Ethical challenges of conducting observational research involving dying patients and their families

The care provided to the dying patient and their family is an area that requires attention. Whilst palliative care units provide specialist care aimed at facilitating a dignified death, with symptom control and patient autonomy as their primary goals, death occurs in all areas of the health system with two thirds of the Australian population dying whilst an inpatient in a health facility. This research project is aimed at investigating the nursing care delivered to patients who are dying, in acute hospital (non-palliative, non-critical care) wards, through non-participant observation in two wards. Observation was chosen as one method for data collection as it is only through immersion in the clinical environment, that the researcher can begin to understand what is being observed, and the rationale behind the care observed. While ethical issues can arise in any study, undertaking research with vulnerable populations, such as dying patients and their families poses ethical challenges for the researcher. While the goals of this research were to observe and focus on the nursing management and care, practices. routines, rituals and the rationales of such practices in relation to terminal patients, the collection of such data is not possible without also observinq the dying patient and their families.

This presentation will explore some of t he ethical dilemmas faced by the researcher as part of the conduct of this research.