The first paper included 201 neurologists who completed an online survey. Of these respondents, almost half reported dealing with families who requested that organ support continue after a declaration of death by neurologic criteria (DNC).
When asked what they would do in a hypothetical situation that mirrored the above scenario, 48% said fear of litigation would push them to continue organ support…
"Not only did these situations with families occur for many of the respondents, [they] happened, on average, about six times per individual ," lead author Ariane Lewis, MD, assistant professor, Department of Neurology and Neurosurgery, NYU Langone Medical Center, New York City, told Medscape Medical News…
In the second study, published online July 25 in Clinical Transplantation, Dr Lewis and colleagues examined 208 articles published in the United States on two widely reported brain death cases.
"Only 7% of the articles noted that organ support should be discontinued after brain death declaration unless a family had agreed to organ donation," write the investigators. In addition, only 4% explained what brain death is.
On the other hand, 72% of the articles referred to the patients as "alive" or on "life support." Dr Lewis noted that these terms falsely imply that there is a chance that a patient with brain death will recover…
"Although the declaration process is very clear in the guidelines, there's an absence on how to handle situations where once a patient is declared brain dead, the family requests that organ support be extended for a variety of reasons, such as religious objections. Or sometimes they're concerned that the patient isn't really dead or could recover," said Dr Lewis…
New York, New Jersey, California, and Illinois are considered accommodation states because they have "legal accommodation exceptions," meaning family requests for continued organ support should be considered. All others are known as "nonaccommodation states."
"Although there are case reports on management of objection to DNC, there are no universal legal or medical society guidelines to dictate behavior in these challenging cases," write the researchers….
Of the respondents, 105 and 96 were from nonaccommodation and accommodation states, respectively. Forty-six percent of the former group and 48% of the latter had received past family requests to continue organ support after DNC.
The survey findings included the following:
93% agreed that a DNC signifies "legally dead";
97% had personally declared a patient as DNC;
78% disagreed that patient families must give consent before a DNC evaluation is performed;
47% disagreed and 42% agreed that permission was needed before discontinuing organ support after a DNC declaration, and 11% were neutral;
47% disagreed that there should be different policies between adult and child patients; and
Among those who said that adult and pediatric policies should be different, many wrote that parents should be given more time to accept the circumstances.
Interestingly, 95% said certain circumstances should allow physicians to continue organ support, while 70% said organ support after DNC should be required during certain circumstances.
The most commonly cited reasons for requiring or allowing a physician to continue organ support were situations in which loved ones are waiting for additional family members to arrive and/or awaiting arrival of a religious official for last rites.
A desire to avoid litigation was the most common reason to continue organ support after a family voiced religious objections to stopping the support. However, significantly more of the accommodation states voiced this belief vs the nonaccommodation states (57% vs 41%, respectively; P < .02).
Surprisingly, a large portion of responders from accommodation states said they didn't know about their accommodation exemption status — including 91% from New Jersey, 87% from Illinois, 62% from California, and 54% from New York.
In the second study, the researchers assessed 208 unique articles published online before August 2015 on two cases. The first concerned Jahi McMath, a teenage girl with a family who refused to allow the discontinuation of organ support after she was declared brain dead. The second case concerned Marlise Muñoz, a pregnant woman whose hospital refused to discontinue her organ support until ultimately it was ordered to do so by the courts.
In the 149 articles that used the terms "alive" or "on life support" by the reporter, 144 said the patient was brain dead. However, that term was defined in only 9 of these articles.
In addition, 16 articles suggested that a persistent vegetative state and brain death were the same thing, and 9 implied that a physician must seek permission from a family, court of law, or hospital board before stopping organ support.
The topic of brain death "is beset by confusion, doubt, and in some cases even a false impression of hope for recovery," note the investigators…
For now, she suggested that clinicians should speak frankly with families "just as soon as you encounter a patient with a catastrophic brain injury that could potentially lead to brain death" and that they explain exactly what brain death is. This way, families can start to prepare themselves — and a DNC and organ support discontinuation won't come as such a shock.
"Obviously there will still be scenarios where families will bring up objections, but hopefully this can help to reduce at least some of these conflicts," she said…
But the biggest surprise was that although 93% of the respondents said they somewhat or strongly agree that DNC is a legal criteria for brain death, "What struck me is the implication that 7% don't agree. Are they neutral or do they disagree? I think that gets at the crux of the issue," he [Dr. Gronseth]said.
Because there is a significant minority of both physicians and lay people who don't think a DNC means legally dead, "inevitably there's going to be a conflict when you run into a family with these objections. And when that happens, there's no simple solution — even though some of the neurologists were asking for a simple guideline," he added…
He noted that "there are certainly cases" where education and extra time can help an objecting family to eventually accept a diagnosis. "But for the remainder who just fundamentally disagree, they're never going to accept this."
So what can a physician do? "Legally, if they're in a nonaccommodation state, they can disconnect the patient's body. But my personal opinion is that that's not the way to handle it with the family. That's what the legal system is for," he said.
"Until a decision is made, it just makes sense to keep the patient on organ support. But that's my opinion and not the AAN's opinion," said Gronseth.
He noted that the AAN's guideline concerns the legal criteria of death "and making that diagnosis as accurately as possible. It doesn't address the ethical, social, or legal challenges."