Published On July 23, 2012
He died before / coronary care / Before the defibrillator / Before lidocaine / Monitors / Before intensive care / nurses. / They put him in / an oxygen tent / They made the diagnosis / just for show / They hoped the best for him. / We let him go.
So wrote the physician-poet John Stone in “Spiritual,” a lamentation that technology hadn’t yet advanced sufficiently to save his father in 1954. Yet that very technology, say these three physicians, can stand in the way of a peaceful, dignified death, because of the physical suffering it can cause and the glimmer of false hope it provides patients, doctors and their families. Ken Murray, a retired clinical assistant professor of family medicine at the University of Southern California, explains why physicians, who routinely see “bad deaths,” typically refuse heroic measures for themselves; Danielle Ofri, a clinician at Bellevue Hospital and editor-in-chief of Bellevue Literary Review, tells a story that exposes the messy truth of resuscitation; and Charles Bardes, associate dean of Weill Cornell Medical College, considers what it means to let go.
Death of a Doctor
By Ken Murray
Years ago a highly respected orthopedist (and my mentor, incidentally) found a lump in his stomach. He was diagnosed with pancreatic cancer by one of the best surgeons in the country, who had developed a procedure that could triple a patient’s five-year survival rate—from 5% to 15%—albeit with poor quality of life. Charlie was uninterested. He went home the next day, closed his practice and never set foot in a hospital again. He spent the time with family, and several months later he died at home. He got no chemotherapy, radiation or surgical treatment. Medicare didn’t spend much on him.
It’s not a frequent topic of discussion, but doctors die too—though not like the rest of us. What’s unusual is not how much treatment they get compared with most Americans, but how little. They know exactly what is going to happen, they understand the choices, and they generally have access to any sort of medical care they could want. But they go gently.
Of course, doctors don’t want to die. But they know the limits of modern medicine. They want to be sure, when the time comes, that no heroic measures will be taken. I cannot count the number of times fellow physicians have told me, in words that vary only slightly, “Promise me that if you find me like this, you’ll kill me.” Some medical personnel wear medallions stamped NO CODE to tell physicians not to perform CPR on them. I have even seen it as a tattoo.
How has it come to this—that doctors administer so much care they wouldn’t want for themselves? In some rare, unfortunate cases, unethical doctors use the fee-for-service model to do everything they can to make money. More commonly, they are fearful of litigation and do whatever they’re asked to avoid it.
One of my patients was a 78-year-old man who had been ill for years and had undergone more than a dozen major surgeries. He told me he never wanted to be placed on life support machines again. Then, one Saturday, he suffered a massive stroke and was taken to an emergency room unconscious, without his wife. In Jack’s worst nightmare, doctors put him on life support. When I arrived at the hospital and took over Jack’s care, I spoke to his wife and to hospital staff, bringing in my office notes with his care preferences. Then I turned off the life support machines and sat with him. He died two hours later.
One of the nurses, I later learned, reported my unplugging of Jack to the authorities as a possible homicide. Nothing came of it, of course; Jack’s wishes had been spelled out explicitly. But the prospect of a police investigation is terrifying for any physician. I could far more easily have left Jack on life support against his wishes, prolonging his suffering a few more weeks. I would even have made a little more money, and Medicare would have ended up with a $500,000 bill. It’s no wonder many doctors err on the side of overtreatment.
Except, that is, when they are the ones being treated. They know all too well the consequences. Almost anyone can find a way to die in peace at home, where pain can be managed better than ever. Hospice care, which focuses on providing terminally ill patients with comfort and dignity rather than on futile cures, provides most people with much better final days. Amazingly, studies have found that people placed in hospice care often live longer than people with the same disease who are seeking active cures.
Several years ago, my older cousin Torch (born at home by the light of a flashlight—or torch) had a seizure caused by lung cancer that had migrated to his brain. We learned that with aggressive treatment, he would live perhaps four months. Ultimately, Torch decided against any treatment and simply took pills for brain swelling. He moved in with me, and we spent the next eight months having fun together like we hadn’t had in decades. We went to Disneyland, his first time, and we hung out at home. He was very happy to just watch sports on television and eat my cooking. He even gained a bit of weight, eating his favorite foods rather than hospital food. He had no serious pain, and he remained high-spirited.
One day, Torch didn’t wake up. He spent the next three days in a comalike sleep, then died. The cost of his medical care for those eight months, for the one drug he was taking, was about $20.
Torch was no physician, but he knew he wanted a life of quality, not just quantity. As for me, my physician has my choices. There will be no heroics, and I will go gentle into that good night. Like my mentor, Charlie. Like my cousin Torch. Like my fellow physicians.
By Danielle Ofri
The patient’s wife picked up the packet of papers from her lap and held it across the bed over the sleeping patient toward Dr. Graham Benfield, without catching his gaze. “One of the nurses gave this to me,” she said, the sunlight from the window glinting off her cheekbones. The glowing ebony of her face, even at that downward cant, caused Graham’s throat to constrict briefly. ‘We’re supposed to sign these if we’re not doing any more treatments, right?” she asked. Her voice was flat, almost toneless, but that lilt—Jamaican? African?—was still noticeable.
Graham whisked both the papers and his eyes away from her. Written on top in bold letters they said: Do Not Resuscitate. Each sheet was a different version of the form, covering the range of possible human conditions: For Patients With Decisional Capacity. For Patients Without Decisional Capacity With Surrogate Available. For Patients Without Decisional Capacity Without Surrogate Available. There were explanations in English, Spanish, French, Russian, Chinese and a few languages Graham did not recognize.
He flipped through the papers, dreading the discussion. Patients and families familiar with advance directives usually knew the deal—the euphemisms, legalities, ethics—and were quick to sign. Many had made their decisions beforehand and arrived at the hospital armed with living wills, health care proxies, powers of attorney. But many others—especially the immigrant population at East Memorial—had no awareness of the Kafkaesque reality of death in a hospital.
If a patient was found to be lacking in respiration or pulse—typically referred to as dead, in the real world—and had not had the foresight to sign a DNR in advance, a “code blue” would be called. In large teaching hospitals like East Memorial, the code team was an amorphous beast. A code announced on the overhead monitor prompted a veritable running of the bulls: the senior medical resident, the anesthesia resident, the charge nurse, the on-call team, the post-call team, the ICU team. And, of course, the requisite gaggle of medical students anxious to see some action.
Even more difficult to explain than the bloated dramatis personae were the barbaric mechanics of paddles, shocks, breathing tubes and chest pounding, not to mention the less photogenic procedures—IVs slammed in, iodine splattering, medication vials flying, EKG wires tangled, ragged surgical tape binding the breathing tube, saliva dripping down the chin, electrode gel slithering along breasts, private parts flagrantly disrobed, the floor a skating rink of saline, blood, vomit, crumpled wrappers from alcohol pads, gauze pads, syringes, needles, medications.
But most bizarre of all was that this was performed on a person who was dead, and usually for damn good reason—cancer, AIDS, Alzheimer’s, stroke, heart disease or any of the other horrific fates of the civilized world. Yes, there was the rare salvageable patient, which was why the medical profession continued to perform this savage ritual. But for the large part, “resuscitation” was an oxymoron, inflicted on people who started out dead and would generally remain so for the foreseeable future. The unlucky few who were “successfully resuscitated” earned the right to spend the rest of their days in a coma until their disease finished them off for good.
But this was not what Graham would say to the patient’s wife, who sat hunched in the chair, her haunting eyes downcast, as her husband and his bevy of tumors dozed fitfully in the bed.
The typical, if artless, starter was usually: “What would you like us to do if you stopped breathing or your heart stopped beating?” Inexperienced interns would follow up with: “Do you want us to do everything?” to which most patients would immediately reply yes.
But it was unnervingly easy to apply gentle pressure in the other direction: “We could pound on the chest, shock the heart, push a tube down the throat, or…”—and here the voice would soften, eye contact would become more direct, empathy would enter the overture—“…or we could just let nature take its course.”
There seemed to be something intrinsically appealing about nature and its predestined course, despite nature having its own arsenal of brutalities. The little white paper, with a signature here and a witness there, was the talisman to hold back the avalanche of intervention, to allow the fine-toed steps of nature to walk unhindered.
The patient’s wife rotated in her chair so that she faced Graham straight on. He swallowed dryly, then quickly fingered through the forms. Unfortunately there was not one geared toward the socially hapless but nevertheless married physician pathetically attracted to the wife of his dying patient.
“Those papers mean he will die, right?” she asked, staring at Graham, making him sweat under his white polyester coat for more reasons than he cared to admit.
“Well, not exactly,” Graham interjected, even though it was largely true. It was just the way she said it, without the euphemisms. Foreign diction always seemed to shear the niceties—or perhaps it was the obfuscations—off the English language and allow the facts to shiver nakedly in the light. Her husband was definitely going to die—it was just a matter of how protracted and how gruesome his death would be.
Crossing the River
By Charles Bardes
For someone killed quickly, the journey to the afterlife is swift. But for those who die of illness, the passage is slower. They descend gradually underground, wearily approaching the realm of death, whose boundary is the River Styx. There the sullen ferryman Charon rows the newly departed over into Hades. It was Sisyphus the king who tricked Charon by instructing his queen to omit the customary fee, a coin placed beneath the tongue. So Sisyphus was sent back to earth to live a few more years. But in the end he was punished: Returned to Hades, he was condemned to roll his famous stone uphill for eternity.
Sometimes, as a man nears death, his physician assumes the role of Charon. When one rows gently—or shall both row?—the dying man and his family can integrate their suffering into their lives at large. When not, there is confounding and turmoil, denial and rage.
2. He died after a courageous struggle
So read the obituaries. “He died after a long fight with cancer,” “succumbed after a valiant six-month battle,” “struggled heroically.” Or, so often heard when a person is diagnosed with a serious illness: “I’m going to beat this thing.” (Uttering the disease’s name, especially when the name is cancer, is taboo.)
It is a metaphor, of course, that equates illness with violent conflict. Winning equals cure, losing equals death. If the image is a battlefield, there are two combatants locked in struggle, or two masses of opposed forces. If the image is a siege, there is a beleaguered fortress with a wall, and an attacking enemy is out there, beyond the pale. Or, as cancer is often imagined, the disease is a turncoat, a member of the inner sanctum treacherously betraying the host.
But what if death is not an enemy, not an externalized force outside and against oneself? Is not dying always within us? The cell is programmed to die. The will imagines otherwise. The battle metaphor violates the inner presence of dying, the drowsy yearning for the void, release, blessed darkness, Mother Night. Gathering one’s personal strengths in illness, yes. But fight? What is there to fight about?
3. Let him go
He has suffered many strokes and many seizures. He breathes, but never again will he speak, swallow or awaken. “It is time to let go,” says the neurologist to the wife. She fires him and hires another.
For the phrase has meant something entirely different to the physician and to the wife. The neurologist has unwittingly included two statements in a single expression. (1) You must accept that your husband will die. It is time for you to begin the painful process of emotional separation. (2) We physicians must accept that our patient will die. We should restrain our clinical aggression, the reflex to perform tests and procedures.
Let him go—the wife has heard something entirely different. She thinks: (3) they want to euthanize my husband. She is outraged: “I want him to live as long as possible, as long as he’s not suffering.” Well, he’s not suffering, if suffering is mental awareness of pain or anguish. She, however, is suffering, and the medical people are suffering—much less so, of course, but they don’t want to stick needles into this man, don’t want to watch as he slips farther from our own world, don’t want to write their silly notes about vital signs, feeding tubes and bedsores. They want him to die, which they know is inevitable, know with their lived experience and not just with their minds, the way a sailor knows the sea differently from a cartographer. Perhaps the wife has intuited their desire and extrapolated it into an active wish or plan. She will hear none of it.
And then there is (4) release—the child who lets go the string of his beautiful balloon and watches as it drifts away over the trees to join, or rejoin, the clouds.
A note on the art: Though well known as a poet of the Romantic Age, William Blake was an equally gifted painter and printmaker. The Englishman, who lived from 1757 to 1827, readily explored death in his work. Throughout his life, Blake claimed to see visions in which he spoke with angels and his deceased brother. Several of his works depict similar interactions between the living and the dead, as seen in “Pity”, “The Resurrection” and “The Death of the Virgin.” As biographer Peter Ackroyd notes, “In the visionary imagination of William Blake there is no birth and no death, no beginning and no end, only the perpetual pilgrimage within time towards eternity.”