CHAPTER 1
INTRODUCTION

We are the parents of three premature babies—Abigail who died after five and a half months, Jonathan who died soon after being born, and Jeremy who is now 12, tall, athletic, and good in school. . . . I go back to the journals I kept while Abby was in intensive care. . . . It was hard to feel like parents in the ICU. Sometimes there was no room for us, both literally and figuratively. There was no place for parents to hang their coats. The family room closed during the Christmas holidays because of a holiday decorating contest. . . .

No one really talked to us about the possibility that Abigail would die, except in her first week. Even then it was couched in euphemisms that were easy to misunderstand or ignore. I remember being asked one evening, “How far do you live from the hospital?” That was the extent of the inquiry. When Abby coded and died, I was scared and lonely, standing outside, unable to be with her. No one had time to tell me what was happening.

We spent so much time fighting for Abby, getting information, and so forth. Could we have better spent our time just being with her? If we had known better what to expect, would we have just held her? Our second child, Jonathan, died a couple of hours after his birth, largely because we knew some things to ask for after our experience with Abigail.

Looking back, we were professionals, we had contacts, we were used to speaking up for ourselves. What about parents without that?

Deborah Dokken, parent, 2001



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CHAPTER 1 INTRODUCTION We are the parents of three premature babies—Abigail who died after five and a half months, Jonathan who died soon after being born, and Jeremy who is now 12, tall, athletic, and good in school. . . . I go back to the journals I kept while Abby was in intensive care. . . . It was hard to feel like parents in the ICU. Sometimes there was no room for us, both literally and figuratively. There was no place for parents to hang their coats. The family room closed during the Christmas holidays because of a holiday decorating contest. . . . No one really talked to us about the possibility that Abigail would die, except in her first week. Even then it was couched in euphemisms that were easy to misunderstand or ignore. I remember being asked one evening, “How far do you live from the hospital?” That was the extent of the inquiry. When Abby coded and died, I was scared and lonely, standing outside, unable to be with her. No one had time to tell me what was happening. We spent so much time fighting for Abby, getting information, and so forth. Could we have better spent our time just being with her? If we had known better what to expect, would we have just held her? Our second child, Jonathan, died a couple of hours after his birth, largely because we knew some things to ask for after our experience with Abigail. Looking back, we were professionals, we had contacts, we were used to speaking up for ourselves. What about parents without that? Deborah Dokken, parent, 2001

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The death of a child is a special sorrow, a lifelong loss for surviving mothers, fathers, brothers, sisters, grandparents, and other family members. Some children die after an extended illness; others die suddenly with no forewarning. No matter the circumstances, a child’s death is a life-altering experience. At best, the physicians, nurses, and others who care for a child who dies and for the surviving family will help all involved feel that they did everything they could, that the parents were good parents, that the child and family spent their time together—however limited—forging or reinforcing bonds of love. At worst, families live with memories of possibly needless suffering and with enduring regrets or doubts about their own choices. In between are experiences like that of Abby’s family—experiences of good care alternating with unwittingly inflicted pain, of compassion mixed with insensitivity, of choices made and then doubted. Health care professionals may also feel anguished and unsure that they did what was best. The goal of palliative, end-of-life, and bereavement care for children and their families is to provide them with the best care and support possible and to do so reliably and consistently, no matter how or where a child is cared for. Despite good intentions, that goal is too often not met. Omissions and missteps in care may not be recognized. If they are, health care professionals and organizations may not systematically learn from experience as Abby’s and Jonathan’s parents did. Because children are resilient, because they are so cherished, and because advances in medicine and public health have greatly reduced child mortality in the United States, those caring for children with life-threatening medical problems are usually committed to pursuing all curative and life-prolonging options until death is at hand. This intensive but limited focus can expose children and families to unnecessary suffering, particularly if inadequate attention is paid to the potential burdens as well as benefits of these options and to children’s physical and emotional distress. A more comprehensive approach to care is needed. Regardless of the decisions made about curative or life-prolonging treatments, children with life-threatening medical problems and their families should have access to accurate information and excellent supportive care that offers physical, emotional, and spiritual comfort from the time of diagnosis through death and into bereavement—if death is the outcome. Good palliative care should benefit children who survive a life-threatening medical problem as well as those who do not—and should support the families of children in both groups. When they look back, families should feel that everyone did their best to help their child and family. In recent years, health care professionals, policymakers, researchers, faith communities, and others have paid increasing attention to the needs of people approaching death and those close to them. Because approximately

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70 percent of Americans who die each year are elderly adults, most of this attention understandably focuses on their circumstances and needs. Nonetheless, even in affluent countries, children still die—approximately 55,000 in the United States in 1999. Each of these deaths brings loss, change, and enduring grief to the family. Each death also affects a broader circle of friends, neighbors, schoolmates, and others in the community who may feel distress and a sense of kinship, even if they do not personally know the child or family. Care for children necessarily differs from care for adults, reflecting children’s developing physiological, psychological, and cognitive characteristics and their legal, ethical, and social status. These differences are reflected in the development of pediatric specialties in medicine and other health professions, the creation of pediatric hospitals and other care settings, and the growth of educational programs and research dedicated to improving care for children. Professionals in the evolving fields of palliative and end-of-life care are understanding the need to apply their principles to children and considering how to train palliative care specialists as well as others who regularly care for children and families facing medical problems that are likely to end in the child’s death. The importance of such efforts is increasingly being recognized (see, e.g., Armstrong-Dailey and Goltzer, 1993; Armstrong-Dailey and Zarbock, 2002; ChIPPS, 2001; Goldman, 1996; Hilden et al., 2001b; Levetown, 2001; Linke, 2002; Rushton, 2001; Trafford, 2001). This report examines what is known about the needs of children with life-threatening medical problems and their families and the extent to which these needs are being met. It also presents suggestions and recommendations for strategies to provide more effective, compassionate, and reliable palliative, end-of-life, and bereavement care. PROBLEMS AND CHALLENGES When Rosario Maria was born with severe brain injury, she was given two days to live. She survived eight years. . . . It was noticeable that when we finally decided to take the inevitable steps that would lead to her death, the medical staff stopped considering her as a priority. Rosario Avila, parent, 2001 Many physicians, nurses, social workers, and others provide excellent, sensitive palliative, end-of-life, and bereavement care to children and their families. Nonetheless, as later chapters in this report describe in more depth, shortcomings in care can too frequently be found. Effective, compassionate, reliable palliative and end-of-life care has not usually been a priority for

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health care providers, managers, researchers, policymakers, or the general public. Some of the deficits in palliative and end-of-life care for children that are described in this report are similar to those experienced by adults (IOM, 1997). For example, frightened and upset patients and families may receive confusing or misleading explanations of diagnosis, prognosis, and care options. They may likewise be provided too little opportunity to absorb shocking information, ask questions, and reflect on goals and decisions, even when no immediate crisis is driving decisionmaking. Patients of all ages suffer from inadequate assessment and management of pain and other distress, despite the availability of therapies known to help most patients. For both children and adults, physicians may advise and initiate treatments without adequate consideration of their potential to cause additional suffering while offering no or virtually no potential for benefit. Opportunities are routinely missed to plan responses in advance for the reasonably predictable crises associated with many ultimately fatal medical problems. Certain issues in palliative and end-of-life care are unique to or particularly evident with children. For example, despite 1997 legislation (renewed in 2001, P.L.107-109) that has stimulated increased pediatric drug testing, some drugs used to treat pain, nausea, and other symptoms in adults have yet to be tested or labeled for use in infants, children, or adolescents. Pediatricians thus may have inadequate information to guide their choices of drugs and minimize dangerous side effects, and some may choose not to treat certain children rather than risk such complications and associated liability. To cite another example, although legal issues related to decisionmaking may be somewhat parallel for intellectually and emotionally immature children and for adults who suffer from progressive dementia, the real-life situations may unfold quite differently, particularly in cases of child–parent conflict. While still mentally competent, adults can create advance directives and other binding documents to guide their care if they suffer significant loss of decisionmaking capacity. As discussed in Chapter 8, only one state will recognize an advance directive signed by a minor, although pediatric professionals agree that children should be informed and involved in discussions about their care, consistent with their developmental status. Many children are born with rarely seen medical conditions, which creates uncertainty in diagnosis, prognosis, and medical management. Even for common medical problems, children’s general physiologic resiliency complicates predictions about survival and other outcomes. In situations laden with fear, anxiety, and desperation, this greater uncertainty complicates the physician’s and family’s efforts to assess and weigh the potential harms and benefits of treatment options. Further, many communities will not have enough children with life-threatening medical conditions to generate much local experience and clini-

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cal expertise. Seriously ill children and their families may, therefore, be more likely than adults to have to travel far from home for treatment. This may remove them from their usual sources of emotional and social support, disrupt parents’ employment, and strain family relationships and finances. Various programs for children with serious disabilities and other special needs help many families obtain and coordinate care for their child. These programs do not, however, cover all such children, especially in middle-income families, and they often require parents to understand and negotiate complicated eligibility and service requirements. Providers likewise may be frustrated by such requirements and by payment methods and levels that favor invasive medical and surgical procedures, discourage multidisciplinary care, and undervalue the time spent assessing children with grave problems, evaluating care strategies, and counseling and assisting their families. Many problems facing children with life-threatening medical conditions and their families and many shortcomings in palliative and end-of-life care are embedded in broader social, economic, and cultural problems. Large numbers of children and families lack public or private health insurance and have limited access to health services. Even when a child is covered through private or public insurance; some important services may not be reimbursed. If a child requires care from multiple providers of medical and other services, families may find this country’s fragmented health and social services systems to be confusing, unreliable, incomplete, and exhausting to negotiate. Even physicians, social workers, and others experienced with sick children and programs to serve them are frequently frustrated and stymied by these systems. In addition, children and young families are disproportionately represented among immigrants and thus are especially vulnerable to misunderstandings related to differences in cultural experiences and values about life, illness, death, and medical or nonmedical therapies. Many families lack the education or English-language skills that make communication and understanding of clinical and other information easier. Even in communities with large immigrant populations, skilled translators and translated materials tend to be scarce, putting the children and families at greater risk of inadequate or inappropriate care. Many immigrants also lack access to Medicaid or job-based health insurance. Millions of children, immigrants and native born, live with their families in unsafe environments that put them at high risk of intentional injury and certain kinds of unintentional injury. Such environments also can make it a challenge to get a child to the doctor, pick up a prescription, or persuade a home care provider to come into the neighborhood. These broader problems are not the focus of this report, but those seeking to improve

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pediatric palliative, end-of-life, and bereavement care must take them into account. IMPROVING PALLIATIVE, END-OF-LIFE, AND BEREAVEMENT CARE FOR CHILDREN AND THEIR FAMILIES We took a trip to Florida. It turned out to be just two weeks before Eric died, and he was on multiple medications. And the home health company UPS’d those supplies to Florida so they were waiting for us when we arrived . . . [The very ill mother of] a friend of mine . . . was told that if she left the home, she would lose her home health benefit. . . . I felt very blessed. Winona Kittiko, parent, 2001 The death of a child will never be easy to accept, and families may resist early explorations or discussions of hospice care, advance decisions about the use of life-support interventions, or other preparations for a child’s anticipated death. Nonetheless, health care professionals, insurers, policymakers, and others can do much to save children and families from preventable suffering. Although more research is needed to document the strengths and limitations of different care strategies, the last decade has seen a wide range of initiatives to improve palliative and end-of-life care and focus public attention on the need for individuals and communities to support changes in attitudes, policies, and practices that cause avoidable physical, emotional, and spiritual distress. Some recent initiatives focus specifically on understanding and improving care for children who die and their families and making it easier for families to obtain—and accept—palliative care without forgoing curative or life-prolonging treatments. Many of these projects are at an early stage and have not yet been fully implemented or evaluated. As discussed in Chapter 6, children’s hospitals play a major role in caring for children with medical conditions that are invariably or often fatal. Recognizing this, the Education Development Center in Massachusetts and several children’s hospitals—with funding from the Nathan Cummings Foundation, the Open Society Institute, and several other groups—have begun a collaborative project to help improve the quality and consistency of care provided by these specialized institutions to children and their families following the diagnosis of a life-threatening condition (Solomon et al., 2002; see http://www.ippcweb.org). This Initiative for Pediatric Palliative Care promotes the integration of family-centered palliative care with curative or life-prolonging treatments. Related objectives include the development of explicit policies and protocols for symptom management, communication, and decisionmaking and the assessment of

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performance through routine data collection. Other elements of this project include the development of quality indicators for family-centered pediatric palliative care and the creation of curriculum materials and learning strategies to improve practitioner competence. As wider use of sonograms and other diagnostic technologies has expanded the number of families who receive a prenatal diagnosis of a lethal or potentially lethal congenital anomaly, several organizations have developed perinatal hospice programs for parents who choose to or have no option but to continue the pregnancy (Sumner, 2001). For example, in 1995, the Madigan Army Medical Center began a program of support for families from the time of diagnosis through fetal death, stillbirth, or infant death and into bereavement (Calhoun and Hoeldke, 2000; see also Sumner, 2001). The American Academy of Pediatrics recently issued its first explicit policy statement and recommendations on palliative and end-of-life care for children (AAP, 2000g). The American Academy of Hospice and Palliative Medicine has designed a series of self-study modules for physicians who care for dying patients and their families that can be used in undergraduate and medical as well as continuing medical education (AAHPM, 2000). A new module will focus specifically on children. In 2001, the National Hospice and Palliative Care Organization began distributing a compendium of educational and practical resource materials on pediatric palliative care intended for clinicians and others in both hospices and hospitals (ChIPPS, 2001). A recent Institute of Medicine (IOM) report on palliative care for cancer included a chapter on children and families (IOM, 2001c). Several hospices and children’s hospitals have begun or are starting palliative care programs. One recent initiative comes as the result of congressional action directing the Centers for Medicare and Medicaid Services (CMS; formerly the Health Care Financing Administration) to support several demonstration projects to help Medicaid programs, hospices, and other organizations in five specified states develop and evaluate a Program for All-Inclusive Care for Children and their Families (PACC). The program is administered by Children’s Hospice International (CHI, 2002; see also http://www.chionline.org). These projects focus on children living with life-threatening medical conditions and their families. The idea is to develop and test models of continuous, integrated, and comprehensive pediatric palliative and end-of-life care similar to the Program of All-Inclusive Care for Elders (PACE) program, which was pioneered for older adults by OnLok Senior Health Services in California. As explained in Chapter 7, waivers of certain federal or state Medicaid requirements for the projects will remove some of the financial and regulatory barriers to such comprehensive care.

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A number of public and private organizations including the National Institute of Nursing Research, the National Cancer Institute, the Open Society Institute, and the Robert Wood Johnson Foundation are supporting various efforts by individuals and research coalitions (e.g., the Children’s Oncology Group) to strengthen the research base for palliative and end-of-life care for children and their families. These efforts involve clinical research as well as policy, organizational, educational, and behavioral research. For example, three studies have helped clarify the extent and limitation of Medicaid and private insurance coverage for palliative and end-of-life care (e.g., Gabel et al., 1998; Huskamp et al., 2001; Tilly and Wiener, 2001). Other research has assessed clinicians’ knowledge and effective use of therapies for children’s pain and other distress (see Chapter 3). Congress has substantially increased the incentives for research by pharmaceutical companies to tests drugs in children so that pediatricians, families, and child patients will have better information on which to base therapy decisions (see Chapter 10). STUDY ORIGINS AND REPORT OVERVIEW In 1993, the Institute of Medicine convened a small group to discuss the value and content of a study of end-of-life care. That group recommended that the IOM undertake to stimulate discussion and encourage consensus on directions for change in the care of dying patients (IOM, 1993). The IOM launched the study in 1995. The resulting report, Approaching Death: Improving Care at the End of Life (IOM, 1997), assessed the knowledge base for providing effective and compassionate end-of-life care and recommended steps that clinicians, educators, researchers, policymakers, and others could take to improve such care. Although the 1997 report was intended to address care across the age spectrum, this proved difficult in practice given that the overwhelming majority of deaths occur in adults, primarily those age 65 and over. Those under age 20 account for approximately 2 percent of deaths each year. Thus, most of the programs, policies, and research cited in the earlier report focused on older adults. This second study, which began late in 2000, examines the special needs and circumstances of children and their families and, again, suggests steps that clinicians, educators, researchers, policymakers, and others can take to improve care. The IOM, which is the health policy arm of the National Academy of Sciences, appointed an expert committee of 14 members to prepare this report. Their charge was to describe the major causes and settings of death for children; review what is known about (1) the medical and other services

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provided to dying children and their families and (2) the education of physicians and other professionals who care for gravely ill children; assess the state of knowledge about clinical, behavioral, cultural, organizational, legal, and other important aspects of palliative and end-of-life care for children and their families; examine methods for communicating information, determining family and child/ patient preferences, resolving conflicts, and evaluating the quality of palliative and end-of-life care as experienced by children and their families; and propose a research and action agenda to strengthen the scope and application of the knowledge base for providing effective and compassionate palliative and end-of-life care for children and their families. This report presents the committee’s analysis and recommendations. The committee recognizes that while much can be done now to support children and families, much more needs to be learned. The analysis and recommendations included here reflect current knowledge and judgments, but new research and insights will undoubtedly suggest modifications and shifts in emphasis in future years. Appendix A describes the committee’s information-gathering strategies, which included a public meeting at which interested professional, family, and advocacy groups presented statements and a smaller meeting with families of children who had died or were living with life-threatening medical conditions. The remainder of this chapter describes some of the basic principles that guided the committee’s work and reviews a number of concepts important in an examination of palliative and end-of-life care for children and their families. Chapter 2 presents a profile of death in childhood. That profile and the concepts and principles discussed in this chapter provide a foundation for subsequent examination of the clinical, social, financial, and other practices and policies needed to support effective, flexible, and compassionate palliative and end-of-life care for children and their families. To underscore the variability in the pathways followed by children who die and their families and set the stage for the discussion in Chapters 4, 5, and 6, Chapter 3 reviews several prototypical trajectories of death in childhood. It also presents a number of case histories that further illustrate this variability and the challenges it presents for families, health care providers, policymakers, and others. The last part of the chapter reviews the limited research investigating the nature and adequacy of palliative and end-of-life care for children and their families. Chapter 4 considers several questions of concern to children and families faced with a child’s serious medical problem: What is happening to me?

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What is happening to my child? What are our choices? How will you help us? Chapter 5 considers the basic dimensions of palliative and end-of-life care: physical, emotional, spiritual, and practical as they should engage all those who regularly care for children with life-threatening medical problems and their families. The chapter also discusses bereavement care. In Chapter 6, the focus is on caregivers and care settings. The availability and elements of palliative and end-of-life care in the hospital and at home are reviewed as are strategies for reducing the burdens that families experience in coordinating care for their child within this country’s fragmented health care system. Chapter 7 examines the financing of palliative and end-of-life care for children and their families. It discusses how financing policies and their implementation can create obstacles to effective and compassionate care. Chapter 8 presents an overview of ethical and legal issues that health care professionals, administrators, policymakers, and families may confront in deciding about care for children with life-threatening medical conditions. Chapter 9 discusses what is known about how health care professionals are or can be educated to care for children and families living with a child’s life-threatening medical condition. Because the knowledge base for effective pediatric palliative and end-of-life care is so limited, Chapter 10 describes directions for clinical and health services research and examines some of the ethical and practical issues in involving children, especially seriously ill children, in research. In addition, the report includes several appendixes that explore certain issues in greater detail. Appendix B discusses efforts to develop quantitative tools that provide more accurate estimates of prognosis, especially for infants. The challenge of measuring quality of life for seriously ill or dying children is examined in Appendix C. Appendix D reviews issues of cultural sensitivity in palliative, end-of-life, and bereavement care for children and families, and Appendix E discusses bereavement following the death of a child. A large fraction of children’s deaths result from sudden and unexpected events, and Appendix F discusses the role of emergency medical services providers in caring for these children and their families. Appendix G reviews the current state of education in pediatric palliative care. Appendix H describes the planning for one of the PACC projects mentioned earlier. These appendices are available only online (http://www.nap.edu/catalog/10390.html). GUIDING PRINCIPLES Early in the course of this study, the committee concluded that the basic working principles or starting points set forth early in the 1997 IOM report applied to children as well as adults, although the specifics sometimes

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Box 1.1 Working Principles for Pediatric Palliative, End-of-Life, and Bereavement Care Appropriate care for children with life-threatening medical conditions and their families is designed to fit each child’s physical, cognitive, emotional, and spiritual level of development. Good care involves and respects both the child and the family. Families are part of the care team. Effective and compassionate care for children with life-threatening conditions and for their families is an integral and important part of care from diagnosis through death and bereavement. Professionals caring for children have special responsibilities for educating themselves and others about the identification, management, and discussion of the last phase of a child’s fatal medical problem. Both individual change and organizational change are needed to provide consistently excellent palliative, end-of-life, and bereavement care for children and their families. More and better research is needed to increase our understanding of clinical, cultural, organizational, and other practices or perspectives that can improve palliative, end-of-life, and bereavement care for children and families. differ. The committee also recognized additional values that apply either uniquely or with special emphasis to children. The working principles that guided this committee are summarized in Box 1.1 and discussed below. The first three are specific to children; the remainder restate the earlier principles from the 1997 report in terms of children. Appropriate care for children with life-threatening medical conditions and their families is designed to fit each child’s physical, cognitive, emotional, and spiritual level of development. As is often emphasized, children are not small adults. From birth to adulthood, their physical, intellectual, spiritual, and emotional characteristics, needs, and capacities change in relatively predictable ways, although individual children may vary in the pace and details of their development. For children and families living with life-threatening medical problems, developmental science should guide both the formulation and adaptation of care plans appropriate for the individual child and the information and support provided to the family. Good care involves and respects both the child and the family. For clinicians who care for children, it is a norm of practice to consider the family as the unit of care. Family most commonly means parents, siblings, and other close relatives, but it may be used more broadly to include legal guardians as well as close friends such as godparents, neighbors, and school-

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mates. For families, respect means being sensitive to their culture, values, and resources. It also means understanding and supporting the need of mothers and fathers to be “good parents” as they provide and make decisions about medical care for their child. For children, respect means being sensitive to their goals and values, their suffering, their maturity and desire to participate in decisions about their care, and the ways in which different care strategies may help them live as normally as possible given their circumstances. Families are part of the care team and need full information and support to perform well. Parents are key decision makers and usually are key providers of physical and emotional care for their child, not only at home but also in hospitals. Like other caregivers, parents need appropriate training and information to function effectively. At the same time, for physicians and the rest of the health care team, parents are also part of the unit of care—along with their child. Although parents may cherish every minute of care they provide to an ill child, other caregivers should be alert to excessive strain on parents from a physically, emotionally, or technically demanding regimen of caregiving. Competent, consistent, and compassionate palliative, end-of-life, and bereavement care is an integral and important part of pediatric care in all settings, from diagnosis of a child’s life-threatening medical problem through death and bereavement—if death is the outcome. As stated in the 1997 IOM report, those who are dying “deserve attention that is as thorough, active, and conscientious as that provided to those for whom disease prevention, diagnosis, cure, or rehabilitation are still dominant goals. Individual and system failures to care humanely for dying patients—including failures to use existing knowledge to prevent and relieve distress—should be viewed as clinical and ethical failures” (IOM, 1997, p. 22). All those who care for children who may die should examine their own practices and their institutional context to identify areas for improvement. To guide their own judgments and those of the families that depend on them, clinicians must have a solid scientific and clinical understanding of appropriate symptom assessment and management and of the potential benefits and harms of life-prolonging technologies. They then must help families develop the understanding of these issues that they need to make informed decisions. Good communication skills and compassion are critical. Parents of children with life-threatening medical conditions are unusually vulnerable to misunderstanding communication that is not attentive to their shock, fear, numbness, confusion, grief, and need for hope. Children’s ability to understand their situation and their interest in participating in care decisions will vary depending on their intellectual and emotional maturity and personal characteristics. Professionals caring for children have special responsibilities for educating themselves and others about the identification, management, and

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discussion of the last phase of a child’s fatal medical condition. Much of the emotional, practical, spiritual and other support needed by children who die and their families will come from within the family. Friends and neighbors, members of their faith community or other social groups, schoolmates and teachers, coworkers, and others outside the medical world may also offer significant support. Nonetheless, perhaps more than for aged adults, physicians, nurses, and other medical personnel play a central role for children who die, in part because parents usually want every medical option to save or extend the life of their child. Clinicians have a moral responsibility to educate themselves about what constitutes good physical and emotional care for dying children and appropriate and sensitive support for their families. Both individual change and organizational change are needed to provide more effective and consistent palliative, end-of-life, and bereavement care. The commitment of clinicians, researchers, and policymakers to saving children’s lives and restoring them to health is powerful and beneficial. Acceptance that cure or meaningfully prolonged life is not possible is painful and difficult—so difficult that some clinicians and parents may not recognize that they are pursuing treatments that bring suffering without benefit. Physicians and other professionals may not commit themselves fully to understanding, assessing, preventing, and relieving pain and other distress. They may even draw away from children and families when death is inevitable and fail to support grieving family members after a child’s death. Efforts to change individual attitudes, knowledge, and behavior are essential, but they are unlikely to succeed without supportive organizational, professional, legal, and financial structures. It should not be so difficult—as it is today—to provide timely, coordinated, reliable, effective, and compassionate palliative care for children and adults alike. More and better research is needed to improve palliative, end-of-life, and bereavement care for children and families. For children even more than for adults, the knowledge base for good palliative and end-of-life care is limited in all areas including physiological, psychosocial, and policy research. Research involving infants, children, and adolescents often involves particular practical and ethical challenges. Still, researchers and research funders have a responsibility to identify questions important to improving pediatric palliative and end-of-life care that can be feasibly and ethically studied. Although protection of children and close oversight of potential risks and burdens are essential, research involving children is also essential and can be undertaken ethically and responsibly. Such research is critical to fill gaps in clinicians’ understanding of steps that can help prevent or relieve the suffering of children and their families and also to provide them with tested medications and other strategies for doing so.

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CONCEPTS AND DEFINITIONS This section considers a number of terms widely used in discussions of childhood and in discussions of death. Other concepts are defined and discussed in later chapters (e.g., child- and family-centered care in Chapter 6). Child This report uses the terms child and children very generally to cover the age spectrum from birth through the teenage years. Without taking a position in the moral and legal debate over what constitutes personhood, the report also considers efforts to support families facing a prenatal diagnosis of a lethal congenital condition. Further, although it is not the focus of this report, the committee recognizes the grief of parents who suffer the death of an adult daughter or son. As they move from birth into adulthood, children are constantly changing and developing physiologically, intellectually, and emotionally. Chronological age is often less important than an understanding of a child’s physical, cognitive, emotional, and spiritual development and the medical, social, and other support appropriate to different stages of development. Definitions of the periods of childhood vary somewhat and reflect a mix of biological and social considerations (see, e.g., Needlman, 2000). In general, a neonate is a child from birth through 4 weeks of age (under 28 days). An infant is a child from 4 weeks of age through the end of the first year of life. (See Chapter 2 for more terminology related to infants and fetuses.) A toddler is often described as a 1 to 3-year old. Preschool children—ages 2 or 3 through 4 or 5 years—are often distinguished from school-age children. An adolescent is sometimes described as a child from 13 through 17 or 19 years of age, but children 10 through 14 may be described as pre- and early adolescents and those 15 through 19 as middle and late adolescents.1 At 18, a person may make his or her own decisions about matters such as health care and advance directives without parental consent. The need for clarity in the definition of age groupings is obvious for statistical comparisons and analyses involving, for example, leading causes of death among different demographic groups. 1   Some of those involved with adolescent health services identify the transition period to adulthood as extending into the third decade of life (SAM, 1995; Stepp, 2002). The spectrum of pediatric or adolescent care may also be stretched to cover the situation of children with conditions such as congenital heart disease or cystic fibrosis who survive into adulthood and continue to benefit from care and support provided by their pediatric care team.

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Family As noted earlier, family generally refers to parents (or legal guardians), siblings, grandparents, and other close relatives. It sometimes is used more broadly to include godparents, playmates, girlfriends or boyfriends, and others close to the child or immediate family. In certain contexts, particularly those involving decisionmaking, family may occasionally be used as a synonym—when the meaning is clear—for parents or legal guardians. As noted earlier, even people who have no personal tie to a child who dies or to the surviving family may experience a sense of loss when they learn of a child’s death and feel a strong connection with the family’s grief. Palliative Care, End-of-Life, and Hospice Care Although some use palliative care and hospice or end-of-life care interchangeably, the committee views palliative care more broadly as care that seeks to prevent, relieve, reduce, or soothe the symptoms produced by serious medical conditions or their treatment and to maintain patients’ quality of life.2 The benefits of such care are not limited to people thought to be dying or those enrolled in hospice programs. Rather, “palliative care is a model of caring for patients and their families who suffer from life-threatening illnesses” (AAP, 2000g, p. 351). As used in this report, palliative care also considers the needs of patients and families for timely, accurate, and compassionate provision of information about their diagnosis, prognosis, and treatment options, including the benefits and burdens of treatments. Such information assists patients and families in making decisions. Palliative care does not itself focus on cure, but it can be provided concurrently with curative or life-prolonging care. Effective anticipation, 2   See, for example, American Heritage Dictionary (1992); Stedman’s Medical Dictionary (1995). In contrast, the World Health Organization defines palliative care more narrowly as “the active total care of patients whose disease is not responsive to curative treatment . . . [when] control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount” (WHO, 1990, p.11). Another source refers to the “appropriate medical care of patients with advanced and progressive disease for whom the focus of care is quality of life and in whom prognosis is limited (although sometimes it may be several years)” (Association of Palliative Medicine of Great Britain and Ireland, cited in ABIM, 1996a). Similarly, the definition prepared in Great Britain in 1987 when palliative care was first recognized as a specialty defines palliative medicine as the “study and management of patients with active, aggressive, far-advanced disease for which prognosis is limited and the focus of care is quality of life” (Doyle et al., 1998, p.3). Billings defines palliative care as an interdisciplinary approach to the comprehensive management of physical, psychological, social and spiritual needs for patients who have progressive incurable illnesses (Billings, 1998).

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prevention, and relief of pain and other physical and emotional distress may, in fact, be essential for patients to tolerate demanding treatment regimens. For children who live into adulthood with difficult chronic conditions and experience periodic medical crises, palliative care is also important to prevent unnecessary physical and emotional suffering. In sum, good palliative care following the diagnosis of fatal or potentially fatal condition should help children who survive as well as children who die. All those regularly involved in caring for patients with life-threatening medical problems have roles to play in the delivery of palliative care as defined here. In addition to the meticulous management of pain and other physical symptoms, palliative care emphasizes the emotional, spiritual, and practical needs of patients and those close to them—from the time of diagnosis through death and bereavement. Helping people live well in the presence of life-threatening medical conditions (and their treatments) requires both compassion and sophisticated strategies and tools for measuring, preventing, and reducing the physical, psychological, and other burdens often associated with such conditions and their treatment. End-of-life care has no precise meaning (see the discussion below of end-of-life, dying, and death). The term is used in this report to describe care that focuses on preparing for an anticipated death (e.g., advance discussion about using life-support technologies in case of cardiac arrest or other crises, arranging a last family trip, notifying relatives and friends) and managing the end stage of a fatal medical condition (e.g., removing a breathing tube, adjusting symptom management to reflect changing physiology as death approaches). The term hospice may be used to describe a philosophy, a program of care, or a site of care (e.g., a unit in a hospital or other facility). Most commonly, and in this report, hospice refers to an organization or program that provides, arranges, coordinates, and advises on a wide range of medical and supportive services for dying patients and those close to them. The great majority of hospice care is provided at home to elderly adults with chronic conditions, although hospices also provide care for residents of nursing homes and, less commonly, assist with hospitalized patients. Most hospice services that are provided to elderly people are financed by Medicare. For this reason, hospice care and the Medicare hospice benefit are often, but incorrectly, considered synonymous. As discussed in Chapter 7, the Medicaid hospice benefit follows the Medicare model, but private insurance coverage sometimes is more flexible. Hospice care may also be covered by philanthropy or direct payments from families. Terms such as comfort care or supportive care are sometimes used as synonyms for palliative or hospice care by those who believe that they are more understandable and acceptable to patients and their families. Because hospice is so closely associated with end-of-life care and because a child’s

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death is especially hard to accept, hospices may similarly devise different names for their pediatric programs as well as rethink their models of care. As noted later in this report, parents may dread—even hate the thought of—hospice care and may be reluctant to participate in explicit discussions about their child’s prognosis, recognize the burdens of certain treatments, or prepare for their child’s death. The broad principles of palliative and end-of-life care apply to children as well as adults. Nonetheless, differences in children’s anatomy, physiology, psychosocial and cognitive development, and social and legal status require that assessment, treatment, communication, prognostic, and decisionmaking strategies be adapted to each child’s level of development. Grief and Bereavement Grief is the term usually used to describe people’s feelings and behaviors in response to death. Sadness, numbness, anger, sleep disturbances, inability to concentrate, fatigue, and similar feelings and behaviors are normal responses to a loved one’s death. Research suggests that the death of a child prompts more intense grief than the death of a parent or spouse. (See Appendix E.) Anticipatory grief often occurs in advance of an expected loss. Such losses may include not only death but also losses of expectations for a “normal” life, for example, following diagnosis of a child’s serious physical or cognitive disability. Anticipatory grief may be experienced by children with potentially fatal medical problems as well as by those close to them. Bereavement describes the situation or fact of having experienced loss through death rather than to the emotional content of the experience. Mourning sometimes refers to the social rituals and expressions of grief (IOM, 1984) and sometimes to the psychological process of adapting to loss (Silverman, 2000). Rather than talk of recovery or closure following bereavement, experts in grief and bereavement prefer the concepts of emotional reconstruction or reconstitution. Complicated grief or bereavement refers to a response to loss that is more intense and longer in duration than usual (Prigerson and Jacobs, 2001). Although bereavement is a term usually applied to family members, feelings of grief may be shared by many others who have known the child or who feel close to the family. The physicians, nurses, and others who care for a child who dies may grieve, whether or not they feel able to express it. Families may feel comforted and supported when these caregivers communicate that they too grieve the child’s death, even as they also offer other support including follow-up information about the child’s death (e.g., after a pathologist’s or medical examiner’s report), referrals to bereavement support groups, and inquiries about the physical and emotional status of par-

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ents, siblings, and other family members. Increasingly, researchers and others are considering the grief experienced by those who care for children who die and their families (see, e.g., Rushton, in press; Browning, in press). The End of Life, Dying, and Death The end of life can come at any age, including infancy. Nonetheless, because death now typically comes in old age, it is natural for Americans to think of that time as life’s end. Today, life ended in childhood seems an affront to the natural order of things, different from the sad but commonplace fate of children in earlier times or distant places. The IOM’s 1997 report noted that dying is not a precise descriptive or diagnostic term. Usually, people referred to as dying have a condition from which they are likely to die within a few days to several months. Nonetheless, concern also extends to people with progressive conditions expected to end in death but perhaps not for years. The definition of death is less important for this report than the identification of clinically, ethically, and legally appropriate ways to make decisions and manage care at the end of life. Nonetheless, some concerns do surround the definition of death and application of criteria for declaring death—in particular, brain death (or death by brain criteria). Today, there is widespread but not complete consensus that death occurs either with the irreversible cessation of circulatory and respiratory functions or with the irreversible cessation of all functions of the brain, including the brain stem (see, e.g., President’s Commission, 1981; Capron, 2001). Generally accepted criteria for determining brain death require a series of neurological and other assessments, although some jurisdictional and institutional differences exist in details such as who can determine brain death and how long a patient must be observed (Wijdicks, 2001). For children, special guidelines apply. They generally specify two assessments separated by an interval of at least 48 hours for those 1 week to 2 months of age, 24 hours for those ages 2 months to 1 year, and 12 hours for older children; additional confirmatory tests may also be advisable under some circumstances. (Brain death criteria are normally not applied to infants less than 7 days old.3) Researchers have found inconsistencies in the application of pediatric brain death criteria (Lynch and Eldadah, 1992; Mejia and Pollack, 3   Because of the unique physiologic changes of brain blood flow during the period of transition from fetus to newborn infant, the brain death criteria developed for adults and older infants and children have not proven useful for infants less than a week old. Currently, no clinically applicable criteria for brain death for newborn infants less than 1 week of age are available.

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1995), and professional and parental confusion about the concept has been documented (see, e.g., Harrison and Botkin, 1999). Declaration of brain death, particularly following traumatic injuries, often permits organ donation, an option that allows many parents to feel that some good will come from their tragic loss. Sometimes, the declaration of death may be somewhat delayed beyond the period required by protocols to provide families more time to understand their child’s situation and to say their good-byes. Life-Threatening and Fatal Conditions The term life-threatening condition has no common definition. For purposes of this report, life-threatening conditions are those that (1) carry a substantial probability of death in childhood, although treatment may succeed in curing the condition or substantially prolonging life, and (2) are perceived as potentially having a fatal outcome. For example, children with Down syndrome have lower-than-average life expectancy, but the condition is not usually viewed as life threatening unless a child has associated anomalies likely to prove fatal in infancy or childhood. As used in this report, a life-shortening or fatal medical condition is one that is not curable and will end in premature death, especially during childhood.4 Although such a prognosis for some medical problems may be very clear to clinicians, parents may not accept that their child will die, even when death is very near. Determination of prognosis is not, however, a precise science, and it is often not possible to identify far in advance which children with life-threatening problems will die. (See Appendix B.) For example, although the fatality rate is high for extreme prematurity, many infants survive after being near death. Whether or not the eventual outcome of a child’s medical problem is death, the needs of children and their families for physical, emotional, spiritual, and practical support and for accurate information will often be similar and substantial during much of the time following diagnosis of a life-threatening medical problem. The combination of medical uncertainty and families’ need to maintain hope reinforces the principle that palliative care should be integrated with curative and life-prolonging care from the time a life-threatening problem is diagnosed. 4   Some use the term life limiting to refer to these conditions (see, e.g., ACT, 1997). This term is potentially confusing because various nonfatal conditions can be life limiting in the sense that they limit people’s quality of life or limit their ability to undertake activities of daily living.

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Pathways or Trajectories of Dying Chapter 2, which reviews mortality data for children, makes clear that death comes to children in many different ways, although certain pathways are more common than others. For many infants born very prematurely or with lethal birth defects, death usually comes soon after birth. For many other children, death comes suddenly and with no forewarning following intentional or unintentional injuries. (Even for children with progressive fatal conditions who experience and survive several medical crises, death from a final crisis may still be regarded by parents as unexpected.) Some children die of serious but potentially curable illnesses such as cancer, perhaps after an extended period of apparent recovery. The demands on physicians and others will vary for each of these and other pathways. Chapter 3 includes case histories that further illustrate this point. For an increasing number of conditions, technologies such as bone marrow and organ transplantation have blurred the pathways of dying. They offer a last chance, possibly very small, of significantly prolonged survival, often with a diminished but—for many—still acceptable quality of life. For inherited genetic conditions such as cystic fibrosis or neurodegenerative disorders, parents may hope their child will live long enough to benefit from gene therapy or some other as yet unproven or undiscovered treatment. These hopes affect discussions with physicians about treatment goals and sometimes interfere with preparations for death, including decisions about resuscitation in the event of cardiopulmonary arrest. Extending Life, Prolonging Death Life-extending or life-prolonging interventions can add decades, years, months, weeks, days, or minutes of life for a child with a serious medical problem. At some point, the balance of the expected benefits and burdens of efforts to cure or prolong life may shift decisively. The intervention cannot meaningfully extend life but can only prolong dying and suffering. As discussed later in this report, both clinicians and parents may be reluctant to recognize or accept such a shift in the balance of benefits and burdens and may continue nonbeneficial treatments, sometimes to their later regret. Differences in understanding or perceptions of benefits and harms are at the heart of many difficult discussions among family members, clinicians, and others involved in decisions about end-of-life care. This report uses the terms life support and life-sustaining treatment to describe interventions or technologies such as cardiopulmonary resuscitation or mechanical ventilation that can maintain vital functions temporarily

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during and after major surgery or following medical crises. In some situations, these interventions may only prolong a patient’s dying. Antibiotics, artificial hydration, and other common therapies may likewise, in some situations, merely prolong dying and suffering. Quality of Life, Quality of Dying Many clinicians, researchers and policymakers are now familiar with the concept of health-related quality of life, which emphasizes health as perceived and valued by people for themselves (or, in some cases, for those close to them) rather than as seen by experts (see, e.g., Cohen and Mount, 1992; Patrick and Erickson, 1993; Gold et al., 1996). Measures of health-related quality of life include physical, mental, social, and role functioning; sense of well-being; freedom from bodily pain and other physical distress; satisfaction with health care; and overall sense of general health. Many people who have medical problems that are likely to cause their death can spend months or years living well despite the boundaries posed by their condition and its treatment. Increasingly, those who are working to improve palliative and end-of-life care for children and adults emphasize the goal of living as fully or normally as possible in the face of death. The still-evolving concept of the quality of dying focuses on a person’s experience of living as death comes near (Wallston et al., 1988; Byock, 1997; Patrick et al., 2001). In the special world of the dying patient, some physical outcomes become increasingly less possible, while other outcomes, such as a sense of peace or spiritual transcendence, may become more meaningful. The world of the dying child is less understood, particularly the ways in which goals, concerns, and perceptions relate to developmental changes. Nonetheless, as discussed in this report, even young children may have spiritual and existential concerns, seek meaning in their short lives, and have goals to achieve before they die. Efforts to measure these concepts present many challenges. As Appendix C describes, measuring quality of life for children, especially very young or developmentally delayed children, presents special difficulties related to their ability to communicate their needs or feelings. Regardless of age, measuring the quality of dying is difficult because it is often unclear when someone is “dying” and because patients may be unable to respond to questions as a result of their condition or medications. Researchers and others frequently rely on reports from parents, especially through after-death interviews, but family members and patients may diverge in their ratings of a patient’s pain, anxiety, and other physical or psychological distress.

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Good and Bad Deaths References to “good” deaths appear less commonly in discussions of children who die than in recollections of the deaths of elderly family members or friends. This undoubtedly reflects, in part, the different cultural perception of death at a young age that has come with the last century’s sharp reductions in child mortality in this country. Nonetheless, the committee believes that, in general, an earlier IOM committee’s characterizations of “good” and “bad” deaths apply when death comes to a child (IOM, 1997, p. 24): A decent or good death is one that is: free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients’ and families’ wishes; and reasonably consistent with clinical, cultural, and ethical standards. A bad death, in turn, is characterized by needless suffering, dishonoring of patient or family wishes or values, and a sense among participants or observers that norms of decency have been offended. As noted by the earlier committee, notions of a good death may reflect values of a dominant culture that some may not share. Thus, it proposed that “a humane care system is one that people can trust to serve them well as they die, even if their needs and beliefs call for departures from routine practices or idealized expectations of caregivers” (IOM, 1997, p. 24). This kind of trustworthiness—and the competence, sensitivity, and flexibility it demands—is integral to good palliative, end-of-life, and bereavement care for both children and adults.