Mastodon Advance Care Planning? Meh. - Part 1 ~ Pallimed

Monday, March 29, 2021

Advance Care Planning? Meh. - Part 1

by Drew Rosielle (@drosielle)

Several years ago I was giving a talk in front of a mostly palliative care audience and asked, "How often do you find yourself, in the care of your patients, saying to yourself something like 'Thank the stars this patient has a healthcare directive (HCD)'?" The overwhelming answer was a bunch of shrugs and people agreeing occasionally (but not routinely) HCDs are helpful.

For something that seems so central to our work, why is it that so many of my colleagues that day were lukewarm about their utility?

It's fair to say that the last few months have been a controversial one in the hospice and palliative care communities when it comes to ACP, triggered by Dr Sean Morrison's editorial in Journal of Palliative Medicine: Advance Directives/Care Planning: Clear, Simple, and Wrong.

I've been mulling over that editorial for a couple months now and then noticed that, arguably, one of the most important advance care planning (ACP) studies in recent history has just been published, although probably not for the reasons the investigators were hoping for, and I thought I'd write about where we're at a bit for Pallimed.

This post is going to be about my own thoughts as to why I mostly agree with Dr Morrison's editorial. The next post will be about this tantalizingly important paper that was just published.

If you haven't read Dr Morrison's editorial, please read it now--it's not that long and it seems to be open access at the moment. Here's his top-level argument:

As of May 2018, 80 systematic reviews of advance care planning covering >1660 research studies had been published and the National Institutes of Health and the Patient-Centered Outcomes Research Institute had funded >750 research studies at a cost of >$300 million in taxpayer money (an average of $1 million/year). Foundations have spent untold millions. What evidence has all of this research and money wrought? The >1660 studies and 80 systematic reviews on advance directives/care planning have produced only limited and low-quality evidence that advance directives/care planning can actually result in changes in patient, family, clinical, utilization, or financial outcomes. Like the study published in this month's journal, the majority of high-quality research has failed to find a strong link between advance directives/care planning and outcomes of importance. Similarly, despite 30 years of diverse interventions and programs, two-thirds of adults do not have an advance directive (an imperfect yet reasonable surrogate for occurrence of an advance care planning discussion).

I mostly agree with Dr Morrison about this, and will flesh out my thoughts as to why. I need to note that I didn't run any of this by Dr Morrison so any claims I'm making here about what he thinks are my interpretation of his editorial, sort of my own internal conversation with his editorial, and nothing more; I'm not claiming to speak for him. Also--JPM published many letters in response to his editorial, all of which are worth your time reading.

Takes like Dr Morrison's are really controversial (in part) because I think people (clinicians in HAPC), use different definitions of ACP. I sometimes think when people hear stuff like "ACP is not helpful" they think people like Dr Morrison is saying something like "Discussing prognosis and planning for future care with your patients with advanced and serious illnesses is worthless." I.e., this is sort of a 'Big Tent' definition of ACP which includes activities associated with completion of health care directives + really any clinical activity that's in the realm of discussing the future (eg discussions of prognosis, preparing patients for future decisions/what is likely to happen to them in the future, even goals of care discussions). I'm pretty sure though that Dr Morrison and the other detractors of ACP, when they say there's no evidence it actually helps patients, are really talking about the narrow definition of ACP (completion of HCDs and the clinical/healthcare discussions that occur adjacent to HCD patient education and completion), and are not criticizing the idea we should be discussing prognosis / the future with our seriously ill patients.

Also, because I know some of you will be reading this and asking, "But what about Physician Prders for Life-Sustaining Treatments (POLSTs)?"-- for all intents and purposes the following discussion is not really about the POLST movement (which is not to say POLSTs have the sort of evidence behind them we'd like either, but that's another story). All this isn't really about Ariadne's Serious Illness Care project either, and importantly I'll note the Ariadne investigators are doing their best to study their intervention in multiple settings and are not advocating wholesale population wide implementation of their program in the absence of evidence (which is what was done with ACP the last decades).

One could note that there really isn't great evidence for talking with seriously ill patients about prognosis/planning for future care either. That is sort of true, there is some research but not enough and not overwhelmingly convincing (one could look at the recent Ariadne Serious Illness work for some examples of what I mean by sort of true) but honestly I'm less 'worried' about that because as a physician I have a professional obligation to discuss prognosis with my patients. I can't help them make informed care decisions otherwise, and honestly I'm less interested in outcomes research focused on if I should be talking with my patients about the future than how I should be talking with them about the future. I want to learn better/more effective/more compassionate/more accessible/more timely/more culturally- and patient-centered ways of having those conversations, not whether or not I should be having them.

At the same talk I mentioned above, for instance, when people admitted they rarely have found ACPs to be helpful in real clinical practice, I asked people how often are they glad that someone before them had had a realistic discussion with a patient about the future, and everyone indicated that they found this routinely helpful of course.

The same is not true with narrow definition ACP (and from here on out when I say ACP I am only talking about the narrow definition). ACP was adopted as a healthcare innovation really without the sort of scrutiny and demand for proof that it actually helped patients that we'd demand for other innovations like, say, LVADs. The acceptance of ACP as unimpeachably a good, obvious, thing for our patients is so entrenched that people have funded entire careers off of studying how to get people to do ACP, without there being reasonably clear evidence it actually improves patient-centered outcomes.

Much of the ACP research out there is focused on projects/methods to get patients/clinicians to do ACP. I'm not claiming this is bunk research, some of it is really high quality work, however I am claiming that it's high quality work which seems to assume we are benefitting patients by helping them do ACP yet we don't actually yet know that. Importantly here, if you are reading this and thinking to yourself something like I just saw a patient the other day who seemed to benefit in some way from ACP I am not saying you're wrong. I've met that patient too. But, like with anything, acknowledging there are a few patients which benefit from something is very different than concluding something should be a routine, integral part of medicine, implemented widely as a public health intervention, and worth the immense amount of healthcare and research investment of time and dollars spent on it.

I think Dr Morrison's thesis is "ACP is not worth the time/money/effort that has been spent on it as a public health intervention," not "ACP has never helped anyone."

Some ACP research has been about 'congruence,' whether doing ACP activities predicts whether you will later on get the care/treatments you at a prior date said you would want. Especially in the early days of ACP most of the talk was about 'autonomy' and making sure people get what they want, etc. (Indeed, much of the early talk about ACPs was really centered on things like patient rights and autonomy.) There is a moral and philosophical discussion to be had about that topic and whether this is something we should actually be trying to achieve (because patients wishes change over time, and how can patients really make informed decisions about future health states without actually being in such a state, and does it even make sense to ask patients to sort of 'pre-decide' healthcare decisions which on a good day are bleedingly complicated even for cognitively intact and emotionally stable patients). It's an interesting topic, but it doesn't really matter anyway, because there's no high quality research into congruence showing ACP does anything anyway.

To take a couple examples, there is this very well done Australian study from 2010 in the BMJ (the "Melbourne Study") which did a comprehensive ACP intervention in high risk hospitalized older patients. If you read the abstract you'll think that the intervention improved 'congruence' (meaning patients who did the ACP intervention were more likely to get congruent care than those who didn't). If you actually read the study you'll realize that what the intervention group had was better documentation of their wishes so it was easier to 'prove congruence for them (we don't know if the control group had 'congruent' care because their wishes weren't documented) and we don't actually know if the ACP intervention changed any patient care. The 2nd example is the only RCT that I'm aware of the highly revered Respecting Choices ACP model which looks at congruence. This was a RCT of 300 high risk patients (severe heart failure or were on dialysis) who received usual care or the Respecting Choices intervention. This carefully done prospective trial which followed patients long term showed absolutely no improvement in congruence. Think about this one--this wasn't a study of healthy elders, this was a study of people at really high risk of dying (ie the people most likely to benefit from ACP), 300 of them, and yet they couldn't show any difference. It's research like this that Dr Morrison is pointing to I believe when he says ACP has not been shown to benefit patients.

Many of you are probably aware though of all sorts of positive ACP research. People who have HCDs are, compared with those patients who don't have them: more likely to have DNR orders at the end of life, more likely to spend more time enrolled in hospice, less time in ICUs at the end of life, etc. We have a couple decades of research showing this in multiple settings. The problem with this is that nearly all this research which has shown these lovely associations is observational, subject to major confounding. And there is every reason to believe there is huge confounding at play in this sort of research. That is, patients who are open/inclined towards participation in ACP activities are probably more inclined to want 'less intensive' EOL treatments. Think about your own patients, there is a group of them for whom participating in ACP is pretty easy, they want to do it, it's emotional for them but they are committed to it without much encouragement from us, etc. I think there's every reason to believe that the average patient like that is also far more disinclined to want 'invasive' EOL treatments than patients who will not participate in ACP. What this ends up meaning is that having a HCD may just be a proxy for also being disinclined to want 'invasive' EOL treatments, and the actual process of completion of the HCD doesn't impact care one way or the other because these patients already are the folks who are inclined to enroll in hospice earlier, etc. Again, when you do prospective, controlled research, it's much more difficult to show any patient-centered 'benefit' or change in outcomes, apart from the fact that more ACP is documented, even when you are using one of the most highly investigated and validated ACP tools out there, such as in this trial.

I disagree with Dr Morrison on one major point--he seems to be advocating that we wholesale abandon ACP as a clinical and research endeavor. I think there is one domain of patient outcomes which is really under researched, and ACP may really help. This is the possibility that ACP's main benefit to patients/families is essentially a palliative benefit to reduce iatrogenic emotional suffering we in healthcare cause our patients/families due to our decades' long abandonment of our dying patients by forcing them to make decisions they don't want to make. Because we have moved in the last few decades to a situation in which we have decided that desperate, grieving family members are the defacto best people to decide, for instance, if and where tubes should be inserted into their dying family members' bodies, we have caused tremendous suffering, and ACP may be a way of mitigating that suffering. I think this idea has potential and it has increasingly been a subject of investigation in the last decade, which I'm glad to see, although it's still not being investigated routinely. For example the Melbourne Study, while it didn't clearly show any other benefit, did show decreased stress and anxiety symptoms in family members who participated in the ACP process.

This is presumably what Ira Byock meant when he said "I have an advance care directive not because I have a serious illness but because I have a family.” Ira, of course, might be on to something there, and it's been frustrating to me that so few investigators have taken up that outcome as a primary focus of ACP. Admittedly, it's a bit obscene to say it's just iatrogenic suffering here which ACP might mitigate, of course it isn't, and there may be emotional and social benefits outside that--families talking about what's important together, memory and legacy making that can occur adjacent to ACP completion, etc. What I am essentially proposing is that ACP could be studied in a way that's sort of similar to how the Dignity Therapy investigators approach their intervention. ACP is not Dignity Therapy, however I'm arguing it could be investigated as a sort of analogous suffering-reducing, meaning-making intervention.

Importantly, I am not proposing here that we just shift uncritically from saying ACP is good not because it's all about 'honoring'/'respecting' choices (the pre-decisions, autonomy model), or because it reduces unnecessary healthcare costs / keeps people out of ICUs when they are dying, but because it reduces suffering. It's premature to say that. We can't put the cart before the horse. ACP may yet be worthless as a broadly enacted healthcare intervention, and we should continue to consider any benefits hypothetical until proven otherwise

For more Pallimed posts about advance care planning.
For more Pallimed posts by Dr. Rosielle click here.

Drew Rosielle, MD is a palliative care physician at the University of Minnesota & M Health Fairview in Minneapolis. He founded Pallimed in 2005. You can occasionally find him on Twitter at @drosielle.

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