At a certain age, it’s tempting to reexamine our stubborn delusions of immortality and get serious about preparing for the end. When I turned 70 earlier this year, for instance, I told myself it was time to draft a last will and testament. It’s the best way, I’ve been advised by prudent people, to save my survivors from the legal rigmarole that often accompanies the passing of assets from the dead to the living.
To even consider such a farsighted (I hope) move is completely out of character, I must admit. I’m not a planner by nature. I know where I need to be tomorrow at 11 a.m., but ask me what’s on tap for next weekend and you’re likely to get a blank look. A roadmap to retirement? “We’ll see what happens” is my default position. Things change.
But that’s not why I’ve put off penning a healthcare directive, part of the advance care planning (ACP) process that experts have been touting for the past 30 years. On the surface, the idea makes some sense: Years before you find yourself, frail and disoriented, in an ICU somewhere, you’ll have ideally described exactly how your care should be handled, thus freeing your loved ones from having to make life-or-death decisions on your behalf. But I’ve read enough tales of doctors ignoring those directives to convince me that no amount of early decision-making is going to ensure I’m treated according to my wishes — which, of course, also could’ve changed since I drafted the directive.
So, my sluggishness felt validated recently when I encountered a well-reasoned argument against ACP advanced by three palliative-care specialists. Writing in JAMA, R. Sean Morrison, MD, Diane Meier, MD, and Robert Arnold, MD, conclude that the protocol has proven to be less valuable than its advocates have argued. “ACP does not improve end-of-life care,” they claim, “nor does its documentation serve as a reliable and valid quality indicator of an end-of-life discussion.”
For ACP to work in real life, the authors explain, eight steps must occur:
- Prospective patients clearly articulate their values and goals while also describing their preferred treatment in various hypothetical scenarios.
- Physicians clearly understand the patient’s values and goals.
- Prospective patients document their care preferences.
- The directive and/or surrogates are available to guide decisions on the part of a patient who no longer has the capability to articulate care preferences.
- Surrogates base their decisions on the patient’s earlier stated preferences.
- Physicians actually consult the directive and integrate the stated preferences in treatment decisions.
- The preferences are honored by all involved in treatment decisions.
- The healthcare system supports the patient’s wishes with resources and care delivery.
Morrison, Meier, and Arnold point to “a substantial body of high-quality evidence” suggesting that this is generally not the way ACP plays out at a hospital. “Scenarios and situations in clinical practice settings rarely reflect these conditions,” they write. “Treatment choices near the end of life are not simple, consistent, logical, linear, or predictable but are complex, uncertain, emotionally laden, and fluid.”
And that’s if the actual document is available. Writing in the New York Times, Paula Span chronicles the case of a 79-year-old man suffering from dementia who was rushed from his nursing-home residence to the ER with an uncontrollable nosebleed. Doctors there slowed the bleeding and put him on a ventilator. Two surgical procedures followed, and he was transferred to Johns Hopkins Hospital where physicians managed to stop the nosebleed. A tracheostomy allowed for long-term ventilator usage and a feeding tube installed in his stomach offered sustenance.
Two weeks passed before physicians — and the man’s son — learned that he had written an advance directive four years earlier. It was stored in his medical chart, but nobody had bothered to notice. “He wanted comfort care only, no heroics,” Rebecca Aslakson, MD, a Johns Hopkins critical-care anesthesiologist at the time, tells Span. The son “very much wanted to follow his father’s wishes,” she adds. But he had no way of knowing what they were.
And even when those wishes are clearly delineated and understood, emotions can often veto their implementation. Span writes of one ailing older woman whose sister allowed physicians to install feeding tubes “just to see if it would help,” despite explicit instructions prohibiting life-sustaining measures. The patient lived for months under conditions she had expressly forbidden.
These are not isolated incidents, says David English, JD, former chair of the American Bar Association’s Commission on Law and Aging. Often, he tells Span, “the directive never gets to the right place, or isn’t referred to when a decision needs to be made.”
And, as Morrison, Meier, and Arnold note in their JAMA editorial, our end-of-life preferences are not static; myriad factors may combine to alter our preferences between the time we draft a directive and the day we land in some ICU hanging on for dear life. Everything from age and cognitive function to financial resources and the perceived caregiver burden can affect what level of care we may prefer at that point.
Our loved ones may not be of much help either if they’re asked to interpret our wishes for us, they explain. “Surrogates find it difficult to extrapolate treatment decisions in the present from hypothetical discussions with patients that occurred in the past, piece together what the patient would have wanted, disentangle their own preferences and emotions, or challenge physicians who recommend different treatments.”
As morbid as it may seem, palliative-care experts recommend beginning an ongoing conversation with your loved ones and your doctor about your end-of-life care preferences now — and as they evolve. That way, you may all be on the same page when those life-and-death decisions need to be made. The key word here is evolve. My thoughts about preferring heroic measures are likely to be strongly affected by circumstances: Yeah, give me your best shot if I’m hit by a bus tomorrow but go easy on me if I’m pushing 90 and no longer recognize my kids.
Accounting for such unpredictable scenarios seriously taxes my already planning-averse nature. The only thing I know for sure is that the Grim Reaper will come calling at some point down the road. And I should get around to working on that will sooner rather than later.