Last weekend, Thaddeus Pope posted a followup to an earlier item shared and discussed on his Medical Futility Blog.
Let’s take it in order. Back in March of this year, Pope originally shared the news about the unexpected recovery of Kimberly McNeill of New Zealand, an 18-year-old who suffered severe injuries in a car crash in December 2010.
Here’s a succinct account from Pope’s original entry in March:
In December 2010, New Zealand teenager Kimberly McNeill was in a very serious car accident on her way to a music festival. Physicians determined that she would never recover. After 15 days, they withdrew life support against her family’s wishes.
But, defying the odds, Kimberly pulled through and was transferred to a regional hospital and then, this week, to her parents’ home. (Hawkes Bay Today)
This last weekend he briefly reported Kimberly McNeill is “scheduled to enroll full-time at Auckland University.” The news link included in this update provides more details:
But dad James McNeill and mum Jackie Kiddle, both trained acupuncturists, refused to accept the prognosis and enlisted the help of a senior Chinese medical practitioner specialising in neurology.
“We decided very early on to give 110% to even the smallest chance of recovery,” James told Sunday News.
They put together a treatment plan using alternative therapies – Chinese herbs, acupuncture and homeopathy.
The aim was to build up Kimberly’s strength to take her through the “crisis” period after her life support was switched off, on January 14.With doctors’ permission, Chinese herbs were fed through a nasal-gastric tube and a senior acupuncturist worked on her. James and Jackie kept vigil for 72 hours straight, turning Kimberly constantly and using homeopathic remedies to keep the fluid trapped in her lungs from drowning her.
“She made a miraculous recovery,” James said. “The doctors were very pleased too and said we could take her home to Hawke’s Bay. When the Hawke’s Bay [Hospital] team arrived, they immediately hooked her back up on life support and it was like a dream, she just thrived from that time on.”
The family credits alternative medicine for Kimberly’s recovery. I’d like to think that the constant repositioning to prevent her suffocating from fluid build-up might have helped and also can’t help but wonder if one or more of the herbs involved had diuretic properties that might have helped reduce the fluid build-up in her lungs.
In any case, the hospital doesn’t seem to be arguing with the family calling her recovery a “miracle.” And why should they? If her recovery was a “miracle,” then no one will ask pesky questions about the protocols used to determine not just a recommendation of life-support withdrawal, but withdrawal over the objections of the patient’s family.
When Pope first reported on this, Wesley Smith posted a comment suggesting that this wasn’t a “miracle” but a “rush to judgment” case. Pope never replied to Wesley. Pope had already weighed in with his major concern over the story:
There really are limits to prognostication. That fact and cases like this will continue to prevent some surrogates from accepting recommendations to move to comfort care only. There is often a remote chance of error, a chance that there will be a “miracle.”
Not for the first time, Pope’s operating assumption seems to be that the hospital team that ordered a withdrawal of treatment was acting within an accepted standard of care. Instances like these are exactly the right time to be asking questions about the prognosis given by the hospital staff.
I don’t expect, of course, for too many people to take the word of people like myself or Wesley Smith. But I would like to think that some comments regarding a similar case by bioethicist Steven Miles might make Pope and others entertain some other possibilities beside the standard “miraculous recovery” line:
June 28, 2007 —
Two short weeks after the culmination of a legal battle between his wife and family over whether to maintain his life support, Jesse Ramirez of Arizona appears to be on the road to recovery.
According to local reports, Ramirez, 36, suffered traumatic brain injury in a May 30 car accident, which put him in a coma. He had been in this minimally-conscious state for a little more than a week when doctors informed his wife that he may never recover — and she made the decision to have his feeding and water tubes removed.
Ramirez’s family made a legal appeal and won, and his feeding tubes were reconnected. Now, Ramirez has regained consciousness and recovered to the extent that he can interact with visitors.
This might be sounding familiar, I suspect. While the family is calling the recovery a “miracle” and the medical team isn’t arguing, others offered a different explanation:
(The “Dr. Miles” referred to below is Dr. Steven Miles, professor of internal medicine and bioethics at the University of Minnesota Center for Bioethics.)
If there is one point of accord among both ethicists and neurologists, it is that Ramirez’s recovery falls far short of a medical miracle.
“This is by no means a miracle of any kind,” Miles says. “Traumatic comas are notorious for late wake-ups.”
Dr. Ausim Azizi, chairman of neurology at the Temple University School of Medicine, agrees.
“There is actually a physical basis for those who recover,” he says. “The reason they call it a miracle is because they’re so rare.”
More…
In this case, however, Ramirez’s wife asked doctors to remove her husband’s feeding and water tubes nine days after the accident.
“That’s a little soon, because there are so many factors involved,” Azizi says.
He adds, however, that every case is unique.
“I wasn’t at his bedside,” he says. “Each person has a different situation; it’s important to talk to the physicians working with the patient.”
“In general, I would not want anyone to hear this story and be critical of his wife,” says Jeffrey Spike, associate professor at the Florida State University department of medical humanities and social sciences.
“In general, we trust spouses to make good decisions for us, because in general spouses know the most about us.”
Whether Ramirez’s wife’s decision was a good decision is open for debate, of course. But Spike says the case raises the question of whether people should trust spouses or parents to make these life or death decisions, Spike says.
“When you have these tough decisions to make, this kind of parental love makes the decisions very difficult.
And that’s why we tend to trust the spouses more in these situations. Parents tend to make decisions based on what they can live with, rather than what the patient would want.”
Still, Miles says Ramirez’s wife may have been acting on incomplete information from the doctors about her husband’s chances of survival.
“This case is about a hasty clinical decision which should have never been made,” he says. “In terms of the process itself, stopping the feeding tube this close in time to the injury is actually pretty unusual.
“This is about malpractice, not about a persistent vegetative state.”(Emphasis added.)
In the end, then, I guess that I do agree with Pope’s statement that “there are limits to prognostication.” But I would add that the closer to the injury the less certain the prognosis – and any early prognosis given with certainty should be treated with healthy skepticism.
In the meantime, the hospital that wrote off Kimberly McNeill as “hopeless” seems satisfied to let everyone call it a miracle due to application of alternative medicine. A wise decision on their part, in a face-saving sense, but a less than desirable one in terms of patient safety and welfare.
–Stephen Drake
This is excellent. The miracle aspect of these cases cannot be highlighted enough, so I am glad you are bringing it up again. How much the does the rarity of recovery result from the preponderance of giving up too soon? And how much of giving up too soon really means ending lives through such unnatural forces as removing food and water to hasten death? Maybe medicine is squashing its chances at advances–why not make cases of recovery occurs and make replicating them our close study rather than writing them off as miracles? It seems to me the only way to really know how rare these recoveries are is to treat everyone, to learn to wait and see, to try everything, and then see how many people recover. I believe in miracles of the most supernatural kind; but using the term miracle to cover up ending lives that can be saved hijacks the term. (And not that recovery is the only thing that gives dignity to a living soul…But a fight for recovery shows the worth of that soul in all its states.)
I agree that in many “miracle” cases the surprising outcome means that an error was made.
I am not sure the Ramirez case is a good example. The numerous court hearing and legislative hearings prompted by that case confirm that the wife’s decision to withdraw was ill-motivated and premature. In other words, the error was at least negligent and probably deliberate.
In contrast, in McNeill, the error was probably non-negligent. All the available medical information may have suggested that someone in her condition would probably never recover.
I should probably stop referring to such cases as “miracle” recoveries. We know for sure that a certain number of prognostic errors will be made. Cases like McNeill are totally predictable.
– Thaddeus Pope
To Thaddeus Pope:
Sorry for the delay in responding.
I’m not sure I agree about the Ramirez case. The wife justified her decision based on the prognoses given her by the medical team.
I also have to disagree about the McNeill case. The point that Steven Miles was making in the linked article (and recently confirmed through correspondence) is that a firm prognosis is not good practice so soon after an injury. The basic guideline is that the longer a person stays in a coma the less likely recovery becomes.
This was also the point that multiple doctors made in the Haleigh Poutre case, when she started to regain consciousness. It’s worth noting, though, that none of those physicians spoke out during the months that Haleigh Poutre was an “end of life” case.
They only questioned Baystate and the Mass. Social Services after the fact. To this day, Baystate hasn’t been subjected to any real questioning over their role in that particular case.