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When Children Die examines what we know about the needs of these children and their families, the extent to which such needs are—and are not—being met, and what can be done to provide more competent, compassionate, and consistent care. The book offers recommendations for involving child patients in treatment decisions, communicating with parents, strengthening the organization and delivery of services, developing support programs for bereaved families, improving public and private insurance, training health professionals, and more. It argues that taking these steps will improve the care of children who survive as well as those who do not—and will likewise help all families who suffer with their seriously ill or injured child.
Featuring illustrative case histories, the book discusses patterns of childhood death and explores the basic elements of physical, emotional, spiritual, and practical care for children and families experiencing a child’s life-threatening illness or injury.
Improving Palliative and End-of-Life Care for Children and Their Families
Copyright © 2003 National Academy of Sciences
All right reserved.
We are in need of medicine with a heart.... The endless physical, emotional, and financial burdens that a family carries when their child dies ... makes you totally incapable of dealing with incompetence and insensitivity.
Salvador Avila, parent, 2001
The death of a child is a special sorrow, an enduring loss for surviving mothers, fathers, brothers, sisters, other family members and close friends. No matter the circumstances, a child's death is a life-altering experience.
Except when death comes suddenly and without forewarning, physicians, nurses, social workers and other health care personnel usually play a central role in the lives of children who die and of their families. At best, these professionals will exemplify "medicine with a heart," helping all involved to feel that they did everything they could to help, that preventable suffering was indeed prevented, and that the parents were good parents. At worst, families' encounters with the health care system will leave them with painful memories of their child's unnecessary suffering, bitter recollections of careless and wounding words, andlifelong regrets about their own choices. In between these poles of medicine, families will often experience both excellent care and incompetence, compassion mixed with insensitivity, and choices made and then later doubted.
Moving the typical experience of children and families toward the best care and entirely eliminating the worst care is an achievable goal. It is a goal that will depend on shifts in attitudes, policies, and practices involving not only health care professionals but also those who manage, finance, and regulate health care. That is, it will require system changes, not just individual changes. Improvement will also require more clinical and health services research to fill gaps in our knowledge of what constitutes the "best" palliative, end-of-life, and bereavement care for children and families with differing needs, values, and circumstances.
Viewed broadly, palliative care seeks to prevent or relieve the physical and emotional distress produced by a life-threatening medical condition or its treatment, to help patients with such conditions and their families live as normally as possible, and to provide them with timely and accurate information and support in decisionmaking. Such care and assistance is not limited to people thought to be dying and can be provided concurrently with curative or life-prolonging treatments. End-of-life care focuses on preparing for an anticipated death (e.g., discussing in advance the use of life-support technologies in case of cardiac arrest or other crises or arranging a last family trip) and managing the end stage of a fatal medical condition (e.g., removing a breathing tube or adjusting symptom management to reflect changing physiology as death approaches). Together, palliative and end-of-life care also promote clear, culturally sensitive communication that assists patients and families in understanding the diagnosis, prognosis, and treatment options, including their potential benefits and burdens.
The death of a child will never be easy to accept, but health care professionals, insurers, educators, policymakers, and others can do more to spare children and families from preventable suffering. Although research is needed to assess systematically the strengths and limitations of different care strategies, promising models exist now in programs being undertaken by children's hospitals, hospices, educational institutions, and other organizations. Some of these programs focus on better preparing pediatricians and other child health specialists to understand and routinely apply the principles of palliative and end-of-life care in their practice. For example, some pediatric residency review committees have added requirements for training in aspects of palliative, end-of-life, and bereavement care. Other innovative programs aim to identify and reform specific clinical, organizational, and financing policies and practices that contribute to care that is ineffective, unreliable, fragmented, or financially out of reach. The federal government is sponsoring several demonstration projects to test modifications in current Medicaid policies to improve care coordination and access, and some private health plans are also making coverage of hospice and palliative care for children more flexible.
This report builds on two earlier Institute of Medicine (IOM) reports-Approaching Death: Improving Care at the End of Life (1997) and Improving Palliative Care for Cancer (2001). It continues their arguments that medical and other support for people with fatal or potentially fatal conditions often falls short of what is reasonably, if not simply, attainable. Specifically, this report stresses the following themes:
The death of a child has a devastating and enduring impact.
Too often, children with fatal or potentially fatal conditions and their families fail to receive competent, compassionate, and consistent care that meets their physical, emotional, and spiritual needs.
Better care is possible now, but current methods of organizing and financing palliative, end-of-life, and bereavement care complicate the provision and coordination of services to help children and families and sometimes require families to choose between curative or life-prolonging care and palliative services, in particular, hospice care.
Inadequate data and scientific knowledge impede efforts to deliver effective care, educate professionals to provide such care, and design supportive public policies.
Integrating effective palliative care from the time a child's life-threatening medical problem is diagnosed will improve care for children who survive as well as children who die-and will help the families of all these children.
The report recognizes that while much can be done now to support children and families, much more needs to be learned. The analysis and recommendations reflect current knowledge and judgments, but new research and insights will undoubtedly suggest modifications and shifts in emphasis in future years.
CONTEXT AND CHALLENGES
In the United States and other developed countries, many infants who once would have died from prematurity, complications of childbirth, and congenital anomalies (birth defects) now survive. Likewise, children who previously would have perished from an array of childhood infections today live healthy and long lives, thanks to sanitation improvements, vaccines, and antibiotics. In the space of a century, the proportion of all deaths in the United States occurring in children under age 5 dropped from 30 percent in 1900 to just 1.4 percent in 1999. Infant mortality dropped from approximately 100 deaths per 1,000 live births in 1915 to 7.1 per 1,000 in 1999. Nonetheless, children still die. Approximately 55,000 children ages 0 to 19 died in 1999.
Patterns of child mortality differ considerably from patterns for adults, especially elderly adults who die primarily from chronic conditions such as heart disease and cancer. Palliative, end-of-life, and bereavement care must take these differences into account. As shown in Figure S.1, about half of all child deaths occur during infancy. Most of these deaths occur soon after birth from congenital abnormalities or complications associated with pre-maturity, pregnancy, or childbirth. For older infants, sudden infant death syndrome (SIDS) is an important cause of death.
For older children and teenagers, unintentional and intentional injuries are the leading causes of death. Overall, injuries account for approximately 30 percent of child deaths (Figure S.2). Given the importance of sudden and unexpected deaths from injuries and SIDS, efforts to improve care for children and to provide support for bereaved families must extend to emergency first-response personnel, including police, emergency department staff, and staff of medical examiners' offices. Among fatal chronic conditions, the most important are cancers, diseases of the heart, and lower respiratory conditions.
Common Problems Experienced by Both Children and Adults
Some deficits in palliative and end-of-life care for children parallel those experienced by adults. For example, frightened and upset patients and families may receive confusing or misleading explanations of diagnosis, prognosis, and treatment 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 drives decisionmaking. Patients at all ages suffer from inadequate assessment and management of pain and other distress, despite the ready availability of therapies known to help most patients. For both children and adults, physicians may advise and initiate treatments without adequate consideration or explanation of their potential to cause additional suffering while offering no or virtually no potential for benefit. Because clinicians, patients, and families are reluctant to discuss death and dying, opportunities are routinely missed to plan responses for the reasonably predictable crises associated with many fatal medical problems. Failures to prepare for death may deprive families of the chance to cherish their last time with a loved one and say their final goodbyes.
Further, if children or adults require complex care from multiple providers of medical and other services, they and their families may find this country's fragmented health and social services systems to be confusing, unreliable, incomplete, and exhausting to negotiate. Even experienced physicians, social workers, and others are frequently frustrated and stymied by these systems. At the same time, patients, families, and providers may feel that they are in a constant battle with health plans over coverage and payment policies that favor invasive medical and surgical procedures, discourage interdisciplinary care, and undervalue palliative services, including the time needed to fully and effectively inform and counsel patients and families facing fatal or potentially fatal conditions. Other children and adults suffer because they lack health insurance altogether.
Issues Unique to or Particularly Evident with Children
Notwithstanding these common problems, certain concerns in palliative, end-of-life, and bereavement care are unique to or particularly evident with children. As is often emphasized, children are not small adults. Clinicians, parents, and others working with ill or injured children must consider developmental differences among infants, children, and adolescents that may affect diagnosis, prognosis, treatment strategies, communication, and decisionmaking processes.
Many children who die are born with rarely seen medical conditions, which creates substantial uncertainty in diagnosis, prognosis, and medical management. Even for common medical problems, children's general physiologic resiliency complicates predictions about their future. In situations laden with fear, anxiety, and desperation, this greater uncertainty adds to the burdens on physicians and families as they try to assess the potential benefits and harms of treatment options and make hard decisions. Further, many communities will not have enough cases of various life-threatening medical conditions in children to generate much local experience and clinical expertise in their evaluation and management, including end-of-life care. As a result, seriously ill children and their families must often travel far from home for treatment, which removes them from their usual sources of emotional support and may disrupt parents' employment and strain family relationships and finances.
While still mentally competent, adults can create advance directives and other binding documents to guide their care if they later suffer significant loss of decisionmaking capacity. In contrast, states, almost without exception, will not recognize a formal advance directive signed by a minor, even a minor living independently. In most situations, parents have legal authority to make decisions about medical treatments for their child.
Many problems facing children with life-threatening medical conditions and their families and many shortcomings in end-of-life care are embedded in broader social, economic, and cultural problems. Unlike virtually all elderly adults, who are covered by Medicare, approximately 15 percent of children lack public or private health insurance. Children with insurance are covered by myriad private and state programs that have widely differing but poorly documented policies and practices for covering palliative, end-of-life, and bereavement services. On the one hand, this diversity of insurance sources could encourage innovation; on the other hand, it makes it extraordinarily difficult to identify and correct deficiencies in any comprehensive way.
In addition, children and young families are disproportionately represented among immigrants and thus are especially vulnerable to misunderstandings related to differences in language, cultural experiences, and values about life, illness, death, and medical or nonmedical therapies. Millions of children, both immigrants and native born, live with their families in unsafe environments that put them at high risk of injury. Such environments can also 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 subject of this report, but their contribution to deficits in care for children and their families should be recognized in strategies to improve pediatric palliative, end-of-life, and bereavement care.
In general, the basic working principles and starting points set forth in the 1997 IOM report apply to children as well as adults. Some details differ, however, and certain additional values apply either uniquely or with special emphasis to children. Of the principles adopted by this committee (Box S.1), the first three are specific to children; the other four restate earlier principles from the 1997 report in terms of children.
PROVIDING AND ORGANIZING CHILD- AND FAMILY-CENTERED CARE
Palliative, end-of-life, and bereavement care for children with life-threatening conditions and their families has many objectives and dimensions that relate to the physical, emotional, and spiritual well-being of each child and family and to their frequent need for practical help with coordinating care, preparing for the future, and maintaining as normal a life as possible. Depending on a child's medical condition, his or her plan of care may include a mix of preventive measures, curative or life-prolonging interventions, and rehabilitative services in addition to palliative care. The mix can be expected to change over time as a disease progresses, the goals of care are reconsidered and changed, and the benefits and burdens of therapies are re-evaluated based on guidance and counseling from physicians and others.
When first confronted with the news that their child has a fatal or potentially fatal condition, parents will usually be shocked, perhaps uncomprehending. Initially and thereafter, they may be profoundly reluctant to accept that their child will die and will want to feel that they have tried everything possible to save their child. At the same time, they will want to protect their child from pain and other suffering. Thus, they may simultaneously hold multiple, possibly conflicting goals. This puts an exceptional premium on clear and timely information and sensitive counseling about the potential benefits and harms of different courses of care. Such communication requires not only technical and intellectual skills but also empathy, education, experience, teamwork, time, and reflection-as well as supportive administrative and financing systems.
Excerpted from When Children Die Copyright © 2003 by National Academy of Sciences. Excerpted by permission.
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|2||Patterns of Childhood Death in America||41|
|3||Pathways to a Child's Death||72|
|4||Communication, Goal Setting, and Care Planning||104|
|5||Care and Caring from Diagnosis Through Death and Bereavement||141|
|6||Providing, Organizing, and Improving Care||180|
|7||Financing of Palliative and End-of-Life Care for Children and their Families||234|
|8||Ethical and Legal Issues||293|
|9||Educating Health Care Professionals||328|
|10||Directions for Research||350|
|App. A||Study Origins and Activities||445|
|App. B||Prognostication Scores||449|
|App. C||Assessing Health-Related Quality of Life in End-of-Life Care for Children and Adolescents||476|
|App. D||Cultural Dimensions of Care At Life's End for Children and Their Families||509|
|App. E||Bereavement Experiences After the Death of a Child||553|
|App. F||End-of-Life Care in Emergency Medical Services for Children||580|
|App. G||Education in Pediatric Palliative Care||599|
|App. H||Progress in Pediatric Palliative Care in New York State - A Demonstration Project||638|
|App. I||Committee Biographical Statements||665|