When Children Die Improving Palliative and End-of-Life Care for Children and Their Families (2003) / Chapter Skim
Currently Skimming:
1. Introduction
1. Introduction
Pages 19-40
The Chapter Skim interface presents what we've algorithmically identified as the most significant single chunk of text within every page in the chapter.
Select key terms on the right to highlight them within pages of the chapter.
From page 19... ...
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....
|
From page 20... ...
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.
|
From page 21... ...
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.
|
From page 22... ...
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.
|
From page 23... ...
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.
|
From page 24... ...
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)
|
From page 25... ...
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~.
|
From page 26... ...
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., Gabe!
|
From page 27... ...
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.
|
From page 28... ...
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 lifethreatening 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.
|
From page 29... ...
Appropriate care for children with life-threatening medical conditions and their families is designed to fit each child's physical, cognitive, emotional, and spirited! level of development.
|
From page 30... ...
Competent, consistent, and compassionate palliative, en~l-of-life, and bereavement care is an integral and important part of pediatric care in all settings, from diagnosis of ~ 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.
|
From page 31... ...
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 andt better research is needled" to improve palliative, end-of-life, and bereavement care for children and families.
|
From page 32... ...
. 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.
|
From page 33... ...
Palliative Care, End-of-Life, and Hospice Care Although some use palliative care and hospice or end-of-life care interchangeably, the committee views paiiiative 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 mode!
|
From page 34... ...
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)
|
From page 35... ...
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.
|
From page 36... ...
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 olcl.3 ~ Researchers have found inconsistencies in the application of pediatric brain death criteria (Lynch and Eldadah, 1992; Mejia and Pollack, 3Because 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.
|
From page 37... ...
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.
|
From page 38... ...
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.)
|
From page 39... ...
rather than as seen by experts (see, e.g., Cohen and Mount, 1992; Patrick and Erickson, 1993; Gold et al., 1996~. Measures of healthrelated 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.
|
From page 40... ...
241. 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.
|
Key Terms
This material may be derived from roughly machine-read images, and so is provided only to facilitate research.
More
information on Chapter Skim is available.