by Sunita Puri
He used the same tone with me now that he had then, his wagging finger emphasizing every word.
I was tempted to decline the consult. I considered telling him he had no right to speak to me this way, and to assume that I’d inappropriately discuss hospice with his patient. But in the space between his request and my response, I thought of the advice that John had given me when I’d described my earlier interaction with Dr. Thompson, and how it made me want to refuse to see any of his patients. Though he had listened sympathetically, John reminded me that a patient’s pain relief mattered more than Dr. Thompson’s bad behavior. “You’re right,” I’d told John. I had to do for my colleagues what I did for my patients: meet them wherever they were in their understanding of palliative care.
“Okay,” I said to Dr. Thompson, “I’ll see him after lunch. But just so you know, I ask about the overall treatment plan just like any other consultant would.” I pretended I was speaking to Adrian, which helped me to keep my voice neutral.
Dr. Thompson nodded and went on his way. Adrian and I walked together silently, though I could sense his discomfort with what he’d just witnessed. Embarrassed, I said, “I’m sorry you had to see that.”
“It was weird,” Adrian replied. “It seems like he doesn’t really understand what you do during a consult.”
“Yeah, it’s an ongoing challenge. I have to reassure some of my more skeptical colleagues that I’m not going to put everyone on hospice or persuade them to stop treatment,” I said as we approached the elevators at Keck. “It’s sort of an occupational hazard,” I added, and we both laughed.
* * *
After writing our patient notes that afternoon, I checked in with Adrian to see how he was handling the emotional heft of the rotation. “I’ll be honest, it’s been tough,” he told me. “When I’m driving home, I think about the people we see and I wonder, what if it was me? What if it was someone I love?” He talked about his days with his girlfriend, a nurse at a nearby hospital. “It makes me feel grateful for the life I have because you never know what’s coming or could happen to you or someone you love.”
“This work certainly forces you to keep that perspective,” I told him as we wrapped up that day. “I think it’s really healthy to reflect on those questions. Death is an experience we will share with our patients.”
* * *
Several days later, after Jared completed his radiation treatment, he and Sylvia were ready to talk about hospice. Dr. O’Brien had visited them the night before and told them that any further chemotherapy would only harm him and possibly even hasten his death. He’d called me before and after his meeting with them, and I thanked him for stopping by. “They really trust you, and I think it was important for both of them, but especially Sylvia, to hear that information from you, someone they have known for years,” I told him.
Jared told us that his pain had worsened. “I had trouble sleeping again overnight,” he said. He wasn’t sure if radiation had made a difference. “I’m still weak in the legs, just less swollen,” he told me. He was looking forward to going home.
“Dr. O’Brien came by last night,” he said, looking at Sylvia. “And he told us that the cancer treatment isn’t working. He said continuing to take it might actually shorten my life because I’m so weak.” From the disbelief on Sylvia’s face, I could tell she was still processing the news. “So I think it’s time for us to hear more about hospice.”
I described what hospice offered and told Jared that he could get hospice care at home or in a nursing home. He looked at Sylvia. “Well, I don’t want her to overstretch herself. I require a lot of care these days. I was thinking maybe a nursing home.”
Sylvia didn’t blink but responded, “Absolutely not. You’re coming home.” She looked at him intently from her chair near the window. The morning sun threw alternating patches of light and shadow on her patterned blouse.
“Honey, I think we should think this through. I don’t want you to go on living in a place where I’d die. I don’t think that’s fair to you.”
Sylvia spoke firmly. “I want you at home. You need to be in your own home, with me and the dogs and . . . everything. I am not putting you in a nursing home. You will be with me until the end.”
Four days ago, I didn’t know whether Sylvia’s resistance and fear would soften into acceptance. I held my breath as I watched them speak to each other as though they were alone. Everything was out in the open: his worry for her after he died, her commitment to caring for him no matter what.
Because many of my patients were so sick, I knew that I’d eventually lose each of them. But they and their families don’t always know this. Many can’t hear it when I try to tell them. Yet somehow, through hours’ worth of conversations, a shift would take place. And the credit belonged entirely to the patients and families I spoke with. I could tell them the hardest of truths, but they ultimately had to decide whether they could accept and endure the most heart-shattering information, or the greatest loss. I’d watch as a mother’s rigid belief in a miracle might loosen, contemplating for the first time a possibility other than a cure for her daughter. I’d see a husband whisper to his dying wife, “It’s okay to go. We will be okay,” and watch her take her last breath minutes later. I looked on now as Sylvia told Jared that he belonged in his home, so that he could die his death where he had lived his life. This was the work of the spirit.
Sylvia turned to me and asked what type of support she could expect from hospice. We discussed logistics for a little while, until Jared said that he was tired and wanted to rest. “Not a problem,” I said, holding his hand with both of mine. “Thank you, Jared.” Sylvia stood up from her chair and hugged me. Outside their room, I put my hand across my heart and took a deep breath in and out, reminding myself never to take for granted the invitation to witness and shape conversations like theirs.
* * *
Just before Jared left the hospital on Friday morning, he told me he felt like a million bucks. Our conversation drifted from his symptoms and a question about hospice to his love for his dogs. I mentioned to him that I had considered adopting a therapy dog as part of our palliative care service. Jared and Sylvia lit up as I described my idea, and both heartily endorsed it. “That would be so calming and healing for everyone, really,” Sylvia said. “I can imagine that in a heated or tough meeting, people would probably be more civil and calm than usual because nobody would want to upset the dog.” We laughed together.
A serious expression crossed Jared’s face. “If you ever need anything from me to support that idea, you just let me know,” he said. “If you need me to write a letter from a patient’s perspective, or go to a meeting with you to advocate for your idea, you just call me.” Sylvia nodded. I was astounded by his generosity. I was convinced that if I asked for his help, he would follow through on his promise, even though he knew his days were numbered and his energy was limited.
“We’re just planning to stay positive and hope that we still have a good amount of time together,” Jared said, looking at Sylvia. “I can’t wait to go home with this beautiful woman.”
Jared looked at me. His brown hair, mussed from days of being in the hospital, looked longer and thicker than I’d remembered. His eyes, glassy with tears, nonetheless radiated a wistful joy. “Thank you, Doc. For . . . well, for everything. You are . . . well, you know.” I took both of his hands in mine, as I’d done before. “You are a gem, Jared. Thank you for letting me be a part of your team. Please, please call if there is anything I can do for you.”
Adrian shook Jared’s hand and thanked him for his generosity. Not all patients would want a medical student visiting with them at this tender time. Adrian had visited with Jared every morning, asking him about his discomfort and his emotional state. One of Jared’s lasting gifts was talking with Adrian, inviting him into the physical and emotional experience of his illness and his life.
* * *
&n
bsp; Jared died at home two days later in the company of Sylvia and their dogs. He’d died on Sunday afternoon, Dr. O’Brien informed me over email, shortly after lunch, when he’d managed a few bites of grilled cheese and asked to take a nap. He didn’t wake up. I thought of my last conversation with Jared, of the shine in his eyes, and was grateful that his death was as akin as possible to simply falling asleep. I scribbled a note on a Post-it reminding myself to call Sylvia. And I emailed Adrian, who had just completed his rotation.
“Thank you for letting me know that,” Adrian replied. “I only had the privilege of knowing him for a short time but as odd as it may seem, I feel like I learned a little about life, a little about death and pain, and a lot about the comfort and dignity we have the opportunity to offer our patients when their days on this earth are numbered. I’m truly grateful for having met him.”
As a teacher, I felt a deep sense of pride as I read Adrian’s words. All I’d ever hoped to achieve was a slight shift in a student’s thinking, to suggest that perhaps there was another way to doctor, a way we didn’t necessarily learn in medical school but perhaps knew intuitively, as human beings. I closed my patient charts and thought of Jared. I hoped that he wasn’t in pain as he died. I hoped he’d run his hands through his dogs’ fur. I wished that he’d had more time with Sylvia than he did.
And then I reminded myself of what I often tell my students: sometimes, people go when they are ready.
Thirteen
SPEAK
From a seat near the podium of a lecture hall on the medical school campus, I watch as medical students, residents, and attendings in the department of surgery take their seats in the brightly lit auditorium. It is a Friday morning in October, and I am about to give a Grand Rounds presentation on palliative medicine. A long-standing tradition across different specialties in medicine, Grand Rounds lectures are an opportunity to learn about important updates in medical research or clinical care.
In the ten minutes before my talk begins, I study the audience. A transplant surgeon sits to the right of the podium, drinking coffee and catching up with a colleague. He and I had debated his suggestion that I rename my team the “supportive care service,” since he felt that the vague and confusing term “palliative care”—and its association with hospice—frightened patients and their families. Several rows behind him sits a trauma surgeon with whom I work closely in the intensive care unit. He recognizes the benefits of palliative care for his patients and consults our team frequently, though he finds it harder to talk to the family of a dying patient than to perform a high-risk surgery. In the very last row sits a cardiothoracic surgeon who once described to me what it felt like to touch a human heart—an exhilarating mix of excitement, fear, and rapture—and the guilt he endured when he had to tell a patient’s family that their loved one’s heart was too broken to fix. He led the toughest conversations beautifully, but still asked how he could do better. I took a deep breath and tried to calm my nerves. I reminded myself that although the people before me practiced the all-consuming, awe-inspiring art of surgery, they were also simply human beings, hardwired to fix problems and devastated when they couldn’t.
We physicians are all fixers. We want to help our patients live long, healthy lives, and we value the role we can play in achieving that. We even derive a sense of our own identity from helping our patients to outlive their ancestors, to outsmart death. But although modern medicine has helped us make enormous strides in preventing previously lethal infectious diseases, improving the safety of surgery, and advancing techniques to diagnose and treat everything from cancer to heart disease, we cannot fix everything. In fact, we can only slow down rather than cure most debilitating chronic diseases, maladies including heart failure and emphysema and multiple sclerosis, all of which slowly progress, claiming our lives. This realization shouldn’t dissuade us from discovering new therapies and pioneering new technologies to extend and improve our patients’ lives. I wondered if, at this moment in the history of Western medicine, an important revolution could consist of both pushing the limits of nature while simultaneously accepting our patients’ mortality, nature’s ultimate limit. Can we do both as physicians? Can we strive to minimize the suffering inflicted by disease while also embracing more fully the truth that mortality is not a condition medicine should seek to cure?
What if we learned how to identify and talk about suffering and dignity while still in medical school, right alongside our efforts to learn how the heart and kidneys work, and how we diagnose and treat the body’s myriad afflictions? What if we learned how to discuss with patients both medicine’s offerings as well as its limits? What would the future of medicine look like if every medical student learned that scientific discovery and remembrance of our ephemeral existence go hand in hand? Would perhaps the greatest advance of all be a future in which the separate specialty of palliative medicine is indeed unnecessary?
As the audience continued to file in, I searched for my mother. Though her hospital had been my second home in childhood, this was only her second visit to USC, and the first time she would see me give a lecture on palliative medicine. It seemed fitting that she sit in an audience filled with surgeons, the group of physicians with whom she’d shared years of triumphs and arguments. There she was, at the end of a row in the middle of the auditorium, next to John and a senior surgical resident I considered a friend. As I watched her nibble on a muffin and sip a cup of tea, I thought of her surgical colleagues, the ones who’d first met me when my main interests were Grandma’s brownies and Scooby-Doo, the ones who’d suggested I pursue any career but medicine, the ones who’d bicker with my mother in the operating room but tell me how lucky I was to be her child. Though she’d worked alongside surgeons for nearly thirty years, this was the first time that she, an anesthesiologist, had been able to attend a surgical grand rounds. Her presence was both comforting and anxiety provoking. I still longed for her approval.
It was time to begin. The director of the surgical residency program introduced me, and as he spoke from the podium, I reminded myself to keep my goal small: if I could communicate what palliative care is and isn’t, and explain that our field complemented rather than contradicted the care of surgical patients, I’d have done plenty. Just a small shift in thinking, I reminded myself. That’s success.
I cleared my throat, looked at my mother, and began.
“How many of you have been confused about what palliative care is?” I asked, raising my own hand, surprised that my mother remained still, her hands folded in her lap.
About two thirds of the audience joined me. “I have to confess that even though I thought I knew what palliative care was when I applied for my fellowship, I don’t think that I fully understood the meaning and impact of the field until I became an attending, seeing patients on my own and learning from the many mistakes I made during my training.”
Though I’d spent weeks writing a fact-filled presentation organized around a patient case, I struggled to get through my slides. What followed was mostly a conversation rather than a lecture, which was secretly what I’d been hoping for. An introduction to communication strategies in palliative care simply didn’t lend itself to a PowerPoint presentation the way a review of lung cancer therapy might. The hour whizzed by as we discussed the right time to call a palliative care consult, common communication pitfalls, and the struggle to make enough time for difficult discussions with patients and families. Though I’d worried that the audience would remain mostly silent, detached, they instead asked thoughtful questions, answered the questions I posed, and confessed how they grappled with their own worries about disappointing families and guiding complex decision making when a patient was critically ill or dying. One surgeon worried about scaring patients if he opened a discussion about goals too early, but also feared the consequences of waiting too long to have a tough conversation. Another told me he struggled to frame discussions about goals without causing a family to lose ho
pe. In response to this comment, one of his colleagues said he emphasized to patients that he’d never abandon them even if, despite his best efforts, he could not promise them a cure. As they spoke to one another and to me, it became obvious that the questions they voiced weighed heavily on their minds, perhaps just as heavily as the difficult choices they’d made in the operating room. But though they had forums in which they together discussed and commented on operative errors, I wondered whether and how they debriefed challenging family meetings or thorny ethical questions that emerged in the care of the very sick patients we shared.
Since they were forthcoming about their own difficulties, I shared the many ways I fumbled in my own training and practice. This hadn’t been part of my plan, but I wanted them to know that communication, like the tying of various surgical knots, was a skill they could all learn, no matter how daunting it seemed. But it does take practice. I mentioned that a cheat sheet didn’t help me organize a successful discussion with Mr. Tan and his family, that I took and studied my notes on countless family meetings, that I’d had to practice what to say to Alice in front of a mirror each night until the words came easily to me, that there would always be family members like Teresa and Ray who tested the limits of my compassion. I shared my regret that most of us learn how to communicate with our patients about mortality and loss only through trial and error rather than with structured teaching and close supervision. Despite our very human impulse to run away from frightening discussions, ultimately communication is the basis of everything sacred in the doctor-patient relationship: trust, vulnerability, honesty, compassion. We could all learn to do it clearly and well.
