In trying to honor Vincent’s autonomy, we abandoned him in hell. A decade ago, as a doctor in the intensive care unit at the University of Medicine and Dentistry of New Jersey in Newark, I met Vincent — I’m using this name to protect his privacy — on his ninth stay of the year. He was a “frequent flier,” back and forth between the I.C.U. and his nursing home down the street. He would come in dying, we’d plug him into life support, treat his infection, pump up his blood pressure and send him back to the nursing home. But then he’d deflate like an old tire and be rolled back in by paramedics within anywhere from three days to three weeks.
By the time I met him, Vincent was no longer really with us. The only signs of life occurred during dressing changes and bed-turning, when, despite extra pain medication, pain fired up dormant neurons and his blue eyes flared. There was no family, no friend, no person from Vincent’s life to serve as a guide for our treatment goals. There was only his advance medical directive, which he had completed 10 years and a lifetime earlier at the age of 75. And a handwritten note stapled twice to the form.
An advance directive is a legally valid form that allows a person to choose the type of medical care he wishes to receive. It goes into effect when he is no longer able to speak for himself. Nursing homes typically highlight advance directive completion rates as a point of pride, a metric to prove that they are concerned about the patients’ preferences.
But the advance directives that we receive from nursing homes are cookie-cutter similar. Almost all indicate that a patient has stated that all attempts to prolong life should be pursued. No treatment is considered unacceptable, regardless of prognosis. There are neat signatures from two witnesses, usually the admissions clerk and the social worker. Almost never the physician.
And, sadly, that makes sense. Discussing values, preferences and personal goals in the event of debilitation is difficult, time-consuming and often harrowing. It is an ambitious load. And since nursing homes are paid to care for patients in perpetuity, are their employees really the right people to oversee the completion of these forms?
Vincent’s directive was typical for that of a patient from a nursing home. But it was the piece of notebook paper double-stapled to it that caught my attention. It had been folded several times, and the center of the paper was slitting open along its most trafficked fold. The words had been written by Vincent himself in blue ballpoint, in a hand that was just beginning to show its age — a little wobbly but steady enough and still clear.
“To any doctor who will take care of me in the future,” it read, “I want you to do EVERYTHING in your power to keep me alive AS LONG AS YOU POSSIBLY CAN!”
And so Vincent’s own words became his doctors’ guide to his medical treatment. His first three I.C.U. admissions had been for septic shock from pneumonias that blossomed from food that he would cough into his lungs. On that third admission, surgeons had sewn a tube into his stomach through which artificial nutrition could be pumped 24 hours a day. It seemed logical: Stop sending food close to his windpipe and divert it directly into his gut. But it made everything worse. A stomach full of artificial nutrition is even more likely to back liquid into the lungs. And so admissions four through six were for pneumonias from the tube intended to prevent them.
More tubes sprouted: A breathing tube was sewn permanently into his neck, as he had become too weak to support his own breathing. A tube was sewn into his bladder because of his chronic urinary tract infections.
Like Gulliver, he was covered head to toe with tiny creatures, in his case resistant bacteria, so stubborn that they could never be completely eradicated by concoctions of our most powerful antibiotics, doubled and tripled up. Even when our antibiotic bombs did destroy a given infection, another would almost immediately pop up somewhere else. And so on every admission he was assumed to be covered with resistant organisms even if they had not yet been cultured in the many petri dishes that bore his name downstairs in the lab.
The measures taken to minimize the spread of these dangerous bacteria further isolated him from the world of the living. He would never again feel the touch of human skin on his body, just the leathery latex of a disposable glove, the brush of a papery gown.
In our well-meaning attempts to keep our patients alive, we I.C.U. physicians often play Whac-a-Mole with illness, batting down each problem as it surfaces. All in the name of patient autonomy.
Until the mid-20th century, doctors practiced a paternalistic style of medicine. The implication was that their training and superior knowledge required that they chart the most appropriate course of action for their patients, often “sparing” them stress and anxiety by hiding the truth or promising a cure even when it was not possible.
But that had changed by the time I graduated from medical school in the early 1990s.
Paternalism was out and patient autonomy was in. Tuskegee researchers and Nazi doctors had shocked the world with their lies and violations of patients’ rights. Even the more benign paternalism practiced by old-time doctors didn’t sit right.
We were taught to offer all possible treatments and honor whatever our patients requested, even if we disagreed. “Informed consent” was obtained in a hasty transaction between a harried intern and a bewildered family member, the list of risks the same for almost every procedure. Doctors became medical vending machines, our treatments laid out behind a piece of glass — just press E6 and we’ll get started. And go on forever.
And so I would have continued with Vincent had his case not stood out in a way that, 10 years later, I have not been able to forget.
On that ninth admission, when I took over his care, I was almost unable to complete my physical exam. This man’s body was being eaten away to a degree I had never seen. Autodigested while dying. Even with the most attentive nursing care, a flaccid, dying body has pressure points where thin skin eventually breaks down. In bad cases, the tissue breakdown extends into muscle, and in the worst cases, it goes down to the bone. Vincent’s shoulder and heel ulcers were severe. But the one that stopped me in my tracks started at the low end of his spine and spread toward his left hip, melting skin and muscle away so that his entire hip socket lay open to the air. Even as a seasoned I.C.U. physician, I gasped the first time I laid eyes on it.
I am sure that Vincent could not have known what he was setting himself up for when he wrote that note. He could never have imagined that with our fancy treatments, we could keep his body going even while it was trying its hardest to die. And now he was suffering, with every terrible dressing change, every lonely hour in an I.C.U. isolation room, and all of his grit drained from his body.
And so this case became the first where I began to openly question our blind trust in patient autonomy. I started to doubt whether this patient’s instructions should be our best guide to his medical management.
I convened a meeting with his legal conservator, his physician from the nursing home, the ethics team at the hospital and several other physicians who had cared for him. Everyone filed in to see him, in their yellow gowns, and there was a stunned silence.
In the end, we did not reverse the direction Vincent had charted for himself. He died the following month during continued deliberations. Maybe this was the most ethical outcome; maybe it wasn’t. But I am sure that this poor man could not have known that his last days would look as they did. I, an I.C.U. physician, wouldn’t have imagined it in my worst nightmare.