Beyond Six Months

Assisted dying is off limits for some people close to death—here’s why that should change.

Assisted dying has been on my mind again after a bill passed an initial vote in the U.K. House of Commons late last year, bringing Britain closer to legalizing the practice. The well-intentioned bill grants the right to assisted dying to adults who are terminally ill, will die within six months, and are mentally competent to consent to the procedure at the time.

This prompted an ongoing flurry of media coverage, articles, and debates. In both the U.S. and the U.K., media coverage was predictable. Conservative and religious groups were critical of the bill and feared a devaluation of life. Liberals celebrated the law as a victory for autonomy and compassion.

The law will undoubtedly prevent an enormous amount of suffering, as many like it have done in other jurisdictions. But it overlooks those whose lives are coming to a natural conclusion but fall outside the qualifying criteria.

It would have made no difference for my stepmother, Rosie, who had Alzheimer’s disease. She was not allowed to end her life on her terms before dementia took her independence from her, no matter how much she wanted this.

When Rosie entered my life when I was four, she and I became as close as mother and son. She was a Spanish professor with bold red hair to match her assertive and independent personality. She traveled the world, left behind a trail of broken hearts, and could out-drink or out-shoot any man.

When I was twelve, Rosie was diagnosed with Alzheimer’s Disease—a terminal illness. Over the next eight years, we watched her slowly phase through the seven stages of Alzheimer’s, losing the memories and language that gave her life meaning. The loss of her cognitive and physical capabilities meant losing her autonomy, something she found completely intolerable.

Rosie often spoke about ending her life to avoid losing her independence. She asked many times if assisted dying was an option for “when it gets to that point.” When we told her “no,” she would ask if we could shoot her in the head or push her off a bridge. Eventually, we made a joke out of it. Her family, more prim than my father’s, found this dark humor shocking.

Assisted dying was off-limits to Rosie because we lived in Maryland, where assisted dying was not legal. Further, all U.S. jurisdictions that have legalized assisted dying exclude people with dementia from utilizing it. A person must be mentally competent to consent to the procedure when administered.

Oregon keeps highly detailed reports on assisted dying. All people who receive assisted dying in the Beaver State must be terminally ill with six months to live. However, the reasons they opt for assisted death are telling. 90% of Oregonian recipients of assisted death cited loss of autonomy, and 89% cited loss of ability to participate in enjoyable activities as reasons they opted to end their lives early. Physical pain is not the only form of suffering. For many, loss of independence is its own form of pain.

As Rosie deteriorated, she required constant supervision and assistance with daily tasks. This may sound mundane, but it was both exhausting and dire (imagine the needs of an adult-sized baby). She had to be moved into memory care. Before the move, we took her on one last vacation to see her friends in Tucson where she used to live. It was one of the most stressful experiences of my life, but it was worth it for her.

When we returned, she was moved into memory care within weeks. The day we dropped her off, she tried to follow us out of the facility. I will never forget how devastated she looked when the glass door closed behind us. It felt like we were abandoning her.

Rosie’s final months represented the loss of dignity she feared. Memory care was like a prison for her. During a visit, she said, as if asking, “I want to die.” She eventually had a psychotic break and began having delusions that she was locked away as part of a conspiracy to facilitate imaginary infidelity on the part of my father—her devoted caretaker. During one episode, she smeared feces on the walls of the facility. Another resident referred to her as “the loon.”

After a hospitalization, she lost the ability to walk and was placed in a nursing home. There, she sat in a geriatric chair, babbling “word salad,” and shitting and pissing in a diaper. The nursing home reeked of urine and rang with the sounds of dementia patients crying for help—one screaming for death at the top of her lungs for hours on end, “Take me, Jesus, take me!”

During a visit from college, I discovered Rosie was in a near vegetative state and largely unresponsive to external stimuli. She looked like a mummy or a zombie—her gray skin clung close to her gaunt features. She breathed shallowly, and her hands were coiled by her chest. I looked at her, and she moved her eyes and cheeks, the closest thing she could make to a smile. It was the first time she appeared conscious in months.

As sometimes happens with late dementia patients, Rosie’s mouth was perpetually open. The nurses believed the law required them to feed all patients, including those physically incapable of swallowing, such as Rosie. They spread a paste made from various foods across the roof of her open mouth to “feed” her. I recently reached out to members of the Maryland State Legislature to ask if the law required this. It did not. Force-feeding her against the wishes of her healthcare agent may have even been illegal.

No memory haunts me more than when I tried to remove this paste from her mouth. It smelled so strongly like feces that everyone in the room began gagging. If I had continued, I might have vomited. Nurses, in the most disrespectful tone, informed me that they would not assist in removing the paste and would continue to smear it on her palate.

Rosie died alone on March 15, 2018. The value created by extending her ordeal and our family’s grieving by nine months is that her story will shine a light on the moral blindspot created by the panic around the expansion of assisted dying.

Critics assert that assisted dying, like communism, works well on paper but not in reality. They fear that even restricting assisted dying to only those with six months to live will inevitably create a slippery slope, wherein the practice will always be expanded to include more and more people until assisted dying is available on demand.

However, a report from the U.K. Parliament has already discovered what guardrails work in assisted death. The six months to live criteria, as limiting as it is, virtually eliminates the horror stories critics fixate on (or distort). Notably, all U.S. jurisdictions have successfully limited the practice to those with six months left.

The six months guardrail touches on the very essence of why some people should be allowed to choose to die—because their lives are basically over. Instead of stopping at the six months guardrail permanently or rapidly knocking it down, we should incrementally expand assisted dying criteria—with excessive caution—to all people nearing the end of their natural lives, such as terminally ill children, elderly nursing home patients, and the demented through advance directives.

If every moment of life is precious, no matter how painful or close to finality, why are people who are not permitted to receive assisted dying allowed to issue do-not-resuscitate orders or create advance directives that forbid intubation? We allow “natural” death to occur accidentally, and we artificially prolong life intentionally, sometimes causing great pain to revive an ancient person so he can live for a few more months. Keeping people alive well beyond when they would naturally die is as “unnatural” as assisted dying.

We should also exercise clear judgment in prohibiting someone from accessing assisted dying simply because they experience “unbearable suffering,” which is the qualifying criteria for assisted dying in some jurisdictions. The chronically depressed or autistics who develop a fixation on death, as did one 29-year-old autistic woman in the Netherlands who received assisted death last May, are not nearing a natural conclusion in their lives.

Neither was my biological mother, who chose to die at the age of 43—for the wrong reasons.

On a warm May day in 2004, my father discovered the cold body of my mother, Martha, on the kitchen floor. She committed suicide the night before by ingesting a lethal dose of various drugs, including oxycodone. Tragically, she cut decades off her life instead of properly treating her mental illness. Even though I was five, I still remember the ambulance and body bag.

People as tragically confused as Martha are not the type of people our society should be helping to die. Providing assisted dying to people whose lives are not already ending is a lazy alternative for improving mental healthcare, palliative care, social services, and the fracturing bonds of community, especially in a culture steeped in a crisis of meaning.

Unfortunately, a small and growing proportion of assisted deaths involve people whose lives are not already coming to a close. One example from 2015 of a Belgian mother with similar mental health problems as Martha devastated her son when she utilized assisted dying without his knowledge. Canada plans to expand assisted dying to the mentally ill in 2027, and some Canadians may have been granted assisted dying for financial reasons.

In the Netherlands, some elderly people who opt for assisted dying feel they have “completed” their lives but are not in a state of suffering or illness. In Belgium, those who suffer from “small ailments” and want assisted dying are called “tired of life.”

While I am critical of these aspects of assisted dying, I do not go as far as one Dispatch critic who laments the Belgian system because of the extremely rare circumstance where a terminally ill child opts for assisted dying. As of 2023, only five children who were about to die and in excruciating pain were given assisted dying in Belgium since the practice was legalized in 2014. This tiny percentage of children receiving assisted death—with consent of the parents and after evaluation by a psychiatrist and multiple physicians—hardly seems to justify a moral panic about a slippery slope.

Elderly nursing home patients whose stay in a home is expected to be permanent—who are often severely disabled, chronically ill, and won’t get better—are prime examples of people who ought to have access to assisted dying. The average nursing home resident who dies in the facility only lives there for several months to around a year before expiring.

However, the most painful experience for Rosie wasn’t being in a nursing home. By then, she had entered a dementia-induced delirium. The loss of her independence upon entering memory care was what caused her unbearable suffering. Rosie’s story is a case example of why early dementia patients should be allowed to write advance directives to be sedated and euthanized later. Once an elderly person enters permanent care, their life is coming to a close, and they should be able to decide to end it preemptively.

This is allowed in the Low Countries, Spain, and Colombia. These contracts vary from country to country, and doctors assess these cases individually. Only one case I am aware of involving a dementia patient proceeded when the patient resisted. She was severely demented and woke up from her sedative. Even in this case, the woman’s daughter told a Dutch court, “The doctor freed my mother from the mental prison” caused by her dementia by euthanizing her.

Assisted dying is not a panacea for suffering, nor should it be used as one. As the critic of assisted dying, Charles Foster, argues, personal autonomy alone is not a justification for assisted dying. Decisions about death impact more than just an individual; they impact the people left behind. Ironically, this argument precisely illustrates why denying someone a dignified death is cruel—because it is also cruel to their family.

Rosie was condemned to a fate worse than death because she was not allowed to sign an advance directive for assisted dying. Those in our family who could bear to linger with her were not spared suffering; we were consigned to suffer with her as we watched her mind unfurl and her body wither. Restricting assisted dying to certain classes of people whose lives are ending preserves an immense amount of needless pain. Cautiously expanding assisted dying laws to include dying people outside this boundary is an act of compassion.

If Rosie’s story lends itself to a future where that is possible, her suffering will not have been in vain.