The Lingering Effects of End-of-Life Decisions after One’s Life Has Ended

The Lingering Effects of End-of-Life Decisions after One’s Life Has Ended

Don S. Dizon, MD, FACP, FASCO

Sep 24, 2013

I remember when Susan*, a close friend of mine with breast cancer (who had been living with metastatic disease for about a year before), was told she was  terminal. Beyond the shock and fear, Susan felt grief and anguish that her life would end so much sooner than she (or any of us) had expected. Suddenly, Susan had so many big questions—"What am I supposed to do now? How am I supposed to live knowing I am dying?"

Afterwards, our conversations ceased to be about treatments and clinical trials. Instead, we discussed her symptoms and ways to manage them. She had so much to do and she didn’t want to let “terminal cancer” get in her way. Although she continued anticancer treatment, she understood that its goal was primarily for palliation. As such, her questions and further decisions about treatment shifted. She refused any that might expose her to side effects that could seriously impact the quality of the life she was determined to live. In addition, Susan’s doctor had been proactive about discussing palliative care and she had enrolled in a home palliative care program.

After Susan died, I imagined her husband would be devastated, both emotionally and physically. Yet, speaking to him afterwards, I was struck to see that while he was grieving, he had already begun adjusting to a life without her. As he looked back, he explained how hard it had been to see Susan go through the diagnosis and treatment of breast cancer, to watch her deal with chemotherapy’s side effects, then to see her recur and undergo even more treatment. He had said how their experience had brought them so close, closer than in any other time in their marriage, and he was grateful to see her finally be at peace at the end of life. To me, Susan and her husband were a clear example of commitment--a living example of “in sickness and health, til death do us part.”

Although she had passed on a while ago, she came to mind again after a trip to visit with friends. We covered many topics, but one that stays with me was the heartbreaking death of the mother of my friend Andrea, and what Andrea lived through during her mom’s final months and weeks:

“My mother was 87 years old and in the last stages of congestive heart failure. I felt she had been close to death for some time, but my mom was vibrant mentally, and also very fearful of death. So, when her doctors mentioned that she could have a valve replacement to help alleviate her heart failure, she elected to proceed with the surgery, despite the significant risks. To me, the largest risk in this scenario wasn’t actually death—it was perhaps living a life so compromised that she would never be able to leave the intensive care unit (ICU). Although I had wanted her to choose palliative care, she chose the more aggressive treatment path because ultimately, she just did not want to die. As her daughter, it was my responsibility to support her.”

As Andrea told her story, my mind filled with questions:

Why had her doctors even offered her this procedure, knowing her age and how sick she was?

Why hadn’t they discussed alternatives--including hospice, if she was as sick as Andrea remembered?

Did the doctors overestimate the benefits of moving forward with this procedure? What about the risks?

Perhaps most importantly, did Andrea’s mother choose to do the procedure in an attempt to prevent death?

Even as these questions ran through my mind, it occurred to me that similar questions could be asked of us as oncologists. Indeed, one could easily substitute “chemotherapy” for “the procedure” and see they are relevant, even for us, and particularly when it comes to treatment of patients who are in the terminal phase of cancer.

Andrea went on to describe what happened after surgery:

“Her postoperative course became very complicated and required intensive care for several months. She never recovered. Instead, she suffered with an almost constant battle with infections, which ultimately lead to renal and liver failure. Ultimately, she lapsed into an extremely irritated but not quite unconsciousness state.

In the end, I had to decide “when” it was “appropriate” to stop treatment. It was horrible to see her like this, in severe discomfort, without dignity, and all the while knowing that she did not want to die. But, I felt in my heart that my mom wouldn’t want to be kept alive just to lie in a bed in the ICU with tubes and bags everywhere. I asked the doctors not to escalate care and to withdraw her medical support. She passed away hours later after they did.”

It saddened me to hear Andrea tell her story. Her mom suffered and Andrea did along with her—an emotional turmoil that persists, even months later. It also saddened me that Andrea’s and her mother’s experience was the opposite of Susan's and her husband's. Andrea’s mom deserved to find a place, physically and mentally—a more private setting where dignity could have been preserved; a place where both Andrea and her mom could find closure and, maybe, even some peace.

As an oncologist, I hold out hope that I have not left those left behind with the pain and anguish that Andrea has experienced after my own patient has died. I hope that each of my patients experienced peace at the end of their own life. But I realize that, despite all of my good intentions, I think there are instances where I may have continued chemotherapy when it probably should have been discontinued earlier, and I am cognizant of the fact that I may have referred patients to palliative care too late, well past the point they would have been able to access the help I know palliative care offers. These actions, however unintentional and only made clear in hindsight, may have caused suffering in both my own patients and their families, just like Andrea and her mother had experienced.

It occurs to me that as clinicians, our role in medicine is to offer options, to give every patient a chance at life, and, for patients facing the end of their lives, perhaps a chance to "beat the odds." It also may be that, sometimes, continuing treatment is both an easier emotional path and a more humane approach, especially when our own patients are not willing or ready to accept they are dying.

Still, no matter what field we choose, I realize that there can be hope at the end of life. Although it is usually not a hope for “more” time, perhaps it is the hope our patients can have “better” time.  For me, it means a more thoughtful exploration of end of life, not only with my patient but with those who support her, before I make recommendations. As clinicians, we must help our patients and their families navigate the end of life. And, as I have come to understand even more deeply after that weekend with friends, my actions as a physician have consequences, and they can linger long after my patients have passed.


*Name changed to protect my friend and her family’s privacy.

Thanks to my friend, Andrea, for sharing her story and helping me to develop this column.



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