Advance Care Planning: Is its Value Controversial?

In October 2021, palliative medicine heavyweights Drs. Sean Morrison, Diane Meier, and Bob Arnold published a Viewpoint piece in JAMA Network with the provocative title, “What’s Wrong With Advance Care Planning?” https://jamanetwork.com/journals/jama/article-abstract/2785148  Dr. Morrison has published and presented in multiple venues on this topic for the past couple of years, repeatedly ACP-bashing and comparing advance care planning to your family’s “old Pinto,” that you keep pumping money into for repairs even when it’s clear the car is all washed up and beyond repair.  The motivation for these apparent attacks on ACP seems to stem mostly from frustration that millions of dollars of research funding have been spent on ACP research, despite the somewhat disappointing results of many of these studies.  No doubt some of our WAVE readers will remember this article, and I encourage those who haven’t read it to actually read the short article, and especially read the excellent comments several people have appended to the site. 

Among the conclusory statements in this Viewpoint were the following:  

  • Advance care planning has emerged during the last 30 years as a potential response to the problem of low-value end-of-life care.
  • ACP does not improve end-of-life care, nor does its documentation serve as a reliable and valid quality indicator of an end-of-life discussion.
  • The purpose of ACP is to ensure goal-concordant care near the end of life for patients who lack decisional capacity.
  • If ACP led to higher-quality care at the end of life, it would make sense to continue efforts to promote it and integrate it into value-based care. However, a substantial body of high-quality evidence now exists demonstrating that ACP fails to improve end-of-life care.
  • [T]he presence of an advance directive can inhibit current discussions about goals of care; this occurred in overwhelmed hospitals during the COVID-19 pandemic when treatment decisions were made according to written documents rather than discussions with patients or their surrogate.

There’s a lot to unpack and disagree with there.  For example, I don’t think the first sentence of the piece (first bullet point above) reflects accurately on the evolution of ACP:  It’s not about reducing costs of end-of-life care, it’s about helping people think about their goals and preferences ahead of time so they can get the treatments that are right for them! Similarly, I don’t think ensuring goal-concordant care near the end of life is the sole purpose of ACP.  

Not surprisingly to those of us who devote our lives to caring for frail, chronically and seriously ill patients like many of those in post-acute and long-term care (PALTC) settings, there was a bit of an outcry against this article.  I will be the first to say that while I think research studies can be extraordinarily helpful, I do not need a research study to confirm that the ACP conversations I have at the bedside with my nursing home patients and their families do, in fact, have a substantial value.  When we are able to determine the patient’s goals in the context of their current and expected future medical condition, and generate medical orders (e.g., POLST) that translate those discussions into documented order sets, we are much more likely to be able to help them receive the types of medical treatment they want, and to avoid the types of treatment they don’t want.  Then, when a patient has a change of condition, we can avoid an unnecessary and unwanted trip to the hospital and concentrate on providing the care they want in our own facilities, which is home for our long-term care (LTC) residents.  We can talk ahead of time about the expected progression of dementia and set the stage so that when dysphagia and failure to thrive ensue, there is not an expectation that we’ll place an unnecessary and potentially harmful feeding tube.  

Do people sometimes change their minds?  Of course!  And in both directions (more aggressive and less aggressive treatment).  That does not make our conversations invalid or devoid of value, even if it may confound research efforts.  But there is no doubt that having conversations with seriously ill patients ahead of time—before they deteriorate clinically and are in a crisis situation—helps enhance trust, creates realistic expectations, and usually (at least in my experience) results in being able to provide goal-concordant care.  Again, I don’t need a research study to demonstrate this value, and I don’t think it would be ethical to withhold such conversations.

Dr. Meier, who has spent much of her career and efforts with the Coalition to Advance Palliative Care (CAPC, www.capc.org), has historically been a strong proponent of ACP efforts, and a search for ACP-related content on their website still yields dozens of references.  She and her coauthors do acknowledge the importance of designating a proxy for medical decision-making, which is an important component of ACP.  They also acknowledge that for people who are seriously ill, it is not unreasonable to discuss specific medical interventions they might be facing as their condition deteriorates (e.g., intubation, ventilation, CPR).  So it seems their biggest beef with ACP is that it is being offered to patients who are too healthy or early in a disease process, and that it is taking away attention and resources from other potential interventions.  For the patient population I look after, these criticisms seem largely irrelevant.  

There is no guarantee that every clinician is going to be an expert on having ACP conversations, just as there is no way to guarantee that a surgeon is going to be highly skilled at every procedure they might be asked to perform.  Those of us who work in PALTC should be skilled at having these conversations, and for those who are not, there are certainly excellent educational avenues available (e.g., Ariadne, VitalTalk).  Some of us also may not do a diligent job of documenting the actual content of these ACP conversations.  Yet these potential shortcomings do not nullify the extreme value of our time at the bedside, demonstrating our care and compassion, listening and validating our patients’ and their families’ attitudes and concerns, and writing orders that we believe honor and respect those.  

Frankly, it saddens me to see this kind of deliberately provocative attack on one of our venerated institutions, especially coming from physicians for whom I have great respect.  I don’t want to speculate on what the authors’ motivation was, beyond perhaps shaking things up a bit and redistributing some of the research grant funding to other areas.  And I agree with Drs. Morrison et al that it’s generally not appropriate to ask healthy young (or older) people to decide on specific future medical interventions or complete POLST forms on them.  But it’s hard to imagine anyone—least of all those of us who strive every day to help our patients and their families plan ahead for medical illness and end of life, and who can clearly see the indisputable benefit of these conversations—seriously questioning the value of advance care planning, regardless of what “research” suggests.  I suggest we continue to entertain the best conversations we have with those we serve, and just go about our business, shall we?

[For WAVE readers who want to dig in deeper on this topic, check out this recent GeriPal podcast about shifting from Advance Care Planning to Serious Illness Communication–as though the two are significantly different or mutually exclusive: https://geripal.org/should-we-shift-from-advance-care-planning-to-serious-illness-communication/]
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Comments on "Advance Care Planning: Is its Value Controversial?"

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Dan Osterweil - Wednesday, March 16, 2022
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Thank you Karl for addressing your concerns re the JAMA article. I sense a very strong emotional response from you and appropriately so. It is an important issue, as many other challenges in chronic disease management geriatric care. Similar questions have been raised re the value of the Medicare annual wellness visit and some of the preventive activities we have been doing for years, not knowing whether they provide benefit. Some we have studied and learned that they don't work and some do provide benefit. I mean no disrespect but I disagree with your characterization that the author is "ACP bashing". As a proponent of ACP and a student of quality improvement I see the paper as a call for action, an attempt top start a conversation pointing out to some of the flaws in how the medical community has approached ACP, and particularly how it has been operationalized. In my past experience in the LTC space I have seen a rather concrete and rather simplistic approach to ACP with very narrow goals. Later on a population health level I have realized the complexity of implementing what may seem a rather straight forward process, albeit complex in terms of the multiple steps and participants involved in it. I believe that looking at the 8 required points the author listed as pre requisites for better ACP process, we could come up with a "half full cup" rather that dismiss his critic of the process. We also should look in the mirror and ask ourselves , "what can I do do to improve the process in my practice. During my practice days, ACP was a routine part in the process in the caring for older persons . It started with setting priorities, first targeting the most appropriate for ACP, continued with a conversation than attestation in the medical records. Where appropriate a POLST document was executed and shared with the appropriate parties. The person involved kept it in the designated pouch with the synopsis of her/his list of medical problems and medications. The process was repeated yearly or when a significant change in that individual health status have occurred. Others like the UC system have decide to revisit ACP every 3 or 5 years. The Medical record has a an ACP tab and the communication and prompts to update the ACP are going through a patient portal. These mentioned earlier are example of systems that took time and commitment to implement. Are they perfect? no. Is that the right direction? yes . Will the outcomes of care change because of the forms being correctly filled? probably not for all. However the care would be more congruent with individual wishes, and perhaps some will avoid unnecessary and or wasteful care. It all boils down to setting the right expectations, taking ownership and following through. Thank you again for bringing this up with our audience. Dan Osterweil past president and CEO CALTCM

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