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"A Good Day to Die: My Mother Died Like a Warrior"

My mother wrested control of her death from the broken medical system that had held my father hostage and died on her own terms.

Photo of Katy Butler
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At 84, my mother refused open heart surgery that might have left her demented or bound for a nursing home. She was willing to face the limits of life and medicine. Because honest doctors told her that without surgery she was likely to die within two years, she seized the time (it turned out to be 5 months) to say, "Thank you, I love you, Please forgive me, I forgive you, goodbye." She died too soon for my taste, but that is the uncontrollable nature of dying. She was lucid and continent to her end, avoided Hail Mary surgeries and the ICU, and died comfortably on an inpatient hospice unit. 

Read the full story here or in the attachment. 

What is a provocation or insight that might inspire others during this challenge?

We need to publicly share stories of good and bad deaths. We need doctors to get honest about the landscape ahead. Those who hope to time death perfectly are likely to be subjected to the default process of modern medicine -- to treat, treat, treat, regardless of the cost in human suffering or futility, until someone finally says "no." Do we need an ACT UP" to confront bad medicine?

Attachments (1)

WSJ Handout Mom KButler.pdf

My essay for the Wall Street Journal on how my mother chose to meet her death.

This inspired (1)

Death of a Taboo.

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Photo of Chiara Pineschi

Thanks Katy for sharing your story. I think you brought to the front a serious issue that doctors do not often consider: the possibility to opt out and just let nature do its course. Especially in the case of demented people, doctors operate treatments without properly considering the future conditions of patients, thinking that 'life' - no matter the circumstances - is always preferable to death. That is not true. Your mum is a beautiful example of opting out, of great courage and determination. 

Photo of Katy Butler

I don't know how IDEO or funders can operationalize this, but patients and families need straight talk from doctors about the pathway ahead YEARS before the crossroads that leads to the final "No more." So they can get used to death's approach.  70% of us die slowly and undramatically of degenerative conditions (including just plain aging) like heart failure, kidney failure, lung failure and "the dwindles."  Do we need scalable "straight talk" websites that allow regular folks to plug in their conditions and find out: A. How long am I likely to live with this condition? B. What will my downward course look like? Will I need caregivers, and for how long? C. Have I become so  physically or mentally fragile that the stress of surgery or a hospital stay or another round of chemo has a 50-50 chance of destroying my current quality of life and plunging me into debility and/or a nursing home? There is a site called "ePrognosis" that has made a start at this, founded by Eric Widera, MD, who created the Geri-Pal blog.

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