Personal preferences key to medically assisted death requests in ALS
New study finds disease severity not linked to life-ending practices
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- Requests for a medically assisted death in ALS appear to be tied to individual preferences rather than disease severity, a study found.
- The researchers noted people with ALS needing ventilation showed a reduced likelihood of requesting medical assistance in dying referrals.
- Clinicians should prioritize personalized end-of-life planning discussions that reflect each patient's individual goals and values, the scientists said.
Among people living with amyotrophic lateral sclerosis (ALS), requests to be referred for medical assistance in dying, known as MAiD, may have more to do with individual preferences about life-sustaining interventions than disease severity.
That’s according to a new Canadian study showing that people with ALS using noninvasive ventilation (NIV), a form of breathing support, were less likely to request an MAiD referral than those not using it. A similar trend — though one not reaching statistical significance — was seen for individuals requiring feeding tubes.
Overall, the team found that symptom severity was not linked to the likelihood that an individual would request an MAiD referral. ALS patients living in rural areas were more likely to request a referral, although the reasons for this remain unclear, the researchers noted.
“These findings suggest that decisions regarding MAiD may be influenced less by disease severity than by preferences regarding life-prolonging interventions,” the team wrote.
The researchers say this study may help clinicians better understand the motivations of people with ALS in requesting MAiD, a practice in which a doctor prescribes a lethal dose of medication to end a person’s life.
“From the lens of clinical care for ALS patients, this study highlights the importance of discussing end-of-life planning, recognizing that priorities will differ across individuals,” the scientists wrote.
The study, “Factors associated with requests for Medical Assistance in Dying (MAiD) referral among patients with amyotrophic lateral sclerosis receiving specialist palliative care,” was published in the Journal of Neurology.
A progressive disease, ALS is characterized by the loss of motor neurons, the nerve cells that control muscle movement, leading to muscle weakness. Over time, symptoms become more severe and widespread, eventually leading to paralysis and breathing failure.
Supportive care measures, such as feeding tubes and breathing support, can help extend survival for people with ALS, but may not always align with an individual’s quality of life goals. As a result, ALS patients may face difficult decisions about whether they wish to continue life-sustaining treatments. For some, end-of-life planning may include a request for MAiD.
Laws on medically assisted death vary by country, region
MAiD regulations vary by region. In Canada, where this study was conducted, people with “grievous and irremediable medical conditions,” including serious and incurable illnesses such as ALS, may qualify for it. In the U.S., such practices are only legal in certain states for people with terminal illnesses.
Previous studies in several countries have reported that one-fifth to one-third of people with ALS may opt for MAiD if available. In Canada, ALS accounted for about 2.7% of all MAiD deaths in 2024, data show.
Little is known, however, about which people with ALS are more likely to request MAiD or the factors associated with completing the process. According to the research team, identifying these factors could support advanced care planning and timely MAiD assessments — before significant cognitive or communication difficulties develop.
“We hypothesize that patients who consider and ultimately pursue MAiD may be less willing to accept intensive interventions, or more readily reach a threshold beyond which life-prolonging therapies such as NIV do not align with their perception of quality of life,” the researchers wrote.
To test this, the team conducted a study involving 272 people with ALS who underwent a specialist palliative care consultation at an ALS clinic in Toronto. Of them, 130 requested a MAiD referral, and 142 did not.
Among those who requested a referral, 57 ultimately received MAiD, 31 died from ALS without MAiD, 24 were alive at the study’s end, and 18 had an unknown outcome.
People in rural areas more likely to request a referral
The researchers noted that the two groups were broadly similar in age and in the severity of limb problems and bulbar symptoms, which affect speech, swallowing, and facial movements. Those requesting MAiD were less likely to have severe shortness of breath (14% vs. 30%), and to use NIV (63% vs. 77%) or feeding tubes (29% vs. 43%).
The group that requested MAiD had a higher proportion of women (48% vs. 39%) and a correspondingly lower proportion of men (52% vs. 61%) than the group that did not make a request.
Also, people who requested a MAiD referral were more likely to live in rural areas (13% vs. 7%).
In the final analyses, people living in rural areas were 2.4 times more likely to request an MAiD referral than those in urban areas. Age, sex, and the severity of limb or bulbar symptoms were not significantly associated with referral requests, the data showed.
Those using NIV were 44% less likely to request one than people not using NIV. Feeding-tube use showed a similar trend to NIV, but it was not statistically significant, the researchers noted.
The scientists did not identify any factors significantly associated with ultimately receiving MAiD among those who requested the referral.
Decisions relating to [medical assistance in dying] in patients with ALS may be … more reflective of individual tolerance limits regarding dependency and the use of life-prolonging interventions.
Overall, according to the team, these findings suggest that requests for MAiD may not be directly related to how advanced or severe a patient’s disease is. Instead, the scientists suggested, they may be tied to each person’s preferences regarding treatments.
“Decisions relating to MAiD in patients with ALS may be … more reflective of individual tolerance limits regarding dependency and the use of life-prolonging interventions,” the team wrote.
The researchers concluded: “Recognition of these differing values may support more individualized discussions around goals of care and end-of-life planning.”
Still, further studies are needed to better understand “how patient values and engagement with advanced therapies influence consideration of MAiD,” the team wrote.
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