From The Chair

September 2015

Advance Directives, Autonomy, and the Elusive Authentic Self

People were upset.  The young man in the ICU bed, intubated, had muscular dystrophy.  He had been stable on his home regimen of nighttime BiPAP until last night, when he developed fever and mounting respiratory distress.  His parents drove him to the emergency department of their local hospital.  Confronting impending respiratory failure, he was intubated and then transported to receive ICU-level care.

Gathered outside the closed door to his room, one of the care providers spoke up. “I was there when we did advance care planning during his last admission, and he said he did not want a breathing tube or to be connected to a machine.  We even wrote that down in his advance care document.  How could this have happened?”

How, indeed?  How — when an adult with adequate decision-making capacity has made decisions about the care that they would want to receive and not receive — how can this advance planning seemingly go unheeded?  In my experience, this basic scenario — where a patient receives an intervention that seems to have been decided against in previous advance care planning — happens frequently enough that it is worth exploring the ways in which this can happen.

One way this can happens — rarely — is an egregious disregard of the advance care plan by a health care provider or team.  The plan, although written down quite clearly, and backed up with supporting authorizing documents (such as official out-of-hospital care orders, like the POLST form), is overriden by providers who simply do not want to follow that course of action.  Their reasons for doing so are up for debate:  they may be scared, or practicing CYA medical care, or simply not comprehending or agreeing with not providing potentially life-prolonging interventions.  Direct conversation with those involved is the only way to figure out what the thought process is, and potentially alter it for future cases.

More often than this rare scenario, though, are cases where the plan is not clearly documented, or supporting documents are missing, or the health care team is simply not aware that an advance care plan exists.  When these events occur, we should work to identify what step in the process of advance care planning documentation broke down or could be improved upon, including the clarity, location, and “transportability” of the documents.

The most common scenario, though, is that patients can express a countervailing command or statement in the critical moment of decision as their physiological stability declines, running against the dictates of the advance care plan:  “Don’t let me die — save me.”  Or when asked, “Do you want us to put a breathing tube in you?” they say, “Yes.”  Importantly, in the large majority of cases that I recall, the patient subsequently states, when the crisis has abated, that they are grateful to have received the intervention, and that they would want exactly the same thing done again if ever they were in the same situation. And, also importantly and interestingly, when asked about their previous advance care plan and the preferences about care that were captured in that document, they say basically that that they still have those preferences, but that this specific situation was different.

Should we be surprised by this turn of events?  Should we question whether these patients have sufficient decision making capacity, given the seeming inconsistency of their preferences, or explore whether they were somehow pressured into a change of mind?  Should we chastise ourselves or other members of the health care team for failing to shield these patients from the important decisions that were about to be made on their behalf, believing that the advance care plan should have been all that was required to make the treatment decisions?

The answer to the first of these questions is no, we should not be surprised.  People often simply do not have stable preferences, as much as we might wish otherwise.  The literature of behavioral economics recounts innumerable well-controlled laboratory studies demonstrating that people change their preferences and the choices that they make when factors external to the decision itself change.  If so-called framing and elicitation effects alter preferences in relatively calm laboratory situations, imagine what likely happens regarding preferences for care expressed in advance care planning, which are typically based on as-yet-never-experienced situations, providing a radically different context of sorting through one’s preferences compared to confronting a living, breathing crisis.

I would answer no to the question regarding decision-making capacity, albeit with some qualifications.  If having unstable preferences alone were proof that we lacked sufficient capacity to make decisions, then we would all be in the same incapacitated boat. Insufficient capacity would be a concern if the patient could not offer any sense of why they made the decision that they did.  I write “sense” here, since I do not think we should expect or require people to provide cogent or eloquent justifications for their decisions, but they should be able to offer a “feel” for why they choose as they did, such as “I was scared and did not want to die”.

I would also answer no to the question regarding whether the advance care plan should be relied upon to the point of not engaging the patient with real-time decision making.  The issue here lies at the very heart of what advance care planning is striving to do, namely to enable people to exercise their autonomy and have care guided by their preferences, not the preferences of others.  But, given that preferences can change, and often do in the face of a health crisis, which preferences are to be honored?  We often start talking about “deepest” preferences, or preferences of the “authentic” self.  But in my mind these are elusive notions, and while intuitively appealing, require an “unearthing” process that can introduce all sorts of biases.  At the very least, any notion of more “core” preferences needs to be balanced by the person directly in front of me who is saying, basically, respect me and my preferences now!

In a scenario related to the one of a patient expressing seemly conflicting or ambivalent preferences, one or both of the patient’s parents, or some other family member, may argue at the moment of medical decision making that this is not the situation that the advance care plan intended to address, and therefore the decision should not be guided by that document, but instead by their knowledge of what the patient would want done.  Certainly, sometimes family members simply either do not agree with or cannot accept the advance care plan, and they just want to override the preset decision. But what I encounter more often is the family earnestly claiming that they know the patient’s preferences and want to provide well-informed substituted judgment.  If patients themselves sometimes express preferences at the moment of medical choice that are seemingly different than their advance care plans, are parents or family members necessarily wrong to argue similarly?

In the end, to be human is to be ambivalent.  Not always, but often.  So while I am a big fan of advance care planning (for a multitude of reasons that I’m not addressing here), I view even the best of these well-intended plans about the future with cautious and flexible skepticism, tolerant of the twists and turns in how we choose for ourselves, seeking to affirm and respect our elusive, authentic, ambivalent selves.

Chris Feudtner, MD, PhD, MPH, FAAP

Site Map | Contact Us | Privacy Statement | About Us | Home
American Academy of Pediatrics, 141 Northwest Point Blvd., Elk Grove Village, IL, 60007, 847-434-4000