It's 7:05 p.m. and there is no way I'm leaving the hospital. Some things you just don't leave for the night shift.
I head toward the lobby where my patient's family waits. In one of the ICU beds behind me, my patient lies in a state of peril. She has suffered a cascade of disease and bad luck, first a myocardial infarction and then a stroke. Now her failing heart is cycling through a chaotic mix of dysrhythmias.
Few things are certain about my patient's future. But if she gets any worse, our team will descend on her with the brute force of resuscitation. I need to know if she would want that. I tell the gathering in the waiting room that we need to talk, that we must try to figure out what decisions the patient would make if she were standing in our worried huddle. As I shepherd her relatives to a nearby conference room, a family friend claps a hand on my shoulder.
“Don't worry,” he says with a smile. “She signed an advance directive.”
I hear that line a lot from anxious families clutching a stack of papers drafted in a lawyer's office. After all, a written advance directive seems like the perfect solution as we fret over the ethical care of an incapacitated patient. In theory, it's a beacon of patient autonomy. But it often fails to help.
Although advance directives may benefit other settings, in the ICU they often are useless.1-3 Legal forms deal with the black-and-white world of certainty; critical care clinicians operate in a gray fog of doubt.
In a moment of masochism, I decided to read all 52 of the downloadable advance directive forms on the American Association of Retired Persons' website (and a few from popular online legal services, too).4 They contain small variations from state to state, but all of them stick to the same language I see flipping through advance directives in my patients' charts.
In general, the core of advance directive forms prompt patients to make choices in several scenarios. The forms describe situations in which a patient is afflicted by an “incurable or irreversible” disease where “death is imminent,” or where the patient is in a state of “permanent unconsciousness.”
But using these criteria in acute critical illness borders on ridiculous.
In the ICU, clinical prognosis often is uncertain, especially early in critical illness. Survival often is unlikely but not impossible. Disease can be severe and debilitating but not necessarily incurable. Recovery can be full or partial. The expected course is different in every clinical situation and can change hour by hour. In a dynamic world of countless variables, waiting for the guarantee of incurable, irreversible, or permanent acute illness is unrealistic.
Of course, if a life-ending disease is incurable or irreversible—or if a coma is known to be permanent—we rarely wonder about the right course of action. Although these situations are tragic, families and surrogate decision-makers usually make a compassionate decision to move toward palliative care. We simply don't need the guidance of legal documents when the outcome is obvious.
It's only after meeting this threshold of absolute certainty that most advance directive forms proceed to more granular treatment issues. Many forms offer patients a binary “all-or-nothing” decision, but some address specific elements of care. Even when they address specific elements of care, though, the á la carte nature of these options makes little sense. “Tube feeding,” for instance, is mentioned on many forms, even though more immediate concerns like mechanical ventilation or dialysis are not. This scattered focus on clinical minutia reflects a misunderstanding of medical care. It is possible that high-publicity end-of-life controversies or legal concerns influence these forms more than the input of actual healthcare professionals.
The real decisions that burden medical teams and families in the ICU are much more nuanced than paper forms suggest. Imminent death is not a moral conundrum, but the prospect of a years-long recovery process can be. We need to know our patients' definition of acceptable life and what they are willing to endure to achieve it.
For a spokesperson to possess that level of surrogacy, they need more than a checkbox on a sheet of paper. They need to be able to communicate a patient's entire philosophy.
And this is what some of the advance directive forms actually get right. Before they mention incurable diseases and feeding tubes, before they ask for witness signatures and notarization, each of these documents starts with important advice: talk to your surrogate. Tell them what you value most and what you consider a life worth living. Don't just complete a form; have a discussion.
Those conversations can be difficult. They contain ideas that many people find frightening, even repulsive. But fear often comes from the unknown. As medical providers, we can shed light on the murkier aspects of end-of-life care. We can help initiate dialogue and guide patients and their families through the most important issues. It may just be the most compassionate treatment we can offer.
1. Gutierrez KM. Advance directives in an intensive care unit. Crit Care Nurs Q
2. Hartog CS, Peschel I, Schwarzkopf D, et al Are written advance directives helpful to guide end-of-life therapy in the intensive care unit? A retrospective matched-cohort study. J Crit Care
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3. Wallace SK, Martin CG, Shaw AD, Price KJ. Influence of an advance directive on the initiation of life support technology in critically ill cancer patients. Crit Care Med