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January 2, 2020

Treatment Decisions for a Future Self: Ethical Obligations to Guide Truly Informed Choices

Author Affiliations
  • 1Harborview Medical Center, University of Washington, Seattle
  • 2University of Rochester Medical Center, Rochester, New York
JAMA. 2020;323(2):115-116. doi:10.1001/jama.2019.19652

It is estimated that every 3 minutes in the United States, a person dies after sustaining a severe acute brain injury, such as an ischemic stroke, intracranial hemorrhage, traumatic brain injury, or cardiac arrest.1 Almost half of deaths after severe acute brain injury, 100 000 per year, occur during the acute hospitalization, and approximately 90% of patients die after a decision to limit the intensity of treatment rather than from the direct effects of the brain injury.1,2

The decision to continue or withdraw life-sustaining treatment usually involves asking a surrogate decision maker to balance the uncertain possibility that a patient will return to some minimally acceptable quality of life against the burden of a prolonged hospital and rehabilitation course, which are options that are difficult to predict and difficult to fathom.

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    2 Comments for this article
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    Finding Meaning in New Health States
    Kathy Kastner, none | Patient Advisor University of Laval
    Terrific questions and focus! So great that your research recognizes that living with health conditions means adapting to change, sometimes huge.

    However, reading that "most patients adapt and find meaning in new health states" I have to wonder: what other option is there but to adapt to and find a way to find meaning (except where criteria is met and Medical Assistance in Dying is available)?  I might also consider telling surrogates that likelihood of adaptability may mean a future burden (or privilege) for surrogate/others.

     Thanks again for bringing this much-needed focus 'to the
    table'
    CONFLICT OF INTEREST: None Reported
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    Data - a still missing link
    Negin Hajizadeh, MD, MPH | Critical Care Medicine, Private Practice
    Thank you for bringing this concept of predicting what the future self would value and our ability to - in many cases - adapt and re-calibrate expectations for quality of life for self (and our loved ones). A missing link that we must highlight is high quality prediction data to answer the questions that then require us to decide what the future self would want, and for surrogates to make decisions about withdrawing care that would cause unnecessary suffering for a likely unattainable acceptable quality of life. We must continue to work on and update prediction models - which take into consideration individual changes over time, including decisions on what the acceptable time period for observation of improvement in these prognostic markers are before withdrawing any non-palliative care. This is fundamental for unbiased shared decision making.
    CONFLICT OF INTEREST: None Reported
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