Doing What’s Right: Respecting Patient Preferences at the End of Life

Doing What’s Right: Respecting Patient Preferences at the End of Life

Don S. Dizon, MD, FACP

@drdonsdizon
Nov 11, 2016

Originally published in "Discussions with Don S. Dizon" on The Oncologist

As an oncologist, I have witnessed patients go home and heard later how they died at home, surrounded by family and friends. I have witnessed others die in a hospital room, comforted by the care of the inpatient team even as they depart this earth. These are the ones that stick with me and what I think about when I hear the term “a good death.” It’s what I would want for myself: dignity, serenity, and comfort.

The reality of the end of life, however, is that not everyone shares my view of what constitutes a good death, and I’ve come to realize that when a patient has a very different view of the end of life from mine, it can be very difficult to do what’s right.

Such was the case with Jean*. I met her during my time as an inpatient attending. She was only 32 years old and only 10 months ago was diagnosed with stage IV lung cancer. When we met she had been hospitalized for pain control. Review of her treatment history showed that multiple trials of chemotherapy had not been successful—her cancer was widely metastatic, including involvement her bones and brain. Still, she did not accept hospice, nor would she talk of end of life. She wanted more treatment, wanted to know what else could be done. Yet, she had also begun to cycle through inpatient stays due to her cancer. Two weeks ago it was brain metastases that had caused seizures, this time it was a pathologic fracture of her hip. All the while she had become weaker, bed bound, and unable to perform the simplest of tasks, like getting dressed on her own.

When I met her I tried to get a sense of her goals and preferences. She understood her cancer was advanced, but she was not going to stop fighting. She wanted to do “everything,” no matter how aggressive. It turns out that even her own oncologist had tried to talk with her about prognosis, but was rebuffed. Jean, despite how sick she was, refused to hear bad news and talk of “end-stage” anything. She even resisted a palliative care evaluation.

However, this admission would be the one where it all became critical. Very quickly during this stay, Jean began to decompensate. Her oxygen levels were unstable and in hours she went from not requiring oxygen to requiring a non-rebreather. We had wanted to get imaging, but she proved too unstable. We suddenly faced a potentially terminal situation.

“Jean, you’ve become very sick,” I told her. “We need to transfer you to the intensive care unit, perhaps even put you on a breathing machine.”

She looked panic stricken. “Will I make it off the machine?” she asked.

“I am not sure,” I told her, “but I am afraid you’ll die in the unit.” I had hoped she would refuse the ICU transfer, let us care for her and ease her pain and suffering, allowing her to recover with standard care, or else to die with dignity.

“Okay then.” That was her only response. The inpatient team was resigned to having her move to the ICU. They knew her better than I did, and they had witnessed how quickly she had deteriorated. I sensed that they had wanted to help her find peace, acknowledge that she was at the end of her life. I also sensed that they saw the move to the ICU as inappropriate, especially given how quickly and how significantly her cancer had advanced.

Still, with that, she was taken to the ICU and, later that evening, intubated. It turned out she had had several acute pulmonary emboli that had caused a strain to her right heart. She soon became hemodynamically unstable, requiring pressors to support her blood pressure. Despite all that the medical team could do, Jean died in the ICU—intubated, sedated, and alone.

I asked myself if I could’ve done anything differently, as her own oncologist has since. But, ultimately, we only have one life to live, and one death to experience. I suppose as much as I know how I want to die, I cannot assume that others will feel the same way. I have had patients embrace the term “death with dignity,” but it has not been universal. There are others who hear that phrase and shudder, because for them there is no dignity in death, there is only death.

*Name and identifying details changed for privacy.

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