Medical assistance in dying when natural death is not reasonably foreseeable: Survey of providers' experiences with patients making track 2 requests. — CFSMEATLAS
Medical assistance in dying when natural death is not reasonably foreseeable: Survey of providers' experiences with patients making track 2 requests.
Wiebe, Ellen, Kelly, Michaela · Canadian family physician Medecin de famille canadien · 2023 · DOI
Quick Summary
This study looked at how doctors in Canada handled requests from patients with serious chronic illnesses who asked for medical assistance in dying (MAID) between March and September 2021. Among 54 patients who made these requests, about 15% had ME/CFS or similar complex chronic conditions, and 52% had chronic pain. Doctors reported struggling most with patients who also had mental health conditions and uncertainty about whether patients had tried all available treatments.
Why It Matters
This study directly documents the medical and clinical contexts surrounding MAID requests from ME/CFS patients in a jurisdiction where such requests are legally permitted. For ME/CFS patients and advocates, the data reveals gaps in treatment availability and the role of untreated mental health comorbidities in end-of-life decision-making. Understanding provider challenges may inform discussions about improving palliative care, psychiatric support, and treatment access for ME/CFS.
Observed Findings
Among 54 track 2 MAID requests, 8 patients (14.8%) had ME/CFS or similar complex chronic conditions.
Concurrent mental illness was documented in 37 assessments (68.5%), identified as the most common challenge.
In 19 cases (35.2%), providers believed patients had not been offered all appropriate and available treatments.
Providers struggled to locate expert assessors in 8 cases (14.8%) and to find appropriate treatments in 9 cases (16.7%).
Chronic pain syndromes were the most common diagnosis (28 patients, 51.9%).
Inferred Conclusions
Providers experience significant moral distress when assessing track 2 requests due to uncertainty about treatment adequacy and concerns about concurrent mental illness affecting decision-making capacity.
Complex chronic conditions including ME/CFS represent a distinct clinical context compared to track 1 requests, with greater uncertainty about exhausted treatment options and unmet healthcare needs.
Systematic gaps exist in treatment availability and specialist expertise for patients considering MAID, raising questions about whether such requests reflect true lack of alternatives or inadequate access to care.
Remaining Questions
What specific treatments were or were not offered to the ME/CFS patients in this cohort, and why were they declined or unavailable?
What This Study Does Not Prove
This study does not establish whether MAID is an appropriate option for ME/CFS patients, nor does it prove that unavailable or untried treatments could have changed patients' outcomes or decisions. The data reflects provider perceptions of challenges rather than objective measures of treatment availability. The small sample and voluntary participation may skew results toward providers with particular experiences or perspectives.