Some fascinating insights are shared in this NewYork Times opinion piece describing a disturbing challenge facing some Parents as they attempt to take an active role in healthcare decision making for their sick children.
Maxine Eichner, author of “The Supportive State: Families, Government, and America’s Political Ideals” and Professor of law at the University of North Carolina, feels ‘lucky’ to have avoided charges of medical child abuse following an 8 year search for answers to her daughters mysterious illness and together with the 186 comments it highlights for me some very important ways in which undocumented healthcare encounters are failing Patients and Carers.
”Few things are tougher for a parent than dealing with a child’s serious medical condition, particularly if it is complicated and hard to diagnose. The parent has to make hard choices about treatment, navigating conflicting advice from doctors or even rejecting one doctor’s opinion and seeking another. Recently, the situation of these parents has gotten even harder. Some doctors and hospitals have begun to level a radical new charge — “medical child abuse” — against parents who, they say, get unnecessary or excessive treatment for their kids. That this care is usually ordered by other doctors hasn’t protected parents from these loaded accusations”
This for me really highlights the crux of the problem. Patients are all too often rejecting what they consider to be ‘one doctor’s opinion‘ when they shouldn’t ever be in that position except for in the instance of incredibly rare diseases. We live in a time when it’s possible for a boy on the street of Kolkata
to share a SMS (linking to quality content and videos) with the president of the USA we need to be providing Patients with not just a worded opinion but something that’s backed up with written information that will support Patients and Carers if they wish to learn more about the reasoning and opinions that have been considered in deciding on this course of action.
”Although most of these cases have nothing to do with real child abuse, credulous child welfare officials have too often supported the doctors, threatened parents with loss of custody, and even removed kids from their homes — simply because the parents disagreed with the doctor’s plan of care”
I think we need to make it clear that when we know that somewhere between 40-80% of information provided to Patients by Healthcare Practitioners is forgotten immediately there may be a distinct difference between a) a Doctor’s plan of care and b) what Parents recall of a Doctor’s plan of care. I think we’ve also got to be clear that Doctors aren’t infalliable and will particularly when there are huge pressures and demands on their time failing to mention things that they should of and would have in the ideal consultation.
”Perhaps the most notorious such case is that of Justina Pelletier, a teenager who was being treated for mitochondrial disease, or “mito,” a rare metabolic disorder that interferes with energy production. On the advice of a metabolic geneticist at Tufts Medical Center who was treating her, she was admitted in 2013 to Boston Children’s Hospital, so that she could see her longtime gastroenterologist, who had recently moved there. Without consulting the girl’s doctor at Tufts, Boston Children’s concluded that the girl’s problem was not mito, but largely psychiatric, according to The Boston Globe. When her parents disagreed and sought to transfer her back to Tufts, Boston Children’s called child protection, asserting that the parents were harmfully interfering in her care. Although the Tufts geneticist supported the mito diagnosis, a juvenile court judge deferred to Boston Children’s assessment, and Justina’s parents lost custody. After more than 16 months in state custody, much of it spent in a locked psychiatric ward, Justina was finally returned to her parents — still in a wheelchair, still sick”
For how much longer can we go on treating teenage Patients and their families with less respect than a statistic?
Imagine if we could exhaustively document the care experience right down to every single symptom or concern expressed by this teenage Patient or noticed by their Carer/Parents. Instead of scratching heads and ordering tests we could use draw connections and gather insights from this data to start looking for instances where similar symptoms are being noticed in other Patients so that others can benefit from earlier detection of signs and more focused evidence and experience based treatments. Isn’t this how data insight based companies like Apple, Google and Facebook treat data?
“Her symptoms began when she was 10 and had her first migraine. The headaches became so frequent, nauseating and painful that she missed most school for two years. Eventually, at 13, she received a diagnosis of postural orthostatic tachycardia syndrome, an autonomic nervous system disorder. We learned how to deal with this condition, but when our daughter was 15, her health deteriorated once again. She started to fall — first once a day, then five times, then 20 times a day. The dizziness, fatigue and nausea worsened. When her neurologist refused to believe that the falls were caused by anything besides faintness from the nervous system disorder — though we could see that she was fully conscious and that her legs weren’t working properly during the falls — we sought out other experts. None could explain the falls. Meanwhile, our daughter spent two years using a wheelchair to go all but the shortest of distances. Many doctors suggested that she was exaggerating or even faking her symptoms. A few thought her symptoms resulted from psychological factors like stress. Others surmised that the problem was me: Perhaps because I had migraines when I was younger, I was overly sensitive to her pain. Or perhaps my refusal to accept the doctors’ conclusions was preventing my daughter from dealing with her psychological issues. When she was 18, our daughter learned that some patients with her nervous-system disorder had been diagnosed with mitochondrial disease, which would also explain her intermittent leg weakness. We consulted a mito expert, and almost wept with relief when she believed our account of our daughter’s symptoms. Tests confirmed that our daughter had mito. With luck and a team of exceptional doctors, she managed to get her life back. She recently finished her third year of college. Her wheelchair gathers dust in our basement”
It’s time the healthcare industry adopted “May I make better mistakes tomorrow” as it’s mantra. Today you can be sure that there is another Patient seeing a Doctor who is sat in front of a multi billion dollar Electronic Disease Record that is struggling to draw connections from symptoms that are similar to those that were experienced by Maxine Eichner’s teenage daughter. Why aren’t we paying attention and providing Clinicians with decision aid support tools to help them make sense of data?
”As I’ve researched medical child abuse over the past year, several advocacy and support groups for patients with rare diseases told me they had seen an alarming rise in medical child abuse charges: MitoAction (which supports patients with mito); the American Partnership for Eosinophilic Disorders (disorders relating to white blood cells); the Ehlers-Danlos National Foundation (a rare disorder of the connective tissues); and Dysautonomia International (autonomic nervous system disorders). Through these groups, I’ve surveyed 95 parents who have been accused, in 30 states”
Imagine the potential for these medical child abuse advocacy and support groups to call for Parents to get access to clinically validated medical history taking questionnaires? The saying “If it isn’t documented it hasn’t been done” would have huge meaning to these Parents as they struggle at incredibly difficult times to recollect when and with whom they shared what information against a backdrop of consultations where they’re being interrupted before being given the opportunity to share their story.
”Dr. Frances D. Kendall, the geneticist in Atlanta who diagnosed my daughter’s mitochondrial disease, told me that she has seen a rising number of cases in which the parents of children with mito had been wrongly charged. Dr. Mark S. Korson, the geneticist who treated Justina Pelletier at Tufts, also said that such charges have snowballed in recent years. Most states lump “medical child abuse” into general child abuse or neglect statistics, and can’t break out separate numbers. Michigan is an exception. Its figures show that, on average, 51 charges of medical abuse have been made against caretakers each year between 2010 and 2013. Extrapolating this to the national population would mean more than 1,600 charges each year”
The families of more than 1600 children are facing ‘he said she said’ arguments while experiencing some of the most unimaginably tough times for which they have no experience or training to call upon. I wonder how many medical child abuse cases involve issues that have arisen from Parents conducting internet research and trying to share this with their Doctors?
”Sadly, while knowledge of Munchausen traveled across the Atlantic, skepticism about it did not. Starting in the mid-1990s, two doctors — Dr. Carole Jenny, a pediatrician specializing in child abuse, and her husband, Dr. Thomas A. Roesler, a psychiatrist — proposed that Munchausen’s taint could be avoided by reconceptualizing the condition. Doctors, they said, shouldn’t focus on the parent’s mental state (as in Munchausen) but, instead, simply determine whether the child had received unnecessary and harmful, or potentially harmful, care at the behest of a parent. They defined “potentially harmful” to include any unnecessary medicine or diagnostic test that could have harmful side effects, even if the child wasn’t actually harmed. Such care, they argued, should be labeled medical child abuse, and treated like any other kind of child abuse”
I wonder why we don’t see this legislation being used to bring child abuse charges to website owners and advertisers who peddle misinformation that leads to Parents choosing potentially harmful and unnecessary medicines/tests??
”Dr. Richard G. Boles, a mitochondrial disease specialist who has worked on some 100 cases involving suspected medical child abuse, said that only about five fit the classic Munchausen situation and should be considered abuse. Of the rest, he says, about two-thirds involved a demanding mother who got on a doctor’s nerves; the remainder involved a parent who was too anxious in dealing with doctors who couldn’t give adequate answers”
Once again it seems “Little Miss A-type personalities” are finding it hard to get on with a healthcare service that’s still focused exclusively on providing office visits.
”Compounding the problems with the overly broad definition of medical child abuse is the considerable misinformation spread by its proponents. In 2013, a governor’s task force in Michigan stated that “many cases of Medical Child Abuse go undetected because caregivers are skilled at deceiving the medical community.” No hard evidence, however, suggests that such parents are anything but rare. Medical child abuse is far more likely overcharged than undercharged”
The other big benefit of automatically documenting care interactions is that not only can innocent parents be protected but undetected child abusers can’t as easily hide.
”The task force identified these warning signs of medical child abuse: a “highly attentive parent” who is “unusually reluctant to leave his/her child’s side”; a parent who “demands second and third opinions”; a parent who “is not relieved or reassured when presented with negative test results and resists having the child discharged from the hospital”; and a parent who has “unusually detailed medical knowledge.” These warning signs accurately describe many, if not most, loving parents of medically fragile children”
This is precisely why you can’t let warning signs be triggered by such broad generalisations. It’s not enough to just record symptoms in a basic paint by numbers style, we need to use questionnaires that can record the reasons why Parents are presenting information so that we can connect with them and understand why they are doing what they do in these very difficult times.
There are Psychologists who have first hand experience with parents that have been proven to have Munchausen Syndrome by proxy and there are very distinctive personalities at play that could be specifically looked for. Rejection of the questionnaires outright might even act as a red flag event that would help identify genuine cases of child medical abuse.
“A spokeswoman for Cook Children’s said that she could not discuss the case because of confidentiality rules, but added that the hospital was “morally and ethically obligated to protect children” and would “always err on the side of caution for that child”
How much better would these situations be if Childrens Hospitals erred on the side of early detection and prevention of unnecessary medical child abuse investigations?
”Government should not get involved when doctors disagree about a diagnosis or course of treatment, the doctors have full knowledge of the child’s medical record, and a parent chooses one doctor’s opinion over another’s. It should intervene only when there is evidence that a parent has intentionally provided significant misinformation to physicians, fabricated elements of the medical history or induced medical symptoms. Parents should always be allowed to seek second (and third) opinions”
I think this is a very sensible suggestion but it leaves open the how? Without providing Patients with access to medical history taking questionnaires the act of intentionally provideing significant misinformation to physicians and fabricating elements of the medical history will be a whitewash as the suspicious/accusing physician is the individual who is responsible for entering the Patient information/symptoms into the EHR.
”We must protect children from the rare disturbed parent. But medical child abuse, as it has been understood, is far too big and blunt an instrument to accomplish this purpose. It has harmed too many genuinely sick kids, and made life hell for too many loving parents. It is time to end the medical abuse panic”
”It reads a bit like trying to make something from nothing. The numbers are meaningless without something in the denominator. Is this just a .001% phenomenon happening mostly to the middle class to 1%? And how does it compare to the middle class and below, for whom getting into a doctor, let alone shopping around the country to specialists has never been an option?”
I too would love to see more data on this but we’re not going to be getting this if we’re bundling all child abuse cases together and the investigations are so drawn out and based on recollections of personal encounters that happen at times of enormous stress.
There are some great comments (186 already) eg. this one from a Doctor who makes a great point about the need to accept some uncertainty:
”I agree that physicians make mistakes. We are not omniscient. In my career as a physician I have found that the majority of doctors are good people and likely not getting rich in this industry. If a patient or family has the suspicion that money is the motivation for care, you should find another physician. That being said, I would be VERY cautious about the industry of over-diagnosis. There are some docs who make a whole lot of money making sure a patient has a diagnosis. As a patient, and consumer, be very careful about doctors who accept only cash per appointment. Be very careful about doctors who may not have a stellar reputation (this may be difficult, but honest physicians in your community ought to be able to assist you). Be very careful about doctors who make the frequent ‘mitochondrial disease’ diagnosis…there is a possibility they are not correct either”
Another comment reminds us of why the history of how aviation safety evolved should be taught in every medical school:
“Doctors are humans, they make mistakes, some of them are biased or driven by ideology or profit. Ideally, we should have a systems where those problems are corrected and fixed before they have consequences. But we don’t have such a system. Instead, we have defensive medicine and sometimes antagonistic medicine, where patients are put against doctors and vice versa. We need a complete overhaul of our system. But I think it should start with the doctors themselves questioning and looking for solutions”
Some great thoughts on the need for Doctors to be trained on the opportunity to use the tools of our time with their Patients:
“Just one slightly tangential comment: Doctors need to come to terms with the internet and the unalterable fact that today’s medical consumers do, and most certainly should, avail themselves of the medical resources there. There seems to be something of a consensus that any independent research by patients is an annoying, ill-advised usurpation of the physician’s role. We can all understand that self-misdiagnoses can be problematic, but we also all know from personal experience that we catch important things that doctors don’t, get good advice from reputable medical sites, and are unlikely to risk the entirety of our input to an overburdened, highly fallible and distracted doctor (or NP) who has all of 15 minutes to hear our concerns. We have lots of time to attend to our own predicament and a lot of information that physicians have neither the time nor inclination to gather from us. Informed consumers should not be intimidated by arrogant doctors, whose track record is unfortunately not particularly impressive. Physicians should respect and work in harmony with intelligently informed patients”
Katherine Owsiany reminds us how urgently we need to update medical teaching so that Patients feel comfortable sharing with their Doctors information that is influencing the decisions they are making:
“(Katherine Owsiany, Charlottesville, VA July 12, 2015) When I got to medical school, I was really surprised by the way the medical community viewed parents who disagree with doctors. Too many physicians are still indignant when dealing with families that disagree or don’t “comply.” Like many schools across the country, we go over this issue in ethics sessions and read the book “The Spirit Catches You and You Fall Down,” which addresses this theme. However, there is a definite population of not only doctors, but people in the health care community in general, that still hold erroneous beliefs about the ability of the non-medical community to make decisions about their own lives. It is true that doctors are obligated to report suspected child abuse, but too many people take that as an obligation to suspect abuse even when evidence is tenuous at best. More physicians need to recognize that it is part of the job to communicate effectively with patients’ families before going to the authorities and that it is in the best interest of everybody to seek second opinions on complex patients. The doctor’s role is to serve the patient, not control the patient. This article is important for doctors to read and remember the patient’s perspective”
Lorrie Beauchamp reminds me how much I hope we see algorithms replace lawyers before they try to substitute for Doctors:
“(Lorrie Beauchamp Montreal, Canada July 12, 2015) As a former medical writer who is familiar with the staggering amount of medical knowledge that the average doctor needs to learn and KEEP learning, I can attest to the fact that many physicians become overly defensive when they can’t find a diagnosis. Egos are alive and well in this chosen profession. Unfortunately, it’s also the ego that rules in the legal system, and I can’t help but wonder how much of this is the result of aggressive lawyers eager to either set a precedent or leverage a trending one. Doctors don’t know everything, lawyers want to win, and parents with sick children should not have to deal with this…”
What thoughts did the article/comments leave you with?