End-of-Life Choice, Palliative Care and Counseling

Physician-Assisted Death Is Illegal in Most States, so My Patient Made Another Choiceby Sonja

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by David Muller
Health Affairs
October 23, 2012

Charles—Charlie, as I came to know him—greeted me at the door wearing only his boxer shorts and a full head of tousled white hair. Ninety-one-year-old folds of skin hung loosely from his lanky, bent, but powerful frame.

My first impression was of an aged Abraham Lincoln: strong and gangly, dignified despite the boxers, with a mischievous smile that I would later learn never left his face except when his pain overwhelmed him. He had the grip of a man half his age, and after shaking his hand I had to look to make sure all my fingers were still there.

I was seeing Charlie because he’d been referred to Mount Sinai Visiting Doctors, a home care program by physicians for homebound elderly patients in Manhattan. The first day I visited him, Charlie led me into his one-bedroom apartment, using the walls and the backs of chairs to make his way into the living room. Cluttered and lived in, it was an obstacle course of well-worn furniture and fraying rugs. No matter where you sat, bowls of Life Savers and foil-wrapped chocolate kisses were strategically within arm’s reach.

Over the years Charlie had gradually limited his usual daytime range to within ten feet of his sofa, whose sagging cushions welcomed the weight of his aching bones. He invited me to sit with him and, in his plainspoken, self-effacing manner, responded to my questions by telling me his life story.

A Full, Long Life

Charlie was born on Manhattan’s Lower East Side, the middle of five children of impoverished immigrant parents. Their union had produced four daughters and two sons, but the other boy, Charlie’s brother, had died in childbirth. Charlie’s sisters all worked in sweatshops. In 1911 one of the older girls survived the infamous Triangle Shirtwaist Factory fire.

When his father died soon after Charlie’s fourth birthday, his mother believed that her only option was to place Charlie in an orphanage. He thrived there, working odd jobs throughout his teens and attending school at night. He eventually left to study at Cornell University, getting as far as his junior year before dropping out when he could no longer afford the tuition.

Soon after leaving Cornell, he ended up in South America, working for an American construction company in British Guiana (since independence, known as Guyana). This was in the early years of World War II, and the company was secretly building a naval base for the British. Many workers succumbed to malaria and other tropical infections. But Charlie not only survived, he also came to love both the climate and the Guyanese with whom he worked.

After Pearl Harbor was attacked, Charlie enlisted in the US Navy and was assigned to a base in Virginia. By now acclimated to the jungles of South America, he complained bitterly of the cold Virginia winter. When his commanding officer asked for volunteers for dangerous duty—in warmer weather—Charlie immediately signed on.

He was assigned to a unit called the Underwater Demolition Team (UDT), later known as frogmen and today called Navy SEALs. The UDT’s mission in the Pacific Theater was to secretly swim ashore and clear beaches of mines and other defenses before the Marines arrived for the “official” invasion. Having survived seven such missions, Charlie vividly and gleefully remembered the signs his team would post on the beach when their work was done: “Welcome Marines! This beach cleared for you courtesy of UDT Team 6.”

He returned from the war a decorated hero, got married, and enjoyed a remarkably successful career on Wall Street, working until the age of eighty-eight.

Declining But Still Sharp

By the time we met, Charlie had lost his first wife to cancer after a prolonged illness. He’d tended to her himself, standing guard at her request to protect her from hospitalizations that might have extended her life but would also have extended her suffering.

Charlie married again after a long friendship with a woman who’d been close to him and his first wife. He and his current wife had maintained separate residences for years—the key to their very successful marriage, they claimed.

At this point, in his nineties, Charlie had debilitating back and leg pain from severe spinal stenosis, a condition that compressed his spinal cord and nerves. It caused his walking to be so unstable that he was prone to falls. Charlie had seen a long list of neurologists, surgeons, and spine specialists, none of whom had been able to relieve his pain. For the past few years he’d been refusing all offers of medical care or help at home.

As his ability to walk declined, he’d retreated from the outside world. He was no longer able to shop for food or see friends, and he neglected things like his failing vision and hearing loss. Within the past two years he’d lost thirty pounds. He was sleeping poorly and was probably depressed.

Despite all of this his mind was remarkably sharp, and he was as fiercely independent as ever. Charlie made it extremely clear to me on my first home visit that he wasn’t interested in any medical or surgical intervention or in being hospitalized. He’d appointed his wife (whom he’d known for a quarter of a century) as his health care proxy, and he’d signed a do-not-resuscitate (DNR) order.

I was glad that he’d given these end-of-life issues such careful consideration, and that he felt comfortable sharing his thoughts about them with me even on our first visit. Because so many patients never address advance directives at all, it’s an enormous relief for a doctor to meet someone who’s already thought them through, and it certainly helps frame decisions about any further care.

At the same time, it’s not unusual for patients to have made decisions about their end-of life wishes and goals of care without fully appreciating the many ways things might play out. In my experience, it often takes several deliberate, thoughtful discussions between a doctor and a patient to consider the range of possible outcomes and anticipate what kinds of decisions might need to be made.

I wondered if Charlie understood that even with a DNR order, there were situations in which he might be resuscitated—for example, if he ended up unconscious in an emergency department without any record of his wishes, or if emergency medical technicians arrived at his home and couldn’t find the appropriate paperwork. I also wondered whether he was really against ever being hospitalized, even if it was for something that might easily be corrected with a brief hospital stay.

During the first few months after we met, I tried my best to gain Charlie’s trust. We needed to talk through these complicated medical issues, and it was important that I probe the depths of his convictions and understanding about remaining at home no matter what. I also wanted to adjust his pain regimen and get him some personal help at home.

At first, he adamantly refused both. But after I’d visited him a few times, he agreed to try something new. After a couple of attempts with medications that didn’t help, his pain finally lessened. Next we began addressing his mood, and much to my surprise he was open to trying an antidepressant.

After several months of waxing and waning symptoms, his pain was slightly better, his sleep had improved, and he reported feeling less depressed. But despite feeling better, he’d fallen two times in his apartment in as many months and was generally much weaker. Other than an occasional visit from a physical therapist, he remained unwilling to accept any help at home.

We had several more discussions about his end-of-life wishes. I walked him through some detailed descriptions of what might happen in various situations (stroke, heart attack, fall with major trauma, overwhelming infection) and how we would address each event. He was unwavering in his hope that he could remain at home and not have his final days or weeks marred by aggressive medical care.

During one visit, Charlie asked me some questions about how quickly people die depending on what life-threatening event or illness they have. We spoke in very general terms, but with every scenario he was dismayed at how long the end of life might take and wondered aloud how one might shorten it.

Here was a man who’d had severe, unremitting pain every day for at least the past three years. He’d faced death many times before, struggling to survive poverty on the Lower East Side, watching friends die in British Guiana, invading enemy territory during World War II, losing his wife to cancer. He’d lived the most self-sufficient life imaginable, and he’d repeatedly expressed the wish to be left to his own devices in his own home despite his relentless decline.

Only later did I realize that he was probably probing for information about aid in dying. I also realized that I hadn’t given him an opening to ask about it.

Discussing A Hastened Death

Doctors know that many patients facing chronic, debilitating, or life-threatening illness think about a hastened death. Doctors also know from experience with Oregon’s Death with Dignity Act, which was enacted in 1994, that most people who do have such thoughts benefit enormously from simply discussing them, being reassured that these feelings are common, and knowing that help is available.

Under those circumstances, a vanishingly small number of people ever act on their desire to relieve their suffering by ending their own lives. In 2004 one in fifty terminally ill Oregonians had a conversation about aid in dying with their doctor; only one in a thousand used the legally prescribed medication to end their lives.

In the rest of the United States, an enormous gap exists between the thoughts many of us will have about aid in dying when we are hopelessly or terminally ill and our willingness to discuss those thoughts with a doctor. The reasons for that gap include the enormous social stigma surrounding death and dying, the fear of being labeled “suicidal” or “cowardly,” and the fear of alienating or disappointing one’s family members or physician.

The fact that doctor-provided aid in dying is illegal almost everywhere in the United States adds to patients’ fears about discussing their concerns. It prevents them from learning that they might have other good options, including better ways of managing their symptoms. It also denies them the reassurance of knowing that their doctor won’t abandon them as they near the very end.

People are reluctant to confide in their doctor about many other concerns that they feel uncomfortable sharing. Depression, incontinence, and anything to do with sex are perfect examples. Given that we doctors know what’s likely to be on our patient’s minds, and how difficult it might be for them to confide in us, isn’t it our responsibility to initiate these discussions?

Consider these two statements:

“Mrs. Jones, it’s not uncommon for women your age and with your medical history to sometimes have accidents with their urine. This might be something you’ll never have to deal with, but if it’s ever a concern, I hope you feel comfortable telling me about it. I’m comfortable discussing it, and there are actually a variety of things that can help.”

“Charlie, it’s not uncommon for someone in your condition to think about wanting to control the circumstances of his own death. This might be something you’ll never have to deal with, but if it’s ever a concern, I hope you feel comfortable telling me about it. I’m comfortable discussing it, and there are actually a variety of things that can help.”

Both Mrs. Jones and Charlie might be plagued by misgivings. They might have no one in whom they can confide, yet they certainly deserve to have their concerns addressed. Isn’t their doctor the logical recipient of that confidence? Who better to provide them with information, counseling, and reassurance? It seems so obvious. But for end-of-life care, that’s not how it usually happens.

In 2009 California became the first state in the nation to pass legislation—the California law is called the Right to Know End-of-Life Options Act—requiring doctors and health care organizations to provide terminally ill patients with comprehensive information and counseling about their legal end-of-life care options. Even so, the law was watered down from its original form, under which doctors would have been required to provide such information to patients whose prognoses suggested they had less than a year to live. Now the law merely allows doctors to give such information to patients who request it.

Although the California law was a step in the right direction, it was just a baby step. Essentially, if—but only if—patients know enough to initiate an end-of-life discussion, doctors can’t withhold critically important information from them about prognosis, hospice and palliative care, and advance directives.

On its surface this seems like an absurd thing to legislate, until you realize that withholding such information is not at all uncommon among American doctors. Discomfort with death and dying, inexperience with palliative and hospice care, and inadequate reimbursement for patient care that is time intensive are among the things that prevent doctors from keeping their patients well informed about this subject. Even in states like Oregon and Washington, where aid in dying from a doctor is legal, patients must first request that aid. That is a substantial hurdle for an already vulnerable, suffering person to overcome.

Informing patients of all of their options is good clinical practice. So is reassuring patients who are faced with a life-limiting illness that thoughts of a hastened death are common, and encouraging them to discuss these thoughts openly. Waiting for patients to muster the courage to ask us is disingenuous and irresponsible.

Charlie’s Decision

I never got that far with Charlie. His wife called one day to say that he’d fallen again, but this time he had severe leg pain that wasn’t going away. When I arrived at his apartment the next morning, he was in bed, comfortable if he lay perfectly still, but in great pain if he moved. He was upset at what he considered his foolishness in having fallen yet again, and he was frustrated by his sudden loss of independence. He had a large bruise over his left hip, his left leg was now shorter than the right one, and his left foot was rotated outward, almost as if he was splayfooted on only one side. These were all telltale signs of a broken hip.

I outlined various options for him to be evaluated and receive medical and surgical treatment. Charlie was absolutely unwilling to go to the hospital or to consider any intervention that might prolong his life. He informed his wife and me that he was ready to die. He wanted to know what his options were. Could I provide a medication that would end things quickly?

I explained to Charlie that in New York State, no doctor could legally take an active part in helping him end his life, and that included providing a lethal dose of medication. If he was determined to let this event end his life, he could stop eating and drinking, in which case it might take as long as seven to ten days before he passed away. I told him that I could provide medication during that period that would prevent him from being uncomfortable, both from his hip pain and from any other distress.

There was no way to do this more quickly.

In all fifty states, it’s legal for mentally competent patients with life-threatening or life-limiting illness to voluntarily stop eating and drinking. Yet it’s not a good option for many patients. Charlie’s wife wasn’t going to leave his side until this was over, and the burden of watching him rapidly decline would surely be tough to bear. Dying by voluntarily stopping eating and drinking can take far more time than most people expect, and it requires more vigilant oversight than most doctors are prepared to provide.

Charlie was disappointed. But he was resigned to taking that course of action if it was the best I could offer. His wife understood his desire, but she was visibly upset. As she walked me to the front door, she expressed her frustration. Where was the humanity in letting someone like Charlie suffer for so long? What sense did it make to prolong the death of a man whose mind was clear and whose wishes were so consistent with the way he’d lived his life?

Three days after Charlie fell, another doctor from our practice saw him at home in response to his wife’s concerns about his level of comfort. The doctor reviewed Charlie’s care plan and wishes, and agreed with the decisions Charlie, his wife, and I had made.

Seven days after the fall, having taken only pain medication and rare sips of water, Charlie was still awake enough to tell me that he wasn’t afraid of death; he welcomed it. He still had some pain but was generally comfortable. At home, and with his wife by his side, he was at peace and felt in control, something he valued above all else.

Eleven days after the fall, a day after his ninety-second birthday, Charlie passed away in his own bed. He’d been preparing for this moment for years, and I felt privileged to help him achieve his aims. He did leave me wondering and worrying, though, about all of the people who, by virtue of being less well prepared, are unable to choose a gentle, compassionate death.