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Linda
Linda and John were at one of the most reputable hospitals for cardiac disorders in the country. Over many months, Linda had become increasingly debilitated by a poorly functioning heart valve. Her local cardiologist had recommended surgery by the “A-team” in this hospital. Three months after the surgery, she remained in the ICU attached to machines.
John, a civil engineer, had made advocating for his wife a second vocation. He had achieved an impressive understanding of the physiology of the heart and the treatment approaches to her disease and spent most of his days drilling the physicians about each detail as it arose. Their interactions were almost entirely about physiology, lab values, and medication dosages. That is why after three grueling months, with one life-threatening complication after another, John had no idea that his wife was dying.
A mutual friend had shared the highly detailed digital journal John had been keeping of his wife’s medical condition for the last six months. By the time I spoke with him, he was frustrated and exhausted. Although it was immediately clear to me, based on her constellation of medical problems, that his wife would die soon, I realized he hadn’t heard that information from any of her physicians. I gave him my opinion as gently as I could, and he was less surprised than I expected. At my suggestion, he requested a palliative care consultation. Their recommendations confirmed my sense that continued treatment was causing suffering without ultimate benefit to Linda. John decided that it was time to disconnect the machines keeping Linda alive and she died shortly thereafter. John was left with tremendous confusion and a grief that would take years to unravel.
While John attempted to learn about every medical treatment proposed, he had been distracted from his wife’s impending death by the din of continued treatment. The doctors, who continued to shoot for cure rather than care, no doubt wanted to do their best for Linda, and for John. But they too were on the conveyor belt—unable to lift their heads out of the chart to look at this suffering husband and tell him what he desperately needed to know. And what they must have known.
Over the years, I have come across many family members like John. Incredibly committed and knowledgeable. They roll up their sleeves and get to work, but without honest guidance from doctors, their energy can be diverted from where it is most needed. Such guidance requires medical experience, which most doctors have, but, more important, a rarer yet crucial skill—the ability to break bad news and reassess goals of care. John and Linda’s doctors, expert in the care of individual organs, did not have the skills to provide this key context and perspective. At the moment, palliative care is the locus for this skill set, although I hope that one day every doctor will possess it.
A Tiny Flight of Pureed Food
I’ve watched many people die. Patients, family, friends. And, as you can glean from this book, far too many of them have been bad deaths. What makes a death bad? I think it depends on the person. A former colleague at Vital Decisions told me that her father, a “crusty old Italian,” once told her that if he couldn’t wipe his own backside, he didn’t want to live even one more day. My own worst fear is being alone in a room, unable to communicate, unable to connect with my loved ones. Each person has her own needs and preferences around death, and attending to them, down to the smallest of details, can enhance the life of a dying person.
I recently visited the Zen Hospice Project (ZHP), a six-bed home in the Hayes Valley neighborhood of San Francisco. Originally opened in 1990 in response to the AIDS crisis, the Hayes Valley Guest House was redesigned and reopened in 2010 as a licensed residential care facility for the chronically ill. It has a twenty-four-hour nursing staff, all of whom are trained in mindful, compassionate care. I referred several patients there during my year on the palliative care service at UCSF, but I had never visited until recently.
The Zen Hospice Project is housed in a beautifully painted Victorian on a tree-lined street. The front door is heavy and carved, with a leaded glass window. From the moment that I walked into the house, I was smitten. Warm Persian area rugs, comfortable furniture in clusters, lamps, and a wood-carved banister. There was a scent of banana bread, and we followed our noses into the kitchen, which was large and sunny, painted in warm yellows and greens. Fresh herbs were drying in a vase in the corner. A basket of citrus fruit sat on the counter.
The chef welcomed us with a big smile. She was in the process of assembling food for one of the residents. He was in the final stages of his illness and had little to no appetite. But she described what she had prepared for him with the enthusiasm of a chef preparing a gastronomic sensation for a crowd of foodies. The portions were miniature and she had set them on a small plate in three distinct samplings, like a tiny flight of pureed food. Each portion was a unique and vibrant color, and they complemented one another in a gorgeous palette. A nurse entered the kitchen with a different patient’s tray. It, too, held only a small plate. I noticed that this plate’s three portions were completely uneaten except for tiny indentations from the tip of a fork. I asked the chef how it felt to cook food for people who could barely eat it. She smiled. It had been tasted, she said, that’s what mattered. Her job was to make known that she was downstairs cooking for the patients, or “guests.” That she cared. That she wanted them to experience whatever they could, and no more. No pressure to eat anything, and certainly not everything. Smelling, tasting a little, and feeling loved were all she hoped for from them.
Zen Hospice’s six beds serve a very diverse population, averaging sixty people per year for an average stay of four weeks. While the cost of hospice care is covered by insurance or the government, food and lodging costs are not. Nonetheless, the Zen Hospice Project strives to be means-blind, relying on charitable contributions, support from the local university hospital and a charitable foundation, and whatever amount someone is able to pay. The level of care administered to each patient is independent of what he pays as well as his insurance status. Each one receives the same careful attention to his food preferences, his comfort, and his dignity.
I looked around, thinking of my patients in the ICU. The breathing tubes that sit in the center of a mouth, rendering it almost impossible to clean. The artificial nutrition that drips through plastic tubes that weave through their mouths and noses into their stomachs. The arms, threaded with IVs, clamped by blood pressure cuffs, and, finally, tied down to the bed rails to prevent the patient from ripping these foreign objects off their dying bodies. While there is certainly a role for ICU care in many instances, for those at the end of life, I wish for better.
The hospice philosophy is to help the dying die in as comfortable and warm an environment as possible. Zen Hospice kicks this concept up a notch, providing for its six residents an aesthetic experience at the end of life that contrasts dramatically with the anesthetic experience that is the dying process in modern medicine.
The next time I walked into the ICU, I couldn’t help but notice how cold and fluorescent it felt.
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Dr. Jessica Nutik Zitter, MD, MPH, pictured above, is a national advocate for transforming the way people die in America, and is the author of the newly released “Extreme Measures: Finding a Better Path to the End of Life.”
She is a regular contributor to The New York Times and her writing has appeared in The Atlantic, Time Magazine, Journal of the American Medical Association, The Washington Post and many other publications.
Dr. Zitter’s work is featured in the Academy and Emmy-nominated short documentary “Extremis,” available on Netflix. Her media appearances include CBS Sunday Morning, NPR’s Fresh Air with Terry Gross, The Doctors, The Leonard Lopate Show, and a Dr. Oz special, “The Death Show.”
Committed to mainstreaming conversations about death and dying, Dr. Zitter co-created a high school curriculum on Death Education that won top honors in the OpenIDEO End-of-Life Challenge. The idea was piloted at two Bay Area high schools in 2017 and is featured in a forthcoming documentary. In addition, Dr. Zitter co-founded and served as the first medical director of Vital Decisions, a telephone counseling service for patients with life-limiting illness.
Learn more about her work on her website or sign up for her newsletter.
