That Good Night

by Sunita Puri

  Was Rajiv’s predicament a miracle or a prison sentence? I wondered as I overheard my father’s conversations with Bajwa Ji over the next three years, as I neared the end of high school and my visits to Bright Clouds grew increasingly rare. Would it have been better had he died in the car accident?

  * * *

  I wondered the same thing about Dennis: Had he died from his respiratory failure, would we have spared him and his family the agonizing suffering that accompanied his prolonged purgatory? Had we done him greater harm in saving his life than letting him die peacefully? But how could we possibly have known that our valiant attempts at saving his life would result only in the slow collapse of one organ system after another? It was our mission as doctors to use our skills and technologies to try to save Dennis, but what was our duty now, when both our efforts and his own body failed him? I left the ICU most days exhausted, not just from the intensity of the hours I’d worked, but also because these questions swirled around in my head about Dennis and about half the patients in that sixteen-bed unit. My father’s conversations with me about suffering came back to me often during that time. Human suffering wasn’t a topic we discussed in medical school, which I found shocking once I began residency and encountered every possible permutation of patients’ physical and emotional suffering. I memorized how to diagnose and treat a panoply of illnesses without considering how a person might suffer regardless of whether we could cure their ailment or not. On a quiet overnight call in the ICU, I searched for articles in medical journals about human suffering in medicine and found a piece written by Eric Cassell in 1982 titled “The Nature of Suffering and the Goals of Medicine.”

  “I will begin by focusing on a modern paradox,” Cassell wrote. “Even in the best settings and with the best physicians, it is not uncommon for suffering to occur not only during the course of a disease but also as a result of its treatment.” His words rang true as I thought of the patients our team cared for. Many had been sick for years with some combination of diabetes, emphysema, heart failure, or cirrhosis, and had now landed in the ICU because of a serious final blow that we couldn’t necessarily fix: a new and aggressive cancer, a large stroke, another failing organ. In the room next to Dennis, there was an extremely thin gentleman in his fifties with colon cancer that had migrated to his lungs, the tumor ferociously destroying delicate lung tissue and rendering him completely dependent on a ventilator to breathe; he soon died from pneumonia often caused by being on a ventilator for weeks. Across from him was a woman whose ongoing heart failure had worsened over the past two years, and in the past three months she’d been in the hospital more often than she’d been at home. Her heart grew weaker no matter how many aggressive medications I gave her, and finally one night her heart stopped entirely. After twenty minutes of CPR, we restored her heartbeat, but the damage to her brain left her unable to communicate or move. Her family agonized over whether to keep her alive with the support of machines or let her go.

  Even before coming to the hospital, the combination of Dennis’s COPD and arthritis made it nearly impossible for him to exercise or, on bad days, dress himself or get out of bed without help. The day that I prepared to place a dialysis catheter in him, I didn’t feel an ounce of excitement even though a co-resident told me she envied the number of procedures I had gotten to perform. I felt sheepish as I gathered the supplies I needed, wondering how I expected dialysis to help him when, even before he came to the ICU, he sometimes struggled to get out of bed on his own.

  I would have to insert the dialysis catheter into a large vein in Dennis’s upper thigh, adjacent to his groin. Pulling back his gown, I pushed an ultrasound probe against the skin overlying the vein. I found it, marked its location with a black X on his skin, and began to shave the gray and brown hair on his upper thigh. As I moved the razor over his skin, I noticed how thin and bruised his leg had become, how his once faintly contoured thigh muscle had given way to a wasted linearity. I looked at his neck, where I’d placed a large catheter about ten days earlier. I glanced at his wrist, where just the day before I’d had to place a new catheter to monitor his blood pressure; it had taken me three attempts to get it in the right place, and I’d left behind a large purple bruise that spanned his wrist and the base of his thumb. His nurse had recently placed eye drops in his drying eyes. A few drops had escaped and dribbled down to his pillow, leaving behind streaks that looked like tears. His vulnerability pierced me as I stood over him, readying another catheter for another vein.

  A deep sense of unease rose within me, a feeling beyond language that moved through me quickly like a shiver. I covered Dennis’s exposed leg with his hospital gown and stepped out of his room. I paged another resident and asked her if she’d like to place the catheter instead. Totally! Glad to help out. Give me about ten minutes to get there, she said enthusiastically. I was grateful that she didn’t ask me why I offered the procedure to her; I don’t know how I would have responded.

  She would go on to place the dialysis catheter, and Dennis would be connected to a tall green and gray machine that would do the work his kidneys could not. His oxygen saturations would not improve. His blood pressure would drop dangerously low, and he would need even higher doses of medications to maintain a normal blood pressure. His heart rate would begin to slow, first just for a few seconds here and there, and later for minutes. His once pink face would turn ashen. The tips of his fingers would turn blue and then black, a consequence of being on medications to support his blood pressure for many weeks.

  My attending and I would sit with Dennis’s wife and son on a Saturday evening and his wife would again ask if Dennis was suffering. I would gently answer with two sentences that I had recited while in front of my mirror that morning: “Even though we have been doing everything medically possible to help Dennis’s heart and lungs and kidneys recover, he has only gotten sicker. This is important for you to understand because I do think that we may be causing more harm and suffering when it seems that his body is dying.” I spoke slowly and gently, though I couldn’t manage to suppress the tremor in my voice.

  “Dad wouldn’t want to go on like this,” his son said, sifting through a tangle of IV lines and wrist restraints to find his father’s hand. Dennis’s wife gazed at her hands, fingering her wedding ring. “This isn’t him anymore,” she said, looking first at me and then at my attending. “It’s time,” she said, nodding as she looked at him and cried. “Please, can you make him look more like himself?”

  There was a time years ago when doctors wouldn’t have considered stopping Dennis’s life support. In the 1970s, a young woman named Karen Ann Quinlan fell into a coma after she took tranquilizers and alcohol and stopped breathing. She was placed on a ventilator and given a feeding tube. When her doctors determined that she was in a persistent vegetative state and would likely never be herself again, her parents requested that she be taken off the ventilator and allowed to die naturally; they did not want such extraordinary means to extend her life in a manner that caused her tremendous pain with little to no hope of neurologic recovery. But her doctors refused, believing that stopping the ventilator would constitute homicide. Eventually, the New Jersey Supreme Court ruled that Quinlan’s right to privacy enabled her father, who was eventually appointed her legal guardian, to refuse continued support from the ventilator on her behalf. Since she continued to be fed through a feeding tube, Karen went on to live for nine years after the ventilator was discontinued, dying, as her mother put it, “in God’s time.”

  The Quinlan case was the first of several important legal cases that recast life-sustaining technologies—ranging from a ventilator to dialysis to feeding tubes—as options, not requirements, for dying patients. Since patients ultimately held authority over their own bodies, they—and, eventually, their legally recognized medical decision makers—could request life-sustaining treatment to be withheld or withdrawn. Though morally complex for physicians, patients, and families alike, turning off a ventil
ator or removing a feeding tube didn’t legally constitute euthanasia or suicide. Turning off Dennis’s ventilator and dialysis machine, and stopping his blood pressure medications and his tube feeds, for example, would allow him to die naturally from the failure of his lungs, heart, and kidneys—a death that machines and medications had until now postponed. Still, I felt uneasy writing the orders to stop Dennis’s ventilator and dialysis. Intellectually, I remembered that it was his dying organs that would take his life, not the order I wrote to stop the ventilator. Emotionally, though, there was a finality to this decision that unsettled me even though I knew it would bring Dennis a hard-won peace. This isn’t about me or what I should have done differently for him, I reminded myself when I signed my handwritten orders to discontinue the ventilator and dialysis after giving him pain medication. But it felt personal. I’d failed both in treating him and in relieving his suffering.

  After a Catholic priest visited to give Dennis the sacrament of the sick, I began to undo the work I had done. After giving him a dose of pain medication, I removed the catheter I’d threaded through an artery in his wrist, the larger catheter I’d threaded from his neck into his heart, and the dialysis catheter my colleague had placed in a vein near his groin. I gave him additional pain medication to ease any shortness of breath or discomfort he might experience. Under the guidance of a respiratory therapist, I gently removed the breathing tube from his mouth, watching him carefully for any signs of gasping. The nurse turned off his blood pressure medications, and I shut off the monitor, telling his wife and son that the most important vital sign at this point was his comfort.

  Dennis didn’t gasp. He didn’t grimace, sweat, or moan. He looked like he was sleeping peacefully. About ten minutes later, his breathing began to change. He took deeper breaths followed by long pauses. When his breathing stopped entirely, his wife rested her face next to his and kissed his lips, then his cheeks and his forehead. Her voice choked with tears, she turned to me. “Thank you,” she said, turning then to embrace her son. The conversation I’d had with her about the reality of Dennis’s condition felt like my most helpful and merciful contribution to his care. I wished we had spoken sooner.

  Los Angeles, December 1997

  Over Christmas break during my senior year of high school, I went with my father to Bright Clouds to see Rajiv for the last time. Rajiv hadn’t been at Bright Clouds for nearly six weeks because he’d been in and out of the hospital. The first time, he’d accidentally regurgitated some of his tube feeding formula into his lungs and suffered a severe pneumonia; the infection had stressed his kidneys and he briefly required dialysis. Just two days after returning to Bright Clouds, his feeding tube became infected and he was taken back to the hospital, where he was temporarily fed through a tube snaked down his nose to his stomach until a surgeon placed a new feeding tube in his belly. In the year since I’d last seen Rajiv, his eyes looked more vacant, his skin had yellowed, and his once plush arms had thinned. Bajwa Ji sat in a plastic chair next to Rajiv, massaging his arms with baby oil while Amita sat with her eyes closed and her hands folded in prayer. Whenever I spoke with Rajiv’s parents, I felt guilty about resisting our visit. “God bless you always, child,” Bajwa Ji and his wife would say to me each time I saw them. “You are going to college, your father tells me,” Bajwa Ji said. “You will have our blessings for your studies and for your life, always.” He had become more frail, and walked with a cane. He now had to take medications for blood pressure, something he’d never needed before. “Please think of Rajiv, and please come visit us,” Bajwa Ji said as my father and I turned to leave.

  My father and I drove home silently. “Do you think it would have been better if he had died in the car accident?” The words escaped me before I realized how cold they must have sounded.

  “Do you mean would it have been easier if he had died in the accident?” my father responded.

  I could tell by his tone of voice that my father was about to go all philosophical on me. If my mother had a doctorly tone of voice, my father definitely had his analogous Mr. Socrates tone of voice.

  “No, I mean would it have been better. For him and his poor parents. They don’t do anything but take care of him and he’s never gonna get better. And it’s clearly affected their own health,” I said, suddenly angry on behalf of Rajiv’s parents but also angry at them. “I mean, they left their whole life to watch their son lie in a bed like this. But if he had just died, then they would have obviously been sad for a while but this is just torture for all of them!”

  “I would do the same if it were you,” he responded. “I would be there every day.”

  “Yeah, but I would never want to end up like that!” I said, waiting for him to respond by saying that I could learn something about faith from Rajiv’s parents, that sometimes things that seemed impossible were within reach if one prayed earnestly. “I would never want you to suffer that way either,” I told my father.

  “What do you think life is? All about avoiding suffering?” he asked, laughing.

  “I don’t think anyone should have to live the way Rajiv is living. It’s not really living. Isn’t that suffering? Being trapped like that?” I said.

  “Sunita, we can’t pick and choose the ways we might suffer in this lifetime,” he replied. “Rajiv is probably suffering. You can see that his parents clearly are. But that is why they need our support. It is difficult to suffer through this alone.”

  “I wish you would just tell them that Rajiv is never going to get better and they should just let him go. Put an end to all their suffering!” I snapped.

  “What you still have to learn,” he said in his best Mr. Socrates voice, “is how to deal with life’s suffering, because you can’t avoid it. Nobody can. But if you pay attention and help ease the suffering of others, that is God’s work.”

  * * *

  In residency, I began to understand the truth of my father’s words in a way I hadn’t before. As a teenager, I’d often been annoyed by my father’s seeming indulgence of Bajwa Ji’s wildly improbable hope for Rajiv’s recovery. But looking back on it, I am moved by his willingness to bear the unbearable with a family he didn’t know. He acknowledged their suffering. And he would continue to do so until Bajwa Ji and his wife, desperately homesick for India, somehow arranged for Rajiv to be flown back to Delhi, where he would be cared for at his childhood home with the help of nurses his parents hired. Bajwa Ji and my father continued their conversations until Bajwa Ji died in his sleep about two years after returning to Delhi. Rajiv would outlive both of his parents, until he, too, died in his sleep in his childhood home.

  As a young doctor, I was learning how to prevent or fix the body’s dysfunction, but that was different from the act of acknowledging and being with the suffering of another. Doing what my father did required a certain type of slowing down, which felt like a luxury during my residency, particularly in the ICU. I jumped from patient to patient and procedure to procedure, learning as much medicine as I could in a compressed period of time. Yet successfully treating a physical malady didn’t necessarily mean I’d eliminated a patient’s suffering. And treating suffering didn’t always mean curing a disease. What my father had been trying to teach me was that simply being willing to see and be with suffering was a part of treating it. I think he wanted me to know this regardless of whether I became a doctor or not.

  What is the purpose of medicine? I wrote on a Post-it note that I stuck to my refrigerator the night that Dennis died. Throughout my time in the ICU, I had tried so hard to enjoy and find meaning in the fast-paced, procedure-heavy, lifesaving work that echoed my mother’s career. But the quieter and slower moments still called to me. The ones when I could pinpoint exactly if or how a highly technical procedure would help a patient. The ones when I had the mental space to consider and answer questions about suffering. The ones that took me back to the weeks I’d spent with Dr. McCormick, when words were my tools and conversations we
re my intervention. If I’d had the right conversations with Dennis’s family earlier in his ICU stay, maybe his wife wouldn’t have had to keep asking about his suffering before our team finally acknowledged that we were probably prolonging it.

  Maybe every individual would define the purpose of medicine differently, I thought. But, I suddenly understood with clarity, my purpose in medicine is in palliative care. I wished that a more conventional specialty called to me, one in which I could envision myself fulfilled doing what other doctors seemed to enjoy. But no number of procedures or weeks spent in the ICU or the cardiology unit would change what I knew to be true.

  I’d followed my mother in a different way than I had expected to—into the certainty of medicine, yes. Yet I found myself compelled to step away from her path, into the uncertainty of palliative medicine. I decided to forgo convention for exploration, leaping into an unknown just as she had. On the last night of my ICU rotation, I sat alone in my apartment, too exhausted to join friends for drinks, sipping a glass of wine alone. I thought of how my mother had chosen anesthesiology, turning over her words in my mind as my body relaxed.

  I can’t explain it. Something told me it was the right decision to make, so I didn’t think too much and I just did it.