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054 – How to Make Difficult Decisions Easier:
Using Goals of Care & Weighing Benefits vs Burdens

by Leslie Kernisan, MD MPH 4 Comments

Better Health While Aging
Better Health While Aging
054 – How to Make Difficult Decisions Easier:
Using Goals of Care & Weighing Benefits vs Burdens
00:00 / 43:22
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In This Episode:

Dr. K discusses a reader’s dilemma concerning his resistant 96-year-old father, and explains how using two foundational concepts — goals of care, and weighing benefits versus burdens — can help families work through difficult decisions. (See here for the posted question and her written answer.) She covers:

  • How to think about whether an older relative may have lost decision-making capacity
  • The three key goals of medical care: helping people live longer, feel better, and function better
  • Why thinking through goals of care is foundational in geriatrics
  • Three common non-medical goals for older adults: autonomy, safety, and privacy
  • What to do when goals come into conflict
  • How to use a “benefits versus burdens” framework to think through dilemmas and difficult decisions
  • How the reader with the resistant 96-year-old father might think through his options
  • 4 suggestions to keep in mind when discussing difficult topics with an older relative

Related episodes: 

  • 028 – When Older Parents Resist Help: 4 Tips for Better Talks
  • 038 – FAQs On “Incompetence” & Losing Decision Capacity

Related Resources:

  • How to Plan for Decline in Alzheimer’s Dementia: A 5-Step Approach to Navigating Difficult Decisions & Crises with Less Stress
  • Quick Start Guide to Checking Older Adults for Health & Safety Problems
  • Incompetence & Losing Capacity: Answers to 7 FAQs
  • 10 Things to Know About HIPAA & Access to a Relative’s Health Information
  • 4 Things to Do When Your Parents Are Resisting Help
  • AgingCare.com Online Caregiver Forum
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Comments

  1. Dave deBronkart says

    December 21, 2017 at 9:00 am

    Your episodes are always so good and so thought-provoking that I could leave a comment on everyone, sometimes two or three.

    In this case I’m really intrigued with what you say about someone’s capacity, because as I may have told you, a lot of my work focuses on empowerment, which is all about building someone’s capacity to do one thing or another.

    Is capacity something you were trained on, or something you picked up as a personal interest?

    There’s a lot more to say about it but I’ll wait to hear your thoughts before continuing. This is a juicy, rich area for productive discussion. Thank you again!

    Reply
    • Leslie Kernisan, MD MPH says

      December 21, 2017 at 5:17 pm

      hi Dave!

      I’m pretty sure that during my medical training I was taught to evaluate a person’s capacity to make a medical decision. But I don’t think doctors are otherwise given much training on assessing other forms of decision-making capacity, and last I checked, there wasn’t much on it in the published medical literature. (I think there may be more in the legal scholar literature.)

      The best resource on decision-making capacity that I’ve found so far are these (from American Bar Assoc and American Psychological Assoc), but they are very long, very technical, and designed for professionals. Per these resources, six civil capacities are of particular importance to older adults (and may become questioned, depending on the circumstances):
      Medical consent capacity
      Financial capacity
      Testamentary capacity
      Sexual consent capacity
      Capacity to drive
      Capacity to live independently

      In terms of your work empowering people, we can certainly improve people’s capacity to make a “good” decision or to advocate for themselves or to otherwise become more effective in getting what they need, by helping them learn relevant information and also helping them develop certain skills.

      But I would say this is getting at a different angle on the question of capacity.

      Thanks as always for your comments and your interest in the podcast!

      Reply
    • Dave deBronkart says

      December 21, 2017 at 7:27 pm

      I’m going to transcribe some of your words here, for easy recollection later, and a further comment:

      From episode 38 – FAQs On “Incompetence” & Losing Decision Capacity:

      To have the capacity to make a decision, a person …
      – needs to be able to understand
      — the situation they’re in
      — the decision in question
      — the consequences of making a given choice,
      – should be able to
      — explain their reasoning to other people
      — express the choice to others consistently
      – the reasoning shouldn’t rely on anything that strikes most people as bizarre or delusional.

      Now, if I’m understanding you correctly, these sound like exactly the criteria society used (supposedly) in deciding when someone should be allowed to drive, vote, make decisions about their own health, etc, right?

      What excites me about this is that since empowerment (per the definition I use dave.pt/empoweredengaged) is increasing people’s *capacity* to do things, this provides a nice list of the things an “empowerment coach” would need to develop in someone, ey?

      Now to go back and re-listen to #38, which I remember, to dig up new details in this new context.

      Thank you for your generosity!

      Reply
      • Leslie Kernisan, MD MPH says

        December 22, 2017 at 3:16 pm

        I’m not sure you need to transcribe anything, am pretty sure everything I say about capacity in the podcast is in this article: Incompetence & Losing Capacity: Answers to 7 FAQs (which is the basis for episode 38).

        When it comes to an older person making decisions that family members don’t like, the issue is whether that older person may have experienced a decrease in one of those key civil capacities. We actually can sometimes improve their decision-making capacity by correcting medical conditions and making sure aging adults have their glasses and hearing aids. But I think of this as an effort that’s a bit different from coaching or other efforts to help them become more engaged or empowered patients.

        For resources to support patient engagement and empowerment, I wonder if you wouldn’t be better served by the literature on health coaching and improving self-efficacy in managing health conditions. Kate Lorig has done seminal work developing a Chronic Disease Self-Management Plan, and explains her twenty-year experience here:
        Chronic Disease Self-Management Program: Insights from the Eye of the Storm

        A conceptual framework for patient activation and empowerment is also described in this 2016 article:
        Personalized Strategies to Activate and Empower Patients in Health Care and Reduce Health Disparities.

        Thanks again for these comments and bring up these interesting points.

        Reply

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