Deborah Golden Alecson: Is patient autonomy possible in current culture?


Two pillars in health care are the principles of patient autonomy and informed consent, otherwise known as the right to choose or reject treatment. These ethical principles are in place when a patient is competent to make decisions based on his or her own best interest. While laudable in theory, I wonder about their application in real life.

Here's an example: Sarah was diagnosed with stage two breast cancer and wasn't sure whether or not to accept the treatment plan recommended by her oncologist — surgery, chemotherapy and radiation. Sarah is in her mid-60s, separated from her husband, and has no children. While her doctor's expressed focus was on the morbidity statistics after treatment, Sarah was quite worried about her quality of life during and after treatment. She struggled with what to do. For everyone around her, most emphatically, her oncologist, it was a no-brainer. Of course she would have treatment and fight the cancer. Instinctively, this is not what Sarah wanted to do. It did not feel to her that it was in her best interest.

To my ears, her very consideration of the situation and her thoughts about not having treatment were heard by those around her as tantamount to suicide. The fact that she was even questioning whether or not to have treatment was heresy. Didn't she want to live?

Her treatment ends in a matter of weeks. It has been horrific. She developed life-threatening blood clots as a side effect of the chemotherapy and was hospitalized four times. She will now have to take blood thinning medication for the rest of her life — a potential consequence of treatment that she was never informed about. When all is said and done, she will not be told that she is "cured" but that she is in "remission." She is convinced that either the cancer will return or the fall-out from treatment will kill her, and she now lives with that knowledge looming through her days.

When I asked her why she went through with treatment, she said she felt that had she not, she would have been "abandoned" by everyone cheering her on, including her doctors. She said to me, "Should the cancer come back, I won't have treatment and I won't tell anyone." In addition, her concern will be finding a practitioner who would care for her: a patient with cancer who has chosen not to attempt to cure what is considered treatable.

Are her fears well-founded?

Sarah told me the story of a woman getting chemotherapy for colon cancer, having been in remission from breast cancer for 10 years. According to this woman, she questioned her oncologist about treatment at this point in her life and his response was, "Have you ever seen someone die of colon cancer? It isn't pretty."

Does he know of something that we can die of that is "pretty?" Did his answer contribute to his patient making an informed decision about treatment? I think not.

How can each of us act from a place of pure autonomy since we live in relation to others? When making medical decisions, our autonomy is influenced by the people who might care for us; or, in Sarah's worst case scenario, abandon us. Can we act autonomously when in a fearful state? In Sarah's case, she went against her own best interest to appease others. She now regrets it.

Are we ever competent to consider life and death decisions when we have never considered our mortality in the course of our lives? Is patient autonomy and informed consent possible in a death-phobic culture that offers a smorgasbord of treatment options? Can anyone truly exercise his or her autonomy in our current medical climate of survival at all costs?

Deborah Golden Alecson is a death, dying and bereavement educator and speaker who resides in Lenox. She is the author of three books that deal with her personal loss. Learn more at


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