Doctored (18 page)

“We have a guest this morning,” Callahan announced pleasantly. He turned to me. My leg was shaking nervously. “Dr. Jauhar is our heart failure specialist and has a patient he'd like to tell us about.” I nodded, looking around at the twelve or so expectant faces. Then I cleared my throat and started to present my case. I had met Rose Crespo about four weeks earlier, when she was transferred to LIJ from another hospital after an episode of acute pulmonary edema, in which her lungs rapidly filled up with fluid because of congestive heart failure. An angiogram at the first hospital showed severe and diffuse coronary artery disease that was deemed inoperable. Surgeons at LIJ agreed with this assessment, saying that the risk of death during or immediately after bypass surgery was at least 50 percent. With no invasive options, she was treated medically and discharged from our hospital after a few days. But about a week later her daughter called to tell me that her mother was again feeling short of breath. Mrs. Crespo was readmitted and again treated with intravenous drugs. Her condition improved, but when the drugs were stopped, she had another episode of pulmonary edema. This cycle was repeated several times until the day she asked me to help her die. Though initially horrified by her wish, her family had come around to supporting her decision and wanted to be in the room with her when she passed away. “It seems like what they are asking for is physician-assisted suicide,” I said.

“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
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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.