Communicating with patients and families who face a serious progressive disease is extraordinarily difficult because of the associated issues of prognostic uncertainty, the potential for death and dying, and the loss of hope. Embedded in these situations is the existential pain of witnessing the suffering of children and their families; discomfort about speaking truthfully with children, especially older adolescents; and reluctance to fully share decision making with parents because of the magnitude and lifelong burden of the decisions and concerns about abandonment of patients or families when values or decisions conflict.³ The quality of communication with physicians and nurses is consistently reported as one of the most long-remembered and important determinants of parent’s satisfaction with the care of their dying child in the pediatric intensive care unit.^4,⁵ Most clinicians recognize from experience that parents are not uniform in their preferences about communication. Nevertheless, repeated findings from the literature document a deficit in physician empathy and availability in establishing adequate communication patterns with parents. Meert and colleagues⁶ examined the audio recordings from semi-structured telephone interviews of 56 parents of 48 children who had died 3 to 12 months earlier at six children’s hospitals in the National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network. Of the 56 parents interviewed, 40 (71%) wanted to provide feedback on the way information about their child’s terminal illness and death was communicated by pediatric intensive care unit (PICU) physicians. The most common communication issue identified by parents was the physicians’ availability and attentiveness to their need for information. These investigators concluded that parents want physicians to be accessible and to provide honest and complete information with a caring affect, using lay language, and at a pace in accordance with their ability to comprehend. They also concluded that withholding prognostic information from parents often leads to false hopes and feelings of anger, betrayal, and distrust.

As with other skills that are important in the intensive care unit, the quality of clinician communication can be improved. Just as there is now a strong emphasis on identifying the communication skills that can contribute to, or protect against, preventable medical errors, so too a developing body of literature describes approaches and tools that may have a positive impact on the perceived quality of end-of-life communication. Interventions that teach critical care practitioners how to speak less and listen more would be likely to improve the experience of the parents of dying children. For example, Meyer ⁷ audiotaped 51 family meetings in Seattle hospitals during which discussions about withdrawing life support were likely to occur. They found that clinicians did more than two thirds of all the talking over an average family meeting lasting nearly 30 minutes. Meyer also found that an increased proportion of family speech was significantly associated with increased family satisfaction with the physician’s communication and with decreased family ratings of conflict with the physician. Interestingly, in this study the families’ opportunity to talk and knowledge that they were being attentively listened to by the clinicians was more important to their overall satisfaction with communication from the physician than even the total duration of the conference.⁷

Most clinicians recognize that ineffective communication can compound a family’s suffering or unleash emotional responses that only add to a painful experience, yet few receive any formal or informal training on optimal practice for a difficult conversation in this context. Expressing the “right words” and avoiding words that unintentionally provoke harm is a source of anxiety for most clinicians in the PICU, especially when a child is dying. An educational program for pediatric critical care physicians and nurses recently has been developed to address this gap in training. Meyer and colleagues ²⁰ describe the philosophy and pedagogical approach of an innovative educational program that is grounded in principles of relational learning and designed to improve the preparedness of health care professionals for engaging in challenging conversations with patients and families. Some examples of effective and ineffective communication styles suggested by the investigators who developed this course are outlined in Table 12-1.

Table 12–1 Communication with Families at Clinically Significant Times

Clinical Context	Suggested Explanation	Potential Pitfalls
Uncertain neurologic prognosis	“Lindy has had a very serious head injury and we are worried about her. Right now, we are doing everything to support her and to treat her head injury. Lindy’s prognosis—our estimate of how she will do—is uncertain at this time. We expect that her clinical situation will become clearer over the next 24 to 48 hours. We can talk with you often to keep you updated as best we can.”	Being overly optimistic or pessimistic in prognostication; setting an unrealistic time frame regarding clinical course; avoiding or not answering the family’s difficult questions
Patient not responding to treatment, prognosis grim, need for brain death examination	“We are concerned that, despite our best treatment efforts, we have not seen the improvement in Lindy that we were all hoping for. Lindy is not waking up, and there are signs that the injury to her brain has gotten worse. Patients may be declared dead when either their heart or their brain ceases to function. Unfortunately, we are at the point now where we need to do an examination to see if Lindy’s brain is still functioning. We will keep you informed of the results of our tests and what they will mean for Lindy.”	Provision of conflicting information by different staff members; being vague and indirect in communication with the family
Providing results of first brain death examination	“Our preliminary testing indicates that Lindy’s brain has ceased to function. We need to confirm this testing again in several hours. Unfortunately, if the testing is confirmed, it will mean that Lindy has died.”	Being unprepared for families to raise questions about organ donation even before the diagnosis of brain death has been established
Waiting period between brain death examinations	“We will hold Lindy’s second brain death examination at 10 AM tomorrow morning. Following that examination, we would like to sit down with you and let you know the results of the examination and what it means for Lindy. In the meantime, we will provide the best care for Lindy and be here for you, too.”	Avoiding the family and contributing to the family’s experience of feeling abandoned or under-informed; “hovering over” patient and family, providing too little privacy and special time between child and family
Brain death confirmation and withdrawal of life support	“We are sorry to say that, based on the results of Lindy’s two examinations, we are now certain that your daughter has no brain function, and has died.” The death certificate should be completed at this point, indicating the time the second examination was completed as the time of death.	Using language that suggests the child is dying, not dead; do not say, “Your child is being kept alive until you decide if you want to donate organs,” or “Now we need to decide whether to withdraw life support”
Potential organ donation	“I would like to introduce you to some colleagues of mine who can help explain to you the options that are available at this point and who can assist you in making the best decisions for Lindy and your family.”	Going beyond your limits of expertise regarding explanation about organ donation; hesitancy or reluctance to refer to the Organ Procurement Organization in a timely manner; not conveying trust or confidence when referring to the organ donor representative

From Truog RD, Christ G, Browning DM et al: Sudden traumatic death in children: “we did everything, but your child didn’t survive,” JAMA 295:2646–2654, 2006.

Palliation of Symptoms or Relief of Suffering?

Few issues are as difficult and contentious for clinicians as the effective and ethical management of distressing patient symptoms and the suffering that often accompanies them. Witnessing the suffering of patients and their families is a source of concern for clinicians, and when interventions aimed at relieving the patient’s distress, pain, or suffering are ineffective, clinicians often feel helpless or morally distressed.⁹^–¹³ The conceptual foundation of palliative care is that there is more to improving the quality of life for a child with a life-threatening illness than treatment with medications such as opiates. Rather, all of the child’s physical, emotional, psychological, and spiritual needs must be continually assessed and managed comprehensively and not in isolation. Many reviews of comprehensive pediatric palliative care management have been reported in the literature in the past several years.^1,¹⁴^–¹⁶

Yet no other issue in palliative care is as contentious as determining how much is too much sedation and analgesia for a dying patient.¹⁷^–²¹ Clinicians struggle with the obligation to relieve suffering versus intentionally ending life. Such issues raise the full spectrum of ethical and legal concerns for which there is not universal agreement. Despite this situation, during the past 25 years an ethical and legal consensus has emerged in the United States that proportionate palliative sedation and analgesia, that is, administering the minimum amount of medication to relieve refractory physical symptoms, is not only a defensible practice but the desired practice.²² More controversial are such practices as administering medication to dying patients with the intended end point of hastening death. To address these concerns, the Society of Critical Care Medicine has published a consensus recommendations intended to provide information and advice for clinicians who deliver end-of-life care in intensive care units.²³ A practical guide to end-of-life care, based on these guidelines, is provided in this chapter.

The provision of medical nutrition and hydration to a child at the end of life raises equally contentious issues.^24,²⁵ Must it be continued because it is ethically required or provides symptom relief benefits, or may it be withheld or withdrawn because it may induce unwanted symptoms and is not ethically obligatory? There is broad consensus that withholding or withdrawing medical interventions is morally permissible when requested by competent patients or, in the case of patients without decision-making capacity, when the interventions no longer confer a benefit to the patient or when the burdens associated with the interventions outweigh the benefits received. The withdrawal or withholding of measures such as attempted resuscitation, ventilators, and critical care medications is common in the care of terminally ill adults and children. The American Academy of Pediatrics also has recently endorsed a position that the withdrawal of medically administered fluids and nutrition for pediatric patients is ethically acceptable in limited circumstances and preferably with an ethics consultation.²⁶

Spiritual and Environmental Needs

A child’s death is undoubtedly one of the most stressful experiences a human being can endure, and parents’ views of longstanding relationships and beliefs can be shaken, if not in effect shattered, and their spiritual needs can be intense. Meert and colleagues ²⁷ interviewed 32 parents of 26 children after their child’s death in the PICU and reported that the main spiritual need described by parents was that of maintaining connection with their child. Parents maintained connection at the time of death by physical presence and after the death through memories, mementos, memorials, and altruistic acts such as organ donation, volunteer work, charitable fund-raising, support group development, and adoption. Using a similar methodology, Robinson and colleagues²⁸ examined the experience of 56 parents whose children had died in three Boston PICUs after the withdrawal of life-sustaining therapies. These investigators found that four explicitly spiritual/religious themes emerged (prayer, faith, access to and care from clergy, and belief in the transcendent quality of the parent-child relationship that endures beyond death) in three quarters of the respondents and concluded that staff members should be explicit in their hospitality to parents’ spirituality and religious faith to foster a culture of acceptance and integration of spiritual perspectives. Recent guidelines that have been promulgated for addressing the spiritual aspects of care for people facing life-threatening illness call for greater awareness and emphasis for patients across the life span and spectrum of disease.²⁹

Support of Clinicians

Caring for critically ill children is uniquely rewarding and uniquely stressful. Clinicians who listen to and witness the pain and suffering of children and their families also may experience pain and suffering because they care.⁹ The moral, emotional, and physical distress of clinicians caring for critically ill children, and their grieving process, has recently received more thorough examination. Clinicians—nurses, physicians, respiratory therapists, social workers, chaplains, child life specialists, and others—have unique needs for support. Hamric and Blackhall³⁰ and Rushton³¹ have noted that nurses shoulder a large proportion of the stress in caring for dying children by the very nature of their proximity and sustained involvement with patients and families and are especially vulnerable to moral distress. Moral distress arises in situations where the clinicians are “unable to translate their moral choices into moral action…the costs of unrelieved moral distress are high; ultimately, as with all unresolved professional conflicts, the quality of patient care suffers.”³¹ Despite the predominance of literature focusing on moral distress in nursing, there is increasing recognition that moral distress and burnout affect the entire interdisciplinary team.

Programs that train clinicians to cope with the psychosocial and spiritual aspects of caring for dying children, including the high levels of moral distress, grief, and professional exhaustion, have been lacking until recently.^28,³² The American Association of Critical Care Nurses (AACN) has developed a program to address the issues of persons experiencing moral distress in the ICU entitled “Rise Above Moral Distress.” This program describes four “A’s”: ask, affirm, assess, and act.³³ The AACN also calls for the implementation of interdisciplinary strategies to recognize and name the experience of moral distress; the establishment of mechanisms to monitor the clinical and organizational climate to identify recurring situations that result in moral distress; and taking corrective action, including the development of employee assistance programs, protocols for end-of-life care, critical stress debriefings, and grief counseling. Similarly, forums where troubling questions can be deliberated upon openly and intentionally among the interdisciplinary team members are essential for the well-being of each of the team members.³⁴ Unquestionably, physicians and respiratory therapists experience all of the same concerns as nursing professionals, and all clinicians need a variety of strategies to enhance their resilience and personal well-being, including stress reduction strategies, mindfulness, mind-body interventions, end-of-life care training, and a sense of community.^31,³⁵^–³⁸

Practical Aspects of Care at the End of Life

Optimal palliative care begins with the patient’s admission to the PICU and continues without disruption through discharge from the hospital, regardless of whether the child lives or dies. All of the rapidly evolving clinical and ethical decisions underlying this care surface most dramatically when the issue arises of whether to withdraw life-sustaining treatment with the intention of allowing the child to die—in particular, discontinuation of mechanical ventilation.

Failure of the clinical team to anticipate the abrupt and unpredictable change in patient symptoms with the cessation of assisted ventilation and have in place a flexible and effective plan of care to address changes as they arise can lead to hasty decisions, and this situation can leave both the patient’s parents and clinicians with lasting emotional distress that optimal and ethical end-of-life care was not provided.³⁹ How can clinicians provide care within an ethical framework consistent with the values of the medical profession and our society and yet still respond effectively to the evolving physiologic, emotional, and spiritual needs of the patient and their family members in a timely manner? A practical guideline, such as the one provided in the following section of this chapter (adapted with permission from the protocol used at the Division of Critical Care Medicine at Children’s Hospital Boston and based on the Society of Critical Care Guidelines²³), outlines the steps that should be taken.

The Anticipatory Clinical Team Meeting

Effective and cohesive end-of-life care must be led and supervised by the attending physician at all times. This begins with a brief meeting of all clinicians who will be providing end-of-life care prior to the withdrawal of life-sustaining treatments.¹⁶ Among the questions that should be briefly addressed in this ad hoc meeting are the following:

Preparation and Support of the Family

• After the clinician meeting, preferably the senior physician and bedside nurse should meet with the family to provide clear and explicit explanations about the process of withdrawal of life-sustaining treatments and assurance that symptoms of patient suffering will be treated. Meeting with the family is essential to prepare them for what to expect and may alleviate some of their anxiety around the process.

• It is best to avoid making firm predictions about the patient’s clinical course after withdrawal of mechanical ventilation or other forms of life-sustaining treatment, because often they are inaccurate. Substantial loss of credibility may result when predictions about death or the timing of death are inaccurate.

• When predictions are incorrect, clinicians and families frequently get very anxious as if something has gone “wrong,” and this situation can lead to hastily made and poor decisions. The mindset of everyone in the room should be that the patient’s trajectory after the withdrawal of mechanical ventilation can be different from what was expected and that any outcome will be treated calmly and compassionately for as long as necessary.

• When answering questions about what will happen, it is better to say, for example, “We think it is unlikely that your child will survive after the ventilator is withdrawn, but whether he/she breathes only for a short time or for a very long time, we can assure you that we will treat any symptoms that appear to be causing her/him discomfort.”

• At times it will be necessary for the clinicians to anticipate, ask, and answer questions that the family appears to be afraid or unable to verbalize. For example, a clinician might say, “Sometimes after the ventilator is withdrawn patients experience a change in skin color, or unusual breathing noises, and this is to be expected. Our job is make sure that your child does not experience symptoms of suffering or discomfort. If we see signs of discomfort, we will treat them.”

• Families should have the opportunity to be helpful and be invited to participate in activities to relieve discomfort, such as mouth care, bathing, and repositioning. They should be encouraged to participate in assessment of the patient’s pain and suffering. The family also may be encouraged to provide other means of comfort to the patient that had been important to them in the past, such as holding or rocking their child, wrapping the child in a special blanket, or giving their child a massage.

Determining Who Will Care for the Patient at This Time

• Care of the dying patient is a solemn professional responsibility too important to delegate to one individual. It requires the presence of an experienced physician who can be immediately available at the bedside to work in collaboration with the nurse in guiding appropriate and timely therapies.

Determining How Signs of Apparent Discomfort Will Be Treated

• Pharmacologic and nonpharmacologic strategies to treat apparent discomfort should be discussed, and one person should be assigned to be the “circulator,” that is, someone who is free to get additional supplies without leaving the patient alone.

• Palliative measures should be comprehensive and not rely solely on sedation and analgesia. For example, simple positioning or massage may be effective alone or in conjunction with pharmacologic agents.

• Assessment of breathing patterns can be complicated in dying patients. Irregular breathing patterns are a natural part of dying and may not be uncomfortable for the patient. Unfortunately, the irregular pattern that accompanies dying is often referred to as “agonal,” which may imply to the family and other clinicians that the patient is in “agony.”

• Gasping is a medullary reflex and can occur in the absence of consciousness. Similarly, noisy respirations from airway secretions (the “death rattle”) are more likely to be distressing to the family and other observers than they are to the patient. Not all gasping need be treated with escalating doses of sedatives or narcotics. Ideally the decision to treat should be made based on consensus between the family and clinicians at the bedside regarding whether the breathing pattern appears to be causing, or is a manifestation of, suffering.

• In general, the clinician’s obligation is to treat objective signs of discomfort as experienced by the patient. The distress of the family should be addressed by continued reassurance and emotional support.

Neuromuscular Blockade and the Withdrawal of Mechanical Ventilation

• Neuromuscular blocking drugs have no sedative or analgesic properties and may mask symptoms of suffering at the end of life. As a general rule, therefore, pharmacologic paralysis should be avoided at the end of life.^23,⁴²

• In most cases, the effect of these agents can be reversed or allowed to wear off within a short period, allowing for the withdrawal of mechanical ventilation in the absence of the confounding effects of paralysis. Patients who have been receiving neuromuscular blockades chronically for management of their ventilatory failure occasionally can present a more difficult ethical dilemma. In some situations, restoration of neuromuscular function may not be possible for several days or even weeks. When faced with this problem, the clinician must choose between withdrawal of the ventilator while the patient is paralyzed versus continuation of life support well beyond the point at which the patient and family have determined that the burdens of such treatments outweigh the probable benefits. In this circumstance, it may be preferable to proceed with withdrawal of life support despite the continued presence of neuromuscular blockade.

Consideration of the Level of Sedation and Analgesia to Be Used

• Current ethical and legal guidelines place importance on the intentions of clinicians in administering analgesics and sedatives at the end of life. Specifically, clinicians should administer doses that are intended to relieve pain and suffering but not intended to directly cause death. We cannot, however, give more sedation than what the patient needs to be comfortable (thus, one should be prepared for the request, “Please, can’t we just get this over with?”).

• The goal is to ensure that objective signs of apparent discomfort are treated as needed. The goal of treatment is not to ensure that the patient’s death is intentionally hastened or to avoid giving any treatment for fear of hastening death.^18,^20,⁴³^–⁴⁵

• Because intentions are essentially subjective and private, the only ways to infer the nature of a clinician’s intentions are through self-report and by an analysis of his or her actions.⁴⁶

• Accordingly, documentation of one’s intentions in the patient’s chart is an important part of providing end-of-life care. When “prn” orders are written for analgesics and sedatives, the indication for administration should be stated clearly (e.g., pain, severe upper airway obstruction). This step reduces the likelihood of misinterpretation or abuse.

• With regard to actions, when a clinician titrates morphine in doses of 1, 5, or 10 mg every10 or 20 minutes, it is plausible to conclude that the clinician intends to make the patient comfortable and not to directly cause the patient’s death. On the other hand, when a clinician administers 2000 mg of morphine acutely to a patient who is not profoundly tolerant, it raises the concern that the clinician may have primarily intended the death of the patient.

• Sedation and/or analgesia 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.

• The concept of “anticipatory dosing” (as opposed to reactive dosing) also should guide clinicians in the use of sedation and analgesia at the end of life. The rapid withdrawal of mechanical ventilation is an example of the need for anticipatory dosing. At the time of ventilator withdrawal, the clinician can anticipate that there will be a sudden increase in dyspnea. It is not sufficient simply to respond to this distress with titrated doses of an opioid (reactive dosing). Rather, clinicians should anticipate that the abrupt withdrawal of assisted breathing will trigger increased respiratory distress, and therefore they should provide adequate sedation or analgesia beforehand (anticipatory dosing). As a general rule, the doses of medication that the patient has been receiving hourly should be increased by twofold or threefold and administered acutely before withdrawing mechanical ventilation.

The Goal of Using Sedatives and Analgesics in This Context

• The goal of titrating sedatives and analgesics after withdrawal of mechanical ventilation is only to treat objective signs of discomfort that evolve; it is not to bring about a certain outcome. Stated another way, the target is to make the patient comfortable; the target is not some arbitrary maximum dose, and the target is not the death of the patient.

• If there are no objective signs of discomfort and the patient breathes effectively after extubation, despite the prediction that death would immediately follow withdrawal of ventilation, there should be no panic among the clinicians that something is wrong and further sedatives or analgesics must be administered. If the patient is unexpectedly breathing comfortably after extubation, all other non-medication measures of palliative care should be continued and ongoing and comprehensive support should be provided for the family.

• On the other hand, multiple boluses of escalating doses of sedatives and analgesics may be required to treat clear signs of discomfort after extubation in order to keep the patient comfortable.

• Either way, the team’s frame of mind before the withdrawal of life-sustaining treatments must be that the patient will proceed to die at his or her own time and pace. Clinicians need to respond to what evolves, but it is not their intention in administering sedatives and analgesics to ensure that a certain outcome evolves.

• The sole focus is that a patient for whom life-sustaining treatments have been withheld or withdrawn will not experience suffering that is untreated.

Issues After Death

• In most jurisdictions, after a patient dies, physicians are required to notify other caregivers not in attendance, such as the pediatrician and consultants, along with the local organ procurement organization (if not prior to death for consultation about organ donation questions), because every cadaver is potentially a tissue donor of corneas, skin, heart valves, and bone. In some cases the medical examiner or coroner will need to be notified.

• Seeking permission for an autopsy raises special issues.⁴⁷ First, a child’s death is an unparalleled time of stress for parents, and the physician who approaches a family for permission to perform an autopsy should have “earned the right” by virtue of his or her prior clinical relationship with the patient and family.

• Second, physicians involved in obtaining consent to perform an autopsy must be fully knowledgeable on (1) the autopsy procedure; (2) limitations to the procedure; and (3) the storage, use, and disposition of organs. Not only are physicians who are poorly educated about autopsies likely to misinform families and potentially generate subsequent medicolegal issues, but they are also more likely not to request an autopsy.

• A follow-up telephone call within 4 weeks of the patient’s death to assess the family’s grief status and to screen for problems and provide resources for continued support in the community should be provided by a bereavement support program.