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Pages 1-18

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From page 1...
... 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 indi
From page 2...
... 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.
From page 3...
... · 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 supnortive Public policies.
From page 4...
... Given the importance of suciclen 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 conclitions, the most important are cancers, diseases of the heart, and lower respiratory cone itions.
From page 5...
... 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 course! patients and
From page 6...
... 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.
From page 7...
... 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.
From page 8...
... Care plans should always include steps to assess and prevent physical, emotional, and spiritual suffering. As described by the American Academy of Pediatrics, the goal of palliative care is "to add life to the child's years, not simply years to the child's life." Formal clinical and administrative protocols are one means of defining expectations and responsibilities for the quality of care provided by health care professionals and institutions.
From page 9...
... Recommendation: Pediatric professionals, children's hospitals, hospices, home health agencies, professional societies, family advocacy groups, government agencies, and others should work together to develop and implement clinical practice guidelines and institutional protocols and procedures for palliative, end-of-life, and bereavement care that meet the needs of children and families for · complete, timely, understandable information about diagnosis, prognosis, treatments (including their potential benefits and burdens) , and palliative care options; · early and continuing discussion of goals and preferences for care that will be honored wherever care is provided; · effective and timely prevention, assessment, and treatment of physical and psychological symptoms and other distress, whatever the goals of care and wherever care is provided; and · competent, fair, and compassionate clinical management of endof-life decisions about such interventions as resuscitation and mechanical ventilation.
From page 10...
... Especially in more rural areas, these children, their families, and the local health care professionals, community hospitals, and other organizations that serve them need additional support. This support may include proven Internet and interactive telemedicine applications as well as telephone consultations and written guidelines and care plans.
From page 11...
... An abrupt end to contact can feel like and be a kind of abandonment. Recommendation: Children's hospitals and other hospitals that care for children who die should work with hospices and other relevant community organizations to develop and implement protocols and procedures for · identifying and coordinating culturally sensitive bereavement services for parents, siblings, and other survivors, whether the child dies after a prolonged illness or after a sudden event; · defining bereavement support roles for hospital-based and out-ofhospital personnel, including emergency medical services providers, law enforcement officers, hospital pathologists, and staff in medical examiners' offices; and · responding to the bereavement needs and stresses of professionals, including emergency services and law enforcement personnel, who assist dying children and their families.
From page 12...
... Such requirements are particularly troublesome for children whose life expectancy is uncertain or whose parents cannot face relinquishing efforts to save or extend their child's life. Recommendation: Public and private insurers should restructure hospice benefits for children to · add hospice care to the services required by Congress in Medicaid and other public insurance programs for children and to the services covered for children under private health plans; · eliminate eligibility restrictions related to life expectancy, substitute criteria based on a child's diagnosis and severity of illness, and drop rules requiring children to forgo curative or life-prolonging care (possibly in a case management framework)
From page 13...
... In addition, bereavement care should be covered as such, whether or not part of a hospice's services. Otherwise, insured parents or siblings who seek counseling generally will be covered only under diagnoses such as depression, which could result in later problems in securing health insurance.
From page 14...
... To implement the recommendations related to improved access to hospice and palliative care, child health professionals, insurers, and researchers will have to work together to define eligibility criteria related to diagnosis and, as appropriate, severity of illness. On a more general level, CMS should take the lead in examining the appropriateness of diagnostic, procedure, and other classification schemes that were originally developed for adult services and are now used by many Medicaid programs and private health plans that cover children.
From page 15...
... Recommendation: Medical, nursing, and other health professions schools or programs should collaborate with professional societies to improve the care provided to seriously ill and injured children by creating and testing curricula and experiences that · prepare all health care professionals who work with children and families to have relevant basic competence in palliative, end-of-life, and bereavement care; · prepare specialists, subspecialists, and others who routinely care for children with life-threatening conditions to have advanced competence in the technical and psychosocial aspects of palliative, end-of-life, and bereavement care in their respective fields; and
From page 16...
... Recommendation: To provide instruction and experiences appropriate for all health care professionals who care for children, experts in general and specialty fields of pediatric health care and education should collaborate with experts in adult and pediatric palliative care and education to develop and implement · model curricula that provide a basic foundation of knowledge about palliative, end-of-life, and bereavement care that is appropriate for undergraduate health professions education in areas including but not limited to medicine, nursing, social work, psychology, and pastoral care; · residency program requirements that provide more extensive preparation as appropriate for each category of pediatric specialists and subspecialists who care for children with life-threatening medical · ~ cons ltlons; · pediatric palliative care fellowships and similar training opportu· ~ nltles; · introductory and advanced continuing education programs and requirements for both generalist and specialist pediatric professionals; and · practical, fundable strategies to evaluate selected techniques or tools for educating health professionals in palliative, end-of-life, and bereavement care.
From page 17...
... In the 2001 report Improving Palliative Care for Cancer, the IOM's National Cancer Policy Board included two recommendations aimed at stimulating palliative care research in "centers of excellence" designated by the National Institutes of Health and encouraging such centers to take a lead role as agents of national policy in promoting palliative care. This report endorses a similar strategy to use federally funded pediatric oncology centers, neonatal networks, and similar structures to promote attention to palliative, end-of-life, and bereavement care in both pediatric clinical trials and regular patient care.
From page 18...
... This report also suggests more specific directions for research in a number of areas including symptom control, financing, service organization and delivery, perinatal loss, emergency medical services, and education. Some research in these and other areas will focus narrowly on children who have died or who are expected to die.


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