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Taking A Stand Against Terminal Illness — Self-Delusion, or the ‘Good Fight’?

April 6, 2010

By Shawn Kennedy, MA, RN, AJN interim editor-in-chief

This week, The New York Times published an article about a young palliative care specialist who, when advised her cancer had progressed to the point where she should consider palliative care, rejected the notion and proceeded to pursue all available options. She was only 40 years old and said she was not ready to die. While the aggressive treatments (which she had plenty of money to pursue) gave her about another year, the article explains that her final days were spent heavily medicated for pain from the tumors throughout her body—even as she continued to request brutally painful procedures with little chance of prolonging her life.

That was her choice, and she knew what she was choosing. But that doesn’t always happen; too often, people really don’t know what it may cost them to take a stand against the inevitable. (For an engaging and comprehensive look at the issue and its implications for nurses, see Life Support Interventions at the End of Life: Unintended Consequences in the January issue of AJN.)

This month, AJN’s Reflections essay describes a scenario when full disclosure of the likely results of pursuing treatment wasn’t forthcoming from health providers. It tells of one nurse’s dilemma in balancing her role as family member and as a nurse during the last days of her mother-in-law’s terminal illness. At issue is how to explain to family members, who are “misinterpreting survival as recovery,” the likely outcome of aggressive treatments.

This piece struck home for me. As a chemotherapy nurse, all too often I witnessed patients with end-stage cancer wanting to undergo treatment that might promise, at most, a few additional months of life—but certainly not the life they’d had or wanted. Many kept on “fighting,” sometimes at the urging of family members who couldn’t bear to let go and were in denial that treatment was not prolonging life but merely stalling death. It was difficult to watch.

I also recall a distant cousin, a nun, who at the age of 75 was diagnosed with leukemia and promptly decided that she would not pursue chemotherapy. She had nursed others through cancer and decided she did not want her final days to be ones of illness and discomfort and endless trips for treatment. She said she’d had a good life, had better things to do in her final days and needed the energy to do them. She died within two months and seemed, to the end, happy with her decision. 

How do we intervene, then, whether the person in question is a family member or not, if discussions and details from providers are not forthcoming? How do you open discussions without creating “a situation” that creates more stress and perhaps discord among the family? Do you bow out, or gently search for a way to say what needs to be said? 

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4 comments

  1. We have an outstanding Pastoral Care Department in our hospital and a Spiritual Care Committee that nurses are invited to be part of. I try to look for a way in to help patients meet one of these special people. They provide support where ever the patients find themselves emotionally/spiritually. Their support for the staff also, is always welcome.

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  2. It’s important to understand that our role as nurses is to help patients and their loved ones understand their diagnosis, their options for treatment and the implications of those decisions. Our role is not to define what quality of life should mean to them or how many years constitute a “good life”. These decisions should be based on a value system and in a time frame that is theirs, not ours.

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  3. [...] it out against her cancer up to the end. The article was fascinating, disturbing, powerful, and we posted about it—and a related article we’d run in AJN not long ago—at this blog a few days [...]

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  4. Great post. Thanks for featuring the NY Times article which is really popular apparently on the NYT website (most emailed for the past few days).

    Nurses play such a critical role in helping patients and families understand the implications of their medical decision making. I always appreciate a family meeting when the patient or family can say ‘Our nurse helped us understand X or Y’

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