• When surrogates override wishes

    Alex Smith points out a fascinating paper and teaching video that recounts the story of two daughters who override the wishes of their 83 year old mother regarding life sustaining treatment. Alex summarizes the story this way:

    • An 83 year old woman with complex medical conditions becomes septic and is seen in the emergency department.
    • She has an advance directive that clearly states “Do Not Resuscitate, Do Not Intubate,” designating her oldest daughter as her surrogate decision maker.  She talked with both daughters about her wishes.
    • The doctors ask her daughters for permission to place her on a ventilator
    • The patient, very ill and turning grey, says “no-no-no” and wags her finger
    • The patient becomes unresponsive, and the daughters grant permission to intubate her and transfer her to the ICU

    Even more interesting than the paper, the daughters agreed to be videotaped discussing this case (“Twenty-two days and two blinks of an eye”), which eventually ended when they decided to have their mother de-intubated and she died. As both the paper and video show, this is a far more nuanced story than someone simply not following the wishes of another person at the end of life. Instead, it touches on many issues: communication, consent, leeway, who preferences/needs should be included in end of life decisions, and how to deal with differences within families on these very difficult choices. Further, your mother only dies once, so it is the health care system that needs to work on learning from difficult experiences and trying to make it more likely that bad ones are not repeated.

    I have shown the video to several people who had very divergent feelings after viewing it, so I pass it along without any more comment, except to say that these two daughters are very brave for allowing this story to be shared so publicly.

    DT

    Peter M. Abadir, Thomas E. Finucane, Matthew K. McNabney. When Doctors and Daughters Disagree: Twenty-two Days and Two Blinks of an Eye. J Am Geriatrics Society 2011;59(12):2337-30.

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    • You want a real doozey:
      this story and legendary doc (for real) got a lot of attention for the same. worth reading.

      http://www.nytimes.com/2006/12/25/health/25surgeon.html?pagewanted=all

      brad

    • The health-care ‘system’ really failed this woman and her family. It seems pretty clear that
      1. the ventilator question was asked in a way that promoted treatment, and did not explain the likely consequences (i.e., ICU) for the mother;
      2. no one took up the DNR/DNI order with the surrogate(s) prior to the mother being brought to the ER.

      I hope this family’s doctors learned something from this case. Your mother, or grandmother, or whoever does only die once. It’s a shame that these two loving daughters came to regret the treatment they approved for their mother because of the suffering they believed it caused her.

    • Ezra Klein’s blog links to a San Jose Mercury-News reporter’s story about her father’s EOL experience:

      “Every night before putting on his pajamas, Dad emptied the coins from his pockets. The special ones he placed in an album, but most went into a jar to be saved. So how could the hospital bill for the final days of this frugal man — with carefully prepared end-of-life instructions — add up to $323,000 in just 10 days?

      “That’s the price of a home for a struggling family. Enough to put a future doctor through medical school. Hundreds of prenatal visits. Thousands of vaccinations.

      “My father’s story — the final days of a frail 88-year-old with advancing dementia at the end of a long and rewarding life — poses a modern dilemma: Just because it’s possible to prolong a life, should we?
      It’s a story of people doing their best in a system that’s built to save our loved ones. And it’s a reminder of the impossibility, during a crisis, to assess costs and benefits that aren’t at all obvious.

      “This was the lesson of my father’s passing: It is easy to get quick access to world-class treatment. It’s much harder to reject it.”

    • Much of this could have been solved by an end of life planning meeting such as is contemplated by Obamacare – the famous “death panel” provision. It’s clear that they weren’t on the same page with each other and the first daughter was taken somewhat by surprise. The second appreciated the opportunity to say their goodbyes, but at what cost? This woman’s life was extended at enormous financial cost and apparently against her wishes. We had a similar situation with my mother, except we arranged for in home hospice care and made the decision that when the time came no heroic measures would be taken. This was extremely difficult. I was the one making the decisions and it’s hard not to call for help when your mother’s about to go. But I did as she wished. My siblings regretted not being able to come say their goodbyes, but they had really already done so a few weeks before when we all gathered together. None of this is easy, but there is no reason why a person should be kept alive well beyond the time when all hope of meaningful recovery has evaporated.