Early in his Alzheimer’s diagnosis, architect Brian Ameche was aware his disease was going to become progressively worse, and he didn’t want to live to experience it.
Ameche was diagnosed with Alzheimer’s in 2019, while in his mid-60s. By late January 2020, he was where he wanted to be: in Zurich, Switzerland, holding his wife’s hand as he lay dying after taking a lethal dose of medication prescribed by a doctor—a procedure known as medical aid in dying, or death with dignity. In America, people suffering from Alzheimer’s and dementia are excluded from death-with-dignity laws, which is why the couple traveled abroad. Ameche’s wife, author Amy Bloom, chronicles their experiences with Alzheimer’s disease and medical aid in dying in her new book, “In Love: A memoir of love and loss.”
To take advantage of death-with-dignity laws, you need to be a terminally ill adult with six months or less to live, have decision-making capacity and the ability to self-administer a lethal dose of medication prescribed by a physician—criteria that patients with Alzheimer’s and dementia don’t meet, according to David Orentlicher, MD, JD, director of the William S. Boyd School of Law at UNLV.
Alzheimer’s and dementia are not terminal illnesses. Plus, as the disease progresses, patients lose their decision-making capacity to understand their choice and executive functioning skills to self-administer medication.
“Dr. Kevorkian’s first patient was a woman with early Alzheimer’s,” Orentlicher recalled, noting she was still mentally competent. “You can only make a decision like that while you have capacity.”
Rules exist for a reason
The courts want to prevent the law from getting abused.
“We want to make sure the Marilyn Monroes and Vincent Fosters [President Clinton’s late deputy White House counsel who died by suicide] of the world cannot get a lethal dose of medication,” Orentlicher said.
Still, there is hope.
“You have to be terminally ill for aid in dying, but not for withdrawal of treatment,” Orentlicher explained. “At some point, Alzheimer’s patients will need a feeding tube and likely require life-sustaining treatment, which they can refuse in a living will. Ventilator, dialysis or a feeding tube tends to correlate with having a serious and irreversible illness.”
In 1997, Oregon was the first state to pass the Death with Dignity Act, legislation used as a model in California, Colorado, Hawaii, Maine, New Jersey, New Mexico, Vermont, Washington and the District of Columbia. Presently, 15 more states have legislation in progress, also modeled after Oregon’s, with Massachusetts and New York most likely to enact it, according to Peg Sandeen, PhD, MSW, CEO of Death with Dignity in Portland, Oregon. Once again, people with Alzheimer’s and dementia will be excluded.
Orentlicher explained more key reasons why:
- Sanctity of life – Some people believe you should never take an action that would end a person’s life, whether it’s giving them pills, turning off a ventilator, capital punishment or war.
- Not knowing if it’s a genuine choice – The patient may feel a duty to die, to avoid burdening their family or they may simply be depressed because of their illness.
A legal alternative to medical aid in dying
“How to support end-of-life care needs with Alzheimer’s and dementia is a critical question facing our society,” Sandeen said.
Until it gets answered, she advises people in the early stages of disease, who are still capable of making decisions, to put advance directives in writing, outlining the care they do and don’t want once they’re unable to make decisions for themselves. To make sure your plan is followed, she said, give it to your health care power of attorney agent. Also, make sure your doctor agrees with your wishes. If not, she said, find another doctor.
Sandeen suggests those with Alzheimer’s and dementia wishing to hasten their deaths turn to End of Life Choices, New York for guidance. The organization has instructions on its web site for writing an advance directive to voluntarily stop eating and drinking (VSED)—supervised fasting that ends a person’s life in two to three weeks.
With aggressive symptom management, it should not be too stressful, according to Judith Schwarz, CEO of End of Life Choices, New York. You can choose comfort-focused feeding, where people are given food they like, in the amount they want, without prolonging their life, she explained. But understand that VSEDs are new to the medical community: Unless you work in hospice or palliative care, you may not be familiar with it. So, you’ll need to make sure wherever your loved one ends up, such as a long-term care facility, that the nursing home administrator will honor it.
As a caregiver, check to make sure your state doesn’t have regulations in place prohibiting VSEDs, once an individual loses their decision-making capacity. There’s no restrictions while a senior is still mentally competent, but that’s in the early stages of disease, and Schwarz has never seen anyone take such a drastic measure during that time.
Not surprising, the question of whether or not to follow advance directives may still come up.
“With dementia they’re a different person,” Orentlicher explained, and questioned if it’s appropriate to “let the person who was competent now speak for the person who has dementia.”
If they don’t seem to be suffering, are enjoying life, and their life has not become undignified, an argument exists to not follow a directive rejecting treatment.
What the future holds
Almost 25 years after Oregon’s Death with Dignity Act became law, Orentlicher said there haven’t been any concerns about abuse.
“That makes other states more comfortable,” he explained. “At some point, we can expect death-with-dignity laws to be a fundamental right.”
In a recent interview with National Public Radio, author Amy Bloom (wife of Brian Ameche) admitted she thinks her husband would have chosen to live longer, if the circumstances were different. But he understood there was a window of cognitive functioning, and he had to act on it before it closed.