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Humanize Autonomy, Ezekiel Emanuel, and the Limits of Advance Directives

One of the lessons (wrong, it turns out) that Americans took from the Terri Schiavo fight goes something like this: “What made Terri’s situation so tragic was that she didn’t have a “living will,” an advance directive. If she had only had one of those, everything would have worked out fine.”

Advance directives, more commonly called “living wills,” are simple enough documents. Aging with Dignity is just one of many organizations that offers a “simple” advance directive. You run through a list of treatments or care you do or do not want to receive in the future, putting pen to paper, and viola! — you can now rest easy knowing your wishes will be respected should you no longer be able to speak for yourself in a critical moment. Anyway, that’s the idea.

However, Aging with Dignity shares the same fatal defect that characterize many advance directives, which is that their primary concern is with preserving autonomy—a patient’s decision making capacity. Does it sound strange to describe this as a defect? It shouldn’t.

Autonomy — meaning our independence, our lack of reliance on others, our ability to control of own lives and our circumstances — is good and important, but it is not the sole good of either life or medicine. We balance a whole constellation of goods in our daily lives. Our autonomy is one of those goods, but we make a mistake when it comes to medicine by acting as if our dignity cannot be maintained if we’re compromised in our independence of action.

While we should be concerned about preserving our autonomy, we should also recognize that to be human is a far greater thing than to be free from relationship with others. Indeed, it’s in our healthcare encounters that we should perhaps be most willing to prioritize other goods, like trust and obedience, to physicians, nurses, and family members who make have to make decisions for us in times when we cannot respond ourselves — and who may have far greater expertise and insight into what is called for.

(At the same time, there’s the grim reality that there are some physicians and bioethicists who more or less pay lip service to the good of autonomy, but turn on a dime and will violate an autonomous decision when the choice of the patient or family doesn’t suit them. This is the “futile care” bioethics controversy.)

Enter Ezekiel Emanuel, an architect of the Affordable Care Act and adviser to Joe Biden’s Public Health Advisory Committee, who inadvertently highlights the limits of advance directives in an interview with Philadelphia Magazine:

You wrote a piece in the Atlantic a few years ago saying you wanted to die at 75 — or at least you’ll start resisting certain kinds of medical treatment then. Should that paradigm influence how we deal with COVID-19 patients right now? 

No. First, of all, let’s be clear, that article — the article I’m most infamous for — was a personal preference. Very explicitly. This was not a policy recommendation. This is about how I’m thinking about my life. And it was a call for other people to think about their lives and come to their own conclusions.

On the other hand, we now can see … you need to think about your advance directives. Do you want to be intubated? Lots of people say, “I don’t want to be on a machine.” Well, what is a ventilator but a classic machine? So everyone needs to fill out an advance directive. Second, you’ve got to understand, you may be dying alone. And so you need to begin thinking about what that final word is and commit it to paper. Because your loved ones may not be present for you to say it.

In this time of pandemic, physicians across the country are having to make critical and time-sensitive decisions — ethical judgment calls — about what a person whose life is at risk needs to survive a moment of crisis. Emanuel is right that the question, “Do you want to be intubated?” is an important question. But especially with respect to this pandemic, it’s a question most appropriate for your physician to be making based on the specific circumstances you are confronting in a specific moment in time.

Is it prudent, therefore, for one to fill out an advance directive where one simply checks a “yes” or “no” box next to a sentence like, “I want to be kept alive by machines”?

Advance directives like Aging with Dignity’s, which promote a sort of “choose your own adventure” approach to questions of life and death, may appear to be ethically neutral but in fact obscure rather than underline vital ethical dilemmas. How easily one might cause their own premature death if they do not think long and hard about what they’re doing when they sit down to consider an advance directive. Are you potentially handcuffing your physician from caring for you in an ethical way? Are you at risk of denying yourself the best treatment called for in a particular situation, the specifics of which you necessarily can’t foresee? Are you making judgments based on knowledge and experience, or are you at risk of making decisions from a place of fear?

I know many who would agree with Ezekiel Emanuel’s belief that “everyone needs to fill out an advance directive.” The good news is that we don’t need to rely on the Aging with Dignity model. In fact, we can achieve much greater certainty and peace of mind by simply avoiding the weak and compromised question and answer templates that would have us making guesses about hypothetical crises or scenarios.

What we want is a type of advance directive known as a “healthcare power of attorney,” or “durable power of attorney for healthcare.”

A healthcare power of attorney allows us to appoint someone who will act as our most trusted medical decision maker if we end up in a situation where we cannot speak for ourselves. A healthcare power of attorney doesn’t ask us to imagine countless hypothetical scenarios. A healthcare power of attorney doesn’t ask us dozens of yes/no questions about specific medical interventions that may or may not apply to us, or with which we may simply not be familiar. A healthcare power of attorney empowers us to live well, knowing that if we find ourselves in medical crisis, our spouse, or a particularly trusted physician, or another friend or loved one, will be empowered to speak confidently on our behalf, knowing how we would think about the situation ethically, morally, and religiously, and given the particulars of the moment — our age, our circumstance, our likelihood of benefit from a particular form of care or treatment, etc.

The ability to preserve the autonomy of your physicians or your trusted healthcare power of attorney to make the best and most life-affirming judgments about your care is far more important than the sweet and sugary, but false, sense of assurance than Aging with Dignity-style question-and-answer templates appear to provide.

Tom Shakely

Research Fellow, Center on Human Exceptionalism
Tom Shakely is a Research Fellow with Discovery Institute's Center on Human Exceptionalism where he focuses on human dignity, human rights, and law and policy. Tom has spoken on human rights issues at the United Nations, testified to the District of Columbia City Council on conscience rights, and advised on testimony before the U.S. Senate Judiciary Committee and U.S. House of Representatives.