A Will to Die

By Elisabeth Rosenthal
Dec 1, 1992 6:00 AMNov 12, 2019 4:46 AM


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I was healthy, 35 years old, and eight months pregnant when I signed legal forms stating that if I was ever unconscious due to an irreversible illness I did not want doctors to use extraordinary measures to prolong my life. No breathing machines. No feedings through a tube. No water by vein. Nothing.

I’ll admit it was an unusual preoccupation amid the crib buying and name choosing. But as I prepared to enter the hospital for delivery, I was haunted by the ghost of a former patient, a woman close to my age who entered a hospital for minor surgery and spent half a decade unconscious in a hospital bed.

Melissa’s medical history is a long saga in which very little happens. She was an aspiring actress in 1986, when she went to her local hospital for minor elective surgery--a scraping of the uterine wall--under general anesthesia. Sometime during the surgery an accident occurred-- possibly a malfunction of the anesthesia equipment--and the oxygen stopped flowing to her lungs. By the time the doctors realized what was happening, her brain had almost suffocated.

It didn’t have to happen: uterine scrapings are frequently performed with just sedation and local numbing. And only a few years later it couldn’t have happened: today virtually all anesthesiologists use pulse oximeters, skin sensors that constantly report the oxygen content of a patient’s blood, allowing them to remedy plummeting levels before symptoms or damage occur. But it did happen.

Melissa’s anesthesia wore off, but she didn’t wake up. The brain can survive only four to six minutes without oxygen. Any longer, and one by one its irreplaceable neurons start dying. Under general anesthesia--with the body’s metabolism slower than usual--the brain gets a little grace period, but even so, Melissa had obviously run out of time. She was immediately transferred across town to a neurological intensive care unit, where specialists held vigil to see whether and how much she would recover.

Not much can be done for brain damage caused by lack of oxygen. Early on, the real challenge is to determine the extent of the permanent damage. When deprived of oxygen, the brain is at first stunned, and it swells in response, further reducing the flow of blood and oxygen. The affected cells may respond to their compromised environment by shutting off, but they don’t necessarily die. So once the swelling subsides and the blood flow is restored, patients frequently recover functions they appeared initially to have lost. I’ve seen patients who seemed nearly brain-dead after a temporary lack of oxygen walk out of the hospital some weeks later.

But for Melissa, things looked ominous from the start: the signs all pointed toward a severe brain injury. When she arrived at our hospital her pupils were widely dilated and did not constrict when flooded with light. She had no reflexes. And when the doctors tried to turn down the rate at which the respirator delivered its breaths, her body made no attempt to breathe on its own. It was a very bad sign. The contraction of the diaphragm is a primitive brain response orchestrated by cranial nerves 3, 4, and 5. (Medical students remember this by the mnemonic 3, 4, 5 keep the diaphragm alive.)

Yet there were moments of hope. A few days after the accident, though she showed no sign of being aware of her surroundings, her eyes began to move from side to side. Her diaphragm kicked in with its rhythmic contractions, so the neurologists were able to remove her from the breathing machine. Then her progress stopped.

It took only a week in the neurological intensive care unit for the doctors to see the grim boundaries of the rest of Melissa’s life. She was in the gray netherworld between life and death that doctors call a persistent vegetative state.

I first met Melissa during my internship, a month after she had been transferred out of the ICU to a semiprivate room. It was a time during which she and her family were settling in to a new relationship and a new routine. For scientific minds, without love to fuel false hopes of recovery, the scene we saw day after day on morning rounds was chilling: a pretty young woman with blond hair and bright blue eyes lay motionless in bed. Her mother perched in an armchair by her side, chatting in animated tones about the news or the weather. All the while, a meticulous full-time nurse flitted about the room tending to the young woman’s bodily needs.

This nurse kept pace valiantly with the tiny rituals of a normal life: she changed Melissa’s nightdress, brushed her teeth, applied makeup, rearranged her hair. But then there were the other, not so normal rituals. Several times a day the nurse funneled liquid food through a feeding tube that ran into Melissa’s stomach through her nose, and removed the urine that accumulated in a bag attached to the side of the bed. Every so often she checked Melissa’s diaper, and to prevent bedsores she moved Melissa at least once every four hours from one lifelike position to another: lying on her right side, lying on her left side, propped in a reclining chair.

For weeks mother and nurse continued the charade. None of us had the heart to point out its futility. But in time the mother ceased her chatter and her visits became less and less frequent. With no further intrusions from the outside world, the nurse and Melissa settled into a symbiotic existence, battling the vestiges of sickness and death.

It was quite a battle. Patients confined to bed in a persistent vegetative state are vulnerable to a wide variety of maladies, and Melissa was no exception. Since tube feeding is never as good as real food, most patients in this type of coma lose weight. They rarely move, so their muscles become wasted and their joints contract, locking in a flexed position. Each day a physical therapist visited Melissa to manipulate her wrists, elbows, hips, and knees. But inexorably, over time, Melissa’s body grew stiffer and stiffer.

And then came the infections. Comatose patients spend so much time in bed, unable to shift position, that the pressure cuts off circulation to the skin. This causes bedsores that can get infected. The bladder catheter, a foreign object leading into the body, tends to introduce infection as well. Pneumonias are a constant threat, since comatose patients don’t cough or expand their lungs fully while lying motionless in bed. Unlike a conscious person, they are unable to get rid of all the germ-filled mucus that normally collects in the lungs.

So twice a day the nurses would take Melissa’s temperature, and every month or so they would discover it to be sky-high. The source of the infection rotated--bladder, skin, lung, bladder again--but the ritual after the discovery of a fever was always the same: a slew of tests to discover which bacterium was the culprit this time, an intravenous line, and a ten- day course of antibiotics.

Since Melissa went through so many bouts of infection, the bacteria that colonized her body became resistant to common drugs; each successive infection required a longer course of more dangerous antibiotics. Her veins became hard and scarred from the frequent assaults by IV catheters. Within a year Melissa’s doctors had to insert an intravenous line into the deep veins of her neck any time she came down with an infection.

Once my internship ended, I didn’t see Melissa again until two years later, when I returned to her ward for a month-long rotation. I came by on rounds and there she was, still propped in a recliner, still with her devoted nurse beside her. But how things had changed!

The pillows held up a sad-looking stick figure whose folded joints made her appear as though she were straining to return to a fetal position. Her once-smooth pale skin was pocked with scars from her IVs, and her brushed hair had thinned to tiny wisps from constantly rubbing against pillows. A thick white liquid--Melissa’s food--ran from a plastic bag on an IV pole into a tube inserted through her abdominal wall and into her stomach.

As always, the cheerful nurse gave us her daily report as we silently rolled Melissa from side to side to look for signs of bedsores and placed our stethoscopes against her frail back to listen for pneumonia.

The doctors are here, Melissa, she would say. Good morning, doctors. She’s doing better today. A glossy promotional picture of her former self was taped on the wall at the head of her bed, mocking the upbeat assertion.

Doctors are taught to speak to their patients--even comatose patients--during exams. Okay, now we’re going to sit you up and listen to your lungs, we’d say as we lifted her up in bed. It’s a common courtesy for a fellow human being. But I was stunned anew each day by the sight of one so like me and yet so different; as time went on, I could no longer bring myself to talk to Melissa. Indeed, even the senior doctor running rounds would frequently ask an intern to come back and examine her later, to hasten our departure from the room.

The hospital social workers tried desperately to find her a place in a nursing home, but beds are scarce for patients who need such constant care. Finally Melissa was placed in an excellent home in a neighboring state, near her parents. With little fanfare, an ambulance crew arrived one morning and moved Melissa and a paper bag containing her belongings from the pale green hospital room that had been home for the last four years. Her loyal nurse went with her.

Word spread quickly around the hospital that Melissa had left. I could have sworn I heard a collective sigh of relief. Virtually every doctor in the hospital had taken care of Melissa during her long stay.

Why did she make us so uncomfortable? In part, it was because she reminded all of us young doctors that even 30-year-olds are mortal. In part, it was because she was glaring proof that our chosen profession, supposedly devoted to healing, could cause and perpetuate this protracted not-quite-death.

Two years later, after I had finished my medical training, I ran into Melissa’s nurse in a deli near the hospital. We smiled, recognizing each other immediately. Although I had not envied her job, I had admired her optimism and determination.

What are you doing here? I asked.

Oh, back to private-duty nursing, she said. There was a pause. Melissa died in the nursing home two months ago, you know. Pneumonia.

It was said with the exhausted sadness of one who has lost a long battle, though a battle well fought. As for myself, I thought, My God, more than five years after she spoke her last word and last saw the light of day, we finally let her go.

Maybe it was for the best, she said. I nodded.

Would Melissa have wanted it this way? We didn’t know for sure, and so by law and according to the wishes of her parents, we doctors did everything to sustain her frail life. I did not know Melissa when she was more like me, but I cannot believe that many vibrant 30-year-olds would want to die as she did, with such an extended whimper. And unfortunately, when Melissa entered the hospital in 1986, no one would have thought to ask.

Today federal law requires that all patients admitted to a hospital--young and old, sick and healthy--be given information about living wills and health care proxies, documents that allow patients to indicate their wishes concerning heroic treatment should they become irreversibly unconscious. They allow you to reject certain types of treatments in advance, like being put on a respirator or fed by a tube, and to designate a person who can act as a surrogate to make treatment decisions if you become mentally incompetent.

When you are feeling fit, it is tempting to avoid contemplating incapacitating illness or even death. Sign a living will? Choose a proxy? Not today! There’s plenty of time. I haven’t missed a day of work in years. That is why, I suppose, even the vast majority of doctors and nurses have yet to make their wishes known.

But not me. I made my decisions and signed my papers pregnant and healthy--egged on by the memory of Melissa.

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