Who should bear a dying man’s burden?

Sedated by Oxycodone, Ted slept despite the rhythmic ruckus of his breathing machine. He never felt quite rested in the hospital. While awake, his gaze often lingered on a snapshot that captured him in the past: full of laughter and radiant joy with his little granddaughter, Tara. The grandfather in the photo — muscular, mischievous — barely resembled the emaciated elder in the bed who silently mouthed short answers to my questions.

Ted had come to the hospital for cancer chemotherapy, but, within a few weeks, he became inseparable from his ventilator. Soon, he began needing dialysis as well. By the time I met him, he had been on a ventilator in the ICU for eleven months. Multiple attempts to get him off the breathing machine had been foiled by pneumonias and assorted organ dysfunctions. For patients like Ted, who have worsening multi-organ failure, mechanical ventilation serves to keep them alive, but is powerless to return them to their former healthy selves. Additional therapies such as tube feeds, dialysis, and antibiotics also help prolong the dying process from hours to months or even years.

Ted endured breathing tubes, feeding tubes, injections, pain, thirst, nausea, and recurrent infections. He did this in hopes of a miracle that could end his dependence on machines and custodial caretakers, in hopes that he could go home, in hopes that he could play with Tara once again. His hopes rose and fell with the daily fluctuations in his clinical status. To me, he was the embodiment of Nietzsche’s words: “He who has a Why to live for can bear almost any How.”

His prolonged illness was taking its toll on his family members. His wife, Mary, spent her days shuttling between work at her car dealership and Ted’s room. She was a petite woman with a mane of ginger hair and a penchant for enormous earrings. She left Ted with visible reluctance every night around 11 p.m. “A part of my soul never leaves this room,” she explained.

Caring for patients with chronic critical illness is draining for physicians and nurses too. In our short stints in the ICU, physicians cannot always build the strong relationships with patients and families that can help us jointly come to terms with such grim prognoses. Instead, like many residents before me, I catch myself going through the motions of care perfunctorily — doing physical exams, rounding, and writing prescriptions despite knowing that I cannot give back to my patients their identities, their lives. I feel trapped and guilty: this is not the doctoring I was prepared to do. Physicians and nurses study and train hard for the privilege and joy of alleviating pain, and mitigating the tyranny of disease; not to prolong the inexorable decay of irreparable bodies.

I had only been taking care of Ted for three days when the oncology fellow approached me with bad news: Ted’s cancer was back despite fourth line chemotherapy. We shared the news with Ted and Mary.

“There’s no effective therapy left to try,” admitted the oncology fellow. He looked down at his hands sheepishly. Sitting next to him, I knew we were unified in that moment by a familiar frustration: “After eight years of schooling and degrees worth a quarter million dollars why do I not have more to offer?”

We explained that, in the absence of treatments for his cancer, we were artificially prolonging his life with mechanical ventilation, dialysis, and antibiotics for his recurrent and increasingly drug-resistant pneumonias. Didn’t he just want to be comfortable? To drift into a deep sleep and be free of the pain and the frustration?

Ted mouthed a barely audible response: “I am scared of dying. I don’t want to kill myself.”

It was time to say the words that no physician liked to utter: “Ted, we cannot stop you from dying. But,” I added with as much conviction I could muster, “We can help you die on your own terms.”

He remained unmoved. I began to questions his capacity and spoke to his wife separately. Her answer was similar: “I know he’s dying, but I don’t want to kill him. I’ll never forgive myself and neither will our children.”

I knew I was asking too much of them. For many people, terminating care is tantamount to giving up on their dying kin or, worse, murdering them. Those who make this courageous decision often struggle with doubt and guilt for years. After all, these patients have pulses, warm skin, and tears. Patients who have to decide for themselves often equate stopping life support with suicide. They worry about letting their families down. Who is to say that they are right or wrong?

Inappropriate cultural defaults within our health care system force people into chronic critical illness. Life-sustaining therapies are frequently started quickly without clearly set expectations, goals, or defined endpoints. Escalation of care occurs algorithmically. When even the most aggressive therapies fail to change the course of the disease, patients and their families are often asked to make the difficult decision about stopping or continuing care. Cessation of care usually occurs in two ways: either the patient or family decides to forego life-sustaining therapy, or the patient becomes so sick that medical and surgical therapies stop working.

Physicians are often torn between the principles of autonomy and beneficence in cases like Ted’s. Should we respect their right to self-determination and help them continue this difficult existence until they decide to stop? Or should we volunteer ourselves as stewards, relieve them of the burden of the decision, and guide them to a comfortable and dignified death? Potent arguments can be made for both sides.

Perhaps the choice doesn’t have to be binary. My attending physician sat down next to Ted and asked: “I know the weight of this decision is unbearable. Would you allow me to take that burden away from you? It is my job, and I know I can live with the consequences of the decision.” Ted and Mary said they would think about it.

I had discovered an important role and suddenly felt empowered. Over the next two weeks, I got to know the man beyond the chart: Ted and Mary loved tennis. He had been a detective and told me about the murder case he had solved in sixteen hours. Tara’s kindergarten escapades made me convulse with laughter. Laughter, an almost foreign entity in the room, seemed to have obtained a temporary visa. For me, these interactions became as important as placing central lines or reviewing labs.

Thanks to a heroic team effort, Ted began tolerating minimal ventilator settings and stood on his feet for the first time in weeks. But the progress evanesced overnight when worsening breathlessness and thick purulent secretions announced yet another pneumonia. Mary was visibly crestfallen. I had a light workload that day, so I suggested taking a walk to the healing garden in our hospital. It was a windy day, and rain seemed imminent.

I asked: “Should we go back in?”

“Let’s sit for a few minutes.”

Below us, we saw a white bird with grey wingtips — a seagull, perhaps — prominent in the dark sky. He was beating his wings furiously to counter the howling wind that engulfed him. Powerful though his strokes must have been, they were powerless against the formidable force of the wind that surrounded us. His wings seemed to move in slow motion as he hung stationary in the air. There was something tragicomic about his inability to move. I sensed that Mary too was rooting for the bird, the clear underdog. After 30 seconds, his flapping slowed down and, quite abruptly, he swooped down onto the monolithic gray garage below him. There, he appeared to brace himself behind a four-foot wall.

“He looks tired,” said Mary.

“Yes.” I agreed.

The inevitable words came out now: “What should we do?”

Ted and Mary shared their difficult burden with us at last. It was a weight we felt privileged to bear as we watched him drift into an undisturbed final deep sleep.

Pranay Sinha is an internal medicine resident.

Image credit: Shutterstock.com

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