Patient experiences with requests for medical assistance in dying: Perspectives of those with complex chronic conditions 2024 Fruhstorfer et al

[Andy]

Abstract

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.

Open access, https://www.cfp.ca/content/70/1/41

 

[Andy]

"Sixteen participants were recruited with a mean age of 53.6 years, ranging from 20s to 80s. All participants had completed at least high school education and 8 had each completed a bachelor’s degree. Most (13 of 16) were unable to work and most lived by themselves (11 of 16). Only 5 said they had supportive people in their lives. The most common diagnoses were chronic pain syndromes including fibromyalgia and complex regional pain syndrome (13 of 16), with 5 having myalgic encephalomyelitis or CFS. Many had concurrent depression. All had suffered for years and most for decades."

 

[rvallee]

So basically exactly the stuff that medicine refuses to work on, chooses to deny because it hurts their egos.

From the methodology section, it was pretty close to random, so this is likely to be representative of the MAID population in general. Damn this is bleak.

 

[Ravn]

approval would provide or had provided validation of their illness

Only 5 said they had supportive people in their lives

Damn this is bleak.