by Sunita Puri
I prepared for my discussion with Alice and her family methodically, as a surgeon might prepare for surgery. I searched for any summaries of recent conversations with her about her treatment preferences in a scenario like the one she currently faced, or for documents like an advanced directive in which she might already have specified what types of medical interventions she would want if she couldn’t be cured. If the territory I explored in a family meeting was based in the minds and hearts of my patients, then these notes and documents were my CT scans, giving me a glimpse inside their prior thoughts about worst-case scenarios. Even though Alice’s disease was fast-moving and could come back with a vengeance, her lymphoma specialist hadn’t discussed with her what would be important to her if that situation arose.
My conversations with the patient’s care team were akin to the lab results I’d reviewed in other scenarios. I spoke not only with physician colleagues but also with social workers and chaplains who might have seen Alice. I tried to get a sense of how any prior discussions with Alice and her family had gone. Were there certain family dynamics I needed to be aware of in the meeting? Did Alice find solace in prayer or a particular faith?
And last, as I integrated the information I’d gathered about Alice, I wrote down a set of questions I hoped to pose during the course of the conversation. If surgeons memorized certain steps to guide them through an operation, my lists of questions were my own guide through the procedure I hoped to perform. For Alice, I wrote down the following: Was she bothered by any troublesome symptoms? What did she understand about her disease? If her time was shorter than we would like, where would she ideally want to spend it? In other words, what would she want her doctors to do for her if they couldn’t cure her? But even after diligently reviewing a patient’s chart, speaking with other members of their care team, and writing out a map of questions for myself, I approached family meetings with a healthy respect for what I couldn’t possibly know or anticipate.
Ideally, palliative care specialists and other physicians helped patients think through these complex, deeply personal questions when they were still well enough to consider their options, talk with their families, and ensure that their wishes were known and written down. But Alice’s situation was far more typical. We were on a trail with no map, our path blocked by a huge boulder.
Although I didn’t find what I was looking for in Alice’s chart, I did find great detail about how she’d gotten so sick. When Alice was in her early thirties—around my age at the time—she was diagnosed with lymphoma and, after nearly dying from the infections and organ damage the lymphoma caused, underwent a bone marrow transplant. It bought her three years of largely uninterrupted life. She went back to work. She adopted a puppy. But over the six months before her current hospital stay, she began to cycle in and out of the hospital with one illness after another: a severe pneumonia, kidney failure, an episode of confusion. Her lymphoma had returned, eventually devastating her immune system. An aggressive fungal infection soon made its home in her lungs. She became breathless and blue, and was placed on a ventilator.
The ICU team hoped that the ventilator would give her lungs time to rest and recover while powerful antifungal medications battled the infection. But the medications damaged her kidneys, and she needed dialysis. And then, when a second infection entered her bloodstream, her blood pressure dropped and she needed medications to keep her blood pressure high enough to continue dialysis and improve blood flow to her brain. Even though her anemia stabilized with daily transfusions, dialysis cleaned her blood continuously, and her blood pressure remained artificially acceptable with the help of medications, Alice couldn’t inch her way off the breathing machine.
I looked at the computer screen intensely, jotting down the phrases I might use to distill the details of her medical situation in language that she and her family could understand.
* * *
Alice was sound asleep when I went by her room to introduce myself prior to the family meeting. I glanced at the clipboard next to her bed, filled with fragments of conversations in wobbly handwriting.
Did Giants win?
Pay electric bill
Pancakes
Where is he?
Around the words, I noticed doodles of flowers and butterflies surrounded by a border of concentric circles. There were stars circling a crescent moon. There was her own name, written in cursive and block letters. If she didn’t have the breathing tube in her mouth or the IVs in her arms, she might have looked like any other woman in her late thirties taking a nap. I wondered whether it was miraculous or tragic that medicines and machines had gotten Alice well enough to be herself, but not well enough to leave the ICU.
I made my way to the ICU waiting room, where I sat at the edge of a half-moon formed by the ICU attending physician, Dr. Frankel, Jackson, and Charlotte. Alice’s mother, aunts, and boyfriend, Chris, sat across from us. Dr. Harris couldn’t join us, and had wished me luck. I listened as Dr. Frankel told Alice’s family that Alice’s pneumonia and lymphoma were both getting worse despite the support of antifungal medications, blood pressure medications, the ventilator, and dialysis.
“What probably makes Alice’s situation especially tough for all of you is that she is really sick, but she can still interact with you, recognize you, write down what she’s thinking for you. This makes it harder to understand that she’s not likely to improve,” Dr. Frankel told them gently. “We are very worried that Alice may not ever be able to breathe on her own without the ventilator.”
Chris, a muscular man with thick black hair, looked at the ground, shaking his head. One of Alice’s aunts, a tall brunette named Elaine, broke the brief silence by asking, “So what does that mean, then?”
“Well, part of the reason that we wanted Dr. Puri from palliative care to join us is so that we could all talk together about some of the hard decisions we might have to start thinking about,” Dr. Frankel said, nodding at me and inviting me into the conversation. The reality of Alice’s situation had been an understandable blow to her family. Perhaps my most important task was to get to know Alice’s family and, through them, Alice. I started off gently.
“It’s very nice to meet all of you, though I’m sorry that we are meeting in these circumstances. I think how I can be helpful here is to help you think about what Alice would want if, indeed, we aren’t able to get her off the breathing machine,” I began, nervously aware that many pairs of eyes watched me. “I know that right now you’d prefer that we talk with all of you, the people who love her, about these treatment decisions.”
Chris began. “The first thing you need to know is that Alice is a fighter. She isn’t going to give up easily. Not at all.” He crossed his arms over his chest and sat up straight, continuing.
His voice was alternately fierce and tender as he recounted all the bad news Alice had received over the past few years, and the ways she had defied the odds delivered to her in similar meetings. “It’s always a bad sign when a bunch of doctors want to meet,” he said. “They’d have meetings like this one all the time when she was getting her transplant, but she made it through. She fought through that, she fought through the side effects of the medications she had to take, she fought through the last three times we’ve been to the hospital. So I knew coming in here what this was going to be about. But I’m telling you what Alice would say—she’d want everything done to get her better.”
Now that I was more fully immersed in and attentive to the words that both patients and doctors used in these meetings, I’d discovered that the meaning of the word “better” could be fairly elastic. Dr. Frankel might describe Alice as “better” if she could live without the support of the ventilator. Chris might think Alice was better if her lab results improved. Alice might only consider herself better if she could return home.
So I asked: “How do you think Alice would define getting better? What would that look like for her?”
; Chris raised his eyebrows. “Better is better. You know, meaning she gets off the machine and we can get her home.”
I clasped my sweaty hands together, taking a deep breath and trying to calm myself. I tried again: “I guess what I’m trying to say is that we’re not sure Alice is going to get off the breathing machine. I’m wondering what might be important to her if we can’t get her better in the ways we hoped we could.”
“I’m telling you, that’s not going to happen. She’s going to get better. She’s pulled through worse before. She is a very strong woman.”
Elaine rolled her eyes and shook her head. “Okay, Chris, you need to listen to what the doctors are trying to tell you. They are all trying to help prepare us for the fact that she might not ever come off machines and go home. And come on, I seriously doubt that Alice would want to be on machines for the rest of her life just because you think she is a fighter.”
“You don’t know her like I do,” Chris snapped. “You haven’t been there every single time she’s gone to the hospital and come home so weak that I have to stay up all night watching her every move.”
“I’ve known her for over thirty fucking years,” Elaine said, exasperated. “Don’t you dare tell me that you know my own niece better than I do.” Alice’s mother patted Elaine’s leg. “That’s enough, Elaine,” she said softly, taking her hand.
Elaine spoke again, looking at me: “Are you saying she’s going to die no matter what you do for her at this point? With or without the breathing machine, she’s going to die?”
This was what Jackson struggled to articulate to me on the phone. Alice’s young age and complete lucidity made the fact of her gradually dying body painful for her doctors to acknowledge, let alone communicate to her loved ones. We all secretly hoped that her age could help her to defy the odds. Still, even if she somehow made it off the ventilator, her lymphoma would almost certainly take her life shortly thereafter. We couldn’t discuss Alice’s goals without being honest about her decline, but could we be certain that our worst fears for Alice would actually become her reality? How certain did we need to be in order to discuss the worst-case scenario?
“We aren’t sure what is going to happen, which is why we want to start thinking about what we should do if we come to see that she’s not getting better despite everything we are doing. I know it is really difficult to think about that possibility.” I was careful to speak slowly and softly, observing the body language of her family members.
“You seem like a very nice person, and I appreciate you trying to help us out. But if you’re asking me to say we should stop the breathing machine at some point, the answer is no,” Chris said. “Absolutely not. She’s going to pull through.”
“Oh, certainly not,” I assured him, shaking my head vigorously. “We just want to be honest with you about the fact that right now our best treatments aren’t working as well as we would like them to. And if they continue not to help Alice, she may get sicker very quickly. At that point, we may not be able to offer much more treatment than we are giving her already. It would be harder to have this type of discussion in the middle of an emergency, so we are just trying to give you all time to consider what we should do in a hard situation in case it arises.”
“Thank you,” Elaine said after a brief silence. “We really do appreciate it.”
I glanced at Dr. Frankel, who spoke. “We should meet again three days from now to give you another update on how she is doing,” he said. “I think that it’s important for you to think about these questions as a family. You might even consider bringing up some of these topics with Alice.”
Chris hunched over in his chair, looking down at his clasped hands, and then sat up and stretched. As I rose from my chair, he gestured at me and said, “I get this feeling that you’re a nice person. I can see that you want to look out for us. Maybe you should talk to her,” he said. “But promise you’ll be gentle. Don’t talk about death or anything like that. Just kinda get her thoughts on this situation. Maybe she’ll open up to a new person.”
His change of heart surprised me. I nodded. “I would be very happy to talk to her. And I promise I’ll be very gentle.” Although ideally Dr. Harris wanted us to meet patients as early as possible—when they first got sick rather than when they were close to death—I could see how at times being a new face might be helpful.
“Just please stop the conversation if you think it’s getting to be too much for her. I can’t have her demoralized. That might make her die sooner.”
* * *
Hours later, I returned to Alice’s room but found her asleep once again after getting a hefty dose of pain medication. Elaine sat next to her, flipping through Vogue magazine. “Doesn’t she have a right to know everything you and the rest of the team just told us?” Elaine whispered before I left. “I understand why Chris has got his panties in a bunch about this, but I don’t think lying to her is the answer. But then, how do you even tell someone the truth in this type of situation?” she wondered. I didn’t know. Most of the patients I had seen in residency who were as sick as Alice were either too sedated or confused to participate in a discussion; my only option was to speak with their families. I had never had such a delicate conversation with a young patient who was connected to a ventilator but fully awake.
I left work most days asking myself questions with no easy answers. When I was in residency, I constantly made mental notes about the medical facts and conditions I needed to study: how to interpret blood gases more quickly and precisely, how to do a more precise physical exam of a patient in heart failure to decide whether or not their total body swelling was improving, the best way to remove fluid from a painful joint to make sure it was only gout, not an infection. These were generally matters I could look up in an endless number of educational resources online, on my phone, in study guides that lined our residents’ workspace.
But there were no study guides or formulaic answers to the questions I asked myself after leaving work those days. What if Alice told me that she wanted to know every detail of her situation? How much should I actually share with her? How could I convey the truth of her situation in a way that didn’t demolish whatever hope she might have for some semblance of recovery? If she asked me questions I didn’t want to answer, would my silence, or well-intentioned euphemisms, cause her to have false hope for a miraculous recovery? In conversations with other patients over the past few weeks, I’d at least been able to discern their emotional state and reactions to our conversation by their tone of voice; when talking with Alice, I’d have to interpret her emotions through written words and facial expressions.
It would have been easy for me to comfort myself by saying that these questions were specific to Alice’s situation, that her case and circumstances were exceptional. Yet although the medical details of various cases might differ, they shared certain tricky moral dilemmas. Should Alice be the one to make her wishes known? If the ICU team felt strongly that Alice was going to die no matter what they did for her, shouldn’t they tell her that? But wasn’t it possible, as Chris had said, that Alice might make it through this episode as she’d defied the odds before? Could we talk to her about the reality of her situation without destroying her hope? Or would a truly honest discussion about her illness force her to hope for something different?
* * *
The next morning when I went by her room, Alice was awake. Her notebook was already filled with shaky scribbles, pieces of various conversations that fit together like a stream-of-consciousness poem: no pain; can I have water; my boyfriend; the tube hurts; call her.
“Hi, Alice,” I said, pulling up a plastic chair to sit next to her, smiling nervously. She smiled back and waved slightly with her right hand. Her brown hair was pulled back into a low bun that rested on her right shoulder. Her delicate mouth, dried blood at its corners, wrapped perfectly around the breathing tube. “My name is Dr. Puri, and I am from the palliative care
team,” I continued slowly. She nodded. “Not everyone has heard of palliative care, so let me tell you what my role in your care is,” I continued, watching Alice’s face closely. “I want to help make sure your symptoms and discomfort are well addressed. I’d also like to make sure that you fully understand your medical condition. I’m here to talk through what you are hoping for in your situation and to be sure that you are as well supported as you can be.”
Alice nodded, her expression neutral. I asked whether she’d had any pain, shortness of breath, or nausea. Alice shook her head no. She pointed to the breathing tube and grimaced. It’s scratchy, she wrote. I asked her if she had tried a small dose of pain medication to treat her very understandable discomfort. She nodded again and wrote, Makes me sleepy but it works.
I asked her about her life before she got sick. She had been with Chris for many years. They lived a few blocks away from the apartment I had lived in during residency. She smiled as much as the tube in her mouth would allow as I asked her whether she had been to the neighborhood brunch joint (yes—and she loved the pancakes), how long she had lived in San Francisco (fifteen years), and what she did for work (she worked as a secretary but was thinking about going back to school to study psychology). She was raised Catholic though she didn’t practice. She was hoping to go home soon; she missed her dog, her bed, the familiar smell of her kitchen. A minute of silence passed before she wrote: Will I be able to go home?