude for the opportunity to participate.
 
Conclusion Participants reported mostly positive end of life care experiences and no adverse reactions have occurred due to research participation. Although qualitative interviews produced more emotive responses, participants reported the interview itself did not caused harm or distress. Further improvements to the design are being considered to gain a greater understanding around motivations to participate in sensitive research as well as the dilemma of including dying patients themselves in research.

Hospital based research on end of life care (797kb pdf)