Opting for End of Life
Ten states now permit Medical Aid in Dying (MAID) — why do patients request to end their lives early, and how do medical providers make sure they mean it?
Esmé Deprez recalls getting a succinct text from her father, Ron, one morning. "He was ready to die," she says, "and he needed me to help."
His statement wasn't a surprise. At age 75, Ron Deprez had endured a gradual decline from amyotrophic lateral sclerosis, a progressive and inevitably fatal neurodegenerative disease also known as ALS or Lou Gehrig's disease.
He had told his children that after considering his options he chose to pursue a medically assisted death. Under Maine's Death With Dignity Act, he obtained consent from his physician and agreement from his family.
Choosing to Die
Esmé Deprez is a journalist who writes for Bloomberg News. In January 2021 she published a feature article detailing her family's experience. She explained that her father chose to die the way he lived — with certainty and passion. He didn't want to die, she wrote, but faced with the debilitating symptoms of ALS and knowing there is no cure, there was no question what he would do.
"Promise you won't let me suffer."
For Pamela Harris, the idea of medically assisted death was not top-of-mind until her daughter, Bonnie McKeegan, suggested it. Harris had metastatic breast cancer. McKeegan, a licensed therapist, knew California had enacted the End of Life Option Act in 2016 and discussed it with her mother. It didn't take long for Harris to make her decision.
"She said, 'I want the pill,'" McKeegan recalled. By "pill" her mother meant the combination of medications specified in the new law. "Her next sentence was, 'Promise you won't let me suffer,'" McKeegan said. Her mother was 74 when she died in 2018.
Every day, patients and their families make decisions about how they will die. Some, like Ron Deprez and Pamela Harris, choose to die on their own terms and on their own schedule. Some choose to withhold food, water, medication and other life-sustaining treatment. Some let nature take its course. Choices also include palliative care, palliative sedation and hospice.
Ask About Your Options
Kim Callinan, president and CEO of Compassion & Choices urges patients to ask about all types of care because doctors don't always suggest them.
Palliative care, a relatively new specialty that treats pain and other symptoms of disease as well as the disease itself, still is not available in all regions of the U.S. "With palliative care," Callinan explained, "you have a champion by your side who is focused on your quality of life and on the diseases, and you do not have to forgo treatment."
She points out that palliative care is not the same as hospice. "Hospice care is giving you full wraparound care, giving support to your loved ones, but you do have to go off of curative treatment."
In jurisdictions where medical assistance in dying is legal, doctors must make sure their patients know about all forms of end-of-life care, explained Geoff Sugerman, the national political advisor for the Death with Dignity National Center. He was instrumental in the 1997 passage of Oregon's Death With Dignity Act, the first law of its kind in the country. He continues to work for the organization.
Only Patients Can Decide
"The terminally ill person must ask for this from the beginning," he stressed. "It's not something where the doctor or anyone else can go to the patient and say, 'Well, you might consider. . . .' It has to start with the patient."
Some patients take the option as soon as they receive a prognosis, while others make that decision later. Some do it when the pain becomes unbearable. Others may know well in advance whether they would seek death over illness.
Many family members who witness medically assisted death become supporters of the option. Bill Pieper supported two failed attempts at end-of-life laws in California but after witnessing deaths of loved ones, he doubled down on his dedication and served on a committee to help develop the first law that passed in the state in 2015.
Avoiding a 'Very Unpretty' Death
"I know my ex-wife would have opted to use the law," he said. Instead, she had what Pieper called a "very, very unpretty" death in 2010.
"I know my ex-wife would have opted to use the law."
After Harris passed away, her daughter trained as an end-of-life doula — a person trained to provide advice, emotional support and physical comfort to people with terminal illnesses patients — so that she can be with patients as they die.
While only 10 states and the District of Columbia have passed laws allowing medically assisted death, the fact that they legalized the practice in the last 25 years may suggest a shift in public acceptance. A 2020 Gallup poll found that 74% of Americans favored ending terminal patients' lives by painless means.
Just as death-with-dignity laws enable patients to decide what is appropriate for them, they empower medical professionals to opt out of participating in a life-ending procedure if, for example, it conflicts with religious beliefs or a personal moral code. "It's a voluntary law on all sides," Sugerman said.
Who Does Not Qualify?
Although ALS patients are the second-most-likely group to choose medical aid in dying (the largest group is cancer patients), there is a time factor. Because laws require that a patient self-ingest the prescribed medication, patients with neurodegenerative diseases have to decide to take their own lives while they can still physically carry out the final action.
Time is also a serious consideration for people with dementia. Laws require patients to express consent on several occasions, including moments before the final dose is taken. Dementia patients may not be able to recall their earlier decision and may not be able to consent when the time comes.
Callinan, of Compassion & Choices, suggests that early planning will help families know when to act after a loved one is diagnosed with dementia.
Planning Is Essential
"It's worth it to sit down and go through and figure out where that point is," she said. The organization's website offers information.
Pieper reflected on the laws that do not serve all patients. "The law falls short with diseases such as Alzheimer's or other forms of dementia or ALS or even Parkinson's Disease," he said. "A person who obviously satisfies all the other criteria cannot make use of the law because the disease prevents them from being able to satisfy the technical requirements of the law."
"Dementia is an especially difficult case," said Wendell Stephenson, a member of the board of Final Exit Network, a nonprofit that provides people in all 50 states with information about non-medical means to end their lives. "We work with people who are diagnosed with dementia of various kinds, but they have to be at an early stage."
Discuss Options with a Doctor
Dr. Nathan Fairman, UC Davis Health's medical director for the End of Life Option Act, says doctors ought to prepare to talk with patients about options. Even if doctors do not start the conversation, he added, they should listen for cues from patients so they can provide appropriate recommendations.
"It is a well-accepted ethical obligation for a physician to describe the options, including doing nothing," Fairman said. Depending on the patient, the options "might include aid in dying, just as they might include hospice and palliative care."
For patients who choose medical aid in dying, the website of the American Clinicians Academy on Medical Aid in Dying has information that prepares them and families for what is to come.
It also explains the role of a clinician in recording the death and responding to adverse reactions to end-of-life medication.
"He wasn't going to beat ALS. No one does. But neither was he willing to let it beat him."
Making a Decision
Medical professionals and advocates are quick to point out that most people who receive the final drug prescription do not use it. In other words, patients can sign up and still change their minds.
Laws are specific to eliminate opportunity for coercion. "Every state that has this law has reporting requirements," Sugerman said. "The physician has to record that the person made their voluntary oral or written request. There are steps throughout the process that are specifically designed to make sure the person is acting voluntarily."
The laws are also clear on what family members cannot do. The requirement that the patient has to self-administer is a safeguard to "provide a level of protection for the family members who are going to be there at the time that the patient ingests the medication," he said.
"When people use the law, they die at home," Sugerman continued, adding that most are already enrolled in hospice. "They die surrounded by their family and their friends. Families who go through this with their loved one come out of it in a better place with a better feeling about that person's death. There's a level of closure that you do not get with a typical, terminally ill death in a hospital."
Esmé Deprez saw her father's resolve. "He wasn't going to beat ALS. No one does," she wrote in her Bloomberg article. "But neither was he willing to let it beat him."
Bonnie McKeegan said her mother's decision helped her to shape her own plan. "You never know what you're going to do at the time, but it's definitely within my values, and now I know."