Futile Care: The Problem of Someone Else Deciding If You Should Live or Die
Would you trust a stranger with determining the value of your loved one’s life? There is an uncomfortable gray area when it comes to determining the futility of someone’s medical treatment in America. Every decision is subjective somehow, so it might be risky to have too many laws that interfere with your decision-making.
But while the vagueness of these laws is thus necessary to some extent, we should also consider the potential abuses this ambiguity renders possible. Seeing as the doctors and committees claim authority over this process, there should be many important questions we could ask about their decision-making.
When your life is deemed no longer worth living, you have no power to contest that judgment. Not everyone agrees on what makes a worthy life, so this can lead to terrible situations in which the patient is left out of the conversation in favor of an expert or committee which has a competing interest in efficient resource allocation.
There are, after all, only so many resources to go around, which means doctors often end up making decisions which are more economical than ethical. And while the merit of this sort of utilitarian ethics may seem arguable, what really makes this such a cause for concern is that none of it is up for debate.
Beyond the actual feeling of helplessness and distress we might imagine a patient experiencing under the described policies, there are also several indirect consequences that weaken the healthcare system itself. The lack of communication and respect for the wishes of individual patients is, no doubt, partly to blame for healthcare’s decline in public image.
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When people see all these gray areas and competing interests, there is a great deal of skepticism in the public attitude toward the determination of medical futility. “Given insurance and other economic pressures, participants believed it was difficult for healthcare providers to make decisions that were purely based on patients’ best interests… The overarching belief was that families (and patients, if possible) should be the ultimate decision-makers in situations in which there was conflict between a family’s wishes and the clinical team’s recommendations.” (Neville 2020)
A medical expert might argue “You just don’t know how to make this decision. I am trained in this subject matter, so I should be given full authority”. Although this may be acceptable in general, decisions directly involving your own survival are very different, and naturally demand a far greater degree of autonomy. Nobody would argue the patient has more medical expertise (even if sometimes they do), but it seems reasonable to ask that their ethical concerns be taken into account for such an important and personal decision.
We shouldn’t be quick to assume that the ambiguity in the determination of lives worth living Is something that doctors are happy about either. The process of deciding whether or not to end a life is a very challenging one, not only professionally but obviously emotionally as well. There are countless studies demonstrating the emotional distress and ethical complexities physicians have to navigate in futile care situations. (Rostami 2016).
Nobody wants that sort of weight on their shoulders, much less a person who has probably developed some sort of personal connection with their patient throughout the course of their treatment. Medical experts don’t even have a clear moral consensus to fall back on, so they end up stuck with being personally responsible for the decision, no matter how loudly the actual patient is begging to be heard.
Another negative outcome of this sort of subjectivity is that the process is necessarily made more discriminatory. Since humans aren’t quite perfect, whatever discrimination or selection takes place is unavoidably riddled with personal biases to some degree, and studies have consistently shown that doctors are far less open-minded or optimistic in determining medical futility than patients and “laypeople” in general (Kadooka 2012).
Beyond abstract conceptions of what makes a life worth living, a patient also has reason to worry about falling victim to some kind of prejudice. What if the person deciding whether you should be allowed to live has a problem with your religion, or race, or even your political orientation? You could keep coming up with such questions, and you might start sounding paranoid before long, but think about how you yourself would react amidst all this uncertainty, given the gravity of the situation. If you’re forced to defer to someone else’s authority, you better hope they’re competent, and you also better hope they don’t come with any prejudices or unfamiliar attitudes toward life.
Additionally, the marginalized and underprivileged, who, as the name suggests, have little in the way of advocacy and resources, end up facing even greater difficulty accessing care (NCD 2019). The ability for doctors to discriminate between lives worth living is often defended because of the fairness and equality it supposedly promotes. but when you hear about all of these other things that factor in, you might start to consider the possibility that these rules are first and foremost a way to cut costs.
Medical experts generally express either one of two viewpoints. One group argues for the physician’s exclusive right to make the decision, and the other group is more concerned with ethical questions about autonomy (Bagheri 2016), Of course the difference in public opinion is multifaceted as well. Some people even consider the nuance in concepts such as “life worth living” ridiculous in the first place.
There are lots of people for whom life itself is valuable enough, and many who, after only just escaping death, would be happy with whatever amount of life they can get. It’s also worth asking how many doctors would humor a more optimistic attitude if it was their own life on the line. It is a bit absurd to think that even the most accomplished medical professional would have any meaningful insight into what a life worth living might be for someone else.
Although the state of the futile care system may sound concerning, you should know there are things you can do to lower the chance of these situations going badly for you. Becoming informed on medical ethics and advance care planning will help you make more informed decisions and strongly assert your rights as a patient.
If someday you end up encountering problems in futile care, there are also patient advocacy groups that offer advice on how best to handle your situation. And it’s important to express your wishes regularly and clearly to your healthcare providers, because many of them do try very hard to respect the values of their patients. The gathering trend is moving toward increasing patient autonomy, so we can at least expect that better laws and guidelines are on the way.
Special thanks to Alex Aboud, Terri Schiavo Life & Hope Network’s research intern, for his work on this article.
Works Cited
- Neville TH, Tarn DM, Pavlish CL, Wenger NS. The Community Perspective on Potentially Inappropriate Treatment. Ann Am Thorac Soc. 2020 Jul;17(7):854-859. doi: 10.1513/AnnalsATS.201912-890OC. PMID: 32348687; PMCID: PMC7328181.
- Rostami S, Jafari H. NURSES’ PERCEPTIONS OF FUTILE MEDICAL CARE. Mater Sociomed. 2016 Apr;28(2):151-5. doi: 10.5455/msm.2016.28.151-155. Epub 2016 Mar 25. PMID: 27147925; PMCID: PMC4851516.
- Medical futility and disability bias: Part of the bioethics and … (n.d.). https://ncd.gov/sites/default/files/NCD_Medical_Futility_Report_508.pdf
- Bagheri, A. (2016). Futility. In: ten Have, H. (eds) Encyclopedia of Global Bioethics. Springer, Cham. https://doi.org/10.1007/978-3-319-09483-0_204
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