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3. Pathways to a Child's Death
Pages 72-103

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From page 72...
... CHAPTER 3 PATHWAYS TO A CHED S DEATH ... I ran downstairs ...
From page 73...
... The third section discusses prototypical patterns of care that illustrate traditional and newer perspectives on the relationship between curative or life-prolonging care and palliative and end-of-life care. The newer perspective, stressed in this report, encourages the integration of certain aspects of palliative care from the time a child is diagnosed with a fatal or potentially fatal medical condition.
From page 74...
... Although children who have died can themselves experience no medical or supportive care, first-response emergency medical personnel commonly follow protocols that require efforts at resuscitation. When a child is involved, only rarely is death actually declared "in the field" rather than in the hospital.
From page 75...
... As illustrated later in this chapter and discussed further in Chapters 4 and 5, actual support for families may be very limited. Figure 3.1d abstracts the experience of children who suffer from a fatal progressive illness for example, muscular dystrophy that is characterized by periods of slowly deteriorating health status that are interrupted by potentially fatal medical crises, which the child repeatedly survives until one crisis ends in death.
From page 76...
... Some found that insurers or health plans were supportive; some had no insurance; others had continuing and exhausting difficulties trying to get care approved and then suffered with their child when coverage of hospice or other supportive services was denied. Often faced with uncertainty about their child's prognosis and treatment options, some parents anguished over decisions about how far to pursue experimental treatments or whether and when mechanical ventilation or other life-support interventions should be withheld or withdrawn.
From page 77...
... A neighbor brought Maria to a clinic that provided prenatal care to poor women. The Riveras were proud to give this new baby Ana such a good start.
From page 78...
... To the parents, the emergency department and intensive care unit are frightening and strange. Despite the help of several social workers, there is much they do not understand and that is never explained.
From page 79...
... The adolescent is in conflict with her parents and physician about undergoing burdensome experimental treatment but eventually persuades them to respect her wishes. When Melissa was 13 years old, she was an excellent softball player who hoped some day to play on the Olympic softball team.
From page 80...
... The hospice care team gave the family the help it needed to keep Melissa at home with minimal pain.
From page 81...
... A few innovative programs have recently been developed to provide extensive clinical information and preparation and emotional, spiritual, and practical support (e.g., help with coordinating servicesJ to these families following diagnosis and through and after the infant's death (see, e.g., Sumner, 20011. Most parents, however, have limited access to such information, preparation, comfort, and assistance from health care professionals.
From page 82...
... The obstetrician suggested delivery by cesarean section. Kevin questioned this recommendation, but the obstetrician and nursing staff both insisted it was needed and that if they refused both parents would have to sign a form stating their refusal.
From page 83...
... A number of specialists examined him and eventually they diagnosed a rare genetic disorder. A pediatric neurologist informed Peter and Laura Gabrielle that Johnny would most likely be developmentally delayed and ultimately mentally retarded and probably would have a shortened life span.
From page 84...
... He was not sick enough for an acute care setting but was too medically complex for the available medical foster care homes. All involved felt helpless and frustrated.
From page 85...
... , a large and frequently changing array of health care professionals (e.g., generalist and specialist pediatricians, nurses, social workers, child-life specialists, case managers) , and differing criteria for insurance coverage of different services (e.g., inpatient care, home health services, hospice, psychosocial services, respite care, outpatient drugs and equipment)
From page 86...
... An alternative perspective proposes that providing some elements of palliative care closer to the time of diagnosis than happens traditionally may benefit patients and families and may coexist with and support active curative or life-prolonging treatment. For example, not only may meticulous efforts to prevent or relieve the pain and other distress that accompany certain treatments improve a child's comfort and quality of life, it may improve the child's ability to tolerate or cooperate with treatment.
From page 87...
... Although this report emphasizes the model of integrated care following diagnosis, situations exist in which care may indeed switch abruptly from a near total emphasis on cure or life prolongation to a total commitment to palliation, preparation for death, and support for grieving family members. For example, with some seriously injured children, physicians may initially assume pending further evaluation that survival is possible and work intensively and virtually exclusively toward that goal.
From page 88...
... To depict this as a modification of Figure 3.2b, the horizontal lines under the elements of care could increase and decrease in thickness to represent the varying emphasis on lifeprolonging care or palliative care. In sum, the ratio of palliative care compared to curative or life-prolonging care and the ratio of palliative care compared to true end-of-life care will vary for different medical conditions and at different points during the course of a fatal illness.
From page 89...
... Some of it focuses rather narrowly on decisions involving cardiopulmonary resuscitation, mechanical ventilation, and other life-sustaining technologies with little investigation of the adequacy of physical, emotional, spiritual, and practical support (e.g., help in coordinating services from multiple different providers) for the children and their families.
From page 90...
... More recently, the AAP specifically stressed that systemic pain medications are essential to manage predictable pain associated with bone marrow aspiration and other procedures (AAP, 2001a)
From page 91...
... For example, although the majority of pediatric oncologists consider themselves competent in managing pain and other symptoms (Hilden et al., 2001a) , a recent study at a leading pediatric cancer center and children's hospital found that 89 percent of children dying of cancer were reported by parents in after-death interviews to have suffered substantially at the end of their lives (Wolfe et al., 2000a)
From page 92...
... In only one case did progress notes indicate that the prospect of death was specifically discussed with the child. One study of 100 deaths in three pediatric intensive care units (PICUs)
From page 93...
... found "considerable discordance" for certain symptoms including fatigue, poor appetite, constipation, and diarrhea. Although some observational tools have been developed to assess certain symptoms in children, clinicians or researchers often depend on parental assessments of children's pain not only in retrospective studies following a child's death but also for very young children, children with cognitive TABLE 3.1 Discordance Between the Reports of Parents and Physicians Regarding Children's Symptoms in the Last Month of Life Reported by Reported by Parent but Physician but Not by Not by Physician Parent Kappa (N= 92)
From page 94...
... A 1994 article reported on pain management practices in three Canadian neonatal intensive care units (NICUs)
From page 95...
... A recently published study examined all 196 deaths in an NICU between 1994 and 1997 (Pierucci et al., 2001; see also Leuthner and Pierucci, 2001~. The authors reported that palliative care consultations were associated with significantly more supportive services (e.g., referrals to chaplains or social workers)
From page 96...
... An earlier study of DNR orders in one children's hospital also reported that most of these orders were written for children who were receiving "aggressive" medical therapy in intensive care units (Lantos et al., 1993, p.
From page 97...
... . Of the 44 patients, one died at 6Three-year survival rates following lung or heart-lung transplantation for cystic fibrosis are generally reported (for the last decade)
From page 98...
... 208~. The authors of this study noted that while the final outcome of the disease is certain, uncertainty about short-term prognosis and the waxing and waning nature of respiratory failure in cystic fibrosis make it difficult to abandon antibiotics, physical therapy, mechanical ventilation, and similar measures.
From page 99...
... ebb. They recommended clearer guidelines for decisions about limitation of life support for children.
From page 100...
... Of those responding, 61 percent of all attending physicians and 73 percent of attending physicians in specialties with a higher predicted patient mortality rate reported that they sometimes consider a patient's death to be a personal failure. Conversely, residents and fellows rarely felt this sense of personal failure when a patient died.
From page 101...
... A recent project to improve communication about organ donation in adult neurologic and pediatric intensive care units reported on training .
From page 102...
... Routine discussion and re-evaluation of the goals of care, which assists parents in making medical and other decisions, does not appear to be a part of "normal" health care for children with complex medical conditions. More children with fatal conditions are dying after the limitation of life-support interventions, but the adequacy of care to manage any distress associated with stopping or not starting such interventions is little studied.
From page 103...
... , and more research on almost every dimension of such care and the medical and other criteria for identifying children and families who might benefit from it. The next several chapters expand on these topics and also review the financing, legal, and ethical context of care for children with fatal or potentially fatal medical conditions.


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