That Good Night

by Sunita Puri

  “Yes, obviously because of his condition he cannot do any of those things,” Mary replied. “But at least he is still alive.”

  “One thing that I think would help before we meet again is to really try to think about what Jack would say if God gave him a few minutes to speak,” Dr. Nguyen said. “You are right that we have been able to keep Jack alive, but I think we should also talk about his quality of life,” she continued gently. “One of the best things we can do for people we love is to try to figure out what they would consider most important to them if they are very sick and we may not be able to get them healthy again.”

  “We’ll discuss this,” Steven said shortly.

  “Please, please keep doing everything you can for my son,” Mary pleaded.

  Dr. Nguyen took Mary’s hands and smiled serenely. “We are. Part of doing everything for him means having this talk.”

  * * *

  During those first months of fellowship, I would think back to the fight I’d had with my parents when I told them about my interest in palliative care. Shouldn’t every doctor be able to treat suffering? At that point in their lives, isn’t it between the patient and God? Even my friends outside of medicine assumed that treating patients’ symptoms and discussing their mortality was part of every doctor’s job. If one is in the business of treating illness, surely one must also have the skills to recognize and discuss debility, mortality, suffering. What had happened to medicine, to medical practice, that enabled us to become physicians without acquiring the skills I was now learning? Were we so blinded by the shiny allure and promise of technology and scientific innovation that we’d convinced ourselves we could defy nature, overlook the common human experience of death and suffering? Were we so focused on learning facts and procedures that we’d forgotten to consider medicine’s limits? Had the time pressure to see more and more patients convinced us that we couldn’t take on the sorts of discussions we at some level knew were important? Had we built such a strong identity around always being able to offer something, anything, to patients that we prescribed medications or performed procedures out of a sense of professional obligation? Were we so paralyzed by the thought of litigation that we treated patients with procedures they demanded—especially toward life’s end—rather than considering the immense harm inherent in these offerings?

  As I grew into my role, my field’s existence struck me as a sad necessity, thanks to changes in medical practice. But watching Dr. Nguyen speak with Mary and Steven reminded me why our specialty mattered. We weren’t around to become other physicians’ mouthpieces or to have all difficult conversations outsourced to us. We didn’t expect that other physicians would lose the ability to treat pain and nausea and send all patients in the throes of physical suffering to us. But perhaps we practiced medicine with a slightly different understanding of empathy—one that, as Leslie Jamison writes, “isn’t just listening, it’s asking the questions whose answers need to be listened to. Empathy requires inquiry as much as imagination. . . . Empathy means acknowledging a horizon of context that extends perpetually beyond what you can see.”

  This isn’t to say that other doctors lack empathy, or that we must choose between practicing empathy and practicing medicine. I could understand my friends’ confusion, their expectation that all doctors should be able to do this work. But I couldn’t envision another doctor having the conversation that Dr. Nguyen led.

  “How do you do it, Dr. Nguyen?” I asked when we got back to our office.

  “What do you mean?” she replied, laughing as she offered me roasted almonds from her stash of snacks.

  “I was getting irritated with them, but you kept your cool the whole time!”

  Dr. Nguyen shrugged. “I was sometimes frustrated with them, but then I reminded myself of how many times they must have been told that Jack is going to die and didn’t, and how much they must hate these conversations. So I thought, what can I do to make this conversation different? Is there another way to approach the situation that would give them permission to understand things differently?”

  “And asking about Steven’s beliefs was a way for you to understand how he and Mary were making sense of Jack’s situation?” I asked.

  “Yes. Before we went and met with Mary and Steven, I had to remind myself that our first obligation is to understand their perspective on Jack’s care. Only then can I help them understand the medical team’s concerns. If we don’t try first to understand Mary and Steven, then we can’t help Jack.”

  I nodded and started to type my note documenting our conversation with Jack’s parents. As I wrote, I wondered what we would discuss at our next meeting, especially if Mary and Steven insisted on treatments that we all felt might not benefit Jack. “Dr. Nguyen, what if at the next meeting his parents say again that they want everything done for Jack? How would you handle that knowing what you know about them?”

  Dr. Nguyen sighed. “I am hoping that they will think about what will really help Jack to find peace, but you never know. If they ask for treatments like CPR, I think it’s then up to us and the medicine team to think about whether we should offer it.”

  Throughout my training, I’d heard the opposite. I’d felt obligated to describe all treatment options available to a patient and let them choose whichever one they wanted. I thought I was honoring patient autonomy, empowering patients to make decisions they felt were best for their lives and bodies. But I wondered why I sometimes offered patients treatments that I wished they’d decline. Deep down, I knew I wanted them to assume responsibility for making tough choices. When patients asked what I would recommend, I felt obligated to turn the question back onto them, asking them what plan they felt comfortable pursuing. “I don’t think I can make that decision for you, but I can give you the information you need to make a good decision for yourself,” I’d say, silently hoping they would pick the option I would recommend if I felt empowered to. We didn’t ask patients to choose which antibiotics we should use to treat an infection. But we handed over responsibility for the most consequential decisions, especially toward life’s end, to patients and families. Yet patient autonomy—the power to choose the type of care that was most in line with one’s goals and values—hinged on a clear understanding of how the therapies we offered might or might not benefit a patient. When we’d offer dialysis or third-line chemotherapy, we’d frame these interventions as possibilities. We were more opaque about how these possibilities may or may not be helpful. Sometimes, I felt like nothing more than a waitress taking an order. Okay, so we’re doing the dialysis and the pressors and, if your heart stops, you want the chest compressions but not the shocks? Making a recommendation, especially against a life-prolonging therapy, felt off-limits.

  “Are we even allowed to tell them that we won’t do CPR for Jack even if they insist that we do it?” I asked Dr. Nguyen curiously. “I always thought we had to honor a family’s wish since it’s a matter of life or death.”

  “Well, let me ask you this. Do you think that CPR will save Jack’s life?” Dr. Nguyen asked, crunching on more almonds.

  “It depends what you mean by ‘save his life.’ There’s a chance we could get his heart started again, but I don’t think it will prevent another infection or make his quality of life any better, only worse,” I said.

  “So would you recommend CPR as an option for Jack?” Dr. Nguyen pressed me.

  “Well, no. If I were the one doing CPR on Jack, I’d hate myself. I would have no idea what I’d be trying to do for him. I’d feel like the family was asking me to torture him.”

  Dr. Nguyen nodded. “So here’s the thing. We are trained to let patients decide for themselves what they want us to do for them. Which is fine in some situations, but not always when patients are as unstable as Jack. That’s when we need to rethink the strategy of presenting all possible options and asking a patient to choose.”

  “So you choose for them?” I asked, confused.<
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  “No, but we seriously consider what options we should offer. This happens all the time. Surgeons won’t take a patient to the operating room if they really feel the patient would die during the surgery. Oncologists will say a patient isn’t physically strong enough to get harsh chemotherapy. CPR is a medical intervention, just like surgery or chemotherapy. My personal theory is that we aren’t as confident recommending against CPR because we ourselves can’t face the fact of a patient dying without trying something, anything, to keep them alive.” I nodded slowly as she spoke, taking in her perspective. “And families feel that they want to give their loved one every chance to stay alive. But we shouldn’t put a patient through an uncomfortable procedure with no payoff.”

  Dr. Nguyen was right. I sheepishly thought back to residency, when I’d cared for a man I thought was crazy for choosing dialysis when his kidneys were failing because of his widespread cancer. In reality, I’d been the crazy one for offering dialysis and hoping he’d say no. I’d tried to dissuade him from choosing dialysis by reciting lengthy lists of the many discomforts it could cause—bleeding and infection from the large IV I’d need to place, nausea and fatigue from the dialysis itself. I’d even gone so far as to ask him, “Are you sure you want me to do this?” when he’d made his decision.

  “And you are absolutely right,” Dr. Nguyen continued. “CPR might restore Jack’s heartbeat, but getting to the point where he’d need CPR would be the strongest evidence that he is dying despite everything we have done.”

  “How are you going to tell them this?” I wondered aloud.

  “It depends on how the conversation goes. They may have already come to the conclusion that Jack should simply be allowed to die a natural death. But if they ask for CPR, I will have to make a recommendation against it. It all rests on bringing them to the same sort of understanding you and I have about CPR in Jack’s situation.” Dr. Nguyen smiled and nodded. “I know this is a very different perspective on family discussions. But I think we’ve become afraid of making recommendations to patients, and they need our recommendations the most in situations like Jack’s.”

  This, too, is a reason why our field was so necessary, I thought as I drove home. Even the smartest, kindest physicians who trained me in residency would probably offer Jack’s parents the option of CPR and respect whatever decision they made, while secretly dreading the prospect of compressing his chest if his heart actually did stop. Offering every possible option might spare us litigation or quiet angry families who wanted “everything” done for a loved one. And each of us carried within us a handful of stories of patients who had survived and left the hospital even when we had told their families it was time to let them die peacefully. The fear of condemning a potential survivor to death haunted us, distorted our decision making. After all, we’d never know what was possible unless we tried. But did shaping our medical practice around these perspectives really empower patients? Or did it just cause more suffering not only for patients and families but also for the doctors and nurses who cared for them?

  * * *

  In our next meeting, Mary and Steven told us that they had talked with their priest about Jack’s condition. They told us that the priest advised against CPR, which surprised them. You must think about the quality of his life, their priest had said. Catholicism affirms life, but not when preserving life comes at the cost of immense suffering. It is okay to let Jack go when it is his time, he’d told them. Though Mary and Steven felt relieved that their church would support a decision against CPR, they also thought making that decision meant giving up on their child, which they couldn’t bring themselves to do. “Our decision is to let God make the call,” Steven said. “So we think it is best for the doctors to do everything in their power, including CPR, and if it is Jack’s time, he will die no matter what the doctors do.”

  Dr. Nguyen nodded. “I am so glad that you were able to talk about this with your priest. These are very hard decisions to think about. CPR can be a good treatment for some patients who are otherwise healthy and who we expect to fully recover. But for Jack, CPR would not fix the reasons why his heart would stop if he had an infection we can’t treat. It would only prolong his dying. It wouldn’t give him the life you hope it would.”

  “But how do you know for sure, Doctor? You aren’t God, so all you can do is provide for Jack what you would provide for all patients and leave the rest up to Him,” Steven replied calmly.

  “That is exactly right, Steven,” Dr. Nguyen said. “The doctors taking care of Jack, we’re all human. I wouldn’t offer CPR to a patient as sick as Jack, simply because it would not fix the reasons he is so sick. Needing CPR would show us that all our attempts to head him hadn’t worked.”

  Steven and Mary looked at each other. “How can you as a doctor say you won’t try to save our son?” Mary asked, confused.

  “It’s not that we don’t want to save your son. But we as doctors cannot save every patient. Only God has that power. We are all very worried that we cannot save Jack. Our duty to him is to make sure he doesn’t suffer from his condition just because we can’t save him.”

  “Only God has that final say,” Steven said firmly.

  “What do you think happens when God calls us home? What might that look like for Jack?” Dr. Nguyen asked gently.

  “I don’t want him to suffer, no pain or anything,” Mary said. “When it’s his time, we will know and we will let him go.”

  “Nobody would want their child to suffer,” Dr. Nguyen said. “I have an idea I want to share with you that may prevent Jack from suffering when it is his time, and an idea to shift our focus, then, to his quality of life for the time that God gives him.”

  “You mean, we should just let him die?” Steven said indignantly. “Is that what doctors do now? Tell families that there’s nothing left to do?”

  Steven’s desperation was palpable. Though his words angered me, they also made me sad. He was a father losing his son slowly. Of course it wasn’t easy for him to hear what Dr. Nguyen had to say. But hearing him argue with Dr. Nguyen also exhausted me.

  “Doctors are human, Steven,” Dr. Nguyen said, unfazed. “We can do everything in our power for patients, but we also have a duty to tell you when we are approaching our limits so that we can figure out how to care for Jack if we cannot fix or cure him. I know this is very painful to talk about. But for Jack’s sake, I do think we need to discuss it.”

  She is not backing down, I thought. Yet there is nothing adversarial about this conversation from her end. This is grace.

  “Why are we talking about the end of his life right now?” Steven said. “He is still alive! Last time you said the antibiotics are working!”

  Dr. Nguyen took a deep breath and paused, a technique she told me she drew upon to allow strong emotions—both hers and others’—to disperse before making her point. “Remember what Dr. Puri mentioned, Steven? She said that all of us taking care of Jack just want to talk about the best way to care for him if he gets sicker, which we think that he will sometime soon. It might not be now. But we need to have a plan when this happens. It will be so hard if we don’t.”

  “So what do you suggest?” Mary asked.

  “When the time comes that Jack has an infection with bacteria that are stronger than our best medications, then our putting him through the types of treatment he is getting now will not fix the infection. If he gets so sick that our worldly treatments cannot fix him, that is how we might know that God is calling him. Stopping the heart is God’s call. And I think we should respect that call, knowing that we have done everything we can to try to save him.” Dr. Nguyen was kind but firm, and then silent.

  God’s call. A tiny phrase I had never heard in a medical conversation. Two words that said something enormous, eternal: dying is spiritual, not just medical. The moment of death can be sacred.

  “So what would you do then?” Mary asked.

 
“We would give him medicines to ease any pain or difficulty breathing he might have, or any other symptoms of distress. We would do this knowing that unfortunately his body may no longer respond to any antibiotics. Our focus would be giving him quality time with you, until it is time for him to return to God.”

  “But Jesus can perform miracles. We believe this. We believe our son will recover miraculously. That is what keeps us going, helps us to survive,” Mary said.

  “Mary, tell me what a miracle would look like to you,” I said, inviting myself back into the conversation.

  “It would be Jesus healing my son so he could talk and walk and be himself again,” Mary said, adding, “It pains me to see him the way he is. No mother would want this for their child. Any mother would pray for this same miracle!”

  “We all hope for miracles, all the time,” I said slowly. “But I sometimes have to remind myself what a miracle really is. It’s something truly unexpected, something that usually does not happen. It’s something really exceptional. Which is why it’s a miracle. I completely understand why you are hoping and praying for a miracle. I would do the same. But I also want to make sure we have another plan in place if the miracle isn’t part of God’s plan for Jack.” I spoke the words I’d written down recently in my journal as I thought about Jack’s case and Eva and my parents and the nature of miracles.

  Mary cried. I felt horrible, unable to say anything reassuring or comforting, because, truly, there was little in this situation that could be reassuring or comforting.

  “We don’t want him to suffer,” Steven said quietly. Mary continued to cry. He reached out to pat her hand, fingering the golden cross just below his throat. “We are just parents, wanting the best for our son.”