Should the terminally ill control their deaths?

A year after my mother's uncomfortable decline, it's a question with which I'm still wrestling

Topics: Cancer, Life stories, Death and Dying, Human Rights, Disease, Narratively, Palliative Care,

Should the terminally ill control their deaths?The author and his mother (Credit: Daniel Krieger)
This article originally appeared on Narratively.

Narratively If you’re dying and don’t care to wait around for death, you can always book your own appointment. One simple way to do this would be to stop eating and drinking; another would be to stop life-sustaining medicine or devices. Assuming you can decide on your own, both of these methods are good and kosher as far as the law goes. A third approach, however, ventures into a grayer area of legal and ethical terrain—quaffing a lethal cocktail. In the business of ending your life, the means matter a lot more than the final result.

These were three things my mother, Ann Krieger, was pondering when she reached the final leg of her terminal illness last year, a month before Mother’s Day. After several years of fighting colon cancer, her doctor broke the news that the cancer had spread and the treatment was no longer working. There was no more they could do.

“You’ve got months, not weeks,” he said.

“What should I do?” she asked. “Should I end it now?”

“No,” he said. “You don’t want to do that.”

Actually, my mother kind of did, but the doctor referred her to hospice and gave her information about palliative care, a mode of treatment that relieves the pain of patients with serious illnesses. But in my mother’s case, the physical distress was less acute than the existential. Coming to terms with the fact that you’re going to die is elusive. For some people, like her, an attempt to manage the logistics could make it seem more doable. She and my father had given this some thought and had very specific ideas about how they wanted their end-of-life matters handled.

Six years earlier, horrified by what was taking place with Terri Schiavo in Florida, they sat my sister and me down to give us instructions. Should it ever come down to it, my parents told us, they wanted no artificial resuscitation, experimental procedures, machines or IVs—none of that stuff. They just wanted us to make sure they would be allowed to die naturally. “The idea,” my father explained to me recently, “is to be pain-free, comfortable and not go through a lot of unnecessary, costly and painful treatments which won’t help anyway.”

My mother had first-hand experience with this 21 years ago when her mom, my grandma Trixie, who was in perfect health at 85, was struck by a hit-and-run driver near her home in Queens. The doctors at New York Hospital said she had severe trauma in her brainstem and wouldn’t wake up. She was hooked up to a ventilator.

Since there was no hope of her getting any better, my mother wanted to have the ventilator removed. She believed Trixie wouldn’t have wanted to be left like that. But the doctors told her they couldn’t do that. There had been a brain surgeon, my mother once mentioned, who had wanted to try out a procedure on her.

“Is it going to help her?” she asked him.

“No,” he said, “it’s not, but I’d like to do it for research.”

She didn’t give her approval, and the doctors wouldn’t remove the ventilator. So my mother found someone high up in the hierarchy, a neurologist, who she was told might be sympathetic. She went to him and explained the situation. He was willing to give the order. Two days after the ventilator was disconnected, Grandma Trixie died.

Meanwhile, out in Forest Hills, my grandpa George Kaminsky, her husband, was on his own deathbed. Trixie had been out getting his medicine when she got hit crossing Queens Boulevard, grimly known as the “Boulevard of Death.” A few weeks earlier she had been a sure bet to outlive him.

For months afterwards, George lay in bed, helpless and wasting away, with 24-hour nurses who washed and fed him and changed his diapers. He was lucid, and asked my mother and her sister to poison him. They told him they couldn’t do that, but my aunt Nina pointed out that his medicine was probably keeping him alive. Ending his life merely by omission hadn’t occurred to him.

“It was humane to put him out of his suffering but done through his choice,” Aunt Nina told me recently. “He certainly acted on that information pretty quickly.”

He died a few days later.

I believe that the power to make choices about how and when we die, when terminally ill, should be a basic human right. But there are various arguments against it. My favorite one says that it’s not for mortals to make such decisions because we are in God’s hands, however fumbling they may be. If God wants you to die in a certain manner, the logic seems to go, then that’s because it’s part of His plan. But what if God really doesn’t care one way or the other? It would be quite an administrative headache, after all. Consider that across the globe, roughly 150,000 people die every day, at a rate of about 107 people per minute. A little human intervention could go a long way during that last bumpy stretch.

Many doctors, however, tend to think differently. Knowing this all too well, my mother had filed away the name of an organization she thought might offer some guidance when the time came.

The week she started hospice care, at the beginning of April 2011, my father, Melvin, contacted them. A few days later, they got a call from Judith Schwarz, the clinical coordinator of Compassion & Choices, who lived nearby on the Upper West Side. She came over and spent a few hours talking with my parents, explaining her organization’s mission and discussing my mother’s illness and the options available. “She was warm and it was personal,” my father said. “She was a professional who is very skilled at dealing with situations like this.”

*   *   *

Judith Schwarz, who is 68 years old, wears brown oval glasses and her hair short. She speaks with great precision, intensity and an uncanny command of the issues that comes from decades of being in the thick of it.

I paid her a visit this past spring. We sat in her spacious, sunlit living room, and as her Portuguese Water Dog slept on the floor we talked about my mother and end-of-life issues. The first thing Schwarz did was set me straight on the terminology when I asked about “assisted suicide.” The term “suicide” has a lot of baggage, she explained, whether religious, legal or moral, so to call it “assisted suicide” or “euthanasia” is to miss a crucial distinction.

“We use the term ‘aid in dying,’” Schwarz told me, “because it more accurately reflects the information and support we provide to terminally ill and suffering clients”—information about how patients might control the circumstances or timing of their death. She went on to say that the motivation for suicide, which often results from mental illness and depression, is another thing entirely. We do not support suicide,” she said, noting the difference between suicide and the “thoughtful and considered decisions” made by some terminally ill patients as a means to avoid further suffering.

When a patient in the Northeast contacts Compassion & Choices, he is referred to Schwarz, whose first order of business is to find out who the patient is and what his current medical situation entails. Then, Schwarz attempts to get a sense of what the patient is looking for. She tries to provide information to all callers, but to qualify for help, patients should be able to make their own decisions and be suffering, whether in a terminal stage of illness or not.

“There’s a lot of misunderstanding about what we do,” Schwarz said. “What we do is provide information about end-of-life choices to help patients make informed decisions that reflect their values and wishes. We don’t provide the means. We don’t administer. We don’t encourage or coerce. We have no agenda other than to provide complete and accurate information about end-of-life options.”

And in doing this, Schwarz’s role is to help a patient navigate the end of his life so he can maintain some control over it, instead of leaving it to doctors who are trained not only to lessen suffering but also to keep him alive and death at bay.

One patient Schwarz consulted last spring needed help arranging to have his ventilator removed without suffering. Schwarz told me about what the process involved, which includes requesting support from palliative care clinicians who would see to it that the man did not experience pain, hunger for air, or anxiety.

Judith Schwarz (Photo: Elizabeth Ladzinksi)

Schwarz started out as a critical care nurse in intensive care units before studying bioethics at Fordham University in the mid-1980s. Around this time, she had a profound experience involving a terminally ill friend, who tried to end her own life with medication, but was unsuccessful and woke up. Schwarz started wondering how nurses, who are on the front lines in the battle against death, deal with this kind of situation. She got a PhD exploring the questions surrounding nurse assistance in dying, which was an unexplored practice. This path eventually led Schwarz, twelve years ago, to Compassion in Dying, an earlier incarnation of what became Compassion & Choices. The organization now has sixty chapters across the country.

After so many years of working with people at the end of their lives, Schwarz has a deep appreciation for their needs. “They want to know they still have some choices; that they don’t have to just take it,” she said. A big part of what Schwarz does is debunk misinformation, like the idea that ceasing to eat and drink could be painful. It’s not, she said. Terminally ill people typically don’t have healthy appetites to begin with, she explained, so hunger pangs are unlikely. Headaches are common at the beginning, but those pass quickly; thirst or dry mouth is the biggest challenge, but it’s more discomfort than pain, and there are ways to ease it.

“I never tell patients I’m going to help them have a good death,” she said. “What I say is, ‘Let’s work together to have the least bad death possible.’”

*   *   *

Compassion & Choices isn’t the only aid in dying organization available to New Yorkers. Another, serving all fifty states with volunteers around the country, isFinal Exit Network. But unlike Compassion & Choices, Final Exit instructs terminally ill people how to end their lives with helium and an “exit mask”—self-acquired and self-administered—and does not pursue legislative reform. The group has run into legal trouble in recent years, notably in PhoenixAtlanta, and most recently Minnesota, for breaking state laws that prohibit assisting in suicide. Compassion & Choices has so far avoided such problems.

In New York City, Schwarz has nearly a dozen patients at a time, each at various stages of illness. I put in a request to meet one of her patients, but Compassion & Choices’ communications director declined due to privacy issues. Instead, Schwarz put me in touch with the husband of a patient who had passed away earlier this year.

The man, I’ll call him Thomas, was eager to talk but thought it best not to give his name because of how things had gone toward the end of his wife’s life.

On a hot morning in early summer, we sat in Thomas’ living room, which looks out on Central Park. He told me how his wife had successfully fought cancer for a decade. Then, in early 2010, the couple learned that the cancer had spread further than could be contained. That’s when his wife started to talk about managing the timing of her death. After considering places like Dignitas in Switzerland, which takes you through every step of the process, they settled on Compassion & Choices.

The couple met Schwarz, and although Thomas’ wife was concerned about how this decision might affect her family members, it’s what she wanted to do. They got the lethal dose of medicine ready for when she might decide she needed it. But not long after preparing the dose, the cancer spread to her brain and she became unable to make the decision on her own. “So that plan went out the window,” Thomas said.

Even if his wife had been capable of deciding, Thomas wonders whether she would have made the decision to take the lethal dose, after all. “What point have you crossed where you truly don’t want to live in the situation any longer?” he asked. “It sounds more clear-cut when you are talking about it in the abstract than when you’re actually faced with it.”

Nevertheless, in a state of dementia, with hallucinations of snakes, Thomas’ wife was certainly not getting much in the way of dignity or quality of life. So after nearly 44 years of marriage, he decided to stop offering liquid when she stopped asking for it.

“She wasn’t able to consciously express the desire to die,” he said. “I acted on what I believed her wishes would have been.”

It took over a week before she fell into a coma and died.

Thomas sat across from me on his sofa, holding his wife’s living will and health care proxy in his hands, still wondering if he chose the right time. Could his wife have changed her mind? Sure, she could have lived weeks or months more, perhaps, but would she have wanted that if she were able to choose?

His wife’s living will did seem to cover such a scenario, though typically such a document applies to a patient who is in a vegetative state rather than one who is conscious and talking (but not making any sense). Hers read: “If I have an incurable, irreversible condition that will cause my death within a relatively short time…I direct the withholding or withdrawal of all treatment, including nutrition and hydration, that only prolongs the process of dying.”

“I was very fortunate to have met Judy,” Thomas said of Schwarz, explaining that she had “held my hand through this process and provided advice that wasn’t coming from anyone else.” Still, Thomas is angry that the American medical system isn’t set up to deal with the complexities of the situation he faced.

“There aren’t a lot of guides for this process,” he said. “You would hope your own physician is [a guide], but they are there to treat you.”

In recent years, Compassion & Choices has tried to do something about the shortcomings—or failure, in many opinions—of physicians to guide their patients through the dying process. David C. Leven, a lawyer and the executive director of the organization’s New York affiliate, has led the effort on the legal front.

On a bright spring morning earlier this year, I set out to attend a talk Leven was giving at the Coler-Goldwater Specialty Hospital and Nursing Facility on Roosevelt Island. About 25 doctors and nurses were there to learn about the importance of palliative care and how the related laws work in New York. When Leven finished, a slight bald man with a crisp British accent stood up and made an announcement to the room.

“I would urge you to make the diagnosis of dying,” he said. “And then everything falls into place.”

“This is not new,” a doctor chimed in. “It’s as old as medicine.”

Though the commenter declined to give his name, he told me he was a former medical director at the hospital and was “through being on the front lines.”

“Why do you feel the need to urge doctors to diagnose dying?” I asked.

“Nobody tells them to,” he said. “Nobody reimburses you for that diagnosis.”

Later, Leven and I walked along the East River toward the Tramway back to Manhattan. We passed a row of cherry trees bursting with pink blossoms. The petals were starting to fall off, carpeting the ground below. It was too warm and sunny to be discussing suffering and death, though we did just that as we rode the tram over the river. We got off, walked for a few blocks in Midtown, and found a café. After getting lunch and chatting about the Knicks, we returned to the subject at hand and Leven’s eyes grew focused.

Leven, a spry 69-year-old with silver hair, began working with Compassion & Choices ten years ago, after providing legal representation for prisoners and the poor for decades. He didn’t know much about end-of-life issues, other than milestones like the 1997 Supreme Court ruling that individuals have no constitutional right to aid in dying. This ruling left it to states to decide the issue for themselves. The issue, he told me, had only gained momentum in recent years, thanks to the Terri Schiavo case and an Atul Gawande article in The New Yorker two years ago.

“We are over-treating people at the end of their lives,” Leven said. “People who are dying often suffer unnecessarily because they’re receiving aggressive interventions they may not want and don’t benefit from.”

The solution, in his opinion, is to provide patients with more information so that they can make informed end-of-life decisions that suit their needs. To this end, Leven helped enact New York’s Palliative Care Information Act, which took effect in February 2011. The act requires that doctors provide information and counseling to terminally ill patients who want it—which turns out to be most of them. But it seems that the vast majority of doctors don’t even know about the law. (In the group he spoke to at the hospital on Roosevelt Island, less than a quarter had heard of it.) Another problem is that some doctors may reject a legal mandate that tells them what to do with their patients, which is why the New York State Medical Society opposed the legislation. In Leven’s view, this shouldn’t be an issue because it is supposed to be part of a doctor’s job description.

“Doctors already have an ethical obligation to provide their patients with a diagnosis, prognosis, treatment options, and the risks and benefits of those options so that patients can make informed decisions,” he said.

Leven cited studies showing that a large percentage of doctors don’t have this conversation with their patients or don’t do it well. If they did, patients would be much better off, he said. For instance, when the big picture is explained to them and the options are reviewed, patients typically choose less aggressive treatment and opt more often for  palliative care and quality of life than for extending it. (Gawande made the same point in his New Yorker piece.)

Patients may get referred to hospice care, set up a do-not-resuscitate order, and put other measures in place to make sure that doctors don’t provide treatment against the patient’s wishes. (New York ranks 49th in the country in hospice enrollment.) The result, Leven said, is reduced medical costs, better quality care, and ultimately, a death that is peaceful and dignified; all from a simple conversation between the patient and his doctor.

Dr. Alan B. Astrow, Chief of Hematology and Medical Oncology at Maimonides Medical Center in Brooklyn, said he agrees that it is a doctor’s responsibility to have this talk with patients. But he told me he understands why they often don’t.

“Many doctors avoid having to tell the patient that things are not going well and that the patient is at risk of dying in the near future,” Astrow said. “It’s hard to tell people, and also patients don’t really want to hear that news.”

However, he does not believe that the solution is a statute ordering doctors to do this—a point he made in an article in the New England Journal of Medicine last year. Astrow instead favors “more training in how to discuss end-of-life care issues with patients.” (David Leven agrees that doctors need more training, and is currently working on a bill that would require all healthcare practitioners in New York to get training in pain management and end-of-life care every four years.) Astrow acknowledged, however, that even with training, such care will still be very difficult for doctors. He stressed that he does agree with the goals of the Palliative Care Information Act, which provides a path toward “good medical care,” but he doesn’t think a legal remedy is enough to bring about a change in the overarching medical culture.

Considering that most doctors still don’t know about the Palliative Care Information Act, which isn’t enforced unless specific complaints are made to the New York State Department of Health, Astrow does have a point.

This is why Compassion & Choices, with a national staff of forty, has been trying to pick up the slack, making information available to anyone who needs it. After all, roughly a million and a half Americans die of terminal illness every year.

“Too many people are having bad deaths,” Leven said, “and it’s in some measure because they don’t have all the information they should have.”

Some religious groups, of course, have starkly different ideas. The Catholic Church has been vocal in its criticism of assistance in dying and, particularly, of Compassion & Choices. Last year, the United States Conference of Catholic Bishops laid out its official position in a statement. The bishops make a range of well-worn arguments, including the sanctity of the Hippocratic Oath and how “suicidal” people need counseling, confusing the distinction between those who are truly suicidal—who do not want to live—and someone who is terminally ill, who wants to live but chooses to hasten their death because they can’t prevent it. The bishops also argue that allowing people to have a say in how and when they die will inevitably lead to abuse of the practice.

“Taking life in the name of compassion also invites a slippery slope toward ending the lives of people with non-terminal conditions,” the statement said.

However, the many restrictions in place make such abuse virtually impossible. In the two states that have Death with Dignity Acts, Oregon and Washington, the number of terminally ill patients who choose to end their lives this way is quite small: about 600 in Oregon over the past 15 years and 150 in Washington from 2009 to the present. One-third of the people who get the prescription for the lethal drug, typically a barbiturate, never actually take it.

Little by little, the rights of terminally ill patients are getting recognized, and it’s conceivable that someday aid in dying will be mainstream in the US. Massachusetts voters, for instance, will decide in November the fate of a proposed Death with Dignity Act in their state.

*   *   *

In the last month of my mother’s life, she was in at-home hospice care and housebound. She passed the time sitting in her chair or lying in bed reading, watching TV, or doing crossword puzzles. She wasn’t in great physical pain, but she was distressed by her inability to eat or drink more than a tiny amount and felt increasingly fed up with the whole situation.

Judith Schwarz had advised her to stay at home in order to maintain control of the situation. (Under hospice care, there is generally no police inquiry into the cause of death, since a doctor has already determined that the individual is dying. This protects anyone who could be held accountable for helping to hasten death.)

The author with his mother; as a child and as an adult. (Photos courtesy Daniel Krieger)

I was living in Japan at the time, and my father was home with my mother as she veered closer and closer toward her end. Each day was getting harder for her.

“What am I doing?” she asked my father several times. “Life is not worth anything like this.”

Her hospice nurse, Nina Schneider, was part of a team sent by MJHS Hospice and Palliative Care, which also included a doctor, a social worker and a rabbi. Schneider told me when we met last spring that my mom’s quality of life had been deteriorating as April dragged on. She said my mom had told her, “I’m ready.” But my mom knew better than to ask a hospice nurse for help with that task. The goal of hospice is to keep the dying patient as comfortable as possible until death naturally occurs.

The associate chief medical officer of MJHS, Dr. Bernard Lee, told me that if a patient decides on her own to stop nourishment, medicine or machinery, no one will stand in her way.

About a week before Mother’s Day, in 2011, my mom told my dad again that she was ready and wanted to go ahead with it. But there was one hitch. Because of the havoc wreaked by her colon cancer, she could no longer drink enough liquid to get the eight-ounce cocktail down. She just couldn’t do it. It was not going to work. Her appointment with death would have to be postponed.

Then, after not eating or drinking anything for the next couple of days, she fainted. The doctor said she was severely dehydrated and suggested she go to the hospital for fluid, or that she at least hook up to an IV at home.

“I don’t want to go to the hospital,” Mom said. “I don’t want an IV. All I want to do is have morphine and sleep. I want to go to sleep.”

They gave her what she wanted and early the next morning, on May 6th, when my father went into her room, my mom’s body was shutting down. She was unresponsive.

“Mom is gone,” the e-mail from my dad said. “She was comfortable and without pain.”

The cause of death seemed to be dehydration, though my dad wonders if the morphine played a role. Either way, it’s what she wanted, though it came later than she would have liked. She was 79.

“It’s hard to wait to die,” Schneider, the hospice nurse, told me. “We try to give as much support as we can.”

But sometimes, a dying person doesn’t want support or empathy or morphine. They just want to get it over with.

“I’m ready,” my mom had said often during her final, miserable decline. “I’m ready.”

*   *   *

Daniel Kriegera contributing editor at Narratively, is a journalist based in New York.

Elizabeth Ladzinski is a visual journalist and Southern transplant inspired by the social impact of documentary film and photography.

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