When medical futility decisions are made by healthcare providers, there’s a well-documented tendency to make choices that severely undervalue the lives of those with a disability (NCD 2019). While it’s not quite proof of malice, the prevalence of this issue clearly has something to do with the fact that most medical education doesn’t do anything to provide insight into what life is like for the disabled.
Most medical professionals are completely uninformed as to what a person living with disability can and cannot do, nor are they able to understand their day-to-day sense of well-being and level of enthusiasm for life. Most doctors (82%) believe the disabled experience a lesser quality of life, which is completely inaccurate according to what the patients themselves have reported. (Sohn 2021).
And it goes without saying that when it comes to determinations of medical futility, an understanding of these things is essential to reaching a decision which aims to serve the well-being of the patient.
With that in mind, the fact that medical experts are the ones making the decisions for patients doesn’t necessarily seem like a good thing anymore. It’s held that they have expertise the patient lacks, yet there’s an obvious lack of education on the condition they’re dealing with.
Some doctors are reluctant to treat those with disability for personal reasons, some believe the disabled don’t experience pain, and there are others who don’t even know they’re legally required to provide treatment. (NLM 2019).
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To be clear, it’s not simply as if those who manage to live with disability have somehow found a way to just put up with the pain. Instead, what happens all too often is that a patient would truly experience no significant diminishment in happiness or well-being from their condition, and the medical professionals fail to thoroughly consider the quality of life resulting from that disability.
Imagine a man who, perhaps out of dedication to his career or family, wishes to live on despite the suffering brought on him by his disability. Such a person would likely be fully aware that his decision is not in the interest of his “well-being”, though he nonetheless is motivated by some sort of intense clinging to life.
This is quite often what the healthcare provider assumes they are dealing with, leading them to feel like they’re doing the patient a favor when they assert a judgment contrary to their wishes.
In reality, cases like these are far less common than they seem to think. Most of them involve people who report living happily despite their condition.
The National Council on Disability has shown the broad perception of disability among doctors is that it implies a low quality of life for patients, even though most of these patients report high levels of happiness, “especially when they have access to sufficient healthcare services and support.”.
When they don’t have access, however, there’s almost nothing they can do to get it. Appeals made to dispute medical futility judgments in court are very rarely effective, largely because patients lack the finances and, of course, the time needed to see them through.
There are even 19 states which have protections for healthcare providers ensuring that they can deny treatment without being expected to abide by the patient’s wishes. Because they’re given so much discretion in making these decisions, healthcare providers often rush to judgments that don’t follow the established laws and medical guidelines.
Even the most extreme determinations such as the diagnosis of persistent vegetative state, or “brain death”, can be rushed without any regard for the standards set by the American Academy of Neurology.
There are numerous complex ways these medical futility decisions sidestep regulatory provisions in federal and state constitutions (generally related to improper communication and/or failure to consider alternatives), but the more obvious offense is that any determination of medical futility guided by subjective assumptions or biases about disability is a violation of federal disability rights laws.
It seems that the clearest way to immediately improve futile care and overall reduce the amount of grievances would be to hold off on the ethical debates until making sure these more basic procedures are carried out with due conscience.
Special thanks to Alex Aboud, Terri Schiavo Life & Hope Network’s research intern, for his work on this article.
Works Cited
- https://www.statnews.com/2021/02/01/large-majority-of-doctors-hold-misconceptions-about-people-with-disabilities-survey-finds/
- https://ncd.gov/newsroom/2019/NCD-study-medical-futility
- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8722582/
