There's a belief gaining popularity that when patients seem to be nearing death's door, doctors should back off from aggressive medical care and let them die in peace.
Providing "heroic" care has become a negative, and many doctors are stepping back from it. According to a 2011 study, 42% of primary care physicians believed they were overtreating patients.
And yet some patients—even when debilitated by metastatic cancer, brain injury, or old age—still want to keep on fighting. They don't want the doctor to give up on them, and there are many documented cases when that extra boost has saved their lives.
These patients may be a minority, but they are a significant minority, and their numbers appear to be growing. A study released in fall 2015 found that nearly one third of people who fill out advance healthcare directives requested medical interventions. And while polls conducted by the Pew Research Center show that 15% of the American public in 1990 agreed that that everything possible should be done to save a patient's life, that figure rose to 31% by 2013….
When patients—or, very often, their families, who are supposed to be representing their interests—insist on continuing care even though death seems near, their pleas can often be just wishful thinking, based purely on emotion. In a 2009 study of family members of intensive care unit (ICU) patients, 32% would choose continued treatment for their family member despite being told that there was less than a 1% chance of survival.
But in a surprising number of cases, the family is right: The right amount of "heroic" care could turn things around and provide many extra years of life. This was the case for the elderly mother of Kathleen Finlay, founder of the Center for Patient Protection, which advocates for patient rights in the United States and Canada.
In a 2013 article on the center's website, Finlay recalled doctors' premature efforts to let her mother die. In 2008, when her mother was in her 80s, she was admitted to a Canadian hospital with a serious infection. The doctor asked the family to sign a "do not resuscitate" (DNR) order, which involves withholding cardiopulmonary resuscitation (CPR) in the event of cardiac or respiratory arrest.
The family refused to grant a DNR, citing their mother's wishes. But the doctor didn't take no for an answer, Finlay wrote. He went directly to Finlay's mother and sought her consent for a DNR. Even though she was delirious with a fever, the doctor decided that he had gotten consent from her and ordered the DNR…
But the family also had good reasons to fear a DNR. Having a DNR in your chart can set you up for poorer care. Although DNRs are supposed to be limited to withholding CPR, they can be misinterpreted to mean withholding other interventions, according to a 2002 study. That still seems to be the case today. A study published in 2015 showed that even when DNRs were given to cardiac patients with the best prognosis, these patients experienced lower survival rates and less resource use than similar patients without DNRs.
Back to Finlay's mother: Against the doctor's expectations, she recovered and went home. A few years later, at age 89, she was again hospitalized, this time for cardiac arrest, and the physician in charge again wanted to place a DNR order. This time it was a resident who told Finlay that for patients her mother's age, the chances of surviving another cardiac arrest were almost zero, but the family refused to authorize a DNR, and this time the decision stuck. Lo and behold, Finlay's mother had another cardiac arrest, but she received CPR and recovered.
Three years later, when Finlay wrote her article, her mother was still alive. "She remains curious about the world around her, engages in conversations, and enjoys her music and her garden," the daughter wrote. "How would we feel today if we had deprived her, and ourselves, of that by acceding to the hospital's urgings?"…
But, in fact, US doctors in some hospitals have very high DNR rates. In a US study in 2014, doctors' use of DNR orders for stroke cases varied from 23.2% in the highest quintile of hospitals to 2.2% in the lowest quintile.
One reason for the wide variation in the use of DNRs is that doctors may not agree on what could happen to patients, according to Constantine A. Manthous, MD, an intensivist at Lawrence and Memorial Hospital in New London, Connecticut. Even in some of the finest ICUs in the country, "experienced medical professionals have not been able to reliably predict patient outcomes," he says.
US doctors frequently overrule patients' wishes on DNRs, just like the Canadian doctor did for Finlay's mother. In a survey of the end-of-life care for patients aged 80 years and older, 9% of those who died without getting CPR did not have a DNR order in their chart, and almost 40% of those who died without CPR or those who had a written DNR order had a previously expressed desire for CPR….
Sometimes, when doctors order DNRs without telling patients, they think the patient would get very upset over the mere mention of a DNR, Dr Manthous says. For this reason, he says, New York law waives any requirement to get the patient's consent for a DNR if the doctor believes it would "harm" the patient. But Dr Manthous says that doctors' concerns here are overblown. In a 2006 study he coauthored, 90% of patients said that they wanted to know about DNRs…
Thus, each doctor is expected to come up with his or her own working definition of futility. In doing so, part of what doctors look at is the odds of survival for the patient, based on studies on overall patient outcomes, and the quality of life if the patient were to survive.
Perceptions of the quality of life, however, can be quite different for doctors as opposed to patients, according to Stephen Drake, a research analyst from Not Dead Yet, a group that defends patients who are at risk of not getting care. Physicians, he says, tend to prefer outcomes that preserve the patient's intellect. "The intellect is central to physicians' identity, and the idea of losing your intellect is abhorrent," he says. "That means that physicians might place a lower value on a person with a brain injury than the family would."
Moreover, Drake thinks that doctors often overestimate the amount of disability the patient would have. Indeed, he's witnessed this first hand, with his own care. When Drake was born in 1955, he developed a severe hematoma as a result of a breech birth. The doctor bluntly told his parents that the baby would probably be "a vegetable," adding: "If I were you, I wouldn't even pray that he lives." But his parents insisted that everything should be done. Drake says that he's had to deal with neuromotor issues and learning disabilities, but he is very thankful that his parents didn't follow the doctor's advice. "I would have been the victim of a form of passive euthanasia," he says…
"A small physiological improvement might seem sufficiently beneficial to a patient but not to a doctor (or vice versa)," they wrote. When the values of doctors and patients clash, they concluded, the patient's values should come first. "It is the patient's life to lead and death to die," they argued. "A concern with professional integrity cannot trump that, when there is some possibility, however small, of survival, and the patient wants to take it."