by Sunita Puri
I found Jared in his hospital room, sitting in a wheelchair. Sylvia perched on the edge of his hospital bed. He appeared to have aged ten years. His tan skin appeared leathery and dusky, its wrinkles and creases deeper, filled with shadows. He slumped forward in his wheelchair like a wilting flower, too weak to hold his body upright. His feet and legs had swollen, though his face and torso had thinned. Skin peeled off his ankles. Even on massive doses of pain medication, he could barely tolerate lying still in one particular position in bed. He was mostly bed bound. Moving independently was out of the question. Going to the bathroom required Sylvia’s full assistance. “I’ve been losing power in my legs,” he told me, placing his hands on his thighs for emphasis. “And my feet have become too heavy to lift,” he said, pointing downward. Despite his tenuous circumstance, his voice was calm and even, and his face radiated the same tranquility and peace I’d observed six weeks ago.
“I need to use all of my strength to move him from his bed to a wheelchair and then to the bathroom,” Sylvia told me, visibly exhausted. “I don’t even know if I’m moving him around correctly. I’m just kind of making it up as I go and I think I’m hurting him.” Sylvia’s eyes were puffy and shadowed with fatigue.
Adrian sat next to me this time as I spoke with Jared and Sylvia. Jared told me that for a few weeks his pain had been well controlled on the medications we had started, but once the pain worsened, it amplified exponentially. “I’m desperate for relief,” he told me, and I took his hand.
I told him that I wanted to get his pain under control with intravenous medications instead of pills for now. I also asked if he’d spoken to Dr. O’Brien recently about his cancer treatment.
“Well, his lab tests are getting better,” Sylvia said, opening her notebook to tell me his most recent result. “So my impression is that it is working.”
I wondered for a moment how much I should say about the fact that his cancer treatment was so obviously not working. It hadn’t helped him to feel better or gain back independence, which is what he’d hoped for. And those were the goals of treatment he’d identified six weeks ago. I had to find a way to bring those clear-minded goals back into the conversation.
“Sometimes, when a cancer is very advanced, lab results alone don’t always tell us whether the treatment is helping someone,” I began gently. “I think it would be important to talk with Dr. O’Brien about whether he thinks the treatment is helping you. I remember you telling me that you were hoping the pill would help you to feel better and be more independent. And from what you’re telling me, it seems like you’re actually feeling worse.” Jared nodded.
“Well, I can tell you I definitely don’t feel any better. I just want to get my pain under control,” he said. “I can’t live like this.”
“I hear you,” I told him. “And I am worried that your pain has gotten so much worse, and that you appear to have become much weaker since I last saw you a few weeks ago. I want you both to know that we can switch our focus just to controlling your pain and giving you the best quality of life possible. Dr. O’Brien and I discussed our thought that hospice might be a very good way to do this for you.”
As I’d expected, Sylvia recoiled. “No, I don’t think we’re there yet,” she said.
I had two options: stop or continue. Delaying this discussion wouldn’t prepare Sylvia for it. She would never be ready, and I would never expect her to be. And the longer I waited, the higher the chance that Jared would suffer a complication that might prevent him from getting home. I chose to continue.
“I know that hospice can seem like a scary word or concept,” I said. “Tell me what you know about it.”
“It’s basically when you give up and say there’s nothing more we can do. That’s when they call hospice in,” she said. Jared looked on, not saying much.
I explained that hospice was a type of care that Jared could receive at home, and its main focus would be on controlling his pain and any other discomfort he might have. The entire hospice team would also support Jared and Sylvia emotionally and spiritually, and make every effort to help Jared do or enjoy what meant the most to him in the time he had left. Sylvia wondered whether Jared could continue his cancer treatment on hospice, and I told her that generally that isn’t possible, that cancer therapy at this stage didn’t always improve quality of life and could instead worsen certain symptoms. “It is also important for you to know that in order to be eligible for hospice, two doctors have to say that you probably have six months or less to live,” I said. I dreaded saying this to Sylvia. She could see that Jared had suffered worsening pain and become more debilitated, but she didn’t know that these might be signs of dying rather than a setback that chemotherapy could resolve. She looked stunned. Jared nodded.
“I know this is a lot of tough information,” I said, “and my intention in telling you about this option is just to make sure you know it is an option, and one that Dr. O’Brien and I have discussed.”
“Well, we will talk about it together,” Jared said after a brief silence.
“Certainly. And in the meantime, I’m going to make sure that we have all the right pain medicines ordered for you,” I said as I shook his hand. “I’ll be back in the morning.”
* * *
As Adrian and I walked to see our next patient, I wondered aloud whether I’d spoken about hospice too soon.
“She seemed so scared when you mentioned hospice, but he didn’t at all,” Adrian observed. “She really wants him to get more chemo. But if he wants hospice, what do you do?”
I had become so used to these complex situations that Adrian’s question startled me. I’d asked something similar of Dr. McCormick years ago, when I still believed that our duty as doctors was to respect patient autonomy regardless of family members’ potential disagreements. “That’s a good question, and these situations aren’t really ones we teach you much about in medical school,” I began. “What you learn in medical school is that we should honor whatever a patient wants. But it’s more complex than simply thinking about patient autonomy because patients sometimes agree to do what their families want, not necessarily what they would choose for themselves.” Adrian nodded, and I continued. “This is why I try to come back to a patient’s goals and their own definition of suffering. I try to help a family hear what the patient has to say about their own life and what they want for themselves. In Jared’s situation, I think Sylvia will come around and see his perspective, but it is incredibly painful for her to acknowledge what Jared seems to know already. And I totally get that.”
“Okay. So for Mr. Douglas, his goal is good pain control, and the best way to do that would be hospice?” Adrian responded, his inflection a cross between a statement and question.
“When I first met Jared, he told me that his goal was to have his pain controlled to the point where he could walk without a walker. And even at that time, he wasn’t sure if chemo was helping him to meet that goal. In the six weeks since I’ve seen him, he’s only gotten weaker and less mobile despite being on chemo. I think hospice would be the best plan for him to be in his own home, suffering as little as possible,” I said. “And I think that’s the part Sylvia is having a hard time understanding—hospice isn’t giving up. It’s acknowledging that cancer treatment may not be the right choice anymore. When someone’s got a limited amount of time left, and their goal is comfort and quality of life, hospice can be a great way to help them.”
We walked past groups of students and hospital volunteers in training as we made our way past the fountain and palm trees outside the hospital lobby. “I think Sylvia needs some time to wrap her mind around what’s happening,” I continued. “Usually, most family members are pretty shocked when hospice comes up, but they become supportive when they understand that it’s the best way to address their loved ones’ suffering at this stage. I try really hard to remind everyone of the patient’s goal, and that usually helps.”
> “It was really good to see that,” Adrian said when we returned to our office. “Thank you, Dr. Puri.”
“Why don’t you see him in the morning, Adrian? You can check in on his pain and see if he’s more comfortable. Then we can go see him together later in the morning,” I suggested, and Adrian agreed.
* * *
An MRI showed that Jared’s cancer had spread to the middle of his spine and put pressure on his spinal cord. This explained the loss of power he’d described, and it also explained why, just over the past day, he could no longer urinate and needed a catheter to collect his waste. The oncology team wanted to start radiation therapy to decrease the amount of pressure on his spinal cord and hopefully relieve some degree of his weakness and urinary retention. Interestingly, this area was not where Jared experienced pain, and he was hesitant to accept radiation treatment. He’d had radiation before and thought it only made him tired and weaker. The oncology fellow asked if I might be able to help persuade him to try radiation. “I know he doesn’t have much time left, but we could just give him four or five treatments. That might at least prevent him from the worst-case scenario, becoming paralyzed,” she said.
Jared’s main goal at this point was to remain pain free, I told her. I’d be happy to discuss the option of radiation with him, but I knew Jared well enough to know I couldn’t persuade him to do anything he didn’t want to do.
On our way to see Jared, Adrian and I talked about my discussion with the oncology fellow. Adrian reported that Jared felt much better on the pain medications we’d started yesterday, and he was able to sleep through the night for the first time in weeks. He still had trouble moving his legs, though they were less swollen because we’d given him a diuretic. “So what are your thoughts on radiation for him?” I asked Adrian.
“I don’t know,” he confessed. “He says he only wants to focus on pain control, and the area where he has pain isn’t the area they want to radiate. But if he has cord compression, then how can we not give him radiation?”
“Great question,” I said as we stood outside Jared’s room. “And let’s go back to his goals. He wants to be pain free and as independent as he can be. It’s not clear to me that the radiation will really accomplish either goal, but it would stave off paralysis, which I think he wouldn’t want to experience. But the trade-off would be staying in the hospital longer than he might want to.”
“Can he go home and come back for radiation?” Adrian wondered.
“He could,” I said, “but making that trip every day might tire him out to the point where he couldn’t actually enjoy his time at home.”
* * *
When we entered the room, Jared lay in his hospital bed and Sylvia sat in a chair next to him. “Hi, Docs,” he said brightly when we entered the room. His pain was quite minimal, Jared said with a grin, but he was really torn about radiation. He wasn’t sure how it would help him at this point; a prior round of radiation had only worsened his fatigue and pain, and at that point he’d been much stronger than he currently was.
“That’s an important observation,” I told him, “and there is a chance that radiation will make you more tired. It may also worsen your pain for a little while. But it may also help prevent your legs from becoming paralyzed and can possibly improve your ability to urinate. What do you think?”
When I considered his predicament, I thought of his dignity. Dignity, like suffering, was a word I’d never thought much about in medical school. The first time a patient had used that word with me, he’d referred to the many indignities of being a patient, from having a catheter in his penis to wearing a backless gown to showering with supervision. I had always considered these aspects of a patient’s experience to be a series of temporary but necessary nuisances on the path to recovery from an illness. But especially these days, I’d observed how often patients felt their very self-respect compromised in the course of their illness and its treatment. “Is this worth it?” a middle-aged man with heart failure asked me once. “I feel like I’m a child again, with the nurse measuring how much I pee and people waking me up at night to check my temperature and only being able to eat what they tell me I can,” he said. “This is all supposed to make me feel better, and I appreciate that. But if this keeps happening, and I need to be controlled in these ways, maybe I’d be okay with less time on earth.” Compromising dignity had to result in a serious payoff. And for patients who had very little time to live, clinging to dignity was sometimes the way they could reclaim their power and humanity. Dignity was the last thing they could protect. Sacrificing it was too high a price for many.
I went out on a limb, hoping it wouldn’t backfire. “To me, the possibility of paralysis and being unable to urinate seem like issues of dignity.”
“Dignity,” Jared repeated. “I think I’ve lost so much of that by this point. But yeah, I agree. There would be nothing much worse than being paralyzed and not being able to pee. I could try it. But I don’t want my pain to get worse.” I assured him that we could give him extra doses of pain medication before radiation to keep him comfortable, and that if he felt radiation made him feel worse rather than better, we didn’t have to continue the treatments. He and Sylvia agreed. I let the oncology team know of their decision.
“No discussion of hospice today?” Adrian asked as we walked down the hallway to the stairs.
“Nope. If he had said he wanted to go home no matter what, I would have broached the subject again. But he’s here for at least four more days now, so we have time to address it. We don’t have to bring it up each time we see them,” I said.
Adrian reflected on the other patients he’d seen in his training who’d needed to have a conversation about goals. He wondered if it was realistic for all physicians to have these discussions. They seemed to require special skills. “When we did have conversations, they were more about whether or not the patient wanted a surgery or whatever other procedure, but not about what the patient understood the goal of the surgery to be.”
“I can understand why that is, even though I don’t agree with the reasons,” I said. “I personally believe all doctors are capable of having basic conversations about goals of care, but it’s a matter of helping them understand why these talks are so important. That’s never discussed with us really in medical school, and we’re more wired to do things rather than talk about them.”
Other patients we saw that day had different goals. A gentleman with heart failure told us that he wanted to die comfortably at home, but adamantly refused hospice care at home. If he were at home in Armenia, he explained, he would go to the hospital to be treated, so why wouldn’t he do the same here?
Adrian wondered why anyone would really want to come to the hospital when they could get hospice care at home. My own hospice patients had taught me that the theory of a peaceful death at home wasn’t realistic for everyone. Taking care of someone at home can be a very foreign concept to people who strongly believe a hospital is the only place to be treated, I explained to Adrian. Suggesting care at home can feel like abandonment to them.
A particularly cantankerous gentleman with advanced esophageal cancer grew frustrated when his oncologist and I tried to ask him about his goals. He had told his nurses he was tired of suffering, but also refused the medications prescribed to treat his discomfort. “I just want to make sure you really want chemotherapy,” his oncologist said, “because it’s important that you take all of the medicines we give you. It is okay if you don’t want it, and we’d just focus on keeping you comfortable. But I do want to hear your thoughts either way.” He grew angry then, insisting it was obvious he wanted treatment because he was in the hospital. “Years ago, doctors just gave me the treatment, they didn’t stand around asking me whether I wanted it!” he yelled. He rolled his eyes at us and mocked me when I asked if it was okay for me to ask about his symptoms. His wife tried to cajole him to cooperate with us—“They are trying to help you and yo
u are not making it easy for them!”—but he mocked her, too. At a certain point, I spoke firmly, telling him that we needed him to take his medications exactly as prescribed in order for him to feel well enough to get chemotherapy. That was the plan. He seemed to respond to my frank paternalism.
Adrian and I had to laugh after this discussion. “I don’t know how you kept your cool,” he said. “I would have been really offended!”
“In all seriousness, I think he’s probably very scared and is acting out a bit because of that,” I said after my giggles subsided. “But also, his reaction is a good reminder to me that some older patients really do think the doctor should just tell them what to do. Just as he was saying, forty, fifty years ago, we didn’t really pay as much attention to patient choice as we do now,” I said. “If he was expecting us to tell him what to do, then I can see why he got annoyed. The disagreement was really a big cultural difference, just the way that our other patient said he’d always go back to the hospital if he felt unwell.”
It was late afternoon, and the shadows cast by the hospital buildings grew longer and darker. As Adrian and I walked back to my office, we passed Dr. Thompson, an oncologist, who stopped to talk with me. He told me that one of his patients, a young man in his early thirties with widely metastatic cancer, had just been admitted to the hospital with severe pain. “I need your help with managing his pain,” he said, “but do not talk about anything else with him.” He wagged a finger at me and continued. “You always ask me about my plan for the cancer treatment, but that is not your concern. And do not talk about hospice or any of that. I only need you to manage his pain. Okay?”
I blinked, pressing my lips together to avoid blurting out a retort I’d regret, especially since Adrian looked on. I thought of the time I’d seen another of Dr. Thompson’s patients, one whom I’d found crouched on the floor, suffering from waves of nausea. Through tears of concern, his parents asked me what hospice could offer their son if he chose to stop chemotherapy for the cancer that had invaded his brain, lungs, and liver. When he heard about our discussion, Dr. Thompson publicly chided me at the nursing station of the oncology ward, asking who I thought I was to offer hospice to his patient. It wouldn’t have helped the situation to explain that I’d simply answered the appropriate questions of parents who saw that their son was slowly dying, had been for months, and he wanted to spend his last days at home in his own bed. He would die three days later, after Dr. Thompson told me that hospice was an absurd idea, that he wasn’t about to throw in the towel on this young man.
