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“You Don’t Know How I’m Feeling”: A Plea for Death with Dignity

“That’s rubbish.”

My new friend — I’ll call her Sylvia — lay supine on her bed, staring bleary-eyed at the ceiling. White bedsheets swathed her long, gaunt limbs, and her sickly pallor startled me.

“You don’t know how I’m feeling, and you could never come to know right now,” she continued.  “Neither could the people who have made it so damn difficult for me to just die already.”

I had served as a volunteer at Sylvia’s nursing home for almost 10 years when she confided in me, leading me to rethink my view on physician-assisted death. Over the years, I’ve often pondered whether elderly patients like Sylvia should be able to hasten death in order to halt their suffering. But Sylvia’s framing of the issue was mostly novel for me.

Just seconds before, I’d tried comforting her by saying that I could imagine how horrible it must feel to be battling advanced colon cancer, to have endured five major surgeries in the past six weeks, to have lost her life partner and a number of close friends and to now live alone in an uncomfortable bed, which made every fleeting second feel like an “unbearable eternity.”

Sylvia had once — before she ended up in this “wretched place” — lived extravagantly. An antique aficionado, she told me that gems she’d collected from her world travels adorned the walls of her former home. Her old wardrobe, I learned, inspired envy. Here, she had little to show for it, save for a tailored evening gown, which she brought for her own burial.

Her late husband was six-foot-something: “towering, debonair, stunning.” Sylvia cringed at the mere thought of children, but animals? She could gush about them, if only she had the energy. In her will, she earmarked most of her wealth for a local animal shelter.

When she learned that I recently purged many of my possessions to live more simply, she darted a contemptuous glance at me.

“I always preferred to live with more,” she deadpanned.

But illness and old age sapped her of an appetite and her previous enchantment with flowers. Now she didn’t even care for chocolate-glazed coconut macaroons, and she looked blankly at the formidable moth orchids that stood atop the dresser in her room, gorgeous arcs of blooms that the other residents admired from afar.

“If I lived in Oregon, where physician-assisted suicide is allowed, things would be different,” she revealed, almost whispering, surely to avoid alarming the nurses and aides who flitted in and out of her room.

I want to render Sylvia’s words as I remember she expressed them to me. However, the term “physician-assisted suicide” is sometimes considered a misnomer, simply because people who request it do so as a desperate form of self-preservation — the opposite of suicide — to maintain some dignity and control over the way they die.

In physician-assisted death (PAD), a doctor provides medication of a lethal dose to a suffering patient per his or her request. PAD is sometimes confused with euthanasia, but the distinction is important. In euthanasia, a doctor actually administers a life-ending combination of drugs. With PAD, the patient self-administers. Foregoing a life-saving treatment and withdrawing a life-sustaining one are in a different category altogether because both are understood as letting a disease take its course.

Sylvia’s words struck me hard, leaving me stumped and sad. All I could muster was a clichéd but heartfelt reply that life — even her life — was worth living.

In that moment, I felt that the nursing home staff and volunteers like me had failed Sylvia. How had we allowed her to feel like dying was the best course of action? Perhaps if we had tried harder to make her feel more comfortable and loved, she would think differently.

In 1977, a group of physicians and terminally ill people challenged a statute in Washington state that criminalized doctors who assisted in the death of patients. The case reached the Supreme Court, which ruled that the legality of PAD would be left up to the states. Today, PAD is authorized in Oregon, the District of Columbia, Montana, Vermont, Washington and Colorado.

Where it is legal, PAD is tightly regulated. Patients must be adults expected to die in six months or less who possess decision-making capacity and are physically able to self-administer the lethal dose of the drug. Although subtle differences exist between the jurisdictions in the qualifying criteria, Oregon has become the model for PAD; there, the requesting patients must make two verbal requests, separated by 15 days, as well as a written one in the presence of two witnesses. Finally, two physicians must sign a document confirming that the patients meet the aforementioned requirements.

Although the “right to die” has been the subject of lively debate since antiquity, roughly two-thirds of the United States population, according to a Hastings Center report, agree that PAD should be available as a last resort for intractably suffering patients.

Similarly, most physicians believe PAD should be available as an option for terminally ill patients who request it. But only a third of them say they would be willing to participate in the procedure.

On one hand, it seems cruel to tell people who request PAD after having weighed their decision that they have to just stick it out.  The patient’s autonomy and the professional obligation of doctors to relieve suffering are important considerations. The medications keeping people alive might be the same ones keeping them asleep, leaving them breathing — but not really living. Others contend that PAD should be a personal decision, not a question of contentious public and legislative debate.

On the other hand, some critics — including disability advocates — fear legalizing PAD might make it an easy way out, creating a path for anyone to decide that their bodies or minds aren’t good enough to live. Critics commonly assert that doctors should be using their skills to lengthen and optimize life, not curtail it. Others point to PAD’s incompatibility with the medical vow to do no harm. What’s implied here is that hastening death constitutes a harm. This is related to the principled objection to suicide, which often has religious origins. The premise, framed baldly, is that life is good, blemishes and all, and any attempt to prematurely end it is categorically wrong.

But the requirements in place in jurisdictions where PAD is allowed are already rigorous enough, acting as guardrails against concerns many critics have raised. They even inherently rule out individuals with devastating, slow-progressing neurodegenerative diseases, like Alzheimer disease, since afflicted individuals estimated to live only six more months would typically no longer satisfy the soundness of mind criterion. People who have been left unable to speak as a result of an injury or condition would also be ineligible for PAD in jurisdictions where it is accessible, although they might express their desire to die nonverbally. Clearly such cases are enormously difficult, and they beget no easy answers.

Not all who go through the process of obtaining the medication actually take it. Often, the comfort lies in the presence of an option that promises relief. In the words of Brittany Maynard, who at 29 years old was diagnosed with an aggressive brain tumor and eventually obtained access to PAD in Oregon, “Having this choice at the end of my life has … given me a sense of peace during a tumultuous time that otherwise would be dominated by fear, uncertainty and pain.”

Before Sylvia challenged me, I believed that there was hope in every terminally ill case and that letting someone die — even if it was that person’s decision — was surrender. Life seemed too beautiful to cut short. Surely, something out there in the vast world, ranging from a medical therapy to human affection, could reaffirm a person’s desire to live on. The reality that many elderly residents I befriended frequently expressed worry that they had become burdens — financial, temporal, emotional — on their loved ones also made me question the possibility of a truly autonomous decision.

But today, I’m sympathetic to the position that people like Sylvia should be allowed to expedite their own deaths. Sylvia was right: as a healthy 21-year-old woman, I could never truly understand how she felt. It was presumptuous, as she pointed out, for me to make such a call on her behalf and then impose it on her when she clearly did not agree.

Sylvia passed away almost three months after that first encounter. A week before, she wondered if her feet could possibly die before she did; they were so cold, she told me, and seemed lifeless. That was the last time I saw her, and I left her room thinking, tearfully, I hope she dies soonMy wish felt violent and it repulsed me. But I now understand that caring for Sylvia meant respecting her wish for an end to her torment.

When options from palliative care to nonmedical therapies have been exhausted with a person still longing for PAD, it seems wholly unfair for someone who is healthy — a well-intentioned physician, government official or someone like me — to tell that person the worth of his or her own life.

With many dear friends in their 70s, 80s, 90s and even a few past 100, my own thoughts on the emotionally laden questions of end-of-life care are continually maturing. But, as Sylvia helped me realize, it’s all too easy to get caught up in a loud debate with other healthy people about such matters affecting the terminally ill. Sylvia had a point and a perspective we lack. It’s time we start listening.

Hanan Rimawi Hanan Rimawi (1 Posts)

Pre-Medical Guest Writer

Tulane University

An undergraduate senior based in New Orleans, Hanan Rimawi studies neuroscience and public health. She and a few friends started a running project at Tulane called Bridging Generations to foster connection between the young and old.