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.
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.