“Sounds more like euthanasia,” someone said snarkily.
“She just doesn’t want to suffer anymore,” I said, ignoring the remark. “She doesn’t want to go through another episode of pulmonary edema. She is absolutely terrified of it.”
“I don’t see the big ethical dilemma,” the senior internist said. “Put her on a morphine drip to relieve her suffering.” This would likely cause respiratory depression that would kill her within hours to days.
“But she isn’t currently suffering,” I replied.
“So put her on a low dose and titrate it up when she develops symptoms.”
“The problem is that she can go into pulmonary edema very quickly,” I said. “She could suffer for hours before her shortness of breath is brought under control, and that’s in the CCU, where nurses are with her around the clock.”
Callahan got up and wrote “extend life < prevent suffering” on a white board. Underneath he wrote: “Goals: hasten death (no); prevent suffering (yes).” Turning to me, he said that it was ethically justifiable to start a drug like morphine that could speed up death, as long as preventing suffering was the primary intention and hastening death was an inescapable side effect. This doctrine of “double effect” says that actions in the pursuit of a good end (symptom relief) are morally acceptable even if they result in a negative outcome (death), as long as the negative outcome is unintended and the good outcome is not a direct consequence of the negative one. It is a concept that comes from Catholic ethics. For example, as St. Thomas Aquinas argued in Summa Theologica in 1274, killing someone trying to harm you is justified in self-defense. The double-effect principle, Callahan went on, has been advocated by several medical societies, including the Oncology Nursing Society, which has even stated that it is unethical not to practice this way. Of course, all this raised the question of how one could start morphine in a patient who wasn’t suffering at that precise moment, but I just nodded respectfully and let it go.
After the meeting was adjourned, I walked out with the psychiatrist. “It’s funny,” he said to me. “I’ve been on this ethics committee for a long time. The issues that come up are the exact same ones that we were tackling twenty years ago. I remember a young attending who was uncomfortable using morphine. The patient said, ‘Take me off the ventilator, but my only worry is that I will not get enough morphine and that I will suffer.’ And that is exactly what happened. That was probably fifteen years ago. Time passes, but the issues remain the same.”
Later that day I put Rose Crespo on a morphine drip. With her and her family’s permission, we arranged for home hospice care. But she never made it out of the hospital.
* * *
I witnessed so much death and dying that first year, it was sometimes hard to take. Every death challenged me to clarify my value system. How much should I defer to a patient’s wishes regarding end-of-life care? How hard should I encourage him, as I had James Irey, to make what I thought were the right choices? How to balance a patient’s autonomy with the competing ethical imperatives of beneficence or social responsibility? One patient with whom all these issues seemed to converge was Joseph Cimino, a scrappy Long Islander in his late sixties whose heart failure had progressed to the point where his kidneys had nearly stopped working from lack of blood flow. Though I’d been seeing Cimino in the office for months, his disease eventually confined him to the hospital, where he spent most of his last days sitting in a chair, head resting on his palm, unable even to complete a sentence because he ran out of breath due to fluid in his lungs. He had a handsome face and thinning gray hair that I imagined had been slicked back in his younger, hipper days. Powerful intravenous drugs dripped into catheters in his arms, so edematous from congestive heart failure that a hospital ID band dug a deep furrow into his wrist. On an ultrasound his heart wasn’t beating as much as twisting, trying to coax out the blood. His wife was always with him. She was an attractive woman in her early sixties with a genteel, almost Southern graciousness. They had a tender relationship, always talking to each other on visits to my office as if they were newlyweds.
Because of his age, Cimino was ineligible for a heart transplant. Though he might have qualified for a left ventricular assist device, he said he preferred death to being sustained by a machine. So he was limited to drug therapy that had become largely ineffective in his advanced disease state. “Too much fluid in the bag,” he’d say, tapping on his distended belly and intermittently pausing for breath. “It’s like when you’re underwater … and you’re swimming to the surface … because you can’t breathe.”
Cimino eventually developed acute kidney failure, which signified to me the end was near. Reluctantly, I told him I could put him on an intravenous drug, dobutamine, that might increase blood flow to his kidneys and possibly improve their function. It was a desperate measure; dobutamine improves cardiac performance in the short term, alleviating symptoms such as fatigue and shortness of breath, but in the long run it worsens mortality by causing deterioration in cardiac function and life-threatening arrhythmias. It is sometimes used as a palliative measure to relieve unremitting suffering. Santo Russo, my mentor at Columbia, had explained the medication this way: “Cancer doctors give drugs like chemotherapy that make people feel worse but help them live longer. We heart failure doctors give drugs like dobutamine that make them feel better but die quicker.” Of course, if Cimino developed an arrhythmia from dobutamine, then his implantable defibrillator, a beeper-size device just under the skin of his chest that monitored his heartbeat, would deliver a shock, so he was protected from a sudden arrhythmic death. However, I was beginning to wonder if we shouldn’t just turn off the device. Wouldn’t a sudden death be preferable to a slow one drowning in his own fluids? Technology cannot change whether you are going to die, only the mode of your demise.
Lying in bed, wrapped in hospital blankets, Cimino pondered the dobutamine option. “If I can prolong my life … and leave the hospital … that would be all right,” he said. “I mean, I don’t want to die … but I don’t want to put off the inevitable either.”
I explained to him that patients requiring dobutamine usually had very limited life spans, a consequence of both their disease and the side effects of the drug. I brought up the option of hospice care, designed to alleviate the suffering of the terminally ill. Cimino didn’t want to discuss it. “I still have hope,” he said bravely, wiping the perspiration off his brow. “I know you’re doing your best … but I still have hope.”
A dobutamine drip was started that afternoon. In the evening, before leaving the hospital, I stopped by to see how he was doing. Ashen-faced, he seemed more spent than ever. “I’m waiting,” he said.
“For what?” I asked.
“A miracle,” he replied.
Against the odds, his kidneys did respond briefly to the new drug. Tests showed that the level of creatinine in his blood, a marker of renal dysfunction, dropped dramatically. When I informed him of this, he seemed pleased. “I don’t know what to say … I was prepared for something else … to lie here and to die right here … and now you’re telling me this.” He shook his head, as though marveling at the mystery of his life. “I don’t know what to do now.”
I told him that there was nothing for him to do. His body would dictate how we proceeded.
His wife, her eyes moist, came over to the bedside. “If you can come home and work on the garden and finish that model, and we could enjoy a few more weeks or months together, well, that wouldn’t be so bad, would it?” she said.
“No, I guess that would be all right,” he replied, though his tone was skeptical. “I’d like to live a little longer … I’d rather be alive than dead.”
By the following morning, however, his demeanor had changed. “Sit down!” he commanded when I entered the room. “If anything is going to happen … I must say my piece.” Stunned, I pulled up a chair, wondering what had happened. “This is too much … I never expected this … the humiliation”—he was panting by then, as
if he had just finished a race—“no matter what … I don’t want the catheter to go back in … I’ll urinate on my own … I have that right…” He shook his head in disgust. I tried to explain that the catheter was necessary to accurately measure his urine output as well as to drain his bladder, since it was nearly impossible for him to stand up to urinate because he was so weak, but he stopped me. “Some of the staff … you wouldn’t believe … one aide told me … ‘I don’t like you.’” He scowled bitterly. “I mean, it’s unbelievable. This place is one step shy of”—he spit out the words—“a prison.”
Over the next few days, Cimino’s condition worsened. Through my stethoscope, his waterlogged lungs sounded like Rice Krispies in milk. When I pressed on his belly, the veins in his neck popped out like fleshy straws. I knew he had little time left and there wasn’t much more I could do. He would not consent to a breathing tube or dialysis, so once he tired out or his respiratory condition worsened or his kidneys failed, that was likely going to be the end of it.
As he entered his final days, delirium set in, waxing and waning over his remaining time.
“Pull my pajamas down,” he ordered his wife one morning. “It’s hot!” He stared angrily at me. “I was up the whole night!”
“And so was I,” his wife wearily added.
“There’s a smell!” he cried, pinching his nose.
Oblivious, I asked him what it was.
“I don’t know … they give it to people when they are trapped.”
“Do you smell it now?” I asked.
“Just the residue … oh, let me get up … I can’t sleep.” He tried to pull himself out of bed. The oxygen mask was up on his forehead. He pointed miserably at the IV pump, which was beeping. “This thing is going off … day and night.”
I silenced the alarm. “Did you decide about hospice, Joe?” I asked gently.
His eyes glistened with anger. “I’m Catholic,” he growled. “It’s not for me to say … when I die.”
“But you need the care,” his wife said softly.
“Believe me, I know that … I do … I do.” Tears started to fall from his eyes. “Just let me die … Might as well save the money … and finish me off.”
His wife took me into the hallway. Her eyes were bloodshot, and she looked a mess. She had worn the same outfit for three straight days. “I’m sorry to put you in this position, Dr. Jauhar, but what would you do if it was your father?”
I had heard such questions many times as a doctor. It seemed to distill everything that patients or their loved ones wanted to know in a crisis. I had asked a similar query myself when Sonia was sick during her pregnancy. And yet it conveyed distrust, skepticism, an implication that medical care was contextual, somehow different if you loved the patient more.
“I would tell him to choose hospice,” I replied without hesitation. Hospice, I explained, would focus on his comfort. A nurse would come to the home to help with the dobutamine. If Cimino developed worsening heart failure, the nurse might adjust the drug or give him Lasix or put him on a morphine drip, but she would discourage him from ever returning to the hospital.
Mrs. Cimino blinked away tears. “He’s been in the hospital for three weeks,” she said. “I didn’t think it would take this long to go.”
“Go where?” I asked stupidly.
She laughed mirthlessly. “To heaven,” she said.
Cimino eventually agreed to hospice at home. By then he was staring out, glassy-eyed, gray-lipped, mouth wide open, strands of his greasy gray hair splayed out over the pillow. One morning he took my hand and placed it on his sweaty forehead. “He is taking your blessing,” his wife said.
“We’ve been together quite a while … Dr. Jauhar,” he rasped softly. “A whole year I’ve been suffering.”
I asked him if he believed in an afterlife. His eyes rolled upward in an expression of resignation. “You have to believe … there is something … to keep going,” he said. “Sometimes I think … I should keep fighting … but then I think … what’s the point … if you’re going to die anyhow?”
The room had a less tense atmosphere once palliative care was initiated. Mrs. Cimino remained composed, even in the face of her husband’s impending death. “Thank you for everything you have done for him,” she said the day they left. “I won’t ask what religion you are, Doctor, but he has faith as a Catholic that he will live again. He is going home—” And then she broke down.
“Well, I guess that’s it, then,” she said after a minute, as if she had finally crossed over the shadowy boundary to acceptance. She made to leave, then turned back to me. “There was so much fluid in his belly, Doctor. If we had come earlier, would he still—”
I assured her that it would not have made a difference.
“Just look at him,” she said, pointing at her husband from the doorway. “His face is so swollen.” The straps of the oxygen mask were digging into his cheeks. “Why does he look like that?” I told her that his kidneys had stopped working, so any fluid going into his body was accumulating there.
“How long, Doctor?” she asked. “Will it be today or tomorrow?” I told her it would happen within a few days. “That’s okay,” she said, stifling a sob. “I will be with him. I will stay with him till the end.”
Before Cimino was discharged home with hospice arrangements, a cardiology fellow came by and deactivated his defibrillator. At that point there was little reason to keep it on. Cimino was suffering terribly, and a sudden arrhythmia would have been a merciful event. I thought of my own grandfather’s death in New Delhi in 1995, on a September morning after his eighty-third birthday. He woke up complaining of abdominal pain, which he attributed to an excess of food and Scotch the night before. After a few minutes my grandfather bellowed a loud groan and went unconscious; just like that, he was gone. He almost certainly had a massive heart attack, but that wasn’t what killed him. It was the ensuing arrhythmia—the ventricular fibrillation—that prevented his heart from sustaining blood flow and life. When I talk to my mother about his death, she says she is sad that he died so suddenly. But she is thankful, too.
I often wonder how hard I should push patients with severe heart failure to get implantable defibrillators. When it comes down to it, perhaps the biggest sacrifice patients make when they get a defibrillator is the uncertainty over how they’re going to die. Sure, defibrillators prevent sudden death, but they also take away the sudden death option, which for many patients has a romantic, if not practical, appeal. Defibrillators are also enormously costly, $20,000 or more each. In the United States, more than five million patients have heart failure, and half a million new cases are diagnosed each year. If even a small fraction of these patients were to receive this device, the costs could reach billions of dollars. It makes sense to implant a device in the chest of a fifty-year-old with a good life who is providing service to society, but what about a seventy-year-old debilitated by heart failure and living in a nursing home? That patient might benefit the most in terms of reducing the risk of life-threatening arrhythmias, but would also probably get less benefit in terms of “quality-adjusted life-years.” Advances in medical technology, especially end-of-life treatments, raise all sorts of moral questions. Who should get care? How much is society willing to pay? Are some lives “worth” more than others? All a reminder that though medicine provides awesome technology, it does not tell us how to use it.
I received a message from Mrs. Cimino about a week later asking me to call her. I got through to her husband’s voice mail. “Joseph Cimino … is not available. At the tone, please record your message…” I hung up and called an alternate number.
When I finally reached her, she said, “The hospice people have been amazing. They are doing for money what his family won’t do for love. Don’t get me wrong—our sons are very close to their father. But one is in Minneapolis, and the other is in the hospital with an infected foot. He wants to be here—he loves his dad—but he just can’t.”
She cleared h
er throat. “Meanwhile, I just”—I could hear her sobbing—“hate to see him suffer. Anyway, Doctor, I appreciate your call. I don’t know what I was trying to achieve when I called you. Maybe there was something else we could do.”
Joseph Cimino died the following morning. His wife called again the next day after he’d died. “I want to thank you for everything you’ve done,” she said, sounding relieved. “There is no doubt in my mind that you added months to his life, and for that I will always be grateful.”
I asked her if there were any lessons she had learned that she could share with me. With so many of my patients dying, it was hard not to think about my parents’—and even my own—mortality. She did not immediately respond. “Just that life is finite,” she finally said. “No new lessons, I suppose.” I asked if she believed in an afterlife. “No,” she replied. “I’m an atheist. If there were an afterlife, he would have gotten in touch with me by now.”
In the United States, patients with terminal illnesses often spend a large part of the end of their lives in the hospital. At NYU Medical Center, where I trained, patients spend nearly thirty days of their last six months inside the institution. Eighty-five percent of Americans die in a hospital or nursing facility, and a third of all health care dollars is spent on patients in their last year of life. Nearly every doctor I’ve talked to recognizes that this wastes precious resources and prolongs suffering. But they—I—have not been taught a different way.
Hospice is one alternative. The word “hospice” derives from the Latin word hospes, which means “to host” a stranger. The modern hospice movement started in 1967, when Dame Cicely Saunders, a nurse, opened St. Christopher’s Hospice in London. Saunders formulated three principles for easing the process of dying: relief of physical pain, preservation of dignity, and respect for the psychological and spiritual aspects of death. In the beginning the majority of hospice patients had cancer, but in recent years cancer patients have actually been a minority. (In contrast, the number of patients in hospice with end-stage heart failure has doubled.) Today pain, nausea, and shortness of breath are properly recognized as scourges of the terminally ill and are aggressively treated. The number of American hospitals offering palliative care, which spans the spectrum from simply providing end-of-life counseling to full hospice care in the facility, has nearly doubled since 2000, growing to nearly fifteen hundred programs—that is, the majority of all hospitals. Perhaps the most surprising finding from these programs is that hospice patients live a month longer on average than similar patients who do not receive such care.
Doctored Page 14
