by Stuart C. Pickell, MD, FACP, FAAP
As a result of early twentieth century atrocities, respect for the individual’s autonomy correctly became a foundational principle of medical ethics. But has our desire to honor patient autonomy resulted in the subjugation of other foundational principles and competing values?
From our founding as a nation we have valued personal liberty and freedom. While we have been inconsistent in our implementation of these values – civil rights come readily to mind – they remain at the core of what it means to be an American.
Ethical codes encompass more than American values and ideals, of course. Western nations united around the barbarity of unethical experiments conducted by Nazi Germany before and during World War II. Determining that this should never happen again, the international community reached a consensus resulting in landmark ethical codes, declarations and reports. These included:
- The Nuremberg Code – 1947 – in response to Nazi experimentation on Jews;
- The Declaration of Helsinki – 1964 – written for the World Medical Association regarding research on humans;
- The Belmont Report – 1979 – drafted, in part, in response to the Tuskegee Syphilis experiments.
All three of these initiatives focused on the individual’s right to decide what can and cannot be done to their bodies. The Belmont Report, drafted by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, a committee that included Tom Beauchamp (yes, that Beauchamp), codified this as the “respect for persons.” Beauchamp and James Childress further developed this concept in their seminal tome, Principles of Biomedical Ethics (Beauchamp & Childress, 1979). Referring to it as “respect for autonomy” it was the first of three ethical principles or “pillars” along with “beneficence” and “justice.”
Today we live in an era of shared decision making, a byproduct of the patient autonomy movement. We are rightfully expected to explain risks and benefits and to obtain informed consent regarding recommended courses of action – all to make certain that the patient’s autonomy is respected. The generation of “doctor knows best” is no more as physicians have become the resident experts who provide information regarding diagnoses and treatment options without prejudice, allowing patients to decide for themselves what they want to do. This movement has and should be celebrated. But what if what the patient wants to do runs up against competing community interests, values, and ethical principles?
This is not a hypothetical question. Tarrant County is the epicenter of the tension between patient autonomy and the common good. A national survey of kindergartners recently revealed that Tarrant County has one of the highest rates of kindergartners with non-medical exemptions for vaccinations. (Olive and Hotez 2018) Now we are seeing the downstream effects of this behavior in the form of preventable diseases like measles, a development that places the greater community in danger. At some point we must ask where the line between the patient’s autonomy and the public good must be drawn.
This issue has broad public implication. Case in point. On December 16th, the U.S. Supreme Court refused to hear an appeal of a 2018 decision made by the 9th U.S. Circuit Court of Appeals. The case in question centered on two Boise city ordinances that prohibit camping or “disorderly conduct” by people sleeping in public places. Those who violated the ordinances were given a nominal fine or briefly jailed. Six homeless residents sued the city in federal court in 2009, itself a testament to judicial efficiency, claiming that the practice violated their constitutional rights under the 8th amendment which prohibits “cruel and unusual punishment.” (Chung 2019). The 9th Circuit sided with the plaintiffs.
This case, like most, is nuanced. The ordinances are predicated on there being temporary shelter options for the homeless. Two Boise shelters have policies to never turn away anyone for lack of space, so the city ordinances had been continually enforced. However, these shelters, run by Christian organizations that have mandatory religious programming and enforce limits on the number of days a person can stay, raised the question as to whether or not the homeless truly have viable options. This factored heavily in the 9th Circuit’s decision. Still, does this decision not undercut a municipality’s ability to maintain public health and safety? Again, where do we draw the line?
The adage “Your right to swing your fist ends where my nose begins” – which originated in the nineteenth century temperance movement – is often cited in arguments regarding personal freedom and the exercise of one’s liberty. Prohibitionists, seeking to restrict the sale and consumption of alcohol, which they considered to be a public nuisance and societal ill, sought to impose their will on the larger community. That particular issue has long been settled, but the underlying sentiment continues to raise its head as we consider the ways in which the exercise of perceived individual rights and autonomy have crept into the national dialog. For instance:
- In an era of limited resources and escalating costs, how do we manage the expectations of patients who want “everything done” when the interventions they seek will not improve their outcome, may be harmful and divert resources from places where they might be better utilized.
- Are physicians obligated to provide services even if they consider them to be unethical or fiscally irresponsible?
- How do we address those in our community who opt out of public health initiatives, like vaccination, when their failure to participate puts others in the community at risk?
- How should the community manage the health consequences emanating from patients exercising their rights to engage in at-risk behaviors? Should government impose public smoking bans? Should patients who engage in high-risk behaviors that result in chronic illness or injuries that utilize limited resources be managed differently within the system? If so, how?
- How should we address hot-button political topics like gun control and firearm safety, especially in the current political climate?
- Should a discussion of the public good become part of all ethics consultations?
Recognizing the importance of our respect for patient autonomy while also honoring our commitment to the public good, the Tarrant County Academy of Medicine’s Ethics Consortium will devote its annual symposium,
Healthcare in a Civil Society, to this topic. The program, which will be February 1st (see related information on page 18), will feature healthcare leaders representing public health, the law, clinical ethics, and public policy. While we don’t expect to solve all of the problems, we do plan to take some first steps toward finding local solutions to this important healthcare issues. You are welcome and encouraged to join us for this engaging CME event.