Although decision-making at the end of life most commonly rests with a child’s parents, there may be times when a parent requests therapies that are deemed inappropriate by the clinical team.
As truly futile treatment is difficult to define, deliberation over possibly inappropriate therapies should focus on intensive communication and negotiation, with hospital processes available for support and deliberation when this fails.
Rationing decisions should not be made for an individual patient when evaluating the appropriateness of a treatment at the end of life. Rather, policies on rationing should be made at the institutional level.
The majority of deaths that occur in the pediatric intensive care unit do so following a decision to withdraw or withhold life-sustaining treatments.
There is no legal or moral distinction between withdrawing and withholding treatment.
The doctrine of double effect supports the use of the titration of sedatives and analgesics to ensure comfort at the end of life.
Many of the ethical issues that emerge in the care of the critically ill child do so at the end of life. Although many controversies still exist and new ethical dilemmas continually surface when facing death in the pediatric intensive care unit (PICU), significant progress toward a degree of consensus has been made over the years. This chapter provides an overview of ethical concerns that arise at the end of life in the PICU, including decision-making near the end of life, the ethics of withdrawal and withholding of life-sustaining treatments, issues around death determination, and issues that arise after death has been declared. Much of the discussion of the delivery of end-of-life care can be found in the chapter on palliative care (see Chapter 19 ).
Decision-making at the end of life
There is little debate that decision-making authority for infants and children, particularly those in the PICU who are unable or too young to make decisions, rests with the parents. In light of the diversity of individual and family values and the complexity of the decisions being made, parents are justifiably provided wide discretion in these healthcare decisions for their children. However, there is similar consensus that physicians have an obligation to protect their patients in a way that may involve challenging the wishes of the parents on behalf of a child’s “best interests” when this rare situation arises.
More than 30 years ago, the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical Research produced the original guiding documents for most of these issues. In addition to addressing the determination of “best interests” when approaching treatment options, the commission also discussed an approach to decision-making with parents. It concluded that although decision-making authority should rest with the parents under most circumstances, there may be times when it is appropriate for the physician to act against the parents’ wishes, specifically when parents choose to forgo clearly beneficial treatment and when parents prefer to provide futile treatment ( Table 18.1 ).
|Physician’s Assessment of Treatment Options||Parents Prefer to Accept Treatment||Parents Prefer to Forgo Treatment|
|Clearly beneficial||Provide treatment||Provide treatment (during review process)|
|Ambiguous/uncertain||Provide treatment||Forgo treatment|
|Futile||Provide treatment||Forgo treatment|
Although most physicians agree, and ethics and the law support, the opinion that delivering treatment that is “futile” is inappropriate, the concept of futility has been so controversial that it is rarely an effective support for a physician in overriding a parent’s wishes. Regardless, most major societies—including the American Academy of Pediatrics (AAP), Society of Critical Care Medicine (SCCM), and American Medical Association (AMA)—do support the physician in withholding futile treatments from patients when it can be so determined. , , The problem still rests in determining when care is “futile.”
While much progress has arguably been made in our approach to cases of “futility” as practitioners in the intensive care unit (ICU), situations continue to arise in which parents wish to administer treatments and support that are deemed inappropriate and nonbeneficial by the providers. In these scenarios, how do practitioners balance the interests of the patient, family, society, and themselves? Is determining “futility” in these situations possible or even appropriate?
Burns and Truog addressed the concept of futility and these questions by describing historical and generational accounts of the notion of futility. In doing so, they suggest a practical approach to resolving questions of medical futility. The first generation describes attempts at defining futility in order to resolve disputes with family members. These have included attempts to quantitatively (e.g., treatment has been useless in the past 100 cases), qualitatively (e.g., “treatment that merely preserves permanent unconsciousness”), and physiologically (e.g., treatment unable to achieve its physiologic goal) define the concept. All of these definitional approaches have been largely unsuccessful in actually resolving questions of disputed therapies between families and care providers as a result of flaws inherent in the definitions, along with failure to reach consensus on the definition in the background of a pluralistic society.
Following recognition that attempts to define futility failed, the second generation described the subsequent period, which attempted to address disputed cases through procedures aimed at resolution. These have taken the form of individual hospital policies outlining processes to be followed in cases in which the appropriateness of a therapy was brought into question and attempts at consensus between the family and clinicians failed. In general, these policies aim to represent all parties involved and most often include an ethics consultation with possible courses of action if resolution of the dispute is not achieved by mere involvement of this third party. The possible actions include further attempts at resolution, transfer of care, or judicial involvement for the purpose of, or hospital endorsement of, unilateral action on behalf of the clinical team. Ultimately, the policies transfer the decision-making authority from the bedside clinicians and family to this third party. With these processes, the major concern that arises focuses on the neutrality of the committee on behalf of the disputed parties. A survey on attitudes and practices of pediatric critical care providers showed that despite most hospitals having these policies, providers do not make unilateral decisions to forgo treatment against the wishes of the family but rather provide the requested support until consensus is reached. While this reports practice rather than preference, another survey demonstrated that the majority of pediatric intensivists questioned are not in support of limiting therapies against the wishes of families, giving further support to the notion that even with policies in place, acting against the wishes of the family is not likely.
The final generation focuses on enhancement of early communication and negotiation with families when anticipating and making decisions about the use of life-sustaining treatments. In concert, this involves clinicians supporting each other while they respect the wishes of the family and deliver care with which they may disagree. This final generation, while not the easiest or most straightforward, may represent the approach that is most aligned with the underpinnings of dedicated critical care—to provide support for patients and their families through illness and death.
A final issue relevant to the discussion of decision-making around the use of life-sustaining therapies in a critically ill patient is the rationing of medical care. While it can be tempting to consider cost control in these discussions, as it is a pressing consideration in healthcare today, it should be separated from the decision of the appropriateness of a medical treatment for an individual patient. The questions of cost and appropriateness, although both important, are fundamentally different, and the approaches to answering them should reflect this. Furthermore, ICU care is known to be costly, but the limitation of its use at the end of life is not certain to result in significant cost savings. Rationing at the bedside can be complicated. For this reason, the AAP has supported the separation of rationing decisions and bedside decision-making for any individual patient.
Requests for potentially inappropriate treatments in the intensive care unit
A joint statement by the American Thoracic Society, American Association for Critical Care Nurses, American College of Chest Physicians, European Society for Intensive Care Medicine, and SCCM recently addressed this issue and endorsed the following recommendations, among others :
Institutions should implement strategies to prevent intractable treatment conflicts, including proactive communication and early involvement of expert consultants.
The term “potentially inappropriate” should be used, rather than futile, to describe treatments that have at least some chance of accomplishing the effect sought by the patient, but clinicians believe that competing ethical considerations justify not providing them. Clinicians should explain and advocate for the treatment plan they believe is appropriate. Conflicts regarding potentially inappropriate treatments that remain intractable despite intensive communication and negotiation should be managed by a fair process of conflict resolution; this process should include hospital review, attempts to find a willing provider at another institution, and opportunity for external review of decisions. When time pressures make it infeasible to complete all steps of the conflict resolution process and clinicians have a high degree of certainty that the requested treatment is outside accepted practice, they should seek procedural oversight to the extent allowed by the clinical situation and need not provide the requested treatment.
Use of the term “futile” should be restricted to the rare situations in which surrogates request interventions that simply cannot accomplish their intended physiologic goal. Clinicians should not provide futile interventions.
Withholding and withdrawing of life-sustaining treatments
While disagreements about the use of life-sustaining treatment do arise on occasion, it is far more common that a family and the medical team reach consensus about a decision to withdraw life-sustaining therapies. Furthermore, a majority of deaths in the PICU occur after the withdrawal of life-sustaining therapies. , While there may be regional, national, and international variability in the number and percentage of patients who have a decision made to withdraw life-sustaining therapies, the ethics of the process of withdrawing life-sustaining treatments remain the same.
At this stage, the difference between withdrawing and withholding treatment may come into question. Although the actions of withdrawing and withholding a therapy may feel undeniably different to families and the care team, there is no true moral or legal distinction between the two. Any treatment not directed at comfort may be withdrawn or withheld if agreed upon by the family and clinical team, including, but not limited to, mechanical circulatory or ventilatory support, medications supporting the circulation, renal replacement therapy, antibiotic therapy, and hydration and nutrition. Although clinicians and families may make morally and legally defensible decisions to limit such treatments, it is never acceptable to limit care directed at providing comfort and emotional support for the patient and the patient’s family.
Once the decision is made to focus on comfort rather than life-sustaining therapies, whether these are being withdrawn or withheld going forward, the aggressiveness of and attention to care cannot dissipate. The doctrine of double effect remains the guiding principle when considering therapies to be used at the end of life when the focus has transitioned from sustenance of life to comfort. While a contentious topic, related in part to concerns of oversimplification and misplaced focus on physician intent, it remains relevant and supportive when drawing the line between possibly unacceptable (e.g., euthanasia) and acceptable (e.g., aggressive palliative therapy) treatment courses.
As alluded to, the doctrine relies on a distinction between what is intended and what is merely foreseen by the clinician. It states that for any action that has two effects, one good and one bad, it is justifiable if the following four conditions are met ( Box 18.1 ): (1) the action itself must be morally good or neutral, (2) the good and not the bad effect must be intended, (3) the good effect must be a result of the action and not by means of the bad effect, and (4) the good effect must proportionally outweigh the bad effect.