You Heard Us Called 'Death Panels' (Here's The Truth)
Hey, remember the bureaucratic asshole bad guys from like, every episode of House? The folks that tell him he can't put a Nazi's heart in a rabbi or whatever it is he's going to do to save his patient's life? Those are ethics consultation teams! And they're not actually the bad guys. We talked to Kenneth, who told us about the summer he spent shadowing one such team at a rural hospital in Virginia, and to two prominent bioethics professors: Northwestern's Dr. Joel Frader, and Loyola University's Dr. Katherine Wasson. They told us ...
We're Not There To Pull The Plug On You
An ethics team is a motley crew that might consist of physicians, nurses, social workers, divinity scholars, and attorneys who are on-call (at the request of patients or physicians) to consider the grey areas of modern medicine.
But much like a marriage counselor, the ethicists' recommendations aren't binding; the point is to get everyone in the same room and talking. In fact, there are some creepy precedents for why the advice of the ethicists shouldn't be taken as a prescription: "There was a time, in the 1980s, when congressional and bureaucratic action suggested mandatory ethics panels regarding newborns with various defects," Frader says. "Some hospitals made the decisions of the ethics panels final."
In several cases, life-saving treatment was denied to infants who already had some sort of disability. This only happened with the parent's consent, but it was eventually ruled a civil rights violation.
"Is there even a tiny handicap ramp in the Infant ICU?"
Dr. Fraser says, "In retrospect that was foolish. Ethicists, even those with real clinical backgrounds -- MDs, RNs -- can't presume to know enough about the intimate details of a situation to have final authority."
For patients grappling with their own mortality and/or the people who love them, these ethics teams can seem ominous. One of Kenneth's mentors pointed out early on that her main goal was to fight public perception that she and her team were angels of death. The ethicists are asked to weigh in on some seriously bummer prognoses. And most of the time it's because the patient isn't in a position to speak for himself: A six-year study Wasson led at Loyola University Medical Center found an overwhelming majority of ethical snags had to do with patients who were "waxing and waning," lucidity-wise.
Turns out when a patient requests another shot of rainbow juice you need someone there to say "no."
Kenneth saw this firsthand, in a patient whose entire body seemed to betray him immediately after heart surgery.
"His kidneys failed, and he was having either liver failure or hepatitis," Kenneth recalls. "He had bowel perforation and a bowel infection, along with the heart infection; he was septic. The big thing that was going on at the moment was his feet were maybe becoming gangrenous, or otherwise were just self-amputating. His toes were beginning to fall off."
The patient's sister had instructed hospital staff to keep his feet covered with a blanket at all times, concerned that the site of them might further erode the patient's will to live. But consciousness itself turned out to be this man's personal hell: One night, he began pulling out wires and tubes and told his nurse he no longer wanted to live, and that it was time for him to go.
"Just leave that window open ..."
The family, understandably, did not want to believe hospital staff.
"That patient's sister was freaking out," Kenneth says, "really pissed off, and was telling her parents, 'We need to get these people out of here. They're the ones who are going to decide whether or not to pull the plug. They're not from around here; they're the ones making the decisions' -- and we don't."
The idea that ethicists are on some sort of "death panel" is giving the ethicists far too much credit, but it's a misconception that persists -- and it's especially strong in the rural farming community where Kenneth's hospital is located.
Who needs doctors when you got Grandpappy's Old Medicine cabinet?
"They've said right to doctors' faces, 'You don't because you don't care about him, because he's black, because he's poor, etc.' When I say that a lot of people want to say that their family member's a fighter, specifically this happens a lot with poorer people and with minority groups, because they've not been treated right before, they don't get their due, and they feel at the end is where they're going to make it up."
Frader says this kind of distrust seems to have gotten worse since he helped found the ethics consultation service at the University Of Pittsburgh Medical Center 25 years ago.
"When clinicians come to the conclusion that the treatment is not likely to be a benefit or may actually be harmful, and express that to families, families feel they want to keep going because they think the clinician is trying to deny something that they're due," Frader says.
"You caught us. We actually got a family coming in that has way better insurance than you and they need the room."
The U.S. in general is pretty dubious of its doctors, and there is a lot of skepticism coming from two distinct subcultures, Frader says: the typically well-educated, upper-middle-class anti-vax community, which has "complicated if misguided perceptions of what medicine can and can't do," and those who "mistrust doctors on the basis of racial divisions, ethnic divisions, and cultural division."
Perhaps this is how we heal the racial and class divide in the United States: With our shared but baseless mistrust of medical professionals.
Let's start with the chiropractors.
We're The Ones That Get You The Straight, If Unpleasant, Answers
Here's a classic ethics consult scenario, according to Wasson:
"The medical team has talked with the family two or three times. The patient is dying, certainly we need to shift the goals, and then (staff) gets to a point where they say 'let's get ethics involved, we're not sure what else we can do here.' And we come in and we facilitate a conversation, and for some reason -- maybe it's the language, the discussion -- the penny drops, and people realize what's happening. It wasn't that they haven't been told that before, but it sinks in a different way."
"Hey, what's everyone's take on oak versus maple coffins? Just making random, unrelated small talk."
Kenneth saw this play out with one older woman, who just that day had gotten into her vehicle in peak health, but after a serious accident was given six months to a year to live. Her doctors wondered if they should first communicate the information to her daughters and let them decide how she would want to hear it.
But one physician was adamantly against what he saw as a return to the not-so-distant practice of withholding buzzkill medical information from patients. After a discussion of the woman's all-around fragile physical (and potentially mental) state, he came around to the idea of talking with the family first.
"We told the family, 'Here's the current situation and here's how we project it, and we're all in agreement on this,'" Kenneth says. "That gave them time to really digest that, to figure out how they wanted to communicate with their mother and move forward."
"Thanks, that should be plenty of time to rewrite the will."
See? They don't prescribe death: They just read off the side effects to you when you pick it up for the first time.
It's Not The One You Want To Hear, But Death Is Often The Answer
People don't generally call for an ethics consult unless things have gotten to the end-of-life stage. That's when a patient's family will often (and understandably) fall back on the rationale that their loved one is a fighter, and liable to beat the odds.
But most ethicists are all about going gentle into that good night.
First off, physicians aren't legally or morally required to provide treatment they believe will be futile. And most state laws and hospital policies allow physicians to refuse to give any treatment they feel to be without medical benefit. Ethical standards bear that out: Practically speaking, the American Medical Association's Code Of Medical Ethics "recognizes no ethical difference between the withholding and the withdrawal of life-sustaining treatment."
"Last I checked, what's in this tube doesn't dissolve stage four brain tumors."
But in practice, presenting that repackaged trolley problem to the patient's loved ones provides little consolation. It sometimes puts them at odds with the doctors, who often feel that life-extending measures can actually violate the Hippocratic Oath. According to Wasson, "futile" care -- providing drugs or artificial hydration the body can no longer process, for example -- can actually prove physically painful.
So how does one step delicately through this philosophical minefield? Like a stand-up comedian: It sometimes comes down to reading the room.
Also, you're both dealing with hecklers thinking they're better at your job than you.
Kenneth once sat on a 12-person ethics and care team meeting regarding a coma patient who had virtually no chance of ever waking up. The palliative attending physician nailed it, as he recalls: "He said, 'We have to tell the family a story that they're going to be ok with. We need to present them a narrative of her death that will stay in line with what they want. So they say she's a fighter? You say they're very Christian, very religious? Well, this is the case: We have all the technology in the world to fight death. God is trying to let her die, is trying to take her home, and we're not letting her. She is fighting to die. All her body is doing is trying to die, and we're standing in her way. We need to let her go.'"
It's hard to sympathize with people who "got death's back," we know. But it's complicated.
We Do Have To Consider Petty Things Like Cost
Two words that might sound heartless in a hospital setting? "Resource conservation." But there are only so many drugs, beds, and medical professionals to go around ... and that is impossible for the ethics community to ignore.
Annnnd now we feel bad for that "better insurance" joke from earlier.
"For many years, one of the biggest principles in ethics was autonomy, letting patients decide their own path of care," Kenneth says. "But recently we've been seeing this push away from individual rights, and more towards community rights. When you think about it, you can fight -- we have the technology to fight death for months, years -- but if you're sitting in the ICU bed, and you're never going to get better, you're using a resource that someone who actually could get better now can't use. The old way of thinking might have been, 'Well it's their choice if they have the money to pay for it, or the insurance to cover it, let them do it.' Now we're trying to give doctors more rights to refuse to give people treatment. If they think they're wasting resources, they can say no."
It's a concept that invokes the bogeyman of death panels again, and the cautionary tale that we know as Canada. But it's also an idea that is gaining momentum, with an influential statement on "responding to requests for potentially inappropriate treatments in intensive care units" released by a number of prominent medical associations last year. This idea has been nicknamed the "futility movement," and Frader traces it back about 15 years, to Texas. That's when the Lone Star State passed "a law that allowed clinicians using a somewhat rigorous due process kind of business to draw that line in the sand. And now there are something like 27 states that have laws that permit that."
Death panels started in Texas. Bring that one up at the family dinner.
It's divided the ethics community. Frader himself generally objects to "the unilateral imposition of decisions to either limit or withdraw treatment." For one thing, it's kind of brutal. In Texas, an ethics committee effectively pulls treatment from any patient they believe is "futile." At least one of these patients was an infant child. There's no appeal, there's no paper trail, and no one even collects data on how many cases Texas ethics committees rule on. That starts to sound closer to the death panels we fear, but the medical community is far from unanimous in wanting to do things the Texas way.
"I generally think the unilateral imposition of decisions to either limit or withdraw treatment is really not a good idea," Frader says, adding that it can add up to "the exercise of raw power in a situation where patients and families are feeling helpless and angry, and where they're going to have to live with the consequences of the decision in ways the clinician simply won't have to."
For example, doctors can just drink it away.
This isn't exactly an ivory tower observation: In addition to teaching, Frader is a pediatric palliative care physician at Lurie Children's Hospital in Chicago.
"I think it's often harder for parents to be willing to say 'enough.' And I think it's not hard to understand that -- the general expectation is that your kids are going to outlive you. And when that doesn't seem possible, it's emotionally very difficult for families. I think clearly those situations are different from situations where you're dealing with an 80-year-old with either dementia or disseminated cancer, or progressive bad lung disease, where everybody has had some time to come to grips with the degenerative process. And that's often very different than what we see with children."
What's his solution?
Other than endless puppy-pic binges?
"A lot of talking. Endless talking. And it can be completely exhausting. It can go on for weeks, and sometimes months."
That sounds terrible. Does it even work?
For more insider perspectives, check out 7 Awful Things I Learned About Surgery By Helping Surgeons and 6 Insane Realities Of Emergency Medicine (You Should Know).
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