When Children Die Improving Palliative and End-of-Life Care for Children and Their Families (2003) / Chapter Skim
Currently Skimming:
6. Providing, Organizing, and Improving Care
6. Providing, Organizing, and Improving Care
Pages 180-233
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From page 180... ...
In particular, children with a serious chronic condition will likely need both acute and chronic care involving multiple services from multiple professionals and multiple organizations at multiple sites, including the home. The coordination of such care is a difficult and frustrating burden for many parents that leaves them with less time and energy for their ill child, for other family members, and for each other.
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From page 181... ...
Attention often focuses on children and adults who lack insurance, but as discussed in Chapter 7, even for children and families who have health insurance, public and private health plan rules and procedures may limit professionals and organizations from offering the amounts and types of palliative, end-of-life, and bereavement care that they believe would best meet the needs of the individual child and family. More generally, the health care system in this country is characterized by complex and often confusing organizational, financial, and regulatory arrangements that link health care professionals and institutions with each other and with governments, insurers, and other organizations.
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From page 182... ...
, the last decade and a half has seen an explosion of interest in the application by health care managers of formal quality improvement strategies (see, e.g., Berwick, 1989; Berwick et al., 1990; IOM, 1990b,2001b; Horn and Hopkins, 1994; Nelson et al., 1998~. Advocates have promoted principles for implementing change that include "targeting systemic defects (e.g., fragmentation and discontinuity in patient care)
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From page 183... ...
including the delivery of consistent, effective, and compassionate palliative, end-of-life, and bereavement care (Lynn et al., 2000~. Innovative Quality Improvement Projects in Palliative and End-of-Life Care A wealth of ideas for systematic quality improvement in end-of-life care have been generated by an initiative cosponsored by the Institute for Healthcare Improvement and the Center to Improve Care of the Dying.
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From page 184... ...
Practice Guidelines and Protocols for Care Quality improvement efforts in clinical care often involve the clevelopment or adoption of formal clinical practice guidelines and administrative protocols.) Such guidelines and protocols are one means of providing clirection and clefining expectations and responsibilities for the health care professionals and organizations that care for children with fatal or potentially fatal medical conditions.
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From page 185... ...
In addition, expectations for pain management are now articulated in accreditation standards 2 The orders are presented in a bright pink document that is to be attached to the front of a patient's medical record in a hospital or nursing home. Oregon also has changed the scope of practice for emergency medical responders so that they can honor POLST provisions.
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From page 186... ...
Unfortunately, the limited research on effective pharmacologic and other symptom management approaches for children is a concern. In some cases, symptom management and other guidelines for adult care may serve as models or starting points for pediatric guidelines, although the latter would likely have a more limited evidence base and more complex analytic task relating to children's developmental differences and other special dimensions of pediatric care.
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From page 187... ...
THE CHALLENGES OF COORDINATION AND CONTINUITY Although the rationale for specializeci pediatric services to serve seriously ill or injured chilciren is persuasive, the system has some limitations. Many communities lack the population base and resources to support such services, so some children and families must travel long distances to get specialist and subspecialist care.
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From page 188... ...
Recognizing the financial, psychological, and other costs of poorly coordinated care, health care professionals, administrators, accreditation organizations, insurers, and regulators have created and refined a number of structures and processes for integrating diverse services and smoothing the transition of patients from one caregiver, care team, organization, or setting to another. They may fail in implementation for various reasons (e.g., poor information systems, inattentive management, inadequate resources)
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From page 189... ...
As used here, continuity implies that needed services will be provided without disruption. It also implies that a child and family are able to maintain trusted relationships and patterns of care that have been forged and tested over time, especially during the course of a child's serious iliness.4 With discontinuous relationships, it is difficult if not impossible for individual physicians and other members of the care team to promise that they will "be there" when patients and families need them (Lynn et al., 2000~.
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From page 190... ...
The commonly cited elements of family-centered care for children with special health care needs do not explicitly include informing children, involving them in goal setting and care planning, and respecting their individual values and concerns. One reason may be the movement's focus on children who have cognitive limitations or serious emotional disorders.
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From page 191... ...
In addition to adding child-centered elements, the list of core elements also mentions education of family caregivers. This reflects the importance of appropriately training family caregivers to provide care that is often provided by nurses or other trained health care personnel.
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From page 192... ...
, "a medical home is the collaborative effort between primary care providers and children with special health care needs and their families to ensure that care is accessible, family-centered, continuous, comprehensive, coordinated, compassionate, and delivered in a culturally competent environment" (MCHB, 2000a)
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From page 193... ...
The care coordination program can work in tandem with different specialty care teams and with the medical home of a child with special health care needs.
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From page 194... ...
6~. Key elements of planning for PAICC include the identification of resources for palliative and end-of-life care within hospitals and in communities, the identification of sources of referrals for pediatric palliative care (e.g., oncologists, intensive care nurses, discharge planners, health plan case managers, chaplains)
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From page 195... ...
It then considers various kinds of pediatric care teams, which also are intended to serve as a means of coordinating the care needed from different categories of health professionals. HEALTH CARE PROFESSIONALS To evaluate and meet children's special physical, cognitive, and emotional needs as they develop from infancy to adulthood, an array of specialized health care professionals and health care organizations have evolved over the last century and more.
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From page 196... ...
Neonatologists, obstetricians, and other specialists, including the nurses who staff neonatal intensive care units and delivery rooms, provide intensive care sometimes briefly, sometimes for monthsfor a substantial proportion of children who die. 5The American Board of Pediatrics recognizes 13 pediatric subspecialties: adolescent medicine, cardiology, critical care medicine, developmental-behavioral pediatrics, emergency medicine, endocrinology, gastroenterology, hematology-oncology, infectious disease, neonatology-perinatology, nephrology, pulmonology, and rheumatology.
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From page 197... ...
Nurses play a central role in providing day-to-day palliative care and home hospice care for adults. Experienced hospice nurses tend, however, to .
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From page 198... ...
(Other educational initiatives are described in Chapter 9.) In the course of its work, the committee heard concerns that a nationwide shortage of nurses extends to pediatric care, especially pediatric home health care (NAPHACC, 2001~.
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From page 199... ...
Their inclusion in the care team extends the emotional care available to seriously ill children and their siblings, particularly in assessing and treating symptoms such as depression and anxiety that can substantially diminish an ill child's quality of life. One important goal for all staff in a children's hospital is to help children maintain as much normal life as possible.
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From page 200... ...
In times of particular fiscal stress, their services are vulnerable to discontinuation. Providers of bereavement care may come from a variety of backgrounds including social work, psychology, and nursing.
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From page 201... ...
. Regardless of the site of care, the usual goals of pediatric care teams working with children with serious medical conditions are multifaceted.
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From page 202... ...
To the extent that inpatient palliative care teams exist in either adult or pediatric care, they generally serve as consultants to other specialty care teams (e.g., oncology, cardiology, nephrology) that retain primary responsibility for a patient's care, especially for children who are continuing to receive curative or life-prolonging therapies.
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From page 203... ...
and oncology, neonatal, and other care teams. Descriptive research to map the nature and frequency of such interactions among teams would provide useful preparation for subsequent assessments of performance (see Chapter 10~.
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From page 204... ...
Even though increased availability and acceptance of pediatric home hospice programs may recluce the amount of hospital care provicleci to children with complex chronic conclitions that end in cleath, inpatient care at the end of life is likely to remain more important for chilciren than for aclults. Inpatient care may increase a parent's sense of security and relieve the family of complex care responsibilities, but it usually affords less privacy, intimacy, and family access and control than cloes home care (Chaffee, 2001~.
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From page 205... ...
, twothirds provided intensive care services to children. Exactly equivalent national statistics are not readily available, but data from the American Hospital Association's 1998 survey of community hospitals indicate that about half of the 4,600 responding hospitals provided some pediatric medical or surgical care (not differentiating between pediatric and nonpediatric hospitals)
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From page 206... ...
Care for critically ill newborns is sufficiently specialized that they are typically cared for in specialized neonatal intensive care units (NICUs) while infants, older children, and adolescents with critical medical problems are cared for in pediatric intensive care units (PICUs)
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From page 207... ...
. Such efforts to "humanize" neonatal intensive care should benefit all fragile neonates those who survive and those who die and their families.
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From page 208... ...
The American Hospital Association's 1998 survey of more than 6,000 community hospitals in the United States, which had responses from more than 4,800 hospitals, found that just 15 percent of those responding reported any "end-of-life services" whereas 36 percent reported a formal pain management program (American Hospital Association, 2000; Pan et al., 2001~.9 A follow-up survey of just over 2,000 hospitals with end-of-life or pain management programs or both asked about palliative care programs (meaning an inpatient palliative care unit, a hospital-based palliative care consultation service, an outpatient palliative care service, or a hospitalbased hospice unit)
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From page 209... ...
and determine the goals of care (e.g., prolonging life, emphasizing quality of life) ; · work with the family and the care team to develop, implement, monitor, and if appropriate, revise the child's plan of care; · assist in evaluating and managing patients with difficult symptoms and in providing emotional support to patients and family members including after a child's death; · make referrals, as needed, to other physicians, psychologists, childlife specialists, chaplains, clinical social workers, and other relevant professionals; help with patient transitions between inpatient and home care and advise or otherwise assist home health care and home hospice personnel with developing and implementing the child's clan of care at home: and .
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From page 210... ...
The committee notes that those providing inpatient palliative or hospice services for children sometimes emphasize that their acceptance criteria do not require that the child's life expectancy be six months or less or that the child and family forgo curative care. As discussed in Chapter 7, Medicaid and some private insurers' hospice benefits include these criteria and also restrict coverage and payments for palliative or hospice care in other ways.
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From page 211... ...
Further, because families are often reluctant to accept the concept of home hospice care or the coverage conditions imposed by Medicaid and some private health plans, they may turn to home health care agencies for essen.
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From page 214... ...
Some children and families are well served by home health care for an extended period but then find at a certain stage that the specialized expertise of a hospice is what the child needs as death approaches. Interviews with home health care personnel indicate that they often would like to obtain consultations on symptom management from hospice personnel, but Medicaid and most private health plans will not pay for such consultations (Huskamp et al., 2001~.
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From page 215... ...
If formal referral to the affiliated hospice eventually occurs, care can usually be continued with minimal disruption of continuity in trusted relationships. Availability of Pediatric Home Hospice Care In 1983, only 4 of the 1,400 hospice programs in the United States reported that they offered any pediatric services (Armstrong-Daley and Zarbock, 2001~.
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From page 216... ...
constructing interdisciplinary care teams that, taken together, have the necessary knowledge and skills needed to provide comprehensive and continuous care for a child at home under most circumstances; 4. providing reliable and immediate access to inpatient pediatric palliative care and other services for patients and families who require them; 5.
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From page 217... ...
Nonetheless, families cannot assume that all hospices are adequately prepared to care for children. For children perhaps more than adults, broader access to home hospice care will depend on trusting relationships between hospice personnel and inpatient care personnel in neonatal and pediatric intensive care units, specialized cancer and other centers, and even obstetrical units.
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From page 218... ...
that their skills in symptom management or family support are being questioned. Some hospices have actively pursued community and philanthropic contributions that allow them important flexibility in meeting the needs of children and their families.
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From page 219... ...
For example, in discussing one of the older inpatient hospice programs at Northwestern Memorial Hospital, Charles Von Gunten recalls that "the
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From page 220... ...
. One goal of residential hospice care is to offer a short-term alternative to hospitalization for dying children and their families when a child requires more intensive assessment, symptom management, and care planning than can be successfully provided at home.
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From page 221... ...
Children in these residential care settings have serious to severe mental retardation and developmental disabilities and suffer from multiple severe chronic conditions such as cerebral palsy, epilepsy, and impairment of hearing, vision, speech, or language. Many are expected to and do live into adulthood, but others are at high risk of death in childhood.
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From page 222... ...
As specified by law, schools must provide or arrange for the provision of appropriate health care services and make appropriate alterations to their physical plant, furnishings and equipment, and procedures to accommodate children with special health care needs. In some cases, this may mean providing individual aides to assist them with movement or other needs; in other cases, school nurses may provide medications and assist in emergencies.
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From page 223... ...
Especially upon the death of older children, classmates and friends may attend the funeral. Camps A number of camps have been organized to serve children living with serious medical problems that preclude participation in traditional camp programs.
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From page 224... ...
Such memorials also provide a means of helping other campers and counselors discuss their own feelings and fears about progressive illness and death. COMMUNITY AND REGIONAL SYSTEMS OF CARE General Beyond individual professionals and institutions, special care teams, and medical homes, children who die and their families need community systems of care that respond to the differences in child and family circumstances and values and that provide a range of services and settings of care to accommodate these differences.
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From page 225... ...
For example, the Pediatric Advanced Care Team at Dana-Farber Cancer Institute and Children's Hospital Boston involves a multidisciplinary team to advise and assist in the development and implementation of plans of care for seriously ill children and their
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From page 226... ...
For example, when a child has returned home after specialized treatment, children's hospitals can provide consulting assistance on pain management and other topics to primary care physicians and community hospitals. Some of this assistance could be provided through on-line clinical practice guidelines and other written resources, but telephone consultations would also be required similar to those provided by hospices.
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From page 227... ...
DIRECTIONS FOR PROFESSIONALS AND INSTITUTIONS The discussion in this and preceding chapters has identified concerns about the quality and consistency of palliative, end-of-life, and bereavement care in several areas. These include the provision of timely and accurate information, the formulation of goals and plans of care, the effective management of pain and other symptoms, the management of the end-stage of a fatal condition, and the offering of bereavement care.
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From page 228... ...
The strategies were pragmatic and operated on the principle that "nothing would have a greater impact on improving the care of patients with pain than institutionalizing the knowledge we have now." Institutionalizing knowledge meant, for example, developing and implementing evidence- and consensus-based practice guidelines, creating and refining tools for assessing pain and measuring desired outcomes of care, forging collaborations among groups and institutions to develop and test pain management protocols, and formulating supportive public and private policies, including accreditation standards. Although recognizing that deficits in pain care persist and that more progress is needed on all fronts, advocates of improved palliative, end-oflife, and bereavement care including many who led efforts to improve pain management have learned from the pain management experience.
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From page 229... ...
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.
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From page 230... ...
Bereavement Care Although many families will rely primarily on support from other family members, friends, neighbors, and spiritual advisors after a child's death, they may also seek care from their primary care physician, hospice personnel, psychotherapists, grief counselors, or family support groups. Still, the child's specialist care team physicians, nurses, social workers, and otherscan meaningfully "be with" the family in a variety of ways in the days and months following a child's death in the hospital or at home.
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From page 231... ...
, the development of programs to train personnel in the basis and use of the guidelines, and the creation of information systems to make adherence to the guidelines easier and assessment of their consequences both expected and unexpected routine. Recommendation: Children's hospitals, hospices, home health agencies, and other organizations that care for seriously ill or injured children should collaborate to assign specific responsibilities for implementing clinical and administrative protocols and procedures for palliative, end-of-life, and bereavement care.
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From page 232... ...
They may require collaboration with or assistance from state officials, national and state associations and professional groups, community business and philanthropic entities, and other groups. Recommendation: Children's hospitals, hospices with established pediatric programs, and other institutions that care for children with fatal or potentially fatal medical conditions should work with professional societies, state agencies, and other organizations to develop regional information programs and other resources to assist clinicians and families in local and outlying communities and rural areas.
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From page 233... ...
If, however, the system for financing the provision of services to individual patients and families fails to cover the kinds of palliative, end-oflife, and bereavement services advised in this report, professionals and organizations may struggle merely to provide basic services much less coordinate them and support them regionally. Chapter 7 examines this country's system for financing health care as it relates to pediatric care and palliative care generally and to pediatric palliative, end-of-life, and bereavement care specifically.
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