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Posted on February 10, 2020 at 9:57 AM

Tinslee Lewis, a critically ill 1-year-old girl born with a rare heart defect and severe lung disease, has spent her entire life in the intensive care unit at Cook Children’s Hospital in Texas and undergone multiple surgeries in attempts to save her life. Tinslee’s care team has determined that she has no chance for any meaningful survival and that ongoing intensive care is harmful and causing her undue suffering. They recommend withdrawal of life-sustaining treatment, against the parent’s wishes. Following the Texas Advance Directives Act (TADA) the medical team stated its intention to withdraw care because it deems further care futile.  Tinslee’s fate is being debated in court. Meanwhile,  the child remains in the ICU, sedated, and on mechanical support.  

This tragic case has generated a lot of media attention, along with  battle language between the hospital medical team and the child’s parents. The distress on both sides of this “war” is real, and the child and her best interests continue to be scrutinized. Infants are too young to have formed and communicated their own values and preferences about medical treatment, but they are able to suffer and to experience pain and distress. Ethical and legal guidance, including  guidelines for treatment decision-making developed by The Hastings Center, establishes that parents or other guardians have the ultimate authority to make decisions as surrogates for children who are unable to participate or don’t have the developmental capacity in decision-making. In Texas, however, the TADA permits a medical team to override a parent’s decision to continue care for a child if the team considers the care to be futile.

Tinslee’s life has been filled with multiple surgeons, intensivists, cardiologists, nurses, and others.  Her parents and her medical team have thus been making shared decisions since she was born. To make these decisions, her parents have had to trust the medical team. The team has likely made incredible efforts to assure them that they are making good decisions in order to save their daughter. Decisions to perform open-heart surgery, feed Tinslee artificially, and try different therapies are all complicated. Each of these decisions has involved a combination of induced suffering (i.e. undergoing surgery) for the sake of a potentially better outcome. Reaching a decision to stop seeking or to discontinue life-sustaining therapies for a young child is wrought with intense emotional worries and parental protectiveness. Doctors, nurses, and other members of the patient’s care team should help parents understand and make decisions with their child’s best interest as a priority.  Believing and accepting that death is preferable to ongoing life requires parents to make the hardest decision of their lives.

In our culture of autonomy and parental authority over children, parents retain the right to make these decisions—even in extreme cases such as Tinslee’s. The legal system in Texas appears to be re-affirming that through the appeals process. Most states don’t have a legal framework for unilateral withdrawal of medical treatment by the medical team. TADA was likely enacted because medical treatment teams too often find themselves in situations where they decide that enough is enough, that medical advances have created an artificial prolongation of a fatal disease. The moral distress of the medical team needs to be affirmed as well.  Medical professionals caring for children justify interventions that induce suffering (even placing an IV line) because they believe it is worth it to help a child survive. Helping save the lives of children gives them meaning in their work.  When the prospect of survival becomes lost, asking them to continue providing painful care that they perceive to be futile  shakes their professional moral grounding and creates tremendous distress.  

Tinslee’s parents were led to their current dilemma by a system that went above and beyond to give their child every chance of survival.  It is already a miracle of modern medicine that she is still alive.  It is not surprising, after a life of so many interventions, and new hopes of the next surgery or the next medication or the next life sustaining offer, that the parents would not know when to say enough is enough.  It is heart-wrenching for the parents to cling to some shred of hope and the medical team to see no good outcome of ongoing care.  The parents and the medical team must learn to appreciate each other’s hopes and fears for Tinslee. Friends and relatives, as well as lawyers and the judge in the appeals case are each in a position to help facilitate this understanding. Tinslee’s life hangs in the balance.   

Scot T. Bateman, MD, is director of the Office of Ethics at UMass Memorial Medical Center in Worcester and a professor of pediatrics and anesthesiology at the University of Massachusetts Medical School.

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