With increasing focus in the last decade on post–cardiac arrest care in pediatrics, return of spontaneous circulation, survival rates, and neurologic outcome have improved. As part of this postarrest care, both the American Heart Association and the American Academy of Neurology state it is reasonable to consider targeted temperature management in pediatric comatose patients, although this care is challenging and time sensitive, with many gaps in knowledge remaining. Many pediatric patients will still not survive or will suffer severe neurocognitive impairment despite the therapeutic arsenal provided. Adult guidelines suggest providing postarrest supportive care and limiting prognosis discussions with families until after 72 hours of therapy, but pediatric clinicians are advised to consider a multitude of factors given the lack of data. What, then, should clinicians do if family members of a patient who has been resuscitated request the withdrawal of all life support in the 24 hours immediately postarrest? In this Ethics Rounds, we present such a case and the responses of different clinicians and bioethicists.

Both the American Heart Association (AHA) and the American Academy of Neurology recommend therapeutic hypothermia for 24 to 72 hours after a cardiac arrest.1,2  With the increasing focus in the last decade on post–cardiac arrest care in pediatrics, return of spontaneous circulation, survival rates, and neurologic outcome have all improved. However, success with therapy is not guaranteed, with overall survival rates at ∼40%, and the possibility of many patients who undergo hypothermia will die or survive with severe neurocognitive impairment. However, the possibility of a good neurologic outcome remains.3  Adult guidelines suggest providing postarrest care and limiting prognosis discussions with families until after 72 hours of therapy.4  No such guidelines exist in pediatrics given the lack of data. Practitioners are instructed to consider a multitude of factors when discussing prognosis with families. What, then, should clinicians do if family members of a patient who has been resuscitated request the withdrawal of all life support before 24 hours have passed? In this Ethics Rounds, we present such a case and the responses of different clinicians and bioethicists.

A 10-month-old infant is admitted to the PICU with respiratory syncytial virus bronchiolitis. Past medical history is significant for trisomy 21 and complete atrioventricular canal defect status post repair. The repair was complicated by complete heart block necessitating a pacemaker as well as persistent pulmonary hypertension requiring diuretics and sildenafil. On admission to the PICU, the patient’s right ventricular pressures were near systemic. The patient quickly escalated to respiratory failure requiring emergent intubation. Over time, the patient became unstable with prolonged oxygen desaturations, hypotension that required the use of multiple pressors, and renal failure. The patient became bradycardic and progressed to cardiac arrest. Cardiopulmonary resuscitation was performed for 75 minutes. The patient was sedated, paralyzed, and cannulated onto venoarterial extracorporeal membrane oxygenation (ECMO). Targeted temperature management (TTM) was initiated. Long-term monitoring EEG was placed. The patient continued to be anuric and hypotensive on ECMO. The family declined hemodialysis or continuous renal replacement therapy. With the understanding that the patient would most likely not survive, the parents requested no further medical interventions. Redirection of care was not offered at that time. The following morning, the sedation and paralytic were stopped. The patient’s pupils were not responsive to light and there was no response to painful stimuli. The long-term monitoring EEG revealed no brain activity. A team meeting was held. There were differing opinions among the physicians regarding overall prognosis and whether the focus of therapy should be toward palliative care. Some physicians held the position that transitioning to palliative care should not be offered <24 hours into TTM given the unreliability of the clinical examination, unknown role in predicting pediatric prognosis, and the remaining possibility of benefit of therapy. In particular, it was possible his examination was confounded by his renal failure leading to lack of clearance of sedating and paralyzing medications. Other providers argued that the patient’s overall clinical state indicated a poor neurologic prognosis or even signs of brain death and that palliative care was appropriate.

The family was clear on their goals of care and requested that life support be withdrawn and the patient allowed to die.

In the case of a child who is successfully resuscitated after a cardiac arrest, the prognosis is uncertain. Prognosticating factors such as in- or out-of-hospital arrest, duration of cardiopulmonary resuscitation, hypotension after resuscitation, use of ECMO, pupillary responses, EEG activity, and TTM aid in guiding a treatment decision.1,514  No single factor determines the prognosis. Current guidelines are intentionally vague given the lack of evidence. The law does not appear particularly relevant in cases such as this given the ambiguity of the clinical situation, although one may refer to guidance on the withdrawal of life-sustaining treatment. We asked experts in neurocritical care and historical legal challenges to comment on this case.

Parents and legal guardians have the right to make medical decisions for their children under the legal and ethical assumption that they are the persons best suited and most inclined to act in the best interests of their children.15  In counterbalance, physicians have a professional and ethical duty to provide expertise and knowledge that can inform those decisions. Physicians also have a duty to practice within professionally defined standards of medical care.16 

Differences in opinion about the management of this case appear to have arisen from 3 issues closely related to the rights of parents to make medical decisions but do not challenge these rights per se. The first is consideration of when is it appropriate to offer redirection of care after a cardiac arrest. The second is a difference in opinion over what is considered standard practice. The third concerns meeting the requirements of adequate informed consent.

Physicians’ ability to predict who will survive with a “good” or “poor” neurologic outcome immediately after a cardiac arrest is deficient. Rich literature on neurologic prognostication after cardiac arrest has revealed that neither brainstem examination, EEG findings, nor other neurologic tests are reliable predictors of outcome within the first 72 hours after a cardiac arrest. Up to 20% of long-term survivors may have delayed awakening from coma.17,18  Recognizing the limitations of early examinations, professional practice parameters recommend delaying prognostication beyond 72 hours and longer when a patient is hypothermic because low temperature may depress neurologic function.19  Similar recommendations to delay clinical brain-death testing in cooled patients may be forthcoming.20  Assigning a poor prognosis may problematically affect the care a patient receives or lead to early redirection of care.21  Despite guidelines recommending against early redirection of care, it may be offered and have a significant impact on mortality. In one study, more than half of the patients were given a poor prognosis while being cooled or shortly after rewarming while receiving sedatives or paralytics.22  "Early" redirection of care may lead to the deaths of patients who might have survived without severe neurologic damage.23  These considerations justify a pause after resuscitation from cardiac arrest before offering redirection of care. Such a conversation should include the best available information about prognosis that, at a minimum, should not mislead or confuse parents about our degree of certainty.

The ideal of ethical medical decision-making is shared decision-making, that is, through dialogue, the physician and patient arrive at mutual understanding and agreement. However, in everyday ICU practice, the medical team may unilaterally make routine decisions intended to optimize medical care. These might include, for example, blood draws, fluid adjustments, and correction of electrolytes. Knowledge and experience are required to make these assessments and adjustments. Professionals have an ethical responsibility for these decisions. Asking parents to make them would be an abrogation of professional responsibility and duty. As Drolet and White24  state, “Medicine is a practice, not a mere formulary of facts; the expertise of the physician developed through years of education, apprenticeship, and experience cannot be fully imparted to the patient, hence, knowledge-based value judgments are essential to good medical care, and the physician must not be a passive participant.”

The AHA and the International Liaison Committee on Resuscitation guidelines state that TTM should be initiated immediately after a cardiac arrest, target a temperature between 32°C and 36°C, and be continued for a minimum of 24 hours.4  In the face of an unknown neurologic prognosis, it is the physician’s responsibility to continue to optimize the best chances for the best outcome and provide the best-known care. Because TTM is a standard therapy, involves minimal risk, and does not represent a change in treatment course, consent for this therapy would not be routinely sought nor would it be appropriate to do so.

Parents have the right to make medical decisions that are in the best interest of their child. Physicians have the duty to ensure that parents have the knowledge needed to make those decisions. In the case presented, the parents saw their child on ECMO and reportedly said, “I know that my child has died.” This statement might have reflected the parents’ beliefs rather than their grasp of the medical facts. This created a dilemma for the medical team. To enable the parents to make an informed decision, they needed to be sure that the parents understood their child’s complex condition.

The physicians in such a case have a duty to convey knowledge to parents that is clear and accurate. The duty to ensure the transfer of medical knowledge and insight is made more solemn in circumstances in which decisions based on these are both consequential and enduring. In this case, the child was being treated with interventions that ultimately the parents might not choose to continue. But such therapies must be explained as fully and clearly as possible. Patients on ECMO are not medically or legally dead and it was not known, at the time of the parents’ request, whether the child would survive off ECMO. Although the parents’ beliefs and values directed their decision to choose the care they wanted for their child, the physicians also had the duty to ensure that the parents could make those decisions on the basis of sound understanding of their child’s actual condition. Only then should their beliefs and values be considered determinative. In this case, it was not clear that they had that understanding.

In a situation such as this case, clinicians should not override parental choices about medical goals for their child. As the guidelines on intensive care for high-risk newborns note, when “the prognosis is uncertain but likely to be very poor and survival may be associated with a diminished quality of life for the child; in these cases, parental desires should determine the treatment approach.”25 

Before those guidelines, various state courts grappled with how to make medical choices for a patient incapable of making decisions. The New Jersey Supreme Court in In Re Quinlan adopted the position that the parents were best situated to evaluate and determine the now incompetent patient’s values and choices.26  The next year, Massachusetts courts decided that a 67-year-old man with profound neurocognitive impairment who developed leukemia did not need to be treated with chemotherapy.27 

In its extended analysis of previous legal cases, the Massachusetts Supreme Judicial Court determined that the recognition of the state’s interest in the preservation of life is not applicable in cases in which the disease “clearly indicates that life will soon, and inevitably, be extinguished.”27  With treatment, it was estimated that Mr Saikewicz had a 40% chance of remission lasting up to 1 year. In addition, the Supreme Judicial Court observed the rights of informed consent and privacy, which it ruled are applicable to every human being and are superior to institutional considerations.27 

The Florida Supreme Court in a 5-2 decision in In The Matter of Patricia Dubreuil adopted the view that “Patients do not lose their right to make decisions affecting their lives simply by entering a health care facility.”28  The Florida Supreme Court also ruled that a hospital does not have a right to challenge a patient’s decision to refuse medical treatment. Rather, in Florida, a hospital that has a conflict with a patient’s refusal of a proposed medical intervention must provide notice to the state attorney presiding in the circuit where the controversy arises. The decision as to whether to pursue legal action is discretionary on the part of the state attorney.

A final case in the line of legal ruling on parental objection to medical treatment of a child is that of the Delaware Supreme Court in its 1991 ruling in Newmark v Williams in which the court opined that “an extremely risky, toxic and dangerously life threatening medical treatment that offers less than a 40% chance for ‘success’”29  is not a sufficient basis for the state to override a parental refusal of medical treatment of a child with Burkitt’s lymphoma.

The Delaware Supreme Court noted in its opinion that the proposed treating physician “admitted that there was a real possibility that the chemotherapy would kill Colin [the patient in this case].”29  In footnote 12 of its opinion, the court emphasized that the treating physician testified there was no available medical data to conclude Colin would survive to adulthood. Rather, she stated that the term “survival” as applied to victims of leukemia or lymphoma refers only to the probability that the patient will live 2 years after chemotherapy without recurrence of cancer.29  Given the court’s findings of a relatively brief life expectancy and the use of an “extremely risky, toxic and dangerous life threatening medical treatment,”29  the Delaware Supreme Court reversed the ruling of a family court judge that had authorized the medical treatment over the parents’ objections.

It appears the guidelines on TTM, although recommended by the AHA and the American Academy of Neurology and supported by some members of the medical staff in this case, is a therapy that is likely to have limited efficacy for this patient. As such, following the American Academy of Pediatrics’ guidelines and legal standards regarding parents’ right to refuse life-sustaining treatment, the decision to use such therapy belongs not to the medical providers but to the parents.25 

The central issue here is whether any chance of survival is always in the best interest of the child.30  McCormick,31  in his classic essay, inquired, “Granted we can save the life, what kind of a life are we saving?” McCormick concluded that there was no moral obligation to continue life support for a patient experiencing unending suffering or permanent unconsciousness.31  Moore32  also cautioned against overtreatment in the face of overwhelming odds against neurocognitive recovery, noting, “There must be a rationale on which the desperately ill patient may be offered not merely pain, suffering and cost but also a true hope of prolonged [disease-free] survival. Under that imperative, a physician has an on-going responsibility to exercise independent judgment on the safety and efficacy of an experimental intervention.”32  Although TTM is not considered experimental, Moore’s32  advice seems pertinent to the postarrest scenario.

Some providers in this case believed that TTM offered direct benefit and the best hope for a good outcome and thus was ethically obligatory on the basis of the best interest standard. However, the efficacy and role of TTM in such a case remains highly uncertain. Given the limited trials in pediatric arrest to date, the method, amount, and duration of TTM remains unknown.1114  The expert consensus in the most recent AHA advanced life-support guidelines is to monitor postarrest temperature and treat any fever, and if patients are comatose, “it is reasonable” to consider different temperature targets.1  Should the medical team override parental input here?

In our opinion, given the clinical ambiguity in postarrest care, clinicians should not attempt to override parental input on the medical goals for their child. A number of AAP guidelines support our view. In one guideline, they write, “When caring for children whose prognoses are grave even with treatment, physicians should use restraint in pursuing a court order to initiate or continue treatment when parents object to it.”33  Another states, as noted by J.J.P. above, in cases “in which the prognosis is uncertain…parental desires should determine the treatment approach.”25  The child in this case seems to be in a condition and require a treatment that fits the scenarios that these guidelines anticipate. He is unlikely to survive, and if he survives, he is likely to have severe neurocognitive impairment. Given those facts, if the patents wish to pursue “comfort measures only,” even if that decision is contrary to the advice of some on the medical team, the parents’ decision should prevail. The decision to defer to the parents reflects both the low probability of survival and the parents’ personal values about what constitutes “a good life.”

The prevailing ethical standard in the United States is that in cases of prognostic ambiguity or uncertainty (sometimes referred to as “gray zone” cases), decisions belong not to the physicians or others but to the parents.34  This is clearly a gray zone case. The parents’ request is reasonable and should be honored.35 

After further discussion with the family and exploration of their understanding of their child’s medical issues, offering the limited data available to use on prognosis but with the presence of concerning findings that could indicate poor outcome here, the decision was made to focus on comfort care. ECMO was discontinued. The patient died peacefully in the parents’ arms.

Doctors have a duty and a responsibility to decide which cases belong in the ethical gray zone. To determine that a case falls in the gray zone, they must decide that outcomes are sufficiently ambiguous or uncertain as to make the withholding or withdrawing life-sustaining treatment an ethically defensible choice. In this case, there does not seem to be disagreement about whether this case falls in that gray zone. It clearly does. Instead, disagreement is about whether the parents truly understood their child’s condition. Their statement that their child had already died raises concerns about their understanding that survival was still possible. Such a statement ought to trigger further discussion to be sure that they understood that their child was not dead and, in fact, had a small but real chance of survival. They would also, of course, need to understand that, given the seriousness of the child’s condition, survival was unlikely. Having further discussions with parents was the ethically appropriate thing to do in addition to the subsequent decision to follow their wishes for comfort care.

Drs Gardner and Cummings conceptualized the article, drafted the initial manuscript, and reviewed and revised the entire manuscript; Dr Murphy provided her expert opinion in pediatric neurocritical care, aided in conceptualizing the article, and reviewed and revised the final manuscript; Mr Paris provided his expert opinion in historical and legal aspects in pediatric ethics, aided in conceptualizing the article, and critically reviewed and revised the final manuscript; Dr Lantos helped conceptualize the article and reviewed and revised drafts; and all authors approved the final manuscript as submitted.

FUNDING: No external funding.

     
  • AHA

    American Heart Association

  •  
  • ECMO

    extracorporeal membrane oxygenation

  •  
  • TTM

    targeted temperature management

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Competing Interests

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.