Role Of Parents And Physicians

Who should make the final decision about treatment for a child in the PICU? In the United States, the clear consensus in the fields of ethics and the law is that a competent adult patient has the right to refuse all forms of medical therapy, including life-sustaining treatment, even if it is certain that such a refusal will hasten death. A similar moral and legal consensus holds that parents have the authority to determine the best interests of their children and make decisions in accord with their own values. However, pediatric healthcare providers also have legal and ethical duties to their patients, independent of parental desires or proxy consent.^1–3

How can one objectively assess whether a decision is within the range of acceptable ethical choices for a child? More than 20 years ago, a widely respected decision-making framework for children in the PICU context was published by the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research.⁴ The commission proposed five considerations for determining a child’s “best interests” and therefore the appropriate approach when weighing different treatment options: (1) the amount of suffering and the potential for relief, (2) the severity of dysfunction and the potential for restoration of function, (3) the expected duration of life, (4) the potential for personal satisfaction and enjoyment of life, and (5) the possibility of developing a capacity for self-determination. The commission then advocated applying these criteria based on an assessment of the proposed treatment plan as clearly beneficial, ambiguous or uncertain, or futile. The commission concluded that in most circumstances, the child’s parents should be the final decision makers on all medical decisions (Table 217-1). The Committee on Bioethics of the American Academy of Pediatrics has similarly recommended great deference to patents’ informed decisions.⁵

TABLE 217-1 Decision Making in the Pediatric Intensive Care Unit

The President’s Commission also concluded, reflecting the legal consensus in this area, that parental authority must occasionally be superseded by clinicians when it is determined that the parents’ decisions are at odds with the societal consensus about a child’s interests or when parents’ actions produce certain risk or harm to the child. If life-threatening choices are not involved, or if the risk of substantial harm is minimal, courts have generally respected the decisions of the parents, even though physicians may have disagreed strongly. In some states, parents are legally permitted to refuse standard immunizations for religious reasons.⁵ As the potential threat to the child increases, however, and as the benefits of treatment become more certain, actions to override parental choices are not only legally supportable but also mandatory in most jurisdictions. Numerous court opinions have upheld the notion, first pronounced in the 1944 Supreme court case of Prince v. Massachusetts, that a parent may make a martyr of himself because of religious convictions, “but he is not free to make a martyr of his child.”⁶

Need For Improved Communication

A growing body of research reveals that parents report problems related to optimal communication as one of the major deficiencies in the end-of-life care provided to their child. Consistently effective communication from one level of care and one set of providers to the next is a basic expectation, but one that is often not fully met.⁷ Meert and colleagues reported on the experience of the bereaved parents of 48 children cared for at 6 PICUs in the United States.⁸ These investigators found that the most common communication issue identified by parents was the physicians’ availability and attentiveness to their informational needs. More important than the actual outcome, recent data also suggest that many parents want more involvement in end-of-life planning, from discussions around the location of death to even consideration of a plan for extubation at home. These data suggest that the potential for strained communications is mitigated if clinicians provide timely clinical and prognostic information and support the family with a comfortable setting and continuous psychosocial support.

Seeking The Child’s Assent

The prevailing consensus is that patients should participate in treatment decisions to the extent of their decision-making capacity. The President’s Commission advocated this perspective when it noted, “Determining whether a patient lacks capacity to make a particular health care decision requires assessing the patient’s capability to understand information relevant to the decision, to communicate with care givers about it, and to reason about relevant alternatives against a background of reasonably stable personal values and life goals.”⁴ Restricting medical decision making only to patients who fulfill the legal definition of competency would infringe on the autonomy of many individuals with decisional capacity, such as adolescents.

Around the age of 7 years, children develop an increasing capacity to understand, process, and make decisions about their care. For children this age and older, it becomes increasingly important for clinicians to obtain the child’s assent whenever appropriate. As a matter of policy, the American Academy of Pediatrics has stated, “Patients should participate in decision-making commensurate with their development; they should provide assent to care whenever reasonable. Parents and physicians should not exclude children and adolescents from decision-making without persuasive reasons.”³

Determining Futility

Few issues have provoked as much controversy as the notion of futility. Who should determine when a situation is futile? A recent review of the futility debate noted that the debate about how to resolve cases in which patients and families demand interventions clinicians regard as futile has been in evolution over the past 20 years.⁹ The first generation was characterized by attempts by physicians to define futility in terms of certain clinical criteria. These attempts failed because they proposed limitations to care based on value judgments for which there is no consensus. The second generation was based on a procedural approach that empowered hospitals, through their ethics committees, to decide whether interventions demanded by families were futile. Many hospitals adopted such policies, and some states such as Texas incorporated this approach into legislation. This approach has also not succeeded because it gives hospitals authority to decide whether or not to accede to demands clinicians regard as unreasonable when any national consensus on what is a “beneficial treatment” remains under intense debate. Absent such a consensus, it appears that procedural mechanisms to resolve futility disputes inevitably confront the same insurmountable barriers as attempts to define futility.

The Society for Critical Care Medicine (SCCM) states that treatments should be defined as futile “only when they will not accomplish their intended goal.”¹⁰ Moreover, this official position on futility states:

This approach advocates that the local community draft procedures to be followed in cases of dispute, with broad input from the community instead of ad hoc attempts at the bedside to define and resolve differences over futility. This policy goes on to state:

The Committee on Bioethics for the American Academy of Pediatrics has published guidelines articulating similar sentiments.²

Optimal Palliative Care

For a critically ill child and their family, attention to all of their emotional, physical, and spiritual needs begins at the time of diagnosis, not at the end of life. The World Health Organization defines five essential elements of pediatric palliative care¹¹:

Yet, despite these and other professional guidelines calling for adoption of the concept of early and continuous palliative care, recent studies continue to find that pediatricians only refer patients once curative therapy is no longer an option. Creating a more practical definition of care, one that emphasizes an array of services throughout the course of an illness as opposed to hospice care, may lead to more optimal palliative care for children with life-limiting illnesses.¹²

Sedation And Analgesia

A question that weighs on the mind of every practitioner of pediatric critical care is how much is too much sedation and analgesia for the dying patient? A recent consensus statement by the American College of Critical Care Medicine notes:

An early expert consensus guideline from the same committee advocated that sedatives and analgesics “should be titrated to effect, and the dose should not be limited solely on the basis of ‘recommended’ or ‘suggested’ maximal doses. In most cases, patients who do not respond to a given dose of an opioid or benzodiazepine will respond if the dose is increased—there is no theoretical or practical maximal dose.”¹⁴ Other experts have expressed similar recommendations:

However, assuming that one can externally validate the “appropriate” administration of sedation and analgesia in this setting, determining when to do so is likely to be difficult. There is no constellation of patient signs, symptoms, or pain scores that meets a universally accepted threshold for treatment, let alone the extent of treatment to be given. Regardless of the dosing scheme required to effectively treat pain and suffering, it should be standard medical practice to thoroughly document the observable signs and symptoms of suffering and the rationale behind the regimen chosen to treat those symptoms.

Neuromuscular Blockade

Is it acceptable to administer a neuromuscular blockade to a dying patient for the sole purpose of making the process of ventilator withdrawal easier for the family? Neuromuscular blocking agents, used to reduce ventilator-patient asynchrony and minimize oxygen consumption by eliminating patient movement, have no sedative or analgesic properties. Given this, many believe administering these agents as the ventilator is being withdrawn is morally indefensible.¹⁶ Some argue that minimizing the distress of the patient’s family is an important consideration, and given the certainty of the patient’s death following the withdrawal of mechanical ventilation, regardless of muscle relaxation, these clinicians believe that initiating neuromuscular blockade at the time of withdrawal is acceptable. However, others believe that the patient’s well-being always takes precedence over family interests. Neuromuscular blockade potentially masks symptoms of patient suffering and therefore interferes with the clinician’s primary obligation to ensure that a dying patient does not experience untreated suffering. Such an action also does not allow for the chance the patient might survive without mechanical ventilation when there is some degree of prognostic uncertainty.

What should be done when a patient is experiencing the effects of residual neuromuscular blockade and the family decides to withdraw mechanical ventilation? The Ethics Committee of the SCCM has taken the position that efforts should be made to allow the restoration of neuromuscular function before withdrawing mechanical ventilation from patients who have previously been receiving therapeutic neuromuscular blockade.^13,14

Some experts believe that only in very limited circumstances is it morally justified to withdraw mechanical ventilation from a patient who is still experiencing the effects of residual neuromuscular blocking agents that were given as part of appropriate management before the decision to forgo life-sustaining treatment was made. If the attempt to reverse neuromuscular blockade is to be more than a charade, the patient must regain sufficient function to potentially sustain life and manifest symptoms of unnecessary pain or suffering. Yet, in some critically ill patients with multiple organ failure, drug clearance may be prolonged and unpredictable, and restoration of full neuromuscular function may take many days or weeks, even with routine neuromuscular monitoring and attempts at pharmacologic reversal. In this instance, the reasons for waiting for the restoration of neuromuscular function must be balanced against the added suffering and continued use of life-sustaining treatments, possibly long after the family and clinicians have concluded that the burdens outweigh the benefits. Open discussion with the family and among the caregivers should be undertaken, followed by clear documentation in the chart of decisions regarding the restoration of neuromuscular function.¹⁴

Organ Donation

Organ donation rates continue to be inadequate. For example, it is frequently noted that the general public claims to support organ and tissue donation on broad public opinion surveys, but only 40% of all those approached grant permission for donation. Research in this area has found that that the reasons for denying consent can be grouped into eight broad categories: donor characteristics, distrust of the medical community, religious beliefs, fear of mutilation, concern regarding the use of organs, lack of knowledge about the deceased’s wishes, misunderstanding of brain death, and the bereaved family’s emotional state.

The questions of who should approach the family about potential organ donation, when to broach the subject, and what should be said have been simplified in the United States by federal regulations issued in 1998. One of the requirements is that a hospital must have an agreement with an organ procurement organization, under which it contacts the organization in a timely manner about individuals who die or whose death is imminent in the hospital. The organ procurement organization then determines the individual’s medical suitability for donation. Hospitals are also required to have an agreement with at least one tissue bank and one eye bank for tissue and eye referrals. The regulations require hospitals to collaborate with the organ procurement organization in notifying the families of potential donors of their donation options and to work cooperatively with such organizations and tissue and eye banks in educating hospital staff on donation issues, reviewing death records to improve the identification of potential donors, and maintaining potential donors during the testing and placement of organs.

Who should approach the family and request organ donation? In the United States, the Centers for Medicare and Medicaid Services has answered this question by stating:

More recently there has also been a renewed interest in promoting organ donation after cardiac death. Donation after cardiac death (DCD) remains controversial in some pediatric institutions.²⁰ Antommaria and colleagues examined DCD policies at 105 pediatric institutions across North America and found that while most children’s hospitals have developed or are developing DCD policies, there is considerable variation among policies on the actual DCD procedure that is allowed.²¹

Concerns After Death

How well informed are families and clinicians about the actual autopsy procedure? Is it ethical to practice resuscitation procedures on newly deceased patients? How well are bereaved families from the PICU supported by follow-up programs? Many of these questions have been addressed, and practitioners of pediatric critical care medicine should be familiar with these stated positions. For example, the Ethics Committee of the SCCM has stated that only a physician who has “earned the right” by virtue of their relationship with the parents, and assuming they are fully knowledgeable on the actual autopsy procedure and associated medical examiner procedures, should approach the family to seek permission for autopsy.¹⁴ Similarly, a position statement from the Council on Ethical and Judicial Affairs of the American Medical Association states that performing procedures on the newly dead should be allowed, but only in the context of a structured training sequence completed under close supervision, and only after permission from family members has been obtained.²²

Equally important are the needs of bereaved parents. Meert and colleagues found that many bereaved parents want to meet with the intensive care physician after their child’s death to gain information and emotional support and to give feedback about their PICU experience.²³ In this study of the experience of parents of 48 children who died in the PICU of one of six children’s hospitals in the United States, these investigators reported that only 7 (13%) parents had a scheduled meeting with any physician to discuss their child’s death; 33 (59%) wanted to meet with their child’s intensive care physician. Of these, 27 (82%) were willing to return to the hospital to meet. Topics that parents wanted to discuss included the chronology of events leading to PICU admission and death, cause of death, treatment, autopsy, genetic risk, medical documents, withdrawal of life support, ways to help others, bereavement support, and what to tell family. Parents sought reassurance and the opportunity to voice complaints and express gratitude. These findings point to an obvious and painful reality: bereaved parents have intense needs, and a thoughtful follow-up program, building on the developing research in this area, can provide significant support.

Key Points