by Sunita Puri
“By the way, the neurology team saw me in the hallway and said they needed help with a patient,” one of the nurses said, turning to me. “She’s eighty years old and had a large stroke. One daughter wants to be really aggressive about her care and put a feeding tube in her, but the other daughter says that her mother would never want a feeding tube.” I jotted down the bones of the situation and agreed to see her right after rounds.
* * *
Masaki had short black hair cropped close against her round face. She may have been eighty, but her skin was luminous and her hands were soft and delicate when I held them and introduced myself to her even though I knew she couldn’t respond. Her daughter Emily sat in a brown chair. She had been typing away furiously on her computer but set it aside when I entered the room.
“Hi, I’m Dr. Puri. I’m a member of the palliative care team. It’s really nice to meet you,” I said as I extended my hand toward her, both excited and nervous.
Emily took off her glasses and squinted at me. She didn’t shake my hand. “I’m sorry. You’re from the who?”
“I’m from the palliative care team. I . . . um, I was here to see how I might be able to help with the, uh, with what your mother is going through,” I said, unprepared for her surprise and uncertain how best to explain my role. “The neurology team had requested that I stop by to talk with you and your sister about how best to take care of your mother given her recent stroke.”
“Our neurologist Dr. Scott never told me about this,” Emily said sharply. “I still don’t understand. What is pal . . . I’m sorry, what’s the word you used to introduce yourself?”
“Palliative,” I said. “I know that’s kind of a weird word, but basically what it means is that I’m here to make sure that your mother is comfortable and not suffering from any of her symptoms. I’m also here to help you and your sister discuss the issue of the feeding tube for your mother.” I wished I could stuff my words back in my mouth. I’d plunged right into a delicate discussion without really defining my role.
“Okay,” Emily said. “But I don’t know if we are ready for hospice or anything like that, if that’s what you mean,” she said.
“No, not at all. That’s not what I am here to discuss,” I said, flustered. “The neurology team had explained that your mother had a pretty severe stroke, and that you and your sister might have had different opinions about what your mom might want for herself in this situation,” I said, trying again.
“Yes, that’s true,” Emily said. “I mean, this was all completely unexpected. Mom had filled out a living will or something where she said she wouldn’t want anything aggressive when she’s dying, but I don’t think feeding her is aggressive. My sister disagrees. That’s the basic problem.”
“These types of situations are very tough, and my role is to help with the discussion about whether the feeding tube will help your mother in the . . . the right ways,” I said, reminding myself not to appear as nervous and inept as I felt. “We call these discussions ‘goals of care’ discussions. It’s another nebulous term but it means that when someone is really sick, we discuss their medical condition and what they are hoping for. From there, we consider whether doing certain procedures will actually help them to reach their goals.”
“So there’s a possibility that feeding my mother won’t help her?” Emily said, her brow furrowed in confusion.
“No, that’s not what I’m trying to say,” I responded. “I’m sorry, I don’t mean to confuse you more. I know you are in a really tough situation right now, and my only intention is to help you make decisions on your mother’s behalf that she might make for herself.”
“But that’s what is so hard,” Emily said, sighing. “My mother is a very private person and she never really shared any personal thoughts with us. We don’t know what she would say about this situation, but I can tell you I’d never forgive myself if she starved to death.” Her voice softened slightly. “What is the harm in just giving her the feeding tube?”
Masaki opened her eyes and stared at the ceiling. “Mommy, can you hear me?” Emily said, walking over to smooth her mother’s hair. I looked on awkwardly, feeling as though I’d interrupted an intimate moment. “I think what’s tough is that I don’t know if this is her new normal or if she’ll ever get any better,” Emily said as she reached for lemon-scented lotion and began applying it to her mother’s arms.
“That’s a really difficult piece of this puzzle,” I said, “and it is also part of the reason I think it will be useful to arrange a meeting with your sister, you, the neurology team, and our team to talk about that. I think what I was trying to say earlier is that if we think someone is going to recover, then doing certain things like placing a feeding tube can help. But if this is, as you said, your mother’s new normal, we would really need to think carefully about the role of a feeding tube for her.”
Emily took a deep breath. “Here’s the thing. Maybe that makes sense in your head, but to me that sounds like you saying if Mom is only going to be lying in a bed, then there’s no point giving her nutrition.”
“I’m . . . I’m really sorry, that’s not what I am trying to say,” I stammered. “How about this: Is it possible for us to meet again tomorrow with your sister here? I’ll be sure to get Dr. Scott from the neurology team to join us as well.”
“Okay. I think around this time tomorrow should work.” Emily refocused her attention on massaging her mother’s arms and I snuck out of the room sheepishly. As I tried to find my way back to the palliative care office, I realized I’d been so caught off guard by Emily’s initial questions and so focused on explaining how I could help that I’d forgotten to acknowledge the enormity of the question she faced: How do we make the right decisions for people we love?
When I described my meeting with Emily to Dr. Harris later that day, she told me that I would need to come up with a way of explaining my role. If patients, families, and other physicians don’t understand what palliative medicine is, I can’t effectively do my job. As I drove home that evening, I thought about how, in the last twenty-four hours, I’d gone from being a resident to a fellow, from living in San Francisco to living in Burlingame, from being a doctor who made every effort to keep patients alive to one who would likely lose each one she met. Yet the biggest shift was my new relationship to language, my attention newly focused on the words I used with patients and colleagues, and the words I heard them use.
* * *
It wasn’t an option for me to ease my way into my new role. I hit the ground running in fellowship, just as I had in residency, seeing patients who presumed I had an expertise that I was still cultivating. Controlling patients’ bothersome symptoms was easier for me than navigating family meetings; after all, I knew the physiology behind cancer pain or chemotherapy-related nausea or the awful shortness of breath that accompanied heart failure. But learning to participate effectively in family meetings actually meant unlearning some of the communication habits I’d learned in residency. So when I could, I found myself taking on the role of an observer, taking in the communication missteps between doctors and patients that widened into consequential misunderstandings.
“I want you to set the timer on your watch when this meeting starts,” Dr. Harris told me before we entered a meeting led by an oncologist in training. “Take note of how long the oncology fellow talks before allowing the family to speak.” The oncologist, a brown-haired man with a kind face, spoke for twenty-five minutes about the gravity of the patient’s diagnosis, the chemotherapies that theoretically could be used, and all the reasons why the patient was too sick to qualify for them. “So you’re saying there are still options for my dad?” the patient’s son asked the oncologist, legitimately confused because the doctor had spent more time describing treatment options for lung cancer instead of the reasons this particular patient couldn’t receive them. In a meeting with the wife of our forty-five-year-old patient, I jotted dow
n notes as Charlotte gently corrected her misunderstandings and fears about hospice care, but without insisting that the patient choose hospice. I cringed when I heard the neurologist taking care of Masaki tell Emily that there was “nothing more to be done” for her mother, that a feeding tube was the least of her problems. I sighed with relief when Dr. Harris spoke. “We may not be able to fix the stroke, but we can put together a plan to make sure that your mother is comfortable and not suffering from it. Your concern for her nutrition is very understandable, and we can talk about how to address that.” As a resident, I’d made or witnessed the same well-intentioned mistakes I observed, though not always with a Charlotte or Dr. Harris around to steer a conversation back on course.
My intense engagement with language made every patient visit unpredictable in new ways. A patient with a failing liver asked me how much time I thought he had to live and begged me not to mince my words. Another patient, a woman with end-stage breast cancer, pleaded with me not to tell her adult daughters that she had chosen to stop chemotherapy. “I don’t want them to think of me as a quitter,” she said tearfully. “But I can’t do this anymore.” A confrontational patient asked Dr. Harris and me to leave, telling us that he knew we were only there to talk him out of treatments so the hospital could save money. The next patient we saw, a gentleman with kind eyes, took our hands and kissed them, thanking us for the medications we’d recommended to ease the shortness of breath caused by his failing heart.
Colleagues reacted to our team in equally variable ways. We were both the death squad and angels of mercy, sometimes regarded with suspicion and at other times with admiration. Some thought that our main function was to send people to hospice and start morphine drips. Others understood the difference between palliative care and hospice. “Wait, we aren’t withdrawing care on this patient,” a nurse told me, glancing at my badge before I went to introduce myself to a patient with advanced emphysema and a severe pneumonia. “Oh, I know,” I said. “But the medicine team called me to help with a family meeting,” I explained. “Yeah, but you’re from palliative. So when you get involved, doesn’t that mean that we kind of back off on taking care of the patient?”
I began to practice introducing my role, and memorized responses to the questions I fielded daily. “Hi, I’m Dr. Puri,” I’d say in front of my bathroom mirror, looking at my reflection with a warm smile. “I’m from the palliative care team. What that means is that I’m a quality-of-life doctor. I’m here to help treat any pain or other discomfort you have, and to understand what you define as quality of life so that I can make sure we are doing what we can medically to make that a reality for you.” I told fellow physicians and nurses that a palliative care consult simply meant a patient needed some expert help with their pain management or a conversation about their treatment goals. It didn’t mean that a patient was imminently dying, or that they needed to stop their current treatments, or that they needed hospice care, or that their doctors and nurses had somehow failed and given up on them. It simply meant that their quality of life could in some way be improved.
The words and phrases I’d started to use routinely in fellowship still felt like a foreign language, one I stumbled over and used imperfectly. If language reflects something about culture, I thought one evening as I drove home, then maybe my verbal fumbling made sense. The language of medicine reflected its biggest priorities—identifying and solving problems, saving and extending lives. It was about CT scans and laboratory tests and survival benefit. Medical language atrophied when matters of suffering and mortality needed to be discussed, giving way to euphemism and avoidance. Lacking the language to discuss mortality is the ultimate way of erasing it. If we could somehow normalize instead of avoid the fact of death, perhaps phrases like “goals of care” and “advanced directive” would roll off our tongues as fluidly as words like “antibiotics,” “chemotherapy,” and “surgery.” Or maybe in normalizing the language around mortality, the culture of medicine would evolve. After all, practicing medicine requires the drive to enable survival I’d learned to cultivate during residency, tempered by the acceptance of life’s impermanence I was learning to articulate in fellowship. Physicians and patients needed fluency in both.
* * *
In the third week of July I got a page from Jackson, an ICU fellow whom I quickly came to admire for his intelligence, sense of humor, and dedication to his patients. “We need your help with a family meeting for this lady, Alice,” he began. He spent ten minutes exquisitely describing her illness and the ICU team’s many attempts to treat it, his voice tinged with shame as he told me she wasn’t getting better. I took notes as he spoke, and waited for him to tell me more about how I could help.
Jackson paused. “I know that’s a lot of info.”
I glanced over my scribbles and said, “This sounds complicated. Let me make sure I have all the facts. Alice is thirty-seven and had a bone marrow transplant three years ago for this rare lymphoma. She’s been in the ICU for two weeks because of a fungal pneumonia that has gotten so bad that she needs the full support of the ventilator and continuous dialysis. But she’s totally awake and can interact with you through writing. And you need some help discussing what should happen next with her and her family.”
“Yeah, but not with her,” Jackson said quickly. “Her family has been really clear that they don’t want us talking to her about this and freaking her out. Alice is totally awake and writes out what she’s thinking. She wrote that she would rather have us talk to her family instead of her right now.”
Though we’d all been taught in medical school that an alert and coherent patient must always be involved in their own medical decisions, I’d found that rule to be imperfectly applicable. I could understand why Alice might want her family to be her ears and voice, and why her family would want to protect her from hearing the entirety of her condition. Other families had been similarly protective of their loved ones over the past two weeks: Just talk to us about these things, not her. We don’t want her to think we are giving up on her. We definitely don’t want her to think she’s dying. If she knows she’s dying, she’ll give up all hope and die sooner.
“What have you discussed with family so far?” I asked.
“Well, we’ve told them that this pneumonia is extremely serious and it isn’t getting better even on the strongest antibiotics. Because she’s got such a bad infection, we can’t treat the lymphoma,” he replied. “But what we haven’t told them is that she’s probably going to die even despite everything we are doing.” Charlotte noticed my expression on the call, which she’d later describe to me as a mix of confusion and horror. She cocked her head at me, and I scribbled a note to her: What are they doing to this woman? I wrote, shaking my head. But this is not what I said to Jackson. Just a few weeks into my new role, I could see how often I’d done what he and his team had done, how I’d muffled the truth by talking instead about procedures and remote possibilities of improvement. But I also understood what made the truth difficult to acknowledge.
“Thanks so much,” Jackson said. “This has been a tough one for me. She’s so young and she’s totally awake and aware even though she’s obviously never going to make it out of here. I think that’s making it extra hard for my attending and me to have this discussion with the family.” At least there was this: a recognition that they needed help.
“This is a really tough situation,” I said, acknowledging his genuine dilemma. “I’ll definitely join the meeting.” It would take place in about an hour; Alice’s boyfriend, mother, and aunts would be there.
* * *
During my first month of fellowship, I’d started to visualize the treatment of serious illnesses as a journey the medical team took with patients, a hike taken together in a dense forest with only a sliver of moon visible overhead. The hike itself might be arduous and frightening, complete with trails that splintered into many paths, but both doctor and patient continued in search of their mut
ual destination. I thought of goals discussions as a necessary pause on the path, an invitation for both doctors and patients to take stock of the journey thus far, to discuss how best to reach the destination. Where on the map did patients think they were? Did the doctors agree? Was the destination still within reach, or had a boulder fallen on the known path to reach it? Was there a way around the boulder, or was it important to consider a different destination? Continuing on a tenuous journey blindly was a recipe for failure. But a goals discussion could be helpful only if the doctor could tell the patient, clearly and compassionately, if they were at a juncture where either of two trails would lead them to their destination, or whether they now found themselves unexpectedly at the edge of a cliff, their destination now out of reach. And if they needed to aim for a different destination, what sort of place would the patient want to see? What would they want along this new, different path?
“Family meetings are a procedure,” a prominent palliative care physician named Susan Block had once said, “and they require no less skill than performing an operation.” She gave me a new way of understanding how meticulously Dr. McCormick prepared for family meetings. I’d taken her words to heart and appreciated the way her explanation cast the intent and importance of a key intervention in our field as similar to any other time-intensive, critical, and useful procedure in medicine.
