Illustrative image for Deciding When Enough is Enough in Providing Life Sustaining Treatment for a Child

Bioethics Forum Essay

Deciding When Enough is Enough in Providing Life-Sustaining Treatment for a Child

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 treatment that it deems 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 authority to make decisions about life-sustaining treatment for infants and young children based on the perceived best interests of the infants and children. In Texas, 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.    

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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  1. I’m always surprised when I read of cases like this, that deal with choosing about end-of-life without any assessment of pain and stress in the non verbal patient. There is a way of giving voice to those who have no voice and it is by measuring their stress and pain. Nowadays, we have several reliable tools to do this: assessing the variability of heart rate, for instance, or measuring palm skin conductivity, both indicators of stress (namely indicators of the activation of the sympathetic nervous system); we also can measure the increase of stress hormones in babies’ blood or saliva. Last, we can identify the activation of the brain areas devoted to pain processing, by EEG or MRI. This said, se also have good multifactorial pain scales to be used in these cases.
    Thus, we have reliable tools to be offered to parents and doctors to be aware of the actual state of suffering or not-suffering of the baby. Using these tools in the end-of-life decisions is what I called “pain principle” (see ) opposite to the simplistic “best interest principle” so widespread and so generic and subjective. The best interest principle has been used by both parents and doctors with diametrally opposite aims in several cases (see Charlie Gard or Alfie Evans). The pain principle says that we can call obstinacy only in two cases: first, when therapies are useless; second when therapies can permit survival, but with an evident state of suffering. Suffering can be measured and if present, therapies should be reduced. If no suffering is present and therapies are effective and not extraordinary (a surgery or a transfusion or a further intubation can be considered estraordinary), there is no indication to withhold them.
    I dare hope that in the future more importance wsould be given to the assessment of pain in children, and in particular to those who cannot speak and use a simple VAS to assess pain. Pain assessment in end-of-life choices is still an unexplored field, but it is mandatory to give babies a chance to express their “wishes”, by measuring their stress.

  2. So long as medical treatment is substantially paid for by the public and provided at public expense, I understood the Ethics Guidelines to include decisive public input via the treatment providers; and this appropriately to be part of judicial determination . Futile treatment still may be available at private expense.

    The distinction between “medical treatment” and “medical care” is critical. Care always must be provided.

  3. A serious problem in the discussion about this case has to do with the lack of information about what “incredible efforts” have actaully been undertaken to help the family understand the situation. What, if any, has been the role of palliative care clinicians? And, in the end, invocation of the notion of “best interests” does not do much work, as parents and clinical staff may have substantially different approaches to that ill-defined concept. Exercises of raw power, whether or not mediated by the state (child protective agencies, the courts) rarely provide clinically satisfying resolution. Appeals to economics add little, as the true cost of such care for a particular patient–even when prolonged–is vanishingly small in the context of wasteful medical spending in the United States.

  4. I think there are a few things missing from this picture to allow us to fully understand the decision of Tinslee’s parents. What are the parents goals and values? Are they a family who values number of days on earth no matter what those days look like? Is Tinslee suffering? Continuing with life sustaining interventions feels less wrong if the child isn’t suffering. However, if suffering is noted, it can be a product of providers continuing to offer further interventions that allows parents to continue pushing for more as they have seen in the past that interventions were helpful, even if they caused suffering. Hope is an impossible thing to measure, and one that plays such a huge factor in many parents decision making for their children.

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