by Drew Rosielle, MD
The Annals of Internal Medicine recently had a timely discussion of advance care planning, trying to focus the discussion away from helping patients specify what what they’d want, and more towards laying the groundwork for appropriate decision making by loved ones whenever that time comes. Good one for the teaching file.
That is, instead of thinking of ACP as patients pre-specifying “if X happens, then I want Y,” thinking about it more as helping patients and their loved ones prepare for the decisions they’ll be faced when the time comes — helping them think about end of life decision-making or about what are acceptable outcomes of therapy. My own drastic condensation of what they propose is focusing the planning on outcomes as opposed to specific individual therapies. For instance, less “no feeding tubes” and more helping prepare loved ones to think about the medical decisions they may be faced with in light of what an acceptable outcome or what their quality of life would be.
It resonates with a lot of what we’ve said on the blog the last 5 years about the failings or at least misfirings of ACP, and in some ways reads like a follow-up (or a more thoughtful and more practical re-tooling) to this discussion in Annals that we blogged about at Pallimed.
It’s easy to see when reading this how difficult this is to capture with a paper document — which, although they don’t say it, may in fact be the point. The documents should really just be an artifact of the larger advance care planning process that occurs between patients, loved ones, and clinicians. I love the sound of that, but recognize how impractical that can be, especially for those patients who are in the gap between having opinions and values about their care, but nothing that can yet be actionable like in Physician Orders for Life-Sustaining Treatment (POLST) orders.
Anyway, now to beat the dead dog about my own theories regarding the shortcomings of ACP. It’s the doctors. To quote from the article:
Given the problems with pre-specified treatment preferences, we propose that the main objective of advance care planning be to prepare patients and surrogates to participate with clinicians in making the best possible in-the-moment decisions. Preparing patients for such decisions shifts the focus away from premature treatment decisions based on incomplete or hypothetical information and ensures that complex health care decisions are based on a more comprehensive set of considerations, including the current clinical context, shifting and evolving goals, and patients’ and surrogates’ needs. These factors must be synthesized by clinicians who, depending on the patients’ and surrogates’ desire to be involved in decision making, can provide specific recommendations and help patients and surrogates choose from among the available alternatives.
It’s the presence of a willing, competent, patient-centered clinician to take the time to do this right, when those decisions need to be made, to ask the questions needed to make informed, patient-centered decisions. That is what makes the difference. The crazy thing is, after all this apparent cultural shift in the West about patient autonomy and control, patients and families, particularly in very desperate situations, trust us doctors to only offer treatments that we think are going to help a patient get better.
An attempt to resuscitate someone not to gain a few extra days of life but as one step towards recovery. And if we’re not taking the time to talk about outcomes (including Big Picture ones), or offering alternatives other than life-prolonging treatment, many families assume that’s because it’s inappropriate, it must not be time to consider that yet. Some families of course are savvy, and speak up, but many aren’t, and trust us to bring these matters up.
Drew Rosielle is a palliative care physician who blogs at Pallimed.
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