Supporting patients and family caregivers in end-of-life care decision-making from the perspective of healthcare professionals in palliative care

Abstract

Healthcare professionals in specialist palliative care have a key role in conducting end-of-life care discussions with patients and their family caregivers. However, what enables or restricts healthcare professionals in specialist palliative care to be effective in this role is not fully understood. This research aimed to identify key barriers and facilitators for healthcare professionals in specialist palliative care to support patients and their family caregivers in decision-making for patient end-of-life care. This research also aimed to ascertain from the perspective of specialist palliative care healthcare professionals the impact of the recent changes in decision-making capacity legislation in Ireland (Assisted Decision-Making (Capacity) (Amendment) Act 2022) on their practice. A qualitative study was conducted with twenty-two healthcare professionals. Participants were recruited from a large regional specialist palliative care service in Ireland comprising two hospice sites and covering a catchment of nearly 15% of the national population. Five focus groups were conducted with participants. Data were member checked and analysed using thematic analysis. This research found that open communication and trusting relationships with patients and family caregivers combined with sufficient time for early and phased exploration of the patient's preferences for end-of-life care, were key facilitators for participants. Family caregivers keeping information from the patient, family caregivers' overestimation of their decision-making remit, and a lack of involvement of other specialties in end-of-life care discussions were perceived by participants as key barriers. Participants also conveyed that healthcare professionals beyond medicine and nursing have skills to support patients in end-of-life care decision-making. In the context of decision-making capacity legislation, participants reported uncertainty about the Assisted Decision-Making (Capacity) (Amendment) Act 2022 and emphasised a need for more public education to avoid misinterpretation of the Act. Participants felt that patients who need assistance with decision-making should be autonomous in decision-making but expressed concerns when patients made decisions about care that participants considered unwise. Participants reported that the Act would be beneficial in situations to support early communication between patients and their family caregivers about patient preferences for care. The findings from this research emphasise the role for healthcare professionals to centre patient autonomy in decision-making for end-of-life care. Palliative care providers in Ireland also need to consider the legislative impact of the Assisted Decision-Making (Capacity) (Amendment) Act (2022) on their practice as decision-making processes evolve in practice.