With a (much-delayed) nod toward our eventual demise, My Lovely Wife and I last week consulted with an attorney about the assorted documents designed to help our survivors tie up the myriad loose ends our deaths will inevitably reveal. The legal and financial issues that arise when discussing estate planning, executors, and powers of attorney, we were pleased to learn, seemed eminently navigable. But then there’s the healthcare directive.
It’s not that the document is difficult to complete or that MLW and I wish to avoid discussing the morbid exigencies it entails. It’s just that we may never know whether it will serve any meaningful purpose when we arrive at death’s doorstep.
Patients and their loved ones began inserting healthcare directives, also known as advance care planning, into conversations with doctors after the 1990 passage of the Patient Self-Determination Act. Promoters of the federal legislation believed it would prevent the sort of “heroic” measures that often kept patients alive in a vegetative state. Allow people to determine — before they may become incapacitated — how they want to be treated when the end is near, they argued, and decisions at that point would become more rational and outcomes more satisfactory. Quality of life would become as important as prolonging a life.
It certainly worked that way when MLW’s mom suffered a major stroke several years ago. At the hospital, doctors were preparing to take multiple blood draws and run numerous tests before learning she had drafted a healthcare directive. Once it was produced, their entire treatment approach changed. They focused on keeping her comfortable until she could be moved to a hospice facility. She subsequently rallied, moved to a nursing home, and enjoyed a relatively good quality of life before dying peacefully eight months later.
But, as Daniela Lamas, MD, writes in The New York Times, it doesn’t always turn out that way. What people think about end-of-life treatment when they’re healthy doesn’t always match their desires when they’re deathly ill.
Lamas, a pulmonary and critical-care physician at Boston’s Brigham and Women’s Hospital, tells the story of a patient who arrived at the emergency room suffering from a severe case of pneumonia. She was struggling to breathe and would surely die unless doctors inserted a breathing tube, a procedure she had expressly forbidden in a healthcare directive created years earlier. But she couldn’t speak for herself, and her husband overruled the document.
“I believed this to be a failure of our healthcare system: A patient was in exactly the scenario she had long wished to avoid,” Lamas writes. “When I stood at her bedside, I murmured an apology.”
When the family gathered a few days later, Lamas told them she would honor the patient’s directive by continuing to treat the pneumonia and remove the breathing tube when (and if) she could breathe on her own. Once the tube was removed, it wouldn’t be reinserted; there would be no tracheotomy.
The patient recovered and the breathing tube was removed. Rather than feeling betrayed, she told Lamas she was glad her husband defied her directive and allowed doctors to do all they could to save her life. She said she even would’ve been willing to undergo a tracheotomy if it would’ve prolonged her life.
“She had changed her mind,” Lamas notes. “And if the doctors and nurses treating her had made decisions based only on the preferences that she had articulated years ago, we never would have known.”
“She had changed her mind,” Lamas notes. “And if the doctors and nurses treating her had made decisions based only on the preferences that she had articulated years ago, we never would have known.”
This is not a rare occurrence, says R. Sean Morrison, MD, a geriatrician at Mount Sinai’s Icahn School of Medicine. And it’s only one of the many reasons an advance care plan may not always work as well as its boosters had hoped.
“In a hypothetical scenario, we assume our choices are going to be simple, logical, and linear, and we can preserve our autonomy,” Morrison explains in a 2022 interview. “The reality is that when decisions need to be made in the setting of serious illness and a lot of uncertainty, they are extraordinarily complex, emotionally laden, and fluid.”
In a 2021 JAMA editorial, Morrison cites a wide range of studies that found no evidence that advance care planning improved end-of-life care for patients. Healthcare directives only become useful, he argues, when they clearly describe a patient’s end-of-life goals and match them with specific treatments in some future scenario. Then, the document must designate a surrogate who is willing to make life-or-death decisions should the patient become incapacitated. Clinicians must understand those wishes and then have access to the healthcare resources required to honor them.
“The challenge, though, is there are problems with each one of these steps. Scenarios and situations in clinical practice settings rarely reflect these conditions,” he says. “Also, patients’ end-of-life choices are determined by age, function, culture, family preferences, financial resources, and perceived family caregiver burden. All these elements influence decision-making.”
To make matters more complicated, he adds, doctors are not trained to communicate effectively about serious illnesses. As a result, patients and their loved ones often don’t fully understand treatment options and their likely outcomes: “There is a real disconnect between what physicians think they are telling patients and what patients are hearing.”
But even if doctors and patients were able to connect more effectively, there’s little research to help guide those conversations. Nobody seems to know just how much information patients are generally seeking or even what role they typically want physicians to play in end-of-life decisions. “We need more research to help us understand how we can have much better-informed conversations with patients when we must make immediate decisions,” he says.
I’m not sure further research is going to make any of this less complicated. So, I was glad to hear our attorney simply emphasizing the importance of naming a couple of surrogates and suggesting that we revisit the directive annually, revising it as conditions — and preferences — evolve. All that makes sense to me, though I can’t help but wonder whether any amount of planning will be sufficient when MLW and I reach death’s doorstep. It seems unlikely that we’ll know how we’ll really feel until we get there.
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