Abstract
It's ironic how frequently palliative care—comfort care—discomforts health care providers. With a driving objective to help patients and their families attain greater quality of life in the face of serious illness, palliative care should provide a degree of relief to providers as well. It opens a world of meaningful options for patients particularly when treatment options are limited, and allows providers to be allies in helping them explore those possibilities even when clinical interventions become futile or contrary to the patient's values.
I was a third-year medical student on my internal medicine rotation when I met 55-year-old Dan. Over the years, fat had accumulated in Dan's liver, leading to its inflammation, scarring, then finally cancer. When the cancer first appeared, it had been successfully treated with targeted chemotherapy. But when it returned two months before we met, the oncologists, interventional radiologists, and gastroenterologists all concurred that further chemotherapy, surgery, and a liver transplant were no longer options. Perusing the notes written by these specialists, I noticed a similar pattern. The phrase “nothing to do from our perspective” would appear near the end, followed by a recommendation for Dan to see another specialist, who would inevitably agree with the previous assessments.
The first time I examined him, Dan, though jovial, was jaundiced and had noticeable tremors. Fluid had clearly accumulated in his legs and abdomen. Laboratory results revealed his liver was decompensating and his kidneys were not getting enough blood. We figured he was either profoundly dehydrated or had developed hepatorenal syndrome, in which vasodilators released by a failing liver drop a patient's blood pressure and allow blood to pool in the internal organs. When I asked my resident, “How bad is this?” she grimly replied, “If this is hepatorenal syndrome, there's a 50-50 chance he'll pass away in the next two weeks.”
After two days of intravenous fluids on our floor, Dan wasn't improving. Quiet the opposite, in fact. His Model for End-Stage Liver Disease (MELD) score—a metric to assess the severity of chronic liver disease—was the highest my attending physician had ever seen. As Dan's family was barred from visiting him due to COVID-19 restrictions, I spent many hours with him. I was impressed by his dynamism as he recounted his long career as a civil rights advocate and a founder of a publishing house for books by Hispanic American authors. He was a fighter, and regularly reminded me that he was “never going to give this life up.” He requested that I update his family daily on his condition, and gradually I got to know them well too.
We stayed on course with fluids and medications to raise his blood pressure. We watched and we waited. When I raised the possibility of involving the palliative care service with my residents, they demurred, saying it would be terrible if we were to crush Dan's hope. Plus, we didn't have a clear prognosis to discuss with him.
Ever the proactive patient, Dan, began asking whether hemodialysis might help him. A quick search through the published literature informed me that hemodialysis is typically only performed in patients with hepatorenal syndrome who are waiting for a liver transplant. It would have slim to no effect on Dan's mortality since he had already been deemed ineligible for a transplant and his liver, by any measure, was not going to get better. Still, our team summoned the nephrologist, and I sat in on his meeting with Dan. When Dan repeatedly asked whether hemodialysis would prolong his life, the nephrologist responded, “The average patient in your situation would most likely not benefit from it, but it's available if you want it. You just need to be prepared to spend many hours each week in the hospital.” I saw a twinkle of hope in Dan's eyes.
After the meeting concluded, I caught up with the nephrologist and he confirmed what I had gleaned from my literature review, adding, “The problem isn't with his kidneys, which are in fact responding appropriately to his failing liver. Unless he's getting a new liver, hemodialysis isn't going to do much for him.” I wished he had made this point as clear to Dan during the meeting.
As the days wore on, Dan became increasingly sleepy. There were some mornings when I couldn't rouse him at all. One morning in particular, I walked into his room and found him with his eyes open and glazed, unresponsive, and his breathing shallow and raspy. I panicked, worried he was going to pass away right then. At this point the palliative care service had still not been called. Later that day, I spoke with Dan's family about what I saw. No words I uttered could adequately capture the reality of Dan's condition as I was witnessing it. His daughter voiced, for the first time, whether it was worth it for Dan and us all to push so hard, but the rest of his family insisted we continue with his treatment. Plus, they were optimistic about hemodialysis. Sure, the nephrologist had said the average patient wouldn't benefit from it, but Dan wasn't average.
The next day, I was allowed to plead with the administrators to make an exception to the visitor restrictions and let Dan's family see him. Each morning, I feared that I might come in to find the previous night had been his last, and I could not bear the thought of Dan dying without seeing his family any longer. And I desperately wanted his family to meet with the palliative care service, as Dan was no longer responsive enough to interact. After half a day of phone tag with administrators and wading through red tape, I finally received permission for the family to come in.
I met them the following afternoon and walked them to his room. The change in their expressions as they soaked in the full awfulness of Dan's condition was heart wrenching. What they found in his hospital room was a quivering body pierced with a bladder catheter, rectal tube, nasogastric tube, and at least three large IVs in both arms. His habitus had been transmuted; his face was puffy and his belly had almost doubled in circumference. This was as far as could be from the animated Dan they had last seen. I left as the palliative care team arrived.
Within 20 minutes, the family unanimously agreed to transition Dan to comfort care. They were now as insistent on bringing him home as they had been on continuing with treatments. Upon hearing this, I rushed to report it to my team. After checking Dan's latest laboratory results, the attending went to see him. She returned with a forlorn expression. “To be honest, I'm not sure if he'll even survive the night.”
Undeterred, my resident and I scrambled to put together the discharge paperwork and arrange for Dan's transportation home. The latter took three hours to finalize—remarkably quick given it was now late afternoon, much later than a typical discharge. Despite our best efforts, Dan died en route.
My short journey with Dan and his family was a devastating experience, not only due to the rapid collapse of his condition but also because of how inadequately we had prepared his family for the end. Every physician with whom I had raised the possibility of palliative care had been reluctant to quash Dan's admittedly infectious hope and fortitude. But I also wonder how much the reluctance might be attributed to a discomfort in acknowledging that even the most potent medications and advanced interventions were unlikely to help him live longer. When we assuage our own feelings of discomfort with issues of mortality by avoiding the harsh realities our patients face, we are providing comfort care to ourselves in the short run but, in the long run, doing a disservice to our patients. Dan languished for almost two weeks and passed away the day palliative care was started. Multiple specialists, even before he had come into the hospital, had independently recognized the futility of the procedures they could offer, and yet none had been willing to disclose he had little time left, resulting in delays in returning him to his family.
I wish for an increased awareness that palliative care can be provided at any point during the course of illness, and even along with curative treatment. I wish goals of care discussions weren't maligned as an indication of “giving up hope,” as if the only hopes worth pursuing are related to survival. Especially when death is imminent, we owe it to our patients to discuss the other kinds of hope that palliative care is designed to address: the hope to spend time with one's family, to pass peacefully, to pass at home. The medical hierarchy made it difficult for a medical student such as myself to speak up. Perhaps I could have pushed harder with the nephrologist and convinced him to be more forthcoming with Dan about the prognosis of the hemodialysis. Regardless, the medical establishment needs a moment to reflect on helping patients to preserve the dignity of at least dying how they want, if not when.