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