Not all patients share the same views on end of life

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As an oncologist, I have witnessed patients go home and heard later how they died there, surrounded by family and friends. I have seen 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 is that not everyone shares my view of what constitutes a good death. 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 4 lung cancer. When we met, she was 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 about end of life. She wanted more treatment. She wanted to know what else could be done. 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 refused to hear bad news or 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 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 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 patient privacy.

Don S. Dizon is an oncologist who blogs at ASCO Connection.  

Image credit: Shutterstock.com

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