Reprinted from The New York Times

How to Make Doctors Think About Death

End-of-life treatment guidelines would help families, physicians and nurses confront the inevitable with care and compassion.

Celia Jacobs

By Theresa Brown

April 27, 2019

My patient, an octogenarian with pneumonia and acute leukemia, was too frail to tolerate the standard treatment for his cancer, and trying to cure his pneumonia with intravenous antibiotics, when the leukemia had already compromised his immune system, would only have weakened him further. It made sense to switch him to “comfort measures”: to focus on alleviating his suffering rather than curing him.

It would also make sense to have general treatment guidelines for situations like this, guidelines to indicate when comfort, not cure, is most appropriate. But no such guidelines exist.

Which is why the patient’s family physician could come to the hospital, imagining himself as the cavalry, and switch the patient back to active treatment, including full resuscitation if he had a cardiac arrest. The patient was so sick that active treatment necessitated intensive care.

I took him to the intensive care unit myself. When I got there, I got into an argument with the receiving nurse about the patient’s status.

Looking to defuse the situation, the nurse apologized. “I hate these cases where there’s no point to what we’re doing,” he said.

No point. The patient’s stay in intensive care was the clinical equivalent of bailing out a sinking boat. He might gain a little time, but not much.

Modern health care accomplishes great feats of healing every day. But life ends; there are patients for whom real healing has become impossible. Their bodies have simply taken too many hits. Aggressive care can push back their death for a few days, but it is unlikely to keep them from dying soon.

These situations tend to be obvious to clinical staff, and especially nurses. We administer the hands-on care. But for those around us — physicians, families and the hospital generally — they are not at all clear, and too easily clouded by emotion. That’s why we need end-of-life treatment guidelines.

Such guidelines exist for a host of conditions: cardiac arrest, diabetes, depression. Though they can be controversial — viewed as too restrictive in some cases, in other instances too loose — they set a bar for an appropriate course of care.

A simple treatment guideline for clinical situations like my octogenarian patient’s might look like this: For patients who have one terminal illness that is either resistant to treatment or can’t be safely treated, combined with a second very serious illness or complication, along with a high degree of physiological frailty, physicians should consider comfort measures instead of cure.

To me, a hospice nurse, this guideline reads like common sense. But doctors who look at patients primarily as collections of individual problems, rather than very sick individuals, can miss the obvious.

Another patient I cared for in the hospital had received a liver transplant, was H.I.V. positive, and had been newly diagnosed with lymphoma. One of his sisters recited his physician’s hope-filled words back to me: “His body isn’t rejecting the liver, his H.I.V. is under control and his lymphoma can be treated.” His mental state had deteriorated to the point that he routinely tried to eat his own feces, but that symptom wasn’t considered relevant.

Health care has many financial incentives that encourage continued treatment, no matter how pointless. Liability issues arise too: Some physicians worry about being sued if they stop aggressive care for dying patients.

But my experience in hospice suggests that the fundamental issue is more basic: lack of time. According to the family of one patient I cared for — 94 years old, septic, minimally conscious, with an intestinal obstruction and a new diagnosis of cancer — no one told them how very ill she was. I would guess the staff didn’t have time, or wasn’t able to make time.

These kinds of discussions take a while because the family’s understanding of the patient’s illness must be sussed out, and their fears, worries and angers must be aired and addressed. “Comfort care” has to be explained in the context of a failing human body. That difficult, time-consuming emotional work can be avoided by simply sending patients to I.C.U. or to another hospital.

Some physicians also believe that they should have the final say about their patients’ care, especially when a patient’s health is failing. Each case is unique, and a physician’s input is invaluable. But doctors are also generally acknowledged to be unrealistically positive prognosticators. The hard truth is that every single one of us will one day reach a point where our irreparable vulnerability, and decline, cannot be denied or reversed.

It helps to look at this question through the lens of medical ethics. In general, the many treatment possibilities available via modern health care are viewed as actively good, or as medical ethicists would say, beneficent. Honoring patients’ autonomy at the end of their lives is also seen as beneficent. In clinical practice, when these competing goods conflict, the treatment decisions that get made tend to be, as I have described, random and disordered.

The guidelines I propose for comfort care introduce a third term into the discussion: maleficence. Pursuing curative care that is pointless creates harm for patients and staff, who, like the frustrated I.C.U. nurse taking over my octogenarian patient, experience moral distress in these situations and a feeling of professional uselessness.

Such guidelines would introduce clarity into end-of-life decisions while still respecting patients’ autonomy. An end-of-life guideline might automatically call a palliative care clinician to the bedside to help patients and family members understand the choices available to them. The guidelines would empower nurses to advocate for comfort care, irrespective of physicians who view aggressive treatment as always being in the patient’s best interest.

For patients who choose full resuscitation and treatment despite being very ill and fragile, a guideline would ensure that they learned about comfort care. But they would never overrule a patient’s wishes for curative treatment.

The day after my octogenarian patient’s transfer to the I.C.U. he returned to our floor, back on comfort measures. I was told that the patient’s oncologist took his family physician aside and, in a scene worthy of a medical TV show, yelled at him.

The family doctor had skipped over the leukemia diagnosis, had reacted to his patient being essentially put on hospice for pneumonia, and either out of sympathy or hubris, had rushed over to the hospital to save him. But he couldn’t be saved, and we all knew that. He died a few days later.

Our society makes admissions of medical futility in the face of human frailty harder by equating “cure” with “fighting back” and “comfort” with “giving up.” A set of guidelines won’t change that. But it would help nurses and doctors acknowledge when cure is impossible, and comfort is the most compassionate, ethical route.

Theresa Brown, a hospice nurse, is the author of “The Shift: One Nurse, Twelve Hours, Four Patients’ Lives.”

A version of this article appears in print on April 28, 2019, on Page SR7 of the New York edition with the headline: Making Doctors Think About Death.

Reprinted from The New York Times

The Lesson of Impermanence

A chance encounter with a sand painting helped me learn how to doctor patients I knew I would lose.

By Sunita Puri, M.D.

March 7, 2019

As a palliative care doctor, I spend much of my time face-to-face with pain and suffering, debilitating disease and death. When I began my training, I thought I was comfortable with the idea of mortality, and with the notion that fighting death at all costs wasn’t the sole purpose of medicine. But I hadn’t expected that the type of medicine I’d chosen to practice would require a strength and perspective that medical training hadn’t offered.

It was a chance encounter with a sand painting that helped me learn how to doctor patients I knew I would lose.

At the time, I was in the middle of my yearlong fellowship in hospice and palliative medicine, seeing patients at a county hospital in San Jose. I’d immersed myself in learning how to treat patients living with serious illnesses: end-stage heart failure, widespread cancer and devastating strokes. I’d learned how to help families anticipate what dying looks like. It had become second nature to talk openly with patients about the severity of their diseases, and to ask them how we might work together to maximize joy, meaning and comfort in their waning lives.

I hoped that projecting an acceptance of death and comfort with it might soothe my patients and their families. But I had grown progressively more anxious, and occasionally despondent. I didn’t understand why death had come for a 35-year-old mother of three with a rare and aggressive cancer, or why a marathon runner was dying after a sudden heart attack when he’d been a marathon runner.

My parents, both Hindus, had taught me that understanding death as inevitable is necessary to appreciate the meaning and beauty of life. But knowing this didn’t make it any easier to lose patients within days of meeting them.

One of my attending physicians noticed that I’d become more withdrawn, less punctual and occasionally distracted. “This is difficult work,” she told me gently, reminding me that I’d need to care for myself in order to care for my patients. I tried massages, therapy, hiking and meditating under the shade of Marin County redwoods. But when my sadness grew stronger, I longed for a place where I might find community among others searching for support. I found a Vietnamese Buddhist temple that was just a short drive from the hospital.

There I whispered the Sanskrit and Punjabi prayers I’d learned as a child. Sometimes I approached the altar and spoke quietly to the statue of Buddha: Help me find the strength to do this work. Show me how. Please, take away my sadness.

One evening, the temple’s main hall was unusually crowded. People had gathered around a group of Tibetan monks hunched over a table, where they were creating a sand mandala. Metal cups filled with sand of every conceivable color — bright pink, deep navy blue, silver, maroon and mustard yellow — lined one end of the table.

I remembered my father pointing out a photo of a mandala in a museum years ago, explaining that its circular shape symbolized both the cyclical nature of birth and death and the indestructible nature of the universe. Using small scrapers and metal funnels, the monks methodically piped precise amounts of sand to create an intricate geometric pattern. That first evening, they painted a flower with multicolored petals. By the next evening, the flower was surrounded by circles of deep blue and pink and rectangles of turquoise and gold.

The following Sunday morning, the temple was overflowing with people. We all looked on as the group of brightly robed monks surrounded the mandala and began to chant in low, guttural tones, their eyes closed and palms pressed together. I stood on my toes and craned my neck to glimpse the mandala, hoping to see it encased in glass.

Instead, I looked on in shock as one of the monks began to move a feathery brush over the mandala, swirling together the gold and the navy, the circles and the rectangles. He moved along the edges of the table, sweeping away his work just as methodically as he had placed grains of sand in the same space, transforming the mandala from pattern to pile. Hot tears filled my eyes, not only because the mandala was gone, but because the hands that had created it were content to let it go.

The Bhagavad Gita, which my father had read to me as a child, emphasizes that change is the law of the universe. The Vietnamese monk Thich Nhat Hanh reminds us that “impermanence does not necessarily lead to suffering. What makes us suffer is wanting things to be permanent when they are not.” Yet it was the sweeping away of a sand painting that helped me truly understand that change and impermanence are not just spiritual tenets but laws of nature — ones that I’d struggled against and had been taught to ignore throughout much of my medical training.

Just as I’d expected that the gorgeous mandala had been created in order to be preserved, I had also expected that my patient in her 30s should  live to see her children graduate from college, that the marathon runner should  have lived to run more races. I’d expected, partly as a result of my medical training, to change and control what wasn’t necessarily mine to change and control. How might I doctor my dying patients differently if I remembered that everything worldly — a painstakingly crafted mandala, a sky ablaze with color, our fragile human lives — is also temporary and subject to change?

Accepting that life is finite wouldn’t prevent me from drawing upon science to diagnose and treat disease, to use every tool available in medicine to alleviate suffering. But I wondered if it would make it easier for me to endure the inevitability of change and loss that both my patients and I would experience. Perhaps it could bring me solace to remember that just as my patients’ lives are temporary, so is their suffering.

I wiped my eyes as I looked upon the remaining heap of swirled sand, itself a thing of great beauty. The monks scooped teaspoons of sand into plastic bags, handing one to each of us. Through the bag, the sand felt both tough and soft, the bright blues and pinks particularly visible when I held it up to the light.

When I returned to the hospital the next day, I thought of the mandala as I sat with a breathless man my own age dying from lung cancer, and an agitated grandmother in the final stages of dementia. I would feel compassion for both of them, but I didn’t leave work that day consumed with grief, withdrawn and disengaged. By accepting my patients’ circumstances, rather than fixating on their inherent tragedy, I could focus instead on changing what I could: easing breathlessness and agitation, explaining hospice services to their despondent families.

Before leaving the hospital that night, I removed the bag of sand from my wallet, holding it up to the light as I have so many times over the past five years when I’ve needed to remind myself of the circularity of all things, of change as life’s only constant.

Sunita Puri is medical director for palliative care at Keck Hospital and Norris Cancer Center of the University of Southern California and the author of  That Good Night: Life and Medicine in the Eleventh Hour.