The Netherlands became the first country in the world to legalize euthanasia as of 2002. In another first this month, it extended that right to people with advanced stages of dementia.
Diane Rehm’s husband, John, was living with severe Parkinson’s and Lewy body dementia. In the late stages of his disease, he told her that he was ready to die. But because assisted suicide was illegal in their home state of Maryland, their doctor could give the Rehms nothing but advice: Stop eating and drinking. Ten days later, in June of 2014, John had passed away of his own will.
In July of 2018, Ms. Rehm, an NPR host, recipient of a National Humanities Medal from President Obama, and spokesperson for the importance of right-to-die legislation in partnership with end-of-life organizations like Compassion & Choices, wrote an op-ed for Being Patient about extending the right to die to people with severe Alzheimer’s or other forms of dementia. She believed that no one should have to die the way her husband did.
“I strongly believe that all of us deserve to have a say in how we die,” she wrote for Being Patient. “If your religious beliefs tell you that God should be the only decider, I support you 100 percent. If you wish to have every option that medical science can provide to prolong your life, I support you 100 percent. However, if, like me, you want control over how and when your life ends, I support you 100 percent.
“… I have heard so many sad stories of those with some form of dementia lingering for years, experiencing no real joy or understanding of what is happening to them, and I do not want my life to end that way,” she wrote.
Rehm is not alone — the option of physician-assisted suicide is growing more accepted amongst people with a high risk of Alzheimer’s. According to a 2019 study published in JAMA Neurology in which 47 people were interviewed, and approximately 20% said they would be interested in pursuing physician-assisted suicide if they were diagnosed with dementia, and it progressed to the point of suffering or burdening others.
Right-To-Die Laws for Dementia in the U.S.
While euthanasia (when a physician takes an active role in carrying out a patient’s request to die, usually via intravenous delivery of a lethal substance) is illegal throughout the U.S., more states each year have passed legislation permitting physician-assisted suicide (when a physician makes a lethal substance available to a patient to be used at a time of the patient’s own choosing) as a right for people with terminal illnesses.
Oregon was first, in 1997. Washington followed in 2008, Vermont in 2013, and between 2016 and present, physician-assisted death has also become legal in California, Colorado, District of Columbia, Hawaii, Maine (put into effect at the start of 2020), and New Jersey, and de facto legal in Montana. Litigation is underway in a number of other states and a 2018 Gallup poll that found 72 percent of people support the idea of legalizing physician-assisted suicide for the terminally ill at the patient’s request.
But despite that dementia is considered a terminal illness, it does not fall within the legal requirements for any of these states’ right-to-die laws. According to advocacy organization Death with Dignity, this is because the laws state that only fully and consistently “mentally competent” adults suffering from a terminal illness with a prognosis of six or fewer months to live are eligible.
Some states are filling a need by developing formal advance directives for people with dementia — like New York’s “Advance Directive for Receiving Oral Food and Fluids in the Event of Dementia” (2018) which “provides a means for those diagnosed with dementia, while still retaining their decision-making capacity, to limit assisted feeding by hand when they reach the final/terminal stage of the disease.”
Right-To-Die Laws for Dementia in Other Countries
In Canada, where physician-assisted suicide — known there as “medical assistance in dying” (MAID) — has been legal throughout the country as of 2016, some people with advanced stages of dementia are eligible and in Netherlands, the world’s most progressive country when it comes to assisted death legislation, people with severe cases of dementia can seek euthanasia legally as of last week.
On April 21, the Associated Press reported that the Netherlands’ Supreme Court ruled in favor of a doctor’s ability to carry out euthanasia in people with advanced dementia if the patient has earlier made a written directive, upholding findings in a case from 2016.
Under the Dutch law, “people are eligible for euthanasia if they make a considered, voluntary request for it if their suffering is hopelessly ‘unbearable,’” and if it that suffering is definitively a result of their dementia. Patients may draw up an advance directive in writing specifying the conditions under which they would like it to happen, and doctors must seek the advice of at least one other independent physician before taking action.
Even before being upheld by law, requests for euthanasia by people with extreme dementia were already being honored in the Netherlands — fewer than 20 times since the country’s legislation legalizing euthanasia for terminal illnesses passed in 2002. The ruling now legally protects the practice for dementia.
Meanwhile, in the U.S. the debate around assisted death as a right for the terminally ill in general remains contentious.