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10 Day Rule – Letter to the Editor

By Stuart Pickell, MD, FACP, FAAP

This is a letter to the Editor at the Fort Worth Star-Telegram from the Tarrant County Ethics Consortium. Reprinted with permission.

We have monitored the scenario surrounding Tinslee Lewis at Cook Children’s for the last two months as it has moved the issue of the Texas Advance Directives Act (Texas ADA, 1999) in general and the 10-day rule in particular, back onto the front burner.  While we agree with the Fort Worth Star-Telegram’s assertion that the Texas ADA is imperfect, we do not agree that extending the 10-day period that hospitals have to find an alternative facility is the solution (“Don’t paint Cook Children’s as a villain in tragic Tinslee Lewis life support case,” January 04, 2020). 

As technology has advanced, so have the options available to treat critically ill patients.  Many people facing acute life-threatening events find aggressive medical intervention a life-saving bridge until their bodies can recover.  But there is a point past which no amount of medical intervention will help.  In fact, it may hurt. 

For the last 40 years healthcare facilities have increasingly relied upon ethics committees to aid them with the unenviable task of examining clinical situations in which medical technology contributes to a moral conundrum in which there are no good options.  The typical ethics committee consists of an interdisciplinary team of healthcare workers, often employees of the institution, and also community members who have no official relationship with the facility.  In the rare instance when a family insists on aggressive treatment that the medical team believes is non-beneficial or even harmful, either party may request a formal hearing before the ethics committee.  The committee’s objective is to hear the concerns of both the family and the medical team and discern the ethical thing to do for the patient.  If the committee decides to withdraw aggressive interventions that the family wants continued, the facility may invoke the Texas ADA. 

The Texas ADA leverages the expertise of healthcare and ethics professionals to promote a deliberative process at the bedside, carefully considering the family’s desires for treatment in light of the medical realities to discern the best treatment options available for the patient.  As medical professionals, we have an imperative to honor our patients’ treatment desires.  While we sympathize with the Lewis family, their desire to continue aggressive interventions does not give them – or anyone – the right to demand treatment that violates the norms of the medical profession, the caregivers’ moral integrity or the long-standing ethical precept of “do no harm.”  

Much of the criticism of the Texas ADA focuses on the section that allows a health care facility caring for a patient to discontinue life-sustaining treatment ten days after giving written notice.  During this time the treating facility and the family seek to identify another facility willing to assume care.  Opponents claim that ten days is not long enough to do this.  We disagree. 

A longer waiting period will not bring hope to a hopeless situation; it will only prolong suffering.

First, every case that gets to the point of invoking the Texas ADA has been thoroughly vetted by the medical team in consultation with the family.  When it becomes clear that an impasse is imminent the search for an alternative facility begins, usually weeks if not months before any formal hearing of the ethics committee.

Second, the law allows a judge to grant an extension if, given more time, there is a reasonable likelihood that another facility would be willing to accept the patient.  Finding a willing facility usually does not happen since a situation deemed futile by a medical team in Fort Worth would be considered no less futile anywhere else.  Even so, judges often grant extensions, especially in high profile cases.

Third, many families have not dealt with the gravity of their loved one’s condition, a reality they can no longer ignore once the 10-day rule is invoked.  Extending the 10-day period will not make their grief any less and will not increase the likelihood of finding a facility willing to assume the patient’s care.

We understand that the Texas Advance Directives Act is imperfect, but this law, including the 10-day rule, are better than what we had before when actively dying patients with no hope of recovery were subjected to indefinite pain and suffering because well-meaning loved ones were unwilling to let them go.  A longer waiting period will not bring hope to a hopeless situation; it will only prolong suffering.  So, while we strongly advocate for initiatives that will improve the health and wellbeing of Texans, we believe that extending the 10-day rule is not one of them.

The Tarrant County Academy of Medicine Ethics Consortium is a diverse, non-partisan group of people interested in health care and ethics in Tarrant County.  We are physicians, lawyers, educators, nurses, chaplains, administrators and other interested citizens who seek to improve the health and well-being of the diverse communities that make up North Texas by sharing the application of ethical principles to current healthcare issues through education, advocacy, and collaboration, and by encouraging civil conversation and dialogue.

Patient Autonomy and the Common Good

By Stuart 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.

“The generation of “doctor knows best” is no more as physicians have become the resident experts…. This movement has and should be celebrated.”

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, 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.