Experiences of healthcare providers with eligible patients’ loss of decision-making capacity while awaiting medical assistance in dying

BACKGROUND: In Canada, under Bill C-14, patients who met all eligibility requirements were prevented from accessing medical assistance in dying (MAiD) following their loss of decision-making capacity while awaiting MAiD. The changes introduced with Bill C-7 continue to limit access to patients who did not enter a waiver of final consent agreement with their healthcare providers. Little is known about the experiences with patients’ loss of capacity to consent and subsequent ineligibility for MAiD. Understanding healthcare providers’ experiences has important implications for improving end-of-life care for those with capacity-limiting conditions. PURPOSE: To explore Canadian healthcare providers’ experiences with end-of-life of eligible patients who became ineligible for MAiD due to their loss of decision-making capacity to consent and the relational influences on their experiences prior to the implementation of Bill C-7 in Canada. METHOD: A critical qualitative methodology and a feminist ethics theoretical lens guided this study. A voice-centred relational approach that allowed an in-depth exploration of how power, relationality and moral agency influenced participants’ experiences was used for data analysis. Data consisted of semi-structured interviews with 30 healthcare providers. FINDINGS: The analysis resulted in the following four main themes and corresponding subthemes: (1) identifying factors that may result in ineligibility for MAiD due to capacity loss; (2) maintaining eligibility required to access MAiD; (3) preparing for an alternative end-of-life; (4) experiencing patients’ capacity loss. DISCUSSION: This study highlights that while MAiD is legally available to eligible Canadians, access to MAiD and care for eligible patients who were unable to access MAiD due to their loss of decision-making varied based on the geographical locations and access to willing MAiD and end-of-life care providers. The availability of high-quality palliative care for patients throughout the MAiD process, including following the loss of capacity to consent and subsequent ineligibility, would improve the end-of-life experience for all those involved. The need to establish a systematic approach to prepare and care for patients and their families following the patients’ loss of capacity and subsequent ineligibility for MAiD is also identified.