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Who Should Bear a Dying Man's Burden?

As physicians, we know that the patients are suffering. We know that their chances of returning to the life they desire are nonexistent. We know that this is a difficult decision. Should we respect their right to self-determination and help them continue this difficult existence until they decide to stop?
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A man carrying a cross and walking down a desolate highway in winter. Easter theme. Additional themes are religion, spirituality, forgiveness, salvation, grace, mercy, love, crucifixion, burdens, suffering, journey, hope, and Good Friday. Unrecognizable Caucasian man in his 30s. This image is a remote highway in Alberta, Canada during a spring snow storm. Panorama.
A man carrying a cross and walking down a desolate highway in winter. Easter theme. Additional themes are religion, spirituality, forgiveness, salvation, grace, mercy, love, crucifixion, burdens, suffering, journey, hope, and Good Friday. Unrecognizable Caucasian man in his 30s. This image is a remote highway in Alberta, Canada during a spring snow storm. Panorama.

"He was thrashing around all night," the nurse reported, "but the oxycodone knocked him out around 3 a.m. Sedated by his pain medications, Ted slept despite the rhythmic ruckus of his breathing machine and his assortment of blaring monitors. He would later complain that 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. The twinkle in his eyes was gone.

He had come to the hospital for cancer chemotherapy, but he deteriorated and, within a few weeks, he needed support from a breathing machine to survive. The breathing tube and his weakened immune system begat further pneumonias and the ventilator became a fixture in his life. Soon, he developed irreversible kidney failure and 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 infections and assorted organ dysfunctions.

Most patients stop needing breathing machines within days, but there are some patients who remain ventilator dependent for weeks, months, or even years, thus acquiring the diagnosis of "chronic critical illness." 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, like many patients with chronic critical illness, had to endure them all: 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. "When he gets worse and I am not here by his side," she once told me, "I can't shake the feeling that it's my fault...that I could have stopped it if I had been around." 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 and their lives before their tragic illnesses. In such situations, 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: "Light chains are elevated -- chemotherapy has failed." Ted's cancer was back despite multiple rounds of chemotherapy. We shared the news with Ted and Mary.

Mary remained resolute: "So what will we try next?"

"There's no effective therapy left to try," admitted the oncology fellow. He paused to let the words sink in and 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?"

Once the shock had abated a little, we discussed the possibility of transitioning to comfort care, explaining that, in the absence of treatments for his cancer, we were 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?

I strained to read Ted's lips as he mouthed his response. Sunrays streamed through the window and the bright light glanced off his face. His face seemed puffy, but his eyes were not droopy today; they were fixed firmly on me. I only understood him on the third repetition: "I am scared of dying. I don't want to kill myself."

I placed my hand on his right leg, noting for the first time just how shriveled his once-mighty calves had become. 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 and was getting tired with the effort of conversation. I began wondering if he even had the capacity to make this difficult decision. Mary requested to speak to me separately. Though she agreed with me, she couldn't bear to withdraw life support: "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. The decision to stop therapy is inordinately difficult. 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 many 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. Some even consider it an unforgivable sin. 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. Putting them in this position seems cruel. 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. As physicians, we know that the patients are suffering. We know that their chances of returning to the life they desire are nonexistent. We know that this is a difficult decision. 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.

But perhaps the choice doesn't have to be binary. My attending physician found a middle path. He 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.

To share this decisional burden requires confidence, integrity, and a deep respect for the patient. Our patients will never share their burden unless they trust us. Trust takes time and demands good communication. 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- she was better than him in their prime. He had been a detective and told me about the murder case he had solved in sixteen hours. Ted's brother was doing well in his AA program. His daughter had been putting off her wedding until he could attend it. 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 strong team effort from a battalion of nurses, respiratory therapists, physical therapists, occupational therapists, aides, and doctors, Ted began tolerating minimal ventilator settings and had 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. The wind chime produced a surprisingly calming tune even though it was flailing around as though attacked by a dozen invisible 6-year-olds.

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