Laura Spiegel’s scientific contributions

Objective: To explore experiences of patients who have complex chronic conditions (CCCs), such as fibromyalgia and chronic fatigue syndrome, when they request medical assistance in dying (MAID) in Canada. Design: Qualitative study using semistructured interviews. Setting: Canada. Participants: Individuals with CCCs who had contacted any 1 of 4 advocacy organizations between January 21, 2021, and December 20, 2022, about requesting MAID for suffering related to CCCs or who had applied and been assessed for MAID. Methods: Interviews were conducted virtually (by video or audio) and recordings were transcribed. Thematic analysis was conducted in an iterative manner with abductive analysis. As interviews were completed, transcripts were reviewed and emerging themes were discussed at regular intervals. Main findings: Sixteen individuals were interviewed. All spoke of long-lasting suffering that was unresponsive to an array of medical treatments. Although some participants had hoped to receive MAID immediately following the 90-day assessment period, many mentioned that approval would provide or had provided validation of their illness and a sense of control, especially should their illness become unbearable. Participants sharply distinguished between MAID and suicide, saying they preferred MAID because it offered greater certainty and caused less emotional pain to others. Many said that participating in this research was beneficial because they believed the interviewers truly listened to them. Conclusion: Participants described experiences with CCCs and requests for MAID. This information may provide family doctors with new insight to inform interactions with patients with CCCs.

In this study, 20 medical assistance in dying (MAiD) providers were interviewed about their experience when assessing patients with unmet needs, including medical, financial or social needs. Collectively they had experience with over 3700 MAiD assessments and found that unmet needs were rare. In the cases where patients had unmet needs, these were usually related to loneliness and poverty. This led to the ethical dilemma of providers deciding to honor their wishes for MAiD, knowing that some of their suffering was due to society's failure to provide for them.