People who finish a so-called “living will” can be excused for feeling proud, given that it’s among the most commonly shirked chores of adulthood. But too many of them often shrink from what is actually the most important step: telling a loved one about it.
That simple failure, doctors say, can lead to the kind of death that violates the patient’s wishes and torments survivors.
A living will is a document in which you outline what kind of medical care you would want if you can’t communicate your own wishes. In theory, you deliver it to a spouse, a child, or other surrogate.
In a study published in JAMA Oncology last summer, however, researchers found that health surrogates are often uninformed. And when they don’t know how much — or how little — treatment a patient would prefer, they are likely to choose the most aggressive medical options, even when the patient would have wanted otherwise.
The study examined the cases of 2,000 cancer patients who died between 2000 and 2012. During that span, the percentage of patients who received aggressive care, like intubation or resuscitation near life’s end, increased from 7 percent to 58 percent.
Was that their preference? Unlikely.
The patients’ health surrogates likely erred on the side of aggressive care when they were uncertain, and when the patients couldn’t speak for themselves, said Lauren Nicholas, a professor at the Johns Hopkins Bloomberg School of Public Health and the Hopkins medical school who led the research.
To reach this conclusion, Nicholas said her team examined patients’ end-of-life preferences, including in cases in which patients documented those preferences but failed to communicate their wishes to caregivers.
Very rarely did patients choose the “all care possible” option.
For Nicholas, the takeaway was clear. “Even well-laid plans can go awry if the actual surrogate decision-makers don’t know your advance-care directive exists, and what it says,” she said.
The problem, of course, is that patients are reluctant to thoroughly advocate for their end-of-life preferences — and to do so with their loved ones’ involvement.
The participants in Nicholas’ study were cancer patients over age 50, for whom death was more than a remote possibility. More than 60 percent of them had participated in some form of end-of-life discussions — they just hadn’t done so, evidently, with whomever was actually responsible for ensuring their end-of-life preferences were granted.
One possible reason is that spouses often grant power of attorney to one another or complete living wills, but they find it too painful to talk openly about each other’s death.
Dr. Rebecca Aslakson, a critical care anesthesiologist and palliative care doctor at Johns Hopkins Medical Center in Baltimore, recalled the case of a patient who was languishing in the intensive care unit with end-stage cancer. The patient, who was in her 50s, wanted to end treatment but couldn’t bring herself to tell her husband.
The woman’s daughter tried to convince the husband — who was not her biological father — that the woman was ready to die. But he didn’t believe her.
The woman appeared to be watching in torment as the discussions played out, with her husband becoming angry and shouting at her daughter. Then, Aslakson said, the husband’s aunt entered the room. “She had a huge personality. … She said, ‘This is what she wants!’”
The husband questioned why his wife hadn’t told him directly if she really was prepared to die.
“Because you’re yelling at her!” the aunt said.
The aunt then went one step further, explaining to the husband the importance of a living will. Still disbelieving, he asked whether she had one.
“Of course I do!” she said. “It’s in the Bible on the mantle!”
The man stood down, Aslakson said. The conversation in the room changed, and the woman was withdrawn from treatment.
She passed away a short time later. In keeping with her wishes, she died at home.