A new international survey reveals sharp divisions among clinicians on the acceptability of euthanasia for patients with dementia who request it, with nearly half in favor and almost as many opposed.

“Nearly half of the clinicians found it acceptable for people with dementia, while almost the same percentage considered it unacceptable,” Jenny T. van der Steen, MSc, PhD, who worked on the survey, told Medscape Medical News.

Acceptability of euthanasia for dementia varied substantially across countries and between individual providers, said van der Steen, with the Department of Public Health and Primary Care, Leiden University Medical Center, Leiden, the Netherlands.

Notably, training in palliative medicine, religious affiliation, and certain coping styles were linked to lower acceptance of — or willingness to perform — euthanasia at the request of a patient with dementia.

The survey results were published online on August 20 in the American Journal of Geriatric Psychiatry.

A Controversial Issue

“Some people with dementia would rather die than live with the condition, and they may consult their doctor or request medical assistance in dying or euthanasia in jurisdictions where this is allowed,” said van der Steen noted.

“Clinicians are responsible to evaluate and respond to such requests, and in the case of euthanasia, they may also perform it. However, euthanasia is particularly controversial in the case of dementia because of the declining cognitive capacity accompanying the disease,” she noted.

The survey assessed clinicians’ views on the acceptability of euthanasia for people with dementia, surveying 202 physicians and three nurse specialists with comparable medical responsibilities across six high-income countries — the Netherlands, Switzerland, Germany, the US, Japan, and Israel — which differ in their legislation and end-of-life options.

Euthanasia for dementia is not permitted in the US, Switzerland, Germany, Japan, or Israel. The Netherlands permits euthanasia, including for people with dementia, although it’s primarily restricted to people with mild dementia who are still capable of sound decision-making.

Switzerland permits physician-assisted dying (PAD) in cases of dementia, provided the patient has the mental capacity to decide and is able to self-administer the lethal medication.

PAD is legal in some US states, including Oregon, Washington, California, Colorado, New Jersey, Maine, New Mexico, Vermont, Hawaii, Montana, and Washington, DC — but not for patients with dementia.

Varied Perspectives

In the survey, clinicians’ perspectives on the acceptability of euthanasia for those with dementia varied across countries and individual providers.

Overall, more than 2 in 5 (44%) of clinicians considered euthanasia acceptable for people with dementia, ranging from 23% in Switzerland to 66% in the Netherlands.

Willingness to carry out euthanasia was lower: Only 38% of clinicians said they would perform the procedure at the request of a patient with dementia, with rates ranging from 18% in Germany to 58% in the Netherlands. Just 15% were willing to act on a request from a family caregiver. Yet 35% reported they would want euthanasia for themselves if they developed dementia.

Overall, the researchers said the findings highlight a core “tension” in end-of-life care for dementia — balancing respect for the autonomy of individuals with mild dementia who request euthanasia because they view advanced dementia as unbearable, against the need to protect vulnerable, incompetent patients by carefully assessing current suffering and guarding against undue influence from relatives.

However, they cautioned that the survey did not specify factors such as decision-making capacity or dementia stage — elements that clinicians may consider crucial when judging the acceptability of euthanasia.

The Clinician’s Role

“In our opinion, doctors should inform patients when they raise questions about assisted dying, but we do not recommend doctors to actively inform all patients about the options as this wish and request should be fully theirs,” said van der Steen.

“Doctors also have a role in clarifying and attending to the underlying reasons that motivate the person’s request for assisted dying in case these are modifiable,” she said.

To support these difficult discussions, the nonprofit Compassion & Choices, in partnership with the American Society on Aging, has developed a clinician resource titled Essential Conversations: Planning for Life with Dementia.

“Since dementia is a progressive disease that will impact a person’s ability to communicate, make decisions, and participate in daily activities, it is critical healthcare providers provide clear information on what to expect, what supports are available, and begin advance care planning conversations as soon as possible,” Jessica Empeño, MSW, APHSW-C, national director, clinical engagement, Compassion & Choices, told Medscape Medical News.

In addition to a standard advance directive, Compassion & Choices recommends a dementia directive to incorporate specific information and instructions related to life with dementia, Empeño said.

Compassion & Choices also provides The Dementia Values and Priorities tool — a free resource that allows people to communicate their wishes regarding future care if they are diagnosed with dementia.

An Ethical Challenge

Reached for comment, Shaheen Lakhan, MD, PhD, neurologist and researcher based in Miami, Florida, noted that “dementia isn’t one disease but thousands — some devastatingly rapid, some slow and insidious, and some even reversible. That heterogeneity alone makes the question of euthanasia uniquely complex.”

“Medicine often teaches us that improving the biological substrate does not necessarily translate into preserved quality of life or function, and yet those are the outcomes patients and families value most. If quality of life and independence are the true goals of medicine, then they must also shape how we think about end-of-life choices in dementia,” Lakhan told Medscape Medical News.

He said the ethical challenge is compounded by time.

“A patient may lucidly set out their wishes early on, but years later, when they no longer recognize their family or themselves, they cannot reaffirm or withdraw that choice. We are left with the profound dilemma of whether to honor the ‘then self,’ who had capacity and foresight, or to protect the ‘now self,’ who may appear content in unawareness but is no longer able to consent,” Lakhan said.

“For autonomy to be meaningful in this context, patients must be fully informed of the range and unpredictability of dementia trajectories,” he noted.

The bottom line, Lakhan said, is that “for patients to make truly informed end-of-life choices, we need exceptional diagnostic accuracy, clear and compassionate counseling, and systems robust enough to turn autonomy from theory into reality.”

van der Steen, Empeño, and Lakhan had no relevant disclosures.