Caring for those in Need

Life-Ending Decisions

In recent years, there have been a number of infants and children who have been denied organ transplantation based solely on intellectual disability.

BY Matthew Holder, MD, MBA | June 2020 | Category: Summer Fun

Life-Ending Decisions

Everyone knows that physicians take the Hippocratic oath upon graduation from medical school.  Paraphrasing the part of the oath that everybody remembers, the prime directive of being a physician is to “do no harm.” But, there are different ways that physicians harm their patients every single day.

Most of the time, it is unintentional – the post-op infection or the unanticipated adverse drug reaction – and we, both within society and within the medical profession, have a fair amount of tolerance for harm that occurs unintentionally.  The logic goes that the physician could not have known that a bad outcome would occur and, moreover, that the physician was acting with the best, life-improving intentions – so all is forgiven.

But what happens when the intention of the physician is not life-improving, but intentionally life-ending? It is hard to imagine that “do no harm” can lead a physician to making a decision that will hasten the death of somebody. After all, isn’t death the ultimate harm? Perhaps that is up for debate. But certainly, death is an outcome that we would surely like to avoid.

In general, life-ending decisions are a last resort, they come when the physician essentially gives up and says to themselves and to the patient “there is nothing more we can do”. Such is often the case with terminal cancer. Once certain types of cancer progress to a certain point, the physician knows that there are no other options, so he will refer the patient to hospice care, where they will likely be given comfort measures (e.g. pain medications), but they will often withhold other medications and sometimes food or liquids so as not to prolong the suffering of a natural death.

We accept the physician hastening death in this scenario, because we accept the fact that the physician “knows” that death is imminent. But, what if there was a cure for this terminal condition and the physician just didn’t know that it existed? Would we accept it then? What if, but not for their own ignorance, the physician could have known that the patient was not actually terminally ill at all?

In the field of Developmental Medicine, we have unfortunately seen this happen far too often. I am reminded of the case of a 30-something year-old, non-verbal gentlemen with severe cerebral palsy and intellectual disability. After two months of deteriorating mental status changes, decreased appetite and weight loss, the doctors referred him to hospice with the diagnosis of “terminal cerebral palsy.” As a technical side note, there is no such thing as “terminal cerebral palsy” in an adult.

As it turned out, the patient had an untreated urinary tract infection that was causing the observed changes.  Due to the doctor’s inexperience with patients with intellectual and developmental disabilities (IDD), the doctor had just assumed that, because of the severity of the patient’s disabilities, it must just be “his time to go” and, he gave up. What saved the patient in this case was insistence from the concerned caregivers that the medical team consult a doctor who knew something about developmental disabilities. The consulting doctor insisted that the UTI be treated. Within a few days, the patient got better and suddenly was no longer classified as terminal. The extra knowledge and experience that the consulting physician had, meant the difference between life and death in this case.

The problem, however, is that across the United States there are very few doctors who know about developmental disabilities – and this likely isn’t going to change anytime soon. Recently, the National Council on Disability corresponded with the Liaison Committee on Medical Education (LCME). The LCME essentially sets the standards for medical education in US allopathic medical schools.  Despite the mountain of evidence that lack of physician training in this area produces bad outcomes, the LCME refused to specifically address the issues of the IDD population in medical education, because they believe that their long-standing requirements around “disability” are enough.  Though, if just focusing on “disability” were enough, of course, the National Council on Disability would not have asked them to address the IDD population specifically.

Imagine for a moment that we routinely allowed doctors to graduate from medical school being incompetent in the basics of diabetes management. This would be preposterous, if not from a quality of life standpoint, just from a sheer investment standpoint. Medicaid spends tens of billions of dollars per year in diabetes-related costs. Imagine how bad the patient outcomes would be and how much more money we would spend on diabetes if the doctors who were treating it didn’t know anything about it!

But, this is exactly what we do with IDD. Medicaid spends more on the care of people of with IDD than it does on the care of people with diabetes. Yet, our medical schools continue to graduate doctors who know nothing about the IDD patient population. And the results are inefficient care laced with covert bias, discrimination, and inequity.

This discrimination and bias were recently put on full display, thanks to the Coronavirus pandemic. During the pandemic, society was faced with the question “what happens if we run out of ventilators?” What we found out was that many states had ventilator rationing plans that specifically excluded people with IDD. Even in the states that didn’t have those plans, it was often suggested that doctors employ the SOFA scoring criteria for determining who would get a ventilator. On the surface, this seemed reasonably objective. However, part of the SOFA score includes parameters that will inherently discriminate against people with mobility, hearing, communication, and social impairments. In fact, it discriminated so much that in some cases, a person with IDD who had a better than 67% chance of survival would be ranked to get a rationed ventilator behind a person without IDD who had less than a 5% chance of survival. Thankfully, we were not faced with ventilator rationing during the first wave of the pandemic, but this issue again illustrates the danger behind allowing uninformed medical personnel to make life-ending decisions for people with IDD.

 A few years ago, there was a case involving an organ transplant at a very well-known children’s hospital. The patient was, at the time, three years old. She had a rare syndrome that, among other things, resulted in intellectual disability and kidney failure.  She needed a kidney transplant. The child’s mother was a donor match. But the doctors at the hospital refused to do the surgery.  Why? Because their organ transplant guidelines stated that people with IDD should not be the recipient of donor organs. They further argued that the three-year-old child lacked the intellectual capacity to keep up with the complex post-op medication regimens (as if any three-year old child could do so). The doctors were making a life-ending decision for their patient, and they were doing so out of their own bias and ignorance. The mother, however, fought back. She, along with the help of physician advocates, got the medical establishment to pay attention, and the children’s hospital reversed its decision. The patient and the mother survived and thrived.  But, other children have not been so lucky.

In recent years, there have been a number of infants and children who have been denied organ transplantation based solely on intellectual disability – even when the severity of the disability was unproven, just the specter of disability was enough to cause major medical centers (supported by their so-called “bioethics committee”) to deny the possibility of organ transplantation.

This is why we are so heartened to see this recent article —"Children with Intellectual and Developmental Disabilities as Organ Transplantation Recipients”— published by the American Academy of Pediatrics (AAP). The authors, some of whom are expert in working with patients with IDD, helped craft an organ transplant policy that makes sense. EP Magazine (Exceptional Parent), AADMD, Special Olympics, the Center for Dignity in Healthcare for People with Disabilities, and many others, have been involved in bringing attention to organ transplant issue for almost a decade. We applaud the efforts of the authors to establish the precept that people with IDD should not be denied consideration for organ transplantation simply because they have a disability and that, furthermore, doctors who are expert in the care of people with IDD should be consulted in situations that could result in a life-ending decision being rendered.

About the author:

Matthew Holder, MD is recognized as an international leader in the care of individuals with Intellectual and Developmental Disabilities (IDD). Dr. Holder began working on what would result in Developmental Medicine becoming a recognized medical expertise soon after starting his career. In 2002, he took over the American Academy of Developmental Medicine and Dentistry (AADMD).  Since then the AADMD has set the curriculum and standards that guide medical students, residents and fellowship-level physicians to better treat and understand patients with IDD.  Medical schools and residency programs around the world have implemented curriculum changes based on the work done by Dr. Holder and the AADMD. In 2005 Dr. Holder became Global Medical Advisor for the Special Olympics. Dr. Holder has trained thousands of healthcare providers in addressing the health needs of athletes with IDD.

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