PROVIDING, ORGANIZING, AND IMPROVING CARE
“Was there someone in charge of your child’s medical care?” “Yes, me. Coordinating the various doctors, nurses and treatments was the most frustrating part of the process.”
Christine Aney, parent, 2001
The parents who live with the children know what is best for that child. That was awful, the having to fight for what you knew was best for your child.
Gary Conlon, parent, 2001
The good news . . . is that any health care organization in the country can take immediate steps to improve how it cares for dying patients and those who love them.
Lynn et al., 2000, p. 35
In the United States, the diagnosis of a child’s life-threatening medical condition often launches child and family into a complex and confusing world of technologically sophisticated treatments, arcane terminology, and highly specialized personnel and organizations. 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. It is also a well-recognized trouble spot for health care providers.
This chapter begins by considering palliative, end-of-life, and bereavement care for children and their families within a broader framework of efforts to improve the quality, coordination, and continuity of care for children with serious medical conditions. In addition to strengthening accountability for care, these efforts have sought to make health care more child and family centered, to establish a locus of responsibility for the care of children with special health care needs, and more recently, to develop care coordination models for children needing care for fatal or potentially fatal medical conditions. The chapter also provides an overview of the professionals and organizations that care for children with life-threatening medical problems and their families. The final sections return to the issue of continuity and coordination with a discussion of community and regional systems of care and present the committee’s recommendations.
ACCOUNTABILITY AND QUALITY
Although this chapter focuses on the organization and delivery of palliative and end-of-life care for children and their families, such care must be understood within the broader health care system in the United States. The deficiencies of that system in providing affordable, universal access to safe, effective, compassionate, patient- and family-centered care are long-standing. 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. “By fragmenting the patient-physician relationship and often putting personal physicians at a distance from their dying patients, these arrangements may diminish the knowledge and intimacy that contributes to a professional’s feeling of individual responsibility” (IOM, 1997, p. 122). One unintended consequence is that no health care professional is clearly responsible for seeing that patients gets needed care whatever its emphasis and whether they are at home or in the hospital. Thus, the committee believes that creating accountability for palliative, end-of-life, and bereavement care is a crucial element of any strategy to improve the quality of this care, including its coordination and continuity.
Another IOM committee has defined quality of care as “the degree to which health services for individuals and populations increase the likelihood of desired health outcomes and are consistent with current professional knowledge” (IOM, 1990a, p. 21). The literature on quality of care has traditionally distinguished three dimensions for assessment: the structure of care (e.g., information and decision support systems), the processes of care (e.g., assessing, documenting, and preventing or relieving symptoms); and the outcomes of care (e.g., avoidable hospitalizations, pain, perceptions of care). The definition of the goals of care and the development of appropriate and feasible outcome measures are essential steps in assessing and improving the quality of care and in holding professionals and institutions accountable for palliative and end-of-life care. As discussed further in Chapter 10, the development of outcome measures, whether for quality assessment or research, is a particular challenge for patients who are dying and may be sedated or otherwise not able to answer questions about their experience of care, symptoms, or quality of life in the face of death.
Solomon (2001) has noted the challenges posed by limited scientific knowledge and measurement challenges but has proposed several steps that institutions could take now to strengthen accountability and improve end-of-life care. They include establishing continuous quality improvement committees responsible for end-of-life care, collecting data as a catalyst for change, reviewing existing outcome measures and data sources and experimenting with new ones, and beginning with data collection on a small scale.
Under the rubrics of Continuous Quality Improvement (CQI) and Total Quality Management (TQM), 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) rather than individual mistakes; encouraging close relationships among the participants in health care transactions (e.g., physicians, patients, purchasers); using planning, control, assessment, and improvement activities that are grounded in statistical and scientific precepts and techniques; feeding statistical information back to practitioners on how their practices may differ from their peers’ or depart from evidence-based standards for prac-tice; standardizing processes to reduce the opportunity for error and link specific care processes to outcomes; and striving for continuous improvement in contrast to merely meeting established goals or criteria” (IOM, 1997, p. 126).
Once a problem area, a specific target for process improvement, and desired objectives and outcomes have been identified and investigated, a centerpiece of CQI is the “plan–do–study (or check)–act” cycle. This cycle
involves four basic steps: (1) planning a change, that is, developing specific steps (e.g., data collection strategy, selection of study population) and time-table to reach the objectives; (2) doing or implementing the planned change and collecting data on outcomes and processes, including unexpected problems and results; (3) studying the change by analyzing the data, comparing results to expectations, and summarizing lessons; and (4) acting as guided by the analysis, including revising the original plan, expanding it, or identifying a new strategy. Although investments in these strategies have not necessarily been documented by controlled studies to be as successful as promised (see, e.g., Shortell et al., 1998), they have a recognized place in efforts to improve the performance of the American health care system (see, e.g., IOM, 2001b) 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. Leaders of the initiative subsequently discussed these ideas in Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians (Lynn et al., 2000; Web site at http://www.medicaring.org/educate/navigate/qi.html).
One chapter of the sourcebook is devoted to reports on strategies tried by a number of health care organizations to reduce fragmentation of care, improve continuity and accountability, and increase satisfaction with care. Specific, measurable objectives for these projects included reducing patient transfers (especially when death is near), providing patients and families with one or two central contact people, coordinating hospice and oncology units in a managed care system to provide a continuum of care and promote consistency in pain management, establishing reliable procedures for professionals to communicate with each other about a patient’s care, and establishing and delivering on specific promises (e.g., that a known person will respond to a request for help within 30 minutes, day or night).
Some of the programs described in the sourcebook sought to coordinate care across multiple sites and providers following the model Program of All-Inclusive Care for the Elderly (PACE) that was pioneered by On-Lok Senior Health Services in California. (PACE also provided the model for the Medicaid-based pediatric palliative care demonstration projects described earlier in this report.) Other projects were focused on narrower issues, for example, developing reliable, easy ways for advance care plans to be available, recognized, and honored by providers in all settings and circum-
stances. The editors of the sourcebook suggested that a useful measure of continuity of care is tracking the number of health care personnel seen by a patient in a short period. They urged that patients and families should have a single point of contact but also become comfortable with several members of the care team.
Additional innovative projects and efforts to improve the quality of palliative and end-of-life care have been described elsewhere (see, e.g., Bookbinder et al., 1995; Higginson, 1993; Bookbinder, 2001; Solomon et al., 2000b, 2001b; Romer et al., 2002; see also the on-line journal Innovations in End-of-Life Care, http://www.edc.org/lastacts, and the Web site for Promoting Excellence in End-of-Life Care, http://www.endoflifecare.org/). These efforts do not necessarily involve the specific quality improvement approach outlined in the sourcebook. Most activities involve adult patients, but they may still offer useful direction for quality improvement efforts in pediatric care.
Practice Guidelines and Protocols for Care
Quality improvement efforts in clinical care often involve the development or adoption of formal clinical practice guidelines and administrative protocols.1 Such guidelines and protocols are one means of providing direction and defining expectations and responsibilities for the health care professionals and organizations that care for children with fatal or potentially fatal medical conditions. As discussed in Chapter 8, they may also be useful in helping to prevent or resolve conflicts between parents and clinicians and among clinicians, for example, by clarifying the science base for medical interventions or by defining communication processes to reduce misunderstandings between clinicians and patients or families.
Insofar as possible, community institutions planning to implement guidelines or care protocols should start with up-to-date, evidence-based guidelines or recommendations that have been developed by experienced professional societies and other national groups and that, ideally, have been tested in practice settings. The rationale is to both reduce the demands on local institutions and improve the quality of the product. Unfortunately, as noted throughout this report, research findings on palliative, end-of-life, and bereavement care for children and families are limited. Even when research findings are available, they may be incomplete or in conflict. Thus, expert judgment and experience—as well as sound assessment methods and
consensus development procedures—are essential in evaluating scientific evidence and in recommending courses of action in the absence of evidence. Credible and practical guidelines and protocols for palliative, end-of-life, and bereavement care should also consider the experience and perspectives of patients (when possible), family representatives, and others regularly involved in caring for patients who have fatal or potentially fatal medical conditions.
Even when methodologically sound national guidelines are available, roles also exist for local review and adaptation of such guidelines. One justification for local review and adaptation is to increase the sensitivity of care processes and procedures to specific institutional and community characteristics, including the institution’s mission and priorities, the population it serves, the institution’s financial and other resources, the community’s resources and expectations, and state laws and regulations. Another justification is that the practical process of adapting protocols to local circumstances should promote a greater sense of local ownership and commitment to the protocols and the goals they are intended to serve. When local groups modify national guidelines, they should approach the task systematically and explain the reasons for any departures from these guidelines.
Comprehensive protocols to cover patient transfers and other events that cross institutional boundaries may require interorganizational or community-wide cooperation or agreements. Oregon provides one example of such cooperation. As part of more than a decade’s work to improve end-of-life care in the state, a statewide task force has developed, implemented, and evaluated Physician Orders for Life-Sustaining Treatment (POLST)2 as a tool to help patients have their wishes honored regardless of the site of care. This initiative has shown evidence of success (Tolle et al., 1998; Lee et al., 2000; Tolle and Tilden, 2002; see also http://www.lastacts.org/files/publications/polst0599.html).
In a few areas, interventions and care protocols are reasonably well defined and, in some cases, tested. For example, evidence-based guidelines for management of different kinds of pain, including cancer pain in children, have been developed and undergone several years of testing in the United States and elsewhere (see, e.g., AHCPR, 1994; Foley, 1994; Bookbinder et al., 1996; WHO, 1998; Du Pen et al., 1999). In addition, expectations for pain management are now articulated in accreditation standards
and supporting statements devised by the Joint Commission on the Accreditation of Hospitals (JCAHO, 2001). Specific standards now state that “patients have the right to appropriate assessment and management of pain” (standard RI.1.2.8), “pain is assessed in all patients” (standard PE.1.4), and “patients are educated about pain and managing pain as part of treatment, as appropriate” (PF.3.4). Advocates have also adopted the phrase “pain: the fifth vital sign” to help increase professionals’ awareness of pain and encourage the implementation of explicit pain management guidelines and protocols (APS, 1997).
The Joint Commission standards mention other aspects of palliative and end-of-life care. As noted in Chapter 5, one (RI.1.3.5) mentions pastoral care and other spiritual services (JCAHO, 1998). A broader standard (RI.1.2.7) states “the health care organization addresses care at the end of life” (JCAHO, 2001). The Commission explains the intent of the latter standard as covering
provision of appropriate treatment for any primary and secondary symptoms, according to the wishes of the patient or the surrogate decision maker;
aggressive and effective management of pain;
sensitive issues such as autopsy and organ donation;
respect for the patient’s values, religion, and philosophy;
involvement of the patient and, where appropriate, the family in every aspect of care; and
attention to the psychological, social, emotional, spiritual, and cultural concerns of the patient and the family.
The committee believes that it is appropriate to generalize the expectation of aggressive and effective pain management to the aggressive and effective management of all serious symptoms. This would likely encourage more active efforts to develop evidence- and consensus-based guidelines for symptoms in addition to pain and to build a broader and stronger evidence base for effective symptom management (IOM, 1997; Goldman, 1999; ChIPPS, 2001; Levetown, 2001).
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. For example, as one resource, pediatric oncologists could look to the series of curriculum modules that the Ameri-
can Society of Clinical Oncology has developed for specific disease- and treatment-related symptoms and symptom control topics (ASCO, 2002).
Notwithstanding the limited evidence base, the committee believes that practice guidelines and administrative protocols are, at a minimum, important tools for articulating institutional expectations and responsibilities and establishing a basis for evaluating processes and performance. Adoption of guidelines does not guarantee desired results. As another IOM committee warned in 1992, “guidelines for clinical practice are a promising but not a quick or sure strategy for improving and rationalizing the overall use of health care services. . . . Persistent commitment over the long term is required from both policymakers and health care professionals” (IOM, 1992, p. 4). The last decade has confirmed that assessment. Even when health care personnel agree with the basic message of a guideline (i.e., have identified, reviewed, evaluated, and accepted the guideline), formidable barriers to implementation exist, including habitual practice patterns, countervailing patient preferences, time pressures, financial disincentives, liability concerns, and lack of supporting information and administrative systems. Some barriers (e.g., inadequate information systems) can be acted on locally, at least in part, but other barriers (e.g., financial disincentives) lie largely beyond the reach of individual institutions and require system-level changes in policies and practices.
THE CHALLENGES OF COORDINATION AND CONTINUITY
Although the rationale for specialized pediatric services to serve seriously ill or injured children 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. They thus are separated from their normal sources of support including other family members, friends, and the child’s usual physician. When the child and family return home, they may have to rely on professionals and providers with limited experience in caring for children with advanced illnesses or providing palliative and end-of-life care. The coordination, continuity, and quality of a child’s care may suffer as a result, especially if follow-up protocols, consultation, and other support from specialist professionals and medical centers are limited.
When children can be treated in or near their home community, coordination and continuity can still be difficult and frustrating when multiple providers and services are involved. Even within a single institution, coordination and communication may fail during shift changes, discharge preparation, and other predictable transitions.
In parents’ stories of their experiences with a child’s life-threatening illness and death, two frequent themes are the burden of coordinating the
many elements of their child’s medical care in a fragmented care system and the difficulties of maintaining continuity in care and sustaining trusted relationships. Parents find themselves spending hours on the phone trying to identify, schedule, and coordinate providers and services and also struggling with health plan requirements and procedures. They may have to ensure that essential medical information and care plans (e.g., orders about life-sustaining care) accompany their child from one provider to another and still repeatedly explain the child’s history and their experiences and preferences regarding the child’s care.
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), but the basic mechanisms are reasonably well accepted. These mechanisms, which may also serve cost control objectives, include the following:
discharge planning procedures to ensure that patients leave hospitals, nursing homes, and other institutions when it is medically appropriate and when appropriate follow-up care has been planned and arranged;
case management programs, which may coordinate both health and social services for patients and families, particularly patients with serious chronic problems and limited financial resources;
disease management programs to improve the continuity, consistency, and effectiveness of care, including self-care, for individuals with specific medical problems such as diabetes or asthma;
standardized procedures for patient transfers and follow-up among hospitals, home care agencies, hospices, and other organizations that have overlapping service areas;
patient, family, and general community educational efforts intended to inform people of programs that may assist them in obtaining and coordinating services and of steps they need to take to navigate the care system; and
medical information systems that follow people across settings and providers of care, so that plans of care, preferences, and records are accessible whenever needed.
These and similar arrangements have not generally been designed with the needs of dying patients and their families in mind. Most could, however, be adapted or adjusted to include objectives and procedures focused
on the coordination and continuity of palliative, end-of-life, and bereavement care for adults and children.
In addition to the mechanisms identified above, a number of other coordination strategies have been developed to assist children with special health care needs and their families.3 The “medical home”—one broad approach for these children and families—is discussed below as is a strategy to integrate and coordinate palliative care for children hospitalized with life-threatening conditions. Both can be seen as elements of larger initiatives that attempt to put the needs and preferences of children and their families at the center of health care systems.
Although many strategies focus on coordinating multiple providers and sites of care, strategies to preserve continuity of care are also important. Continuity is a complex concept that overlaps with but is not identical to coordination of care. Fletcher and colleagues (1984, p. 409) distinguished between “a thread” that ties episodes of care together (continuity) and the relationship of various components of care (coordination) but also noted that the terms may be used interchangeably. 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 illness.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).
Some studies suggest that continuity increases patient and family satisfaction with care and can reduce hospitalization and, possibly, costs. For example, one recent cross-sectional study on continuity of care in a primary care clinic reported that continuity of care was associated with higher parent ratings on items about providers’ respect for parents’ views, careful listening, and understandable explanations (Christakis et al., 2002; see also Gill and Mainous, 1998; Gill et al., 2000; Christakis et al., 1999, 2001).
As discussed in Chapter 2, these children “have or are at increased risk for a chronic physical, developmental, behavioral or emotional condition and . . . also require health and related services of a type or amount beyond that required by children generally” (McPherson et al., 1998, p. 138). Many of these children have conditions such as vision loss, mental retardation, autism, and serious learning disorders that are not expected to lead to death in childhood. A small percentage, however, have congenital anomalies, progressive neurodegenerative diseases, and other conditions that are often or always fatal.
Sometimes continuity refers more narrowly to a “usual source of care,” which could be a clinic with no guarantee of continuity with a particular caregiver. Other dimensions may include continuity of records and information. See, for example, Donaldson (2001).
Continuity is usually valued, but other considerations must also be weighed, for example, a family’s desire to bring a child home rather than stay at a distant, specialized treatment center. Further, hospital or hospice rules, health plan requirements, licensure restrictions, and other policies can limit continuity, although creative and persistent families, social workers, physicians, and other team members may find ways around some restrictions in individual situations. Nonetheless, unless institutions establish systematic processes and protocols for handling special situations, arranging waivers to rules, and, more generally, making continuity planning a part of the care process, it will be difficult to sustain continuity of care and keep the focus on the child and family rather than on institutional requirements and conventions.
When primary responsibility for a child’s care shifts, those who have cared for a child may still seek ways to maintain some degree of continued communication and involvement with the child and family. If a child has been appropriately referred to hospice after the failure of chemotherapy and other cancer treatment, the hospice team and the oncology team can encourage continued relationships, for example, through regular phone calls. Similarly, a child’s primary care physician can call to keep in touch while a child is under a specialist’s care.
Child- and Family-Centered Care
As described by advocates, the movement for family-centered care targets the subordination of the needs of the child and family to the needs of the health care system (see, e.g., Shelton et al., 1987; Johnson et al., 1992; Shelton and Stepanek, 1994; see also Harrison, 1993). Although the ideas championed by this movement have roots that extend back to the 1970s and before, they were given particular emphasis in the late 1980s by advocates for families whose children have special health care needs (as defined in Chapter 2).
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. Also, parents have legal authority to make decisions for their child and are usually the child’s primary caregivers.
Beyond the special needs community, proponents of patient-centered care have argued for understanding care “through the patient’s eyes” (Gerteis et al, 1993). A child-adapted version of that perspective would
SOURCES: Adapted from Shelton et al., 1987; Johnson et al., 1992; and Shelton and Stepanek, 1994.
attempt to understand pediatric care “through the child’s eyes.” To that end, the committee recommended in Chapter 4 that children with life-threatening medical conditions be involved in care planning and decisionmaking, consistent with their intellectual and emotional maturity and with the family’s background and values.
In Box 6.1, the committee has amended and supplemented the commonly cited core elements of family-centered care to add explicitly the recognition and involvement of the child whenever possible. 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.
The Medical Home
The “medical home” is a core component of strategies to implement the elements of family-centered care for children. The concept has its fullest expression as a means of improving the continuity and coordination of care for children with special health care needs and eventually supporting the successful transition of these children to adult services. Insofar as possible, the goal is to meet all of the child’s and the family’s needs—medical, psychosocial, educational—in the local community.
The medical home concept has been developed and promoted by a coalition including the American Academy of Pediatrics (AAP), the federal Maternal and Child Health Bureau, Family Voices, and other groups (AAP, 1992, 1995b, 1999b). As defined by the Maternal and Child Health Bureau (MCHB, 2000a), “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). The ideal elements of the medical home, as described by the AAP, are listed in Box 6.2. Some of these elements
SOURCE: AAP, 1992.
are in place but the concept remains, for the most part, an ideal rather than a generally implemented reality.
The AAP notes that geographic barriers, personnel constraints, practice patterns, and economic and social forces make the ideal medical home unobtainable for many children. For example, many children with special health care needs are covered by Medicaid, but reimbursement for physician services and capitation rates for Medicaid managed care plans are so low that they deter pediatricians from providing that ideal (see Chapter 7).
The goals of the medical home and the goals of palliative care and end-of-life care for children are fully compatible. Efforts to implement the medical home concept for the larger population of children with special health care needs should benefit the smaller group of children who die of complex chronic conditions. These efforts may also provide models for the coordinated care of children with more acute medical problems who alternate for shorter periods between inpatient and community care before they die. In turn, even though generalist pediatricians and family practitioners will usually care for relatively few children who die, their preparation in the basic principles of pediatric palliative care can benefit the much larger population of children with serious medical conditions that are not expected to prove fatal in childhood. (Chapter 9 examines education and training in palliative and end-of-life care for generalist and specialist pediatricians and family practitioners.)
Pediatric Advanced Illness Care Coordination
One strategy for coordinating care that focuses specifically on patients with fatal or potentially fatal diagnoses emphasizes communication and decisionmaking. Following a model originally developed for adults (Tobin and Lindsey, 1998), the Pediatric Advanced Illness Care Coordination (PAICC) program is intended to integrate and standardize pediatric palliative care within the routines of medical care for children with serious medical conditions (Himelstein et al., 2002). The approach also reflects current principles of case management and disease management.
The adult program is operating in 40 institutions in the United States (Dan Tobin, M.D., The Life Institute, personal communication, March 6, 2002). The pediatric program is being introduced in a number of medical centers around the country including The Children’s Hospital at The Cleveland Clinic, the Children’s Hospital Wisconsin, Hackensack University Medical Center, and the University of Texas Health Sciences Center at San Antonio. 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.
Two central features of the pediatric program are the designation of a care coordinator to work with health care teams and families and the availability of three manuals—one for the child’s main physician and other caregivers, one for the care coordinator, and one for parents. The care coordinator keeps the patient and family at the center of care, with a focus on their information needs and psychosocial concerns. He or she also initiates conversations about end-of-life issues and decisions and coordinates and orchestrates care—possibly providing some care but also helping families find, obtain, and coordinate resources. The coordinator offers information and support services to parents while making clear to parents that they can call the coordinator for assistance even if they do not want to accept the services.
The manual for care coordinators is a training guide that includes modules on communicating compassionately and effectively with children and families about diagnosis and prognosis, planning and decisionmaking, helping families cope with fear, and supporting them in preparing for death. The manual for families is intended to help parents gain some control over the experience of having a child with a life-threatening condition. It urges them “not to put this manual down because you do not want to think about the worst” (Hilden and Tobin, 2002, p. 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), and the assessment of clinical services, inpatient palliative care resources, relevant administrative procedures, and potential barriers to program implementation. Other elements include initial and ongoing training of program staff, strategies for educating providers and winning their support, procedures for introducing the program to patients and families, processes and tools for documenting communication and information, and formal evaluation of processes of care and outcomes. Among the outcomes sought by the PAICC model are
increases in (1) the frequency and timeliness of referrals to palliative care experts and (2) the interval between do-not-resuscitate (DNR) and similar orders or advance care directives and the time of death;
improved documentation of communication about end-of-life care;
increases in staff satisfaction with providing end-of-life care and serving children with advanced illness; and
improvements in children’s quality of life and in the satisfaction of children and families with the care and information provided.
Any strategy to improve the coordination, continuity, and effectiveness of care for seriously ill children and their families depends on the commitment, preparation, and support of an array of health care professionals. The following section first discusses individual categories of professionals. 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. These professionals include general and specialist pediatricians, pediatric nurse practitioners and nurses, child psychologists, child-life specialists, pediatric social workers, and others with training in various aspects of care for infants, children, and adolescents. Children’s hospitals specialize in treating ill or injured children, and some home care and residential care facilities also concentrate on care for children.
In addition, children may receive care from professionals and organizations that do not specialize in pediatric services. For example, a seriously injured child may be taken to the nearest Level 1 trauma center but may then be transferred to a center specializing in pediatric emergency and intensive care. The transfer may also be from more to less specialized care, for instance, when children who have returned home after treatment at a center specializing in pediatric oncology may receive follow-up hospital care at a community hospital. This mix of specialized pediatric and other providers complicates efforts to describe, assess, and improve the provision of palliative, end-of-life, and bereavement care to children and their families.
Physicians and Nurse Practitioners
Any physician can legally care for a patient of any age, but pediatricians are uniquely educated to diagnose and treat children. In 1995, data from the American Medical Association showed 50,000 physicians in the United States who designated themselves as practicing pediatricians (board certified and non-board certified) (Randolph et al., 1997; DeAngelis et al., 2000). More than 90 percent were involved in direct patient care.
Family practitioners are also trained to provide primary care to both adults and children, more often older children and adolescents rather than infants and preschoolers (AAP, 1998b). According to data from the 1980s
and earlier, family practitioners provided 15 to 25 percent of physician services received by children, possibly more in rural areas (Budetti et al., 1982; Abt Associates, 1991). In addition, about 5,800 pediatric nurse practitioners have been certified (DeAngelis et al., 2000). The amount of care provided to children by specialists and subspecialists who care mainly for adults is not documented (Gruskin et al., 2000).
Because most children are healthy and require mainly preventive and other primary care, general pediatricians and family practitioners are less likely than generalist physicians caring for adults to encounter and care for patients with fatal or potentially fatal diagnoses. When they do encounter such child patients, they typically refer them to appropriate pediatric oncologists, cardiologists, or other subspecialists. The committee identified no data on the nature or extent of generalist involvement in the care of children with life-threatening medical conditions and likewise found no information on the nature or extent of clinical guidance or consultation provided to generalist pediatricians by local or regional specialists. Although committee members were aware that some managed care organizations require that children be returned to the care of primary care physicians if it is judged that continued curative or life-prolonging treatments will be ineffective, they located no systematic information on such policies or their consequences.
Pediatric subspecialists vary considerably in the amount and kind of care and support they provide to seriously ill or injured children.5 For example, radiologists or surgeons who treat pediatric cancer patients provide essential services but often have relatively limited ongoing involvement and do not have primary responsibility for the child’s care. Pediatric emergency medicine specialists may provide very intensive services but for a relatively limited period before a seriously injured or acutely ill child dies or becomes the responsibility of a critical care specialist. In contrast, pediatric oncologists, neurologists, cardiologists, pulmonologists, and certain other specialists may have close relationships with children and families that extend for years. Neonatologists, obstetricians, and other specialists, including the nurses who staff neonatal intensive care units and delivery rooms, provide intensive care—sometimes briefly, sometimes for months— for a substantial proportion of children who die.
Each category of specialist should be prepared to provide palliative, end-of-life, and bereavement support appropriate for the children and families they serve. In August 2000, the American Academy of Pediatrics issued a policy statement stating that “all general and subspecialty pediatricians, family physicians, pain specialists, and pediatric surgeons need to become familiar and comfortable with the provision of palliative care to children” (AAP, 2000g, p.356). Pediatric specialty groups are also beginning to recognize the importance of more systematic attention to palliative and end-of-life care for children and their families. For example, the Children’s Oncology Group has organized an End-of-Life Care Subcommittee that will work to develop the evidence base for palliative care within the framework of clinical trials (COG, 2001). Chapter 9 describes other initiatives sponsored by pediatric professionals that focus on the education of clinicians.
Within the relatively new field of palliative medicine, the emphasis is overwhelmingly on care for adults, especially elderly adults who account for more than 70 percent of Americans who die each year.6 A small cadre of pediatric palliative care specialists is, however, emerging to provide leadership and support for the larger pediatric care community.
Both parents had to work. They were very, very poor people. . . . So the nurses just did everything. Every single bit of love those children had in their last moments came from the nurses, and you know that was a gift.
Salvador Avila, parent, 2001
For nurses as for physicians, specialized training in pediatric nursing recognizes children’s unique developmental needs. Further specialization in neonatal and critical care reflects the very particular demands of caring for premature infants, infants with severe congenital anomalies, and critically ill or injured children. Other organized areas of nurse specialization include pediatric oncology and cardiology.
Nurses play a central role in providing day-to-day palliative care and home hospice care for adults. Experienced hospice nurses tend, however, to
have no training in pediatric care, and experienced pediatric nurses tend to have little training in palliative and end-of-life care.
Even experienced hospice nurses and other hospice staff may fear caring for dying children and find it very stressful, especially if they do not receive specialized training and ongoing support. Some nurses may also find it hard to separate their professional roles from their feelings as parents (Sumner, 2001).
More guidance on pediatric palliative nursing is becoming available. A comprehensive new textbook of palliative nursing (Ferrell and Coyle, 2001) includes three chapters specific to pediatric care (Hinds et al., 2001; Levetown, 2001; Sumner, 2001), and the major text on palliative medicine has from its first edition in 1993 included chapters on care of children (Doyle et al., 1998). (Other educational initiatives are described in Chapter 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). Another issue for home health care nurses is their isolation, which limits their opportunities to learn from peers as well as from the on-site training programs that may be available in hospital settings. Similarly, hospice nurses may also find that visiting patients at home, while rewarding in many respects, leaves them feeling somewhat isolated from other team members. Joint visits with other team members, team meetings, and other strategies, such as joint hospice-hospital or hospice-home care programs, may encourage learning and reduce isolation.
In its statement to the committee, the American Association of Critical Care Nurses (AACCN, 2001) noted that despite the time nurses spend with children in intensive care and with their families, nurses are not the key decisionmakers and are not always consulted in the development of a child’s care plan. One result, the group suggested, is that the care plan may be based on incomplete information about the child and family. Implementation of the plan may also suffer as a result of unacknowledged differences in physician and nurse perceptions.
Even nurses who never expected to encounter seriously ill children may become involved in caring for children with life-threatening medical conditions. As discussed further below, as the number of medically fragile children enrolled in schools has increased, school officials and school nurses have been challenged to support medication regimens for these children, to prepare for cardiac arrest and other medical emergencies, and to cope with other challenges once largely unknown to school health personnel (AAP, 2000d; see also Chapter 8). The school nurse also may educate a child’s teachers, other school personnel, and the child’s classmates and their families about an ill child’s condition and ways of easing the child’s reentry and continuation in school.
Social Work and Mental Health Professionals
Child psychologists and psychiatrists, as well as social workers, may be called on to provide psychological care for seriously ill or injured children and for their families, before and after a child’s death. Social workers have typically been an integral part of palliative and hospice care teams, available to families (parents especially) for help with emotional and practical concerns, including identifying community resources (e.g., home health agencies, funeral homes). In the hospital emergency department and intensive care unit, they often serve as the communication link between parents and the team caring for a seriously injured or suddenly ill child. In these stressful and often confused situations, their role is to help ensure that needed information is successfully communicated and that parents have an adequate opportunity to raise questions and concerns so that they can more effectively participate in decisionmaking about their child’s care.
The entry of child psychologists and psychiatrists into the field of palliative care is a relatively recent development. 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. Child-life specialists contribute to this goal. Based on a 1998 survey, the National Association of Children’s Hospitals and Related Institutions (NACHRI) reported that 97 percent of 112 responding hospitals employed at least one child-life specialist (NACHRI, 1998). Similarly, the American Academy of Pediatrics has reported that 97 percent of children’s hospitals and 82 percent of hospitals with pediatric residency training programs (in general or children’s hospitals) employed child-life specialists (AAP, 2000c). Large physician groups may also use child-life specialists.
Child-life specialists do not fit neatly into usual professional categories. As experts in communicating with children, they can help “translate” between clinicians and children. They may engage children in developmentally supportive and therapeutic play and in therapies using art, music, and dance. As discussed in Chapter 5, these techniques may help children express and cope with difficult emotions and offer relief from the stress of illness and medical treatment. In addition, child-life specialists may employ distraction and other behavioral techniques to help manage pain and other symptoms. In children’s hospitals, they also help provide supportive environments for siblings of sick children to play and interact with siblings of other children who are coping with similar situations. Particularly for children hospitalized repeatedly or for extended periods, child-life specialists become familiar people with whom children can safely share fears, worries,
and hopes that might otherwise be unexpressed. With the child’s permission, these concerns may be communicated to parents and the care team.
Child-life specialists typically work “9 to 5” and, thus, are not available to support children, families, and physicians when crises arise outside those hours. Unlike psychiatrists but like nurses and, often, clinical social workers and clinical psychologists, child-life specialists cannot directly bill insurers for their services. 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. Helping bereaved people may be a full-time responsibility or one aspect of the work of a chaplain, social worker, funeral director, hospice volunteer, or other interested individual.
Chaplains provide spiritual care to patients and families in hospitals and other care settings. They also provide emotional support and comfort and practical assistance to families coping with the death of a child (Sommer, 2001). As discussed in Chapter 5, provisions for spiritual care are part of hospital accreditation and Medicare hospice requirements. In general, however, the extent of chaplains’ involvement with dying children and their families is little documented or evaluated.
Hospital teachers provide individualized and group learning for patients well enough to leave their beds during the day. They also make rounds to help children who are confined to their rooms. Other teachers specialize in home tutoring. Hospital and home teachers can establish close relationships with children, who may feel comfortable sharing concerns with a home teacher rather than adding to their parents’ worries and stress (Weil, 2001). In addition, although such links are more the exception than the rule, videoconferencing and other technologies provide opportunities to help homebound children maintain contact with children, teachers, and resources at their regular school (Bowman, 2001).
Phlebotomists, respiratory therapists, physical therapists, and others who are skilled in working with small patients can reduce the physical and emotional distress caused by diagnostic and therapeutic procedures. Ideally, they will have equipment (e.g., needles and other intravenous equipment, breathing tubes, oxygen masks) appropriate for children of different sizes, and they will also develop skills in reassuring or distracting children and otherwise reducing their fears and anxieties. General hospitals with no pediatric unit are unlikely to have such specialized personnel and equipment.
Pediatric Care Teams
Multidisciplinary care teams are a feature of much pediatric emergency, chronic, and acute care, especially for children with complex conditions that require a period of inpatient evaluation and treatment. Thus, the neonatal intensive care team concentrates on the specialized needs of fragile newborns (including premature infants and those with serious congenital anomalies) and their families. The pediatric oncology team cares for children with cancer and their families. Emergency care teams work intensively for a compressed period of time to assess and stabilize children before transferring them to other care teams. Although health services are usually not organized to encourage it, a care team or some members of the team may provide both inpatient and outpatient care (e.g., inpatient and outpatient chemotherapy).
Regardless of the site of care, the usual goals of pediatric care teams working with children with serious medical conditions are multifaceted. They include
providing and coordinating care appropriate to all the physical, emotional, spiritual, and practical needs of the individual child and family including family needs after the death of a child;
caring for the child and family as a unit;
encouraging information sharing and consistency among team members and relevant others so that families do not receive conflicting or confusing messages from professional caregivers;
integrating family members into the care team and, thus, involving them more fully in establishing the goals of care and in making decisions; and
preparing for and coordinating transitions in the site or emphasis of care and providing continuity.
Ideally, team care is not only multidisciplinary (i.e., involves members from several disciplines) but also truly interdisciplinary (i.e., “is more than the sum of its parts”). Although the terms multidisciplinary and interdisciplinary are often used interchangeably, as used here, interdisciplinary refers to structures and processes that (1) encourage individual team members to understand and incorporate the perspectives of other disciplines into their own assessments and practices (consistent with licensure and other reasonable constraints), (2) reduce disciplinary misunderstandings, discord among team members, and gaps or discontinuities in care, and (3) forge more productive relationships and practices among individuals with different disciplinary backgrounds.
The composition of pediatric care teams will naturally vary depending on the nature of the child’s medical problem and the settings and kinds of services needed. The resources, traditions, and philosophy of the employing organization may also influence team composition. In general, however, the core of an inpatient team caring for a seriously ill or injured child includes a primary subspecialist physician (e.g., pediatric oncologist or cardiologist), one or more nurse specialists, a psychologist or social worker, perhaps one or more residents or fellows, and possibly a child-life specialist. Other subpecialists (potentially, but at present rarely, including a palliative care specialist) are brought in as needed. Supporting members of the team may include pharmacists, respiratory therapists, physical therapists, genetic counselors, dieticians, and chaplains.
Team care is widely viewed as central to inpatient palliative care and home hospice programs for both adults and children and their families. 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. The core of an inpatient consulting team may be nurses supported by a physician who is involved as needed. If the focus of care is primarily palliative and home based and if pediatric hospice services are available in the community and accepted by the parents, a home hospice care team may assume primary responsibility for care of the child and family. Again, nurses usually play a central role in hospice care teams.
When a child goes home for care that is primarily palliative, some families may prefer that the child’s oncology or other care team continue to take the lead, especially if the child and family are local. Geographic distance can, however, make this approach to home care impractical, and some families may prefer to have the child’s general pediatrician or family practitioner assume primary responsibility for the care of a child at home. As noted earlier, managed care rules may require such a transfer of responsibility if the focus of care shifts from cure or life prolongation to palliation.
Despite their seeming ubiquity, little systematic research appears to have focused on the numbers, structure, or performance of different kinds of pediatric care teams.7 Given (as reported below) the limited number of
inpatient and hospice palliative care programs for children, the number of specialized teams providing pediatric palliative and end-of-life care cannot be large. Increased implementation of pediatric palliative care will almost certainly involve more interactions between palliative care teams (both inpatient and home hospice based) 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).
In general, the effectiveness of care teams has been linked to conditions such as (1) appropriate composition and size of the team, (2) sufficient financial and other resources (e.g., information and communication technologies), (3) successful processes for setting goals, coordinating activities, evaluating performance (both processes of care and outcomes), and preventing or resolving conflicts; and (4) supportive professional and organizational cultures, (see, e.g., Fried and Rundall, 1996; Shortell et al., 1994; Opie, 1997; Mickan and Rodger, 2000). The fourth area—supportive professional and organizational cultures—is widely viewed as a major barrier to successful team functioning. In particular, the preparation of health care professionals to work in teams has been limited.
Although health professions education, in general, has a strong disciplinary and hierarchical character, preparation for teamwork is increasingly recognized as essential (see, e.g., O’Neil et al., 1998; Knebel et al., 2001; see also residency program requirements listed at http://www.acgme.org). Chapter 9 notes the importance of preparation for team care in undergraduate, graduate, and continuing health professions education. Chapter 10 urges more research into the dynamics of team care in different contexts (e.g., inpatient and outpatient care, primary and specialist care), its outcomes, and methods of successfully preparing professionals to function as members of teams.
ORGANIZATIONS AND SETTINGS OF CARE
As described in Chapter 2, more than 56 percent of child deaths (under age 19) in 1999 occurred in inpatient hospital settings, and another 16 percent occurred in outpatient hospital sites (primarily the emergency department). Approximately 5 percent of children were declared dead on arrival at a hospital. Children, unlike adults, rarely die in nursing homes, although some severely disabled children die in other residential care facili-
ties. For children with complex chronic conditions, the proportion of deaths occurring at home has been growing but is still smaller than for adults with such conditions. For both groups, most will receive inpatient care during advanced stages or exacerbations of their illness.
Because so many children die in the hospital and because inpatient curative and life-prolonging treatments so often continue for children until death is imminent, the availability and quality of inpatient palliative, end-of-life, and bereavement care are important for these children and their families. Even though increased availability and acceptance of pediatric home hospice programs may reduce the amount of hospital care provided to children with complex chronic conditions that end in death, inpatient care at the end of life is likely to remain more important for children than for adults.
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 does home care (Chaffee, 2001). Whether a hospital specializes in pediatric care may affect these and many other dimensions of care for children with life-threatening medical conditions.
We were shipped back to our local stupid hospital for the last blood transfusions. The staff was used to broken bones and healable stuff. They hadn’t a clue about cancer and the finality of Eric’s situation.
Becky Wooten, parent, 2001
Given the limited number and geographic distribution of specialized pediatric emergency and inpatient services, many children with life-threatening medical problems and their families must depend on general hospitals for care. In addition, children and families served by children’s hospitals distant from their home community must often rely, at some point, on a local general hospital for follow-up or crisis care, and some children will die there. This makes the quality of pediatric palliative services an issue not just for children’s hospitals but for any hospital that cares for children.
The pediatric services of general hospitals vary considerably, ranging from minimal in small rural and community hospitals to intensive and sophisticated in large medical centers. Clinical services provided by pediatric units in these latter centers may differ little if at all from those provided
in centers with pediatric units that describe themselves as children’s hospitals.
A recent Washington state study reported that 80 percent of the state’s nonpediatric hospitals provided some pediatric services and that one-quarter (mostly large hospitals) had separate pediatric units (EMSCWS, 2000). Of the 64 percent of state hospitals with intensive care units (ICUs), two-thirds 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) (American Hospital Association, 2000). About two-thirds of the responding hospitals reported providing (adult) ICU services, but only 9 and 17 percent of responding hospitals reported that they provided pediatric or neonatal intensive care services, respectively.
Children’s Hospitals and Related Institutions
In 2001, NACHRI, the association of children’s hospitals and related institutions had 161 members, 47 of which were self-governing, freestanding, comprehensive children’s hospitals located in 24 states, the District of Columbia, and Canada (NACHRI, 2001a,b). Other member hospitals function as units of larger hospitals, most of them university based. A few members are specialty hospitals that limit services to specific conditions such as neuromuscular or orthopedic problems. A number of hospitals with significant pediatric services are not members of NACHRI, but the committee found little summary information about these institutions.
One emphasis of modern children’s hospitals is the design and construction of facilities that incorporate child- and family-friendly physical elements, for example, nonfluorescent lighting, carpeting, play areas in waiting rooms, gardens, and family beds in patient rooms (Komiske, 1999). One potential advantage of freestanding children’s hospitals is that they do not have to compete with adult medicine for space or attention when facilities are constructed or remodeled.
Freestanding children’s hospitals, although they represent just 1 percent of all hospitals, are said to serve an estimated one-quarter of hospitalized children with congenital or chronic disease, and in combination with pediatric units of major teaching hospitals, they care for a substantial majority of these children (NACHRI, 2001a). In response to surveys, NAHCRI member hospitals have reported that 57 percent of their inpatient admissions, 68 percent of their inpatient days, and 76 percent of their inpatient charges relate to care for children with congenital or chronic conditions.
Many of these conditions are not, however, considered likely to prove fatal in childhood.
The focus of children’s hospitals on children with serious medical problems is also suggested by data showing that catastrophic cases (those generating charges of more than $50,000) account for about 5.5 percent of cases in freestanding, acute care children’s hospitals compared to 1.5 percent in pediatric programs of general hospitals (NACHRI, 1999). Almost half of the children cared for by children’s hospitals are poor or uninsured, emphasizing the “safety-net” role played by many of these hospitals in their communities.
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). Although specific figures are lacking, a substantial fraction of children who die will die in these units and will do so following decisions to limit life-support (see Chapter 4).
On average, intensive care beds account for about one-quarter of all beds in freestanding, acute care children’s hospitals, compared to about one-tenth of pediatric beds in general hospitals (NACHRI, 1999). Like trauma centers, NICUs and PICUs are classified into different levels. For example, Level III NICUs are expected to serve the highest-risk neonates and to have consultation and transfer agreements with hospitals that have Level I and Level II units or no units.
For cancer and certain other serious conditions, specialized diagnostic, treatment, and research centers have developed, usually as units of major university-based children’s or other hospitals. Some research suggests that specialized pediatric cancer centers are linked to better survival outcomes for children with cancer (Meadows et al., 1983; Kramer et al., 1984; Stiller, 1988; Wagner et al., 1995). The committee located no studies documenting differences in quality-of-life outcomes.
In guidelines on cancer centers, the AAP noted that safe but “resolute” use of the treatments (e.g., chemotherapy, radiation therapy) that are emphasized at these centers can have “devastating morbidity and appreciable mortality” (AAP, 1997b, p. 139). The guidelines do not, however, mention specifically the corresponding need for intensive and effective pain and other symptom management capabilities and for psychological, spiritual, and other support for children undergoing these treatments and for their families.8 An earlier statement on pediatric cardiology centers likewise did
not mention palliative care (AAP, 1991). The recent AAP policy statement on palliative care strongly endorses offering such care early in the course of illness for children with an “ultimately terminal condition” (AAP, 2000g). In addition, recent AAP (2001b) guidelines for pediatric emergency medical facilities called for explicit policies related to death in the emergency department and to DNR orders. Unlike earlier (1995) guidelines, the new guidelines do not explicitly mention support and follow-up for grieving families.
Although children’s hospitals may emphasize child- and family-friendly environments, one area of concern has been the harsh nature of the traditional NICU with its bright lights, noise, frequent handling, and frequent invasive and painful procedures. Parents of premature infants have noted the lack of research justifying the traditional NICU environment and urged less invasive care and more access for parents and other family members (Harrison, 1993). Recent AAP (2000a) guidelines on the prevention and management of pain and stress in neonates mention the need to minimize noxious environmental stimuli, and an earlier statement focused specifically on noise (AAP, 1997c). Such efforts to “humanize” neonatal intensive care should benefit all fragile neonates—those who survive and those who die—and their families. They also provide an opportunity for research to assess and improve infant quality of life as well as to reduce morbidity and mortality.
The social environment of neonatal and pediatric intensive care may also be unfriendly. For example, time and space restrictions on family access to a critically ill or injured child—especially when death is imminent—may add to the family’s emotional and spiritual distress and increase its suffering after the child’s death. Thus, the Canadian Pediatric Society’s guidelines on care for families experiencing perinatal loss recommend that “visiting policies should be around the clock, including during bedside rounds” (CPS, 2001, p. 471). The guidelines also state that families should have time and a private place to be with their baby after death.
A recent survey of children’s hospitals in the United States found that over 80 percent of the respondents reported open visitation policies for parents with children in NICUs, PICUs, and general inpatient units (Susan Dull, NACHRI, personal communication, July 16, 2002, based on data from George Little and JM Harris, II). Approximately 70 percent reported policies allowing parent access to the child’s medical record in the NICU or PICU; about two-thirds reported involving parents in the development of the child’s care plan.
Availability of Inpatient Palliative Care and Hospice Programs
A number of children’s hospitals have created inpatient palliative care or hospice programs, but they do not appear to be the norm. In preparing
for its statement to the committee, NACHRI circulated a special survey to its member hospitals to obtain information about their palliative services. Of 161 member hospitals, 48 (30 percent) responded (NACHRI, 2001a). Two-thirds of those responding said they were currently not able to provide the full array of palliative services. Almost a third of respondents indicated limited or no availability of inpatient or home palliative care or hospice programs. More than half indicated that lack of such services in the community limited their ability to discharge patients appropriately. Most but not all respondents (85 percent) reported pain management services; one-quarter of this subgroup reported having a pediatric palliative care team. Three hospitals reported the use of dedicated pediatric hospice or palliative care beds. In addition to these results, the survey cited at the end of the preceding section found that 82 percent of respondents reported regular assessment of children’s pain in the PICU, but the figure reported for NICUs was 69 percent.
The committee located no information on pediatric palliative care programs in other hospitals, but the number is likely to be low. For hospitals overall, survey data suggest that palliative care programs are far from common and that formal pain management programs have been slow to develop. 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 hospital-based hospice unit). Of the approximately 1,100 hospitals responding to this survey, 30 percent reported having a program and 20 percent had plans to establish one (Pan et al., 2001). More than 85 percent of the patients served by the programs reported in the survey had a cancer diagnosis. The most common reason for a consultation was pain management, which accounted for almost two-thirds of consultations, with consultations about the goals of care a distant second (one-quarter of the consultations).
Overall, the two NACHRI surveys as well as other reports and committee experience suggest that the capacity to provide comprehensive, reliable palliative and end-of-life care is quite limited, even in the hospitals that
specialize in treating children with life-threatening medical problems. Lack of pediatric hospice and similar care in the community further compromises the capacity of professionals in children’s hospitals to meet the needs of dying children and their families by discussing and providing timely referrals to such services.
Elements of Pediatric Inpatient Palliative Care
Based on home hospice concepts, some of the basic elements of inpatient end-of-life care for children and their families were outlined as early as 1982 (Silverman, 1982; Whitfield et al., 1982). These elements included broadening the decisionmaking process to include the family and the health care team, as well as the child’s physician, and providing a comfortable, private room for families of terminally ill children.
Central to most inpatient programs—whether for adults or children— is a referral and consultation service staffed by palliative care specialists, generally including physicians, nurses, social workers, and chaplains (ChIPPS, 2001; Levetown, 2001). Nurses may form the core of the team. Depending on patient and family needs and the concerns of the patient’s regular care team, an inpatient palliative care consultant may
help the patient, family, and their care team to understand and evaluate care options (e.g., starting or not starting mechanical ventilation, accepting hospice care) 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, child-life 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 plan of care at home; and
supervise the care of home hospice patients who require hospitalization for symptom management or family respite, whether or not the child and family have previously been cared for at the hospital.
A recent report on one inpatient program for neonatal intensive care portrayed service patterns that were generally consistent with the description above. Based on an analysis of care for nearly 900 infants admitted for
neonatal intensive care during a 30-month period ending in June 1998, the researchers found that the primary reasons for palliative care consultations were to assist with home hospice arrangements, advise on comfort measures, support the consideration of options such as DNR orders, and provide comfort to grieving families (Leuthner and Pierucci, 2001). Approximately one-quarter of the 51 infants who died during the study period received a palliative care consultation. An earlier study, which covered all infant deaths at the same institution, reported an increase in consultations over time from 5 percent in 1994 to 38 percent in 1997 (Pierucci et al., 2001).
One objective for inpatient pediatric palliative and end-of-life care is the availability of at least one room with home-like features. Such rooms may be equipped for mechanical ventilators, monitors, and other technologies, but the focus of both services and physical environment is still on peace and comfort (Levetown, 2001). For example, two Texas hospitals (University of Texas Medical Branch at Galveston and Christus Santa Rosa in San Antonio) have created a large room or suite (referred to as “Butterfly” rooms) that provides sofa beds and comfortable chairs for family and friends, kitchenette, television, carpeting, and other similar features. If parents wish the presence and support of extended family and friends when a child’s death is expected, the rooms can accommodate more than 30 people.
Box 6.3 presents a number of questions that may be useful for clinicians, hospital managers, and patient and family advocacy groups concerned about the availability, structure, effectiveness, and accountability of inpatient palliative or hospice care in a specific institution. These questions were adapted from a set that focused on adult care and take into account the discussion in Chapters 4 and 5. The committee believes that many of the basic features of inpatient palliative care services apply across the age spectrum.
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. Thus, to provide a comprehensive array of inpatient palliative care or hospice services for children and their families, hospitals and hospices will often have to rely on private fundraising and contributions. In Chapter 7, the committee recommends that coverage of pediatric palliative care be expanded and limitations on hospice coverage be eased.
Palliative and End-of-Life Care in the Home
Most home care arrangements assume that parents will provide substantial amounts of patient care, including care that involves advanced technologies such as mechanical ventilation and IV administration of powerful medications. For a child with a progressive neurological disease, such care at home may continue for years and may differ little on a day-to-day basis from care for children with severe conditions that are not expected to prove fatal. For other children, care at home may last only a short period once parents accept that curative or life-prolonging treatments have failed their child and decide that death at home rather than in the hospital will be most comforting to the child and family.
Hospices will serve some of these children and families, although, as described below, many hospices rarely if ever care for a dying child. 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 essential assistance.
The visiting nurse gave me literature on what to look for as death approached. She was the glue that held us together. . . . She came and dressed Eric and made phone calls after he died. She later told me that this was the first death she had dealt with. She was so calm and she kept me from losing it.
Becky Wooten, parent, 2001
We were happy with our home health care company, and things were going well. But when we got home from our spring break vacation, [our son] took a turn for the worse that required the hospice care.
Winona Kittiko, parent, 2001
Because hospice care may not be acceptable, available, or appropriate for all children and families who could benefit from palliative or end-of-life care at home, it is important to consider the role of home health providers as well as hospices in providing palliative and end-of-life care (Liben and Goldman, 1998). Providers of pediatric home health care services include children’s hospitals, other hospitals, home health care agencies, hospices, and independent professionals. Some providers specialize in home health care for children (see, e.g., NAPHCC, 2001), but the committee found no comprehensive data on the pediatric caseloads for these or other home
Training and Preparation
Staff, Facilities, and Other Resources
Continuity, Coordination, and Community Resources
Information Systems and Evaluation
SOURCE: Adapted from IOM, 1997; see also ChIPPS, 2001; Levetown, 2001; Hilden and Tobin, 2002; and Himelstein et al., 2002.
health care organizations. The caseload of most agencies is dominated by elderly Medicare beneficiaries (HCFA, 1999). In 1996, nearly 14 percent of those age 65 or over had one home health visit compared to less than 2 percent of children under age 6 and less than 0.5 percent of those aged 6 to 17 (Kraus et al., 1999).
The frequency, duration, and type of home health care services will vary depending on the child’s and family’s needs, geographic location, state licensure requirements, community availability of appropriate personnel, and family insurance and other financial resources. For some children located in rural areas, home health care providers may supplement in-home care with interactive and other telemedicine technologies. The committee found no data describing the extent of such services in this country, but discussions with major vendors suggest that fewer than 200 of the nearly 20,000 home health agencies provide telemedicine services to any of their patients (Field and Grigsby, 2002).
Because families are usually expected to take major responsibility for home caregiving, the AAP guidelines for home care for children with chronic disease recommend that if possible a family should have at least two members who are trained and prepared to take care of the child at home (AAP, 1995c). The guidelines also suggest that family members should, ideally, be prepared for their caregiving role by providing as much care as possible in the hospital before the child’s discharge. Further, the guidelines call for children to be included in home care training and education and to be responsible for self-care whenever possible.
Depending on the child’s diagnosis and care plan and family circumstances, including the child’s insurance coverage, home health care agencies may provide nurses, home health aides, physical therapists, social workers, and others to assist the child and family. Those providing pediatric home health care state that it generally requires more specialized skills and more time, thus allowing care for only two to three children during a day rather than the usual five to six adults (NAPHACC, 2001). (For a general guide to palliative care in the home, see Doyle and Jeffrey, 2000.)
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). Chapter 7 recommends changes in such policies to make palliative care expertise more widely accessible.
Many hospices provide home care under both their hospice license and separate home health care licenses. Under their home care license, these organizations may serve some patients who have fatal illnesses but who do
not fit the traditional hospice model and coverage rules. They may not fit because their course to death is unpredictable and could be lengthy or because they want to continue curative or life-prolonging treatments. Service under the home care umbrella may also be less painful emotionally for families. 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). The number has undoubtedly grown, but the committee found no firm count or estimate of the number of hospices that routinely provide care to a sufficient number of children to support specialized staffing, training, and outreach efforts.
Of the 3,000-plus existing hospice programs in the United States, 450 reported in a recent survey that they were prepared to offer hospice services to children (ChIPPS, 2001). The survey results do not, however, make clear whether these hospices actually have much or any experience providing such care. Based on discussions with staff of the National Hospice and Palliative Care Organization (NHPCO) and others and on its members’ professional experience, the committee suspects that fewer than 100 hospices have active pediatric programs with trained personnel, protocols, policies, and outreach efforts. As discussed elsewhere in this report, the federal government’s Center for Medicare and Medicaid Services is funding demonstration projects to test programs that provide more comprehensive services than those covered by current Medicaid hospice benefits.
Pediatric Home Hospice: Program Elements and Focus
In the United States, the first program of home-based care for dying children originated in the mid-1970s in Minneapolis under the joint sponsorship of a university hospital, a children’s hospital, and a large multispecialty physician practice (Martinson, I., 1993). (The original program no longer exists.) The first U.S. hospice also dates to the mid-1970s. In 1979, Edmarc was established as a community-based home hospice serving children (Armstrong-Dailey and Zarbock, 2001). In 1983, the nonprofit Children’s Hospice International began to provide resources to support the development of hospice services specifically for children. In recent years, the national association of hospices (NHPCO) has also supported efforts to develop pediatric hospice programs through the Children’s International Project on Palliative/Hospice Services (ChIPPS, 2001).
Hospice care for children differs from that for adults in a number of areas: patient characteristics, family concerns and decisionmaking, funding, and organizational resources. As discussed earlier, children’s needs are particularly variable, reflecting both developmental differences and differences in underlying medical problems and their course. In most situations, parents are legally responsible for decisions about their child’s care. Decisions to limit curative or life-prolonging efforts and focus exclusively on palliative care—as required for Medicaid and some private health coverage—are particularly difficult when the patient is a child.
Reflecting these differences, home hospice care for children builds on traditional hospice principles and practices but adapts them to accommodate the developmental characteristics and needs of children and the values and goals of their families (see, e.g., Goldman, 1996, 1999; ChIPPS, 2001; Armstrong-Daley and Zarbok, 2001; Sumner, 2001). Some hospices may develop special pediatric programs, but smaller hospices may make adjustments to incorporate children in programs that are adult-oriented or refer children to hospices with pediatric programs (Orloff, 2001). Hospice nurses and other personnel need special training to prepare them for the special requirements of working with young patients and supporting the families who are facing the exceptional stress of a child’s death. As noted earlier, even experienced pediatric and hospice nurses may have qualms about taking on this role. They may need moral support beyond that ordinarily recognized as necessary for the emotionally demanding work of hospice care.
Models and principles for pediatric hospice care are still being developed and tested. At a minimum, regardless of the patient population, turning palliative care principles into consistent, effective care at home involves certain core organizational capacities. These include
offering support for patients and families 24 hours a day, 7 days a week;
developing, evaluating, and improving organizational procedures and protocols for reliably and effectively meeting the physical, emotional, spiritual, and practical needs of terminally ill children and their families;
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;
providing reliable and immediate access to inpatient pediatric palliative care and other services for patients and families who require them;
training and assisting family caregivers; and
working, as appropriate, with the child’s specialist care team and general pediatrician.
When a child’s family and physicians have recognized that curative and life-prolonging care will fail or is failing, unfamiliarity with hospice and misunderstandings about hospice services may discourage families from fully evaluating the option of hospice care. Sumner (2001) has identified several such misunderstandings and argued that hospice personnel may have to make clear to families and clinicians—and ensure in practice—that hospice personnel do not take over the home or usurp normal parental care and authority but, rather, advise on ways to increase the child’s comfort and ease stresses on all members of the family. Further, hospice enrollment should not require or encourage the severing of all relationships with the primary care and specialist personnel who have been caring for the child and family, although health plan rules may limit relationships to unpaid consultations and emotional support. Perhaps most important, families should be assured that parents continue to make the decisions about the child’s care with information, consultation, and support from the child’s care team, including hospice personnel.
Box 6.4 presents a number of questions, similar to those for inpatient palliative care, that may serve as a guide for those concerned about the adequacy of palliative care and end-of-life care at home. Again, the questions were adapted from a set that focused on adult care, but the committee believes that the basic concerns apply to adults and children alike. The questions were framed somewhat generally so as not to exclude services provided by home health agencies. Given the mission of hospices and regulatory requirements, families whose child needs palliative or end-of-life care will probably find that hospices (and home health agencies closely affiliated with hospices) have more resources, clinical protocols, and experience in palliative, end-of-life, and bereavement care in general. 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. The latter relationship has become important as prenatal diagnosis has expanded the number of children diagnosed before birth with fatal medical conditions, and some hospices have begun to offer support to families that want to continue the pregnancy and achieve whatever time they can with their infant in the hospital or at home. Families cannot reliably be offered the option of such care without substantial cooperation from obstetricians and hospital obstetrical facilities and personnel.
Given the relatively small potential base of child hospice patients, a hospice that wants to create a pediatric program will often have to establish relationships with a number of hospitals, each of which will have its own procedures and conventions. If these hospitals have or are developing
Training and Preparation
Staffing, Facilities, and Other Resources
inpatient palliative care programs, that good news may be offset by concerns about competition for patients. In building relationships with hospitals and hospital-based specialists, hospice personnel will have be careful not to provoke a defensive reaction among hospital-based physicians, nurses, and others who may feel 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. Although the committee recommends changes
Continuity, Coordination, and Community Resources
Information Systems and Evaluation
SOURCE: Adapted from IOM, 1997; see also Armstrong-Dailey and Zarbock, 2001; Sumner, 2001.
in restrictive Medicaid and private health plan policies (see Chapter 7) and recognizes real fiscal constraints on hospice services, it also urges hospices not to define themselves and their mission in terms of Medicare and Medicaid coverage policies.10 A hospice’s refusal to accept a child can be a
bitter blow, especially when hospice managers are perceived as showing not the “the least sensitivity” to the gulf between their policies and the needs of parents to do the best for their child (Avila, S., 2001). Every hospice may not be able to mobilize resources to care for children not covered by public or private insurance or who do not fit payer’s requirements, but Medicaid policies do not preclude them from making the effort.
Hospices with smaller service areas may, in particular, find it financially and otherwise impractical to routinely extend their capabilities to children. Even for larger hospices, maintaining a high level of pediatric expertise 24 hours a day, 7 days a week can be a challenge. As recommended at the end of this chapter, the development of regional or national telephone or on-line consultation services can provide additional expert resources to hospices as well as generalist pediatricians or family practitioners and community hospitals.
Other Sites of Care
Residential Hospice Services
A few residential care programs are intended specifically to serve dying children and their families. Helen House, the world’s first residential children’s hospice, was founded in England in 1982, and some 20 additional freestanding hospices have since been established in Great Britain (Goldman, 2000a). These hospices may receive revenue from government sources, but they are private organizations that depend significantly and deliberately on private contributions and philanthropy.
Some hospices in the United States that serve children offer residential services. Examples include the Hospice of the Florida Suncoast, the San Diego Hospice, and Edmarc. A freestanding, residential hospice for children is scheduled to open in the San Francisco Bay Area in 2003 (George Marks Children’s House).
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. Another goal of residential hospice care, particularly in the United Kingdom, is to provide respite care when families need relief from the demands of caring for their child. Respite services can also be provided at the family home while the parents, siblings, and other family members vacation or visit distant loved ones. Residential
respite care offers families the opportunity to rest, attend to neglected family relationships and chores, and do things together without leaving home. As discussed in Chapter 7, funding for this kind of respite care is very limited in the United States.
Long-Term Residential Care Facilities
No matter how much they are loved and cherished, children with severe physical and mental disabilities can create tremendous emotional and financial burdens on their families, whose lives may be completely overwhelmed by a child’s care needs or by psychological stress resulting from a child’s violent or otherwise disruptive behavior. In 1997 an estimated 24,000 children aged 0 to 21 with mental retardation and developmental disabilities were being cared for outside the family home in residential facilities (Lakin et al., 1998). Another 83,000 were awaiting placement. Facilities range from small home-like settings to larger intermediate care facilities, although the latter have declined substantially in numbers and census in recent decades.
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. The acceptable setting of care for children with severe disabilities is an important and often controversial issue (see, e.g., Rosenau, 2000) that is beyond the scope of this report.
The role and provision of palliative and end-of-life care for adults or children in residential care settings has received little attention. A recently published review of records of deaths at a center for people with severe development disabilities reported during a 30-month period, 38 of 850 residents died and that of this group, 10 deaths involved end-of-life decisions (defined as decisions about end-of-life care that followed formal discussions of what care is in a resident’s best interests) (Lohiya et al., 2002). Among all residents, decisions about end-of-life care had been made for 16 individuals, 12 of which involved do-not-resuscitate orders and 4 of which involved continued full medical treatment. Decisions, which could be requested by employees or family members, were made by committee consisting of the resident, attending physician, resident-rights advocate, an uninvolved physician, social worker, clergy, psychologist, caretakers, and family or surrogate, legal conservator, or guardian. Decisions to forgo intrusive care had to be unanimous.
Quality of life is a concern for all residents of long-term care facilities, but comfort care is a particular concern for children who are bed bound or
technology dependent. Children who are unable to turn over in bed and those being tube fed appear to be at highest risk of death (Eyman et al., 1993, but see Strauss et al., 1997). Researchers involved in longitudinal studies of one large group of California children have called for controlled trials of tube feeding in these children to help clarify the benefits and burdens of that practice for this group of children (Strauss and Kastner, 1996; Strauss et al., 1996). Although focused on a special group of children in a special setting, such research is potentially relevant to decisions about appropriate palliative and end-of-life care for children being cared for at home and in hospitals.
The main objective of schools is education not health care. Nonetheless, various federal and state laws, reinforced by judicial decisions, require public schools to educate and assist increasing numbers of children with special health care needs (NICCY, 1996).11 Some of these children have conditions that are likely to end in death in childhood, but most do not. As discussed in Chapters 4 and 5, a central goal of care for ill children is the maintenance, insofar as possible, of normal life, and school is a major part of normal life for school-age children.
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. Both the American Academy of Pediatrics and the National Association of School Nurses assert that procedures such as the administration of intravenous medicines, catheterization, tracheostomy care, or gastrostomy tube feeding can all be undertaken in the school setting by a school nurse or an appropriately trained and supervised aide (AAP, 1987; NASN, 1996). Chapter 8 discusses legal issues involving family requests that schools respect care plans for their child, including do-not-resuscitate orders.
Perhaps more important than the provision of medical services in school are the efforts of teachers and other school personnel to offer a child with a
serious medical condition as normal and supportive an environment as possible given the child’s condition and need for assistance. This will normally mean preparing classmates and other children for condition- or treatment-related changes or differences in a child’s appearance or functioning. Some children’s hospitals, pediatric oncology teams, and other groups have established formal programs to assist families and schools with a child’s reentry. School systems and related programs can also offer support to an ill child’s sisters and brothers by educating teachers and classmates about children’s experiences living with a sibling who has life-threatening medical condition.
These kinds of support and preparation are important because children can be cruel to those who are different. One parent told the committee that he learned after his 11-year-old daughter’s death that kids had made fun of her because of her hair loss and were afraid of her because she had cancer— “and the teachers did not how to handle it” (Weil, 2001). His response was to develop a comprehensive educational program—“using cancer as a metaphor for all difference”—to help teach understanding, respect, compassion, and acceptance (Washburne, 2000, p. 2; Weil, 2001). The program gets its name and theme from a short story that the daughter, Kelly Weil, wrote three months before her death about Zink the Zebra, who had spots instead of stripes and was treated differently by other zebras. The program is now available to and being used by preschool programs, schools (kindergarten through eight grade), and scout troops (Weil, 1996).
When a child dies or leaves school for what is expected to be the terminal phase of his or her illness, schools may facilitate support groups for classmates of the child and help the children express their sadness, for example, by making cards for the dying child or for the family after the child’s death. Following a child’s sudden and unexpected death, for example, from violence or a car crash, schools may organize counseling and bereavement services for classmates. Especially upon the death of older children, classmates and friends may attend the funeral.
A number of camps have been organized to serve children living with serious medical problems that preclude participation in traditional camp programs. Camps vary in emphasis, but some focus on children with life-threatening conditions such as cancer, end-stage renal disease, cystic fibrosis, or AIDS. Some camps invite siblings to participate or provide special sessions especially for brothers and sisters of children with a life-threatening condition. Unlike their ill brother or sister, siblings may have no contact with other children facing similar circumstances, and thus a special summer camp can be an important resource for them.
Special camps usually rely on trained volunteers, led by just a few paid specialists. Nurses and doctors may volunteer their time, valuing the opportunity to see children other than “on the wrong side of a sharp object.” Nurses provide most of the medical care, including distribution of medications, but a physician is available in case of emergencies and serious changes in a camper’s health status. Camps may be staffed and equipped to provide chemotherapy, blood and platelet transfusions, intravenous fluid therapy, hemophilia factor replacement, pain therapy, and other curative or palliative therapies. In addition, they may aim to improve the child’s medical status, for example, by helping children with cystic fibrosis gain weight (Rubin and Geiger, 1991).
Staff of these special camps must be actively aware of the particular circumstances of each camper. Sometimes they must restrict certain activities for the safety of other campers, for example, excluding HIV-positive children with open sores from the swimming pool (Pearson et al., 1997).
Such camps can be very significant to seriously ill children, important enough to make one of their goals be to live long enough to attend camp again before they die. Occasionally, children do die while at camp. Most camps memorialize campers who have died as a way to recognize their lives, however brief. For instance, a tree may be planted to honor the children who died during the year and then it can be decorated with friendship bracelets or painted rocks made by campers and staff. 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
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. For some children and families, care provided by home health organizations will be welcome; for others, hospice will better meet their needs. Some children may move from one to the other as their needs change. Flexibility, however, can come at the cost of complexity and fragmentation. This puts a premium on coordinating strategies, including the medical home and improved versions of older mechanisms such as hospital discharge planning and insurer case management.
Box 6.5 presents the basic objectives of a community-focused approach to care at the end of life. A community approach to care that supports these objectives would include a mix of inpatient and home care resources—
SOURCE: Adapted from IOM, 1997.
organizations, personnel, programs, policies, and procedures. In the foreseeable future, it would have to be constructed within and around this country’s existing arrangements for organizing and delivering care, which are—on the whole—decidedly nonintegrated, uncoordinated, and yet often inflexible. Rural and smaller communities present particular challenges that call for regional consulting and other supportive services, which are recommended at the end of this chapter.
In some communities, children’s hospitals can play a central role in developing programs to coordinate palliative and other care across inpatient, outpatient, and home settings. 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
families before, during, and after the child’s hospitalization (Dana-Farber, 2001). It is primarily a consultative service for children admitted to the hospital but includes educational and outreach activities to increase awareness among physicians, families, and the community. An important element of the program is bereavement support for both families and clinician caregivers. For the latter, the program conducts weekly “caregiver bereavement rounds” that encourage reflection on the death of a patient and review of the care plan’s adequacy. Like a number of other pediatric programs, it has been funded in part by private foundation grants.
Where community size and resources limit what can be done locally, regional responses may be needed. 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. Start-up resources for such programs might be found through government and private grants, but maintenance of a program could be difficult without some kind of health plan reimbursement for consultative services, including those provided by telephone.
Telemedicine as an Option
One option to extend services into rural areas and smaller communities is telemedicine. Defined broadly, telemedicine is the use of electronic information and communications technologies to provide and support health care when distance separates the participants (IOM, 1996b; Field and Grigsby, 2002). Given insurance traditions and limited evidence of cost-effectiveness (see, e.g., AHRQ, 2001c), health insurance coverage is limited for most telemedicine applications beyond radiology, where direct patient contact has not been part of usual consultative practice.
Several projects have tested or are testing telemedicine to support intensive management of serious chronic conditions. Although not designed for patients who are dying, they could provide some useful lessons about benefits, limitations, and costs of such care. Some projects focus on rural areas, and Congress has authorized Medicare payment for certain telemedicine services in rural areas (HCFA, 2001g). An increasing number of Medicaid programs and some private health plans also cover telemedicine services under certain circumstances, and a few states prohibit insurers from reimbursing differently for telemedicine and regular medical services (OAT, 2001).
Some of the telemedicine applications being tested provide both medical monitoring and hardware and software (e.g., sensitive videocameras,
instruments to measure heart rate and other physiological parameters that are connected to telephone modems that can transmit the information; software that alerts clinicians to atypical findings). Some also include individual patient Web sites that link patients with physicians, nurse practitioners, and other health care personnel, and some include links to other patients and families. To support patient self-care activities, the Web sites may also provide easy Internet access to targeted clinical and educational information and links.
A two-year study involving hospices in Kansas and Michigan and researchers at Michigan State University and the University of Kansas has been investigating telemedicine to support hospice care. (Whitten et al., 2001). In a preliminary report, the researchers concluded that hospice personnel were cautious but supportive whereas patients and families were uniformly positive, although some families declined the service. The state of Florida is funding Hope Hospice to test a videoconferencing application that will allow a nurse to visually check the patient, medical equipment, and caregiving procedures (Hospice, 2001).
At Beth-Israel Deaconess Hospital in Boston, a federally funded, randomized controlled trial of an intervention for families with very low birth weight infants reported improved family satisfaction and lower costs for the intervention group (Gray et al., 2000). A central feature of this application was an electronic communications link for parents that provided information about their hospitalized infants, including daily photographs, daily progress reports, scheduled live video visits with babies and their nurses, and e-mail access to clinicians. With the end of federal support, the hospital is marketing the program to large employers and Medicaid, and several other hospitals are reported to be trying the program. This program was not designed for children who are not expected to survive, but it could nonetheless provide useful lessons (Halamka, 2001).
Interactive and noninteractive telemedicine has grown slowly in the face of insurer wariness, unfriendly technologies, and physician disinterest. As technological development continues and research clarifies its benefits, limitations, and costs, remote patient monitoring applications of telemedicine are likely to grow.
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.
The experience of advocates of better pain management can help guide the development of strategies to improve other aspects of adult and pediatric palliative and end-of-life care. As described by one leader in national and international initiatives to improve pain management for adults and children, cancer pain was identified in the 1980s as a “wedge issue” because of a strong professional and public perspective that pain relief in cancer patients should be a priority (Kathleen Foley, M.D., Memorial Sloan-Kettering Cancer Center, personal communication, June 19, 2002). As cancer pain relief strategies evolved, it became clear that clinicians could not provide comprehensive, consistent, and effective care for patients with pain without attending to their multiple symptoms and other needs and without considering the needs of their families. That is, the focus needed to expand to patient- and family-centered palliative care conceived broadly. For example, what began in 1986 as a World Health Organization monograph on cancer pain was later broadened to include comprehensive care including palliative services (WHO, 1998).
As part of a comprehensive strategy for care improvement, advocates identified multiple targets for action: government policies including payment for palliative care and access to effective medications; public education to create awareness that effective strategies were available to prevent and relieve pain; professional education about effective use of existing knowledge to prevent suffering; and scientific research to build new knowledge. 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-of-life, and bereavement care—including many who led efforts to improve pain management—have learned from the pain management experience. The web sites of the Open Society Institute’s Project on Death in America (http://www.soros.org/death), the Last Acts program initiated by the Robert Wood Johnson Foundation (http://www.lastacts.org), and other linked sites document their multifaceted approach to care improvement.
The discussion below focuses on steps clinicians, administrators, and others can take—usually in collaboration with others in the community and nationally—to define responsibilities and implement and test strategies for improving care. All those involved in care for children with fatal or poten-
tially fatal conditions should act to remedy deficits in care. However, because care for such children is often concentrated in neonatal and pediatric intensive care units, these units and their governing institutions must play a central role.
Communication, Goal Setting, and Care Processes
Practice guidelines and administrative protocols are, as discussed earlier, one means of providing direction and defining expectations and responsibilities for the health care professionals and organizations that care for children with fatal or potentially fatal medical conditions. If implemented, they should increase the consistency of services and provide a base for evaluation of the effectiveness of the recommended practices and procedures.
Existing literature and committee experience suggest that even hospitals that regularly care for children who die often lack protocols and procedures to guide such basic aspects of palliative and end-of-life care as the assessment and management of pain and other symptoms, the communication of diagnosis, prognosis, and treatment options, and the ethical and competent management of end-of-life decisions and interventions. The committee recognizes that the evidence base is limited but believes that “institutionalizing” existing knowledge and experience is an important step in improving care and building better knowledge to guide future care.
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 end-of-life decisions about such interventions as resuscitation and mechanical ventilation.
As discussed earlier in this chapter, guidelines and protocols should be based on systematically developed expert consensus and on scientific evidence to the extent it is available. Guidelines and similar statements developed by reputable national organizations should be a starting point when possible, but local review and adaptation will often be necessary and helpful to meet local needs and win support from those who must implement guidelines and protocols. Given this country’s cultural, religious, and ethnic diversity, guidelines and protocols should also be sensitive to this diversity and flexible enough to accommodate departures from usually advised procedures.
Depending on the aspect of care in question, clinical practice guidelines and institutional protocols may include or be supplemented by ethical guidance, model conversations, checklists, and documentation standards. Once adopted, guidelines and protocols are one obvious candidate for quality improvement projects as discussed earlier.
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 others— can 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. As observed in Chapter 5, an abrupt end to contact soon after the child’s death can feel like—and be—a kind of abandonment.
Despite the shortfalls in the research base and the need for more research on bereavement interventions (see Chapter 10), the committee concludes that enough experience and judgment is available to guide the development, implementation, and assessment of systematic processes for offering and providing bereavement support. Such support should become a more consistent and reliable service of hospitals that routinely care for children who die and their families.
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-of-hospital 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.
Coordination and Continuity of Care
Parents repeatedly cite the frustrations they experienced in coordinating the care needed by a very ill child. Reducing the burdens of care coordination is a formidable challenge. This is especially true for children with complex, chronic problems that require inpatient, home, and community-based services from many different professionals and organizations that may be separated geographically, institutionally, and even culturally from each other. As described earlier in this chapter, interdisciplinary care teams, case managers, disease management programs, and medical homes are important but still incomplete foundations or strategies for care coordination and continuity. These strategies themselves have to be coordinated or linked within and across organizations and sites of care.
The committee recognizes that the development and institutional adoption of guidelines or protocols as recommended above is but one step toward changing practice and improving outcomes. Other steps include the assignment of institutional accountability for the implementation of protocols (including the identification of barriers to implementation), 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. In addition to supporting competent clinical services, protocols should promote the coordination and continuity of care and the timely flow of information among caregivers and within and among care sites including hospitals, family homes, residential care facilities, and injury scenes.
An essential foundation for improved coordination of care—and improvements in the quality and efficiency of health care generally—is better
medical information systems that make patient information available whenever and wherever it is needed (see, e.g., the reports and citations in IOM, 1991, 2000c, 2001b and resources listed at http://www.amia.org/resource/pubs/f3.html). Such systems are not yet in place within most individual health care systems much less in forms that allow quick, reliable, and secure access to information across sites of care. Interim information strategies— including paper-based techniques—are also needed.
In addition to investing in better medical information systems, it is also important to continue public and private investments in other system changes that will make it easier for local institutions and communities to improve palliative, end-of-life, and bereavement care for children and families. Chapter 7 outlines directions for change in the financing of care, and Chapters 9 and 10 discuss educational changes and research directions.
Regional Support for Rural and Small Communities
Children with life-threatening medical conditions are often referred to specialized centers for treatment. Some will need little follow-up care, but others will require considerable amounts of care after they return home. Families in rural areas and small towns and the local health care professionals, community hospitals, and other organizations that serve them may need special support in caring for such children. Such support may involve a mix of written protocols, family guides, telephone consultations, Internet-based information, interactive videoconferencing, and other tools. Children’s hospitals have an important role to play in developing such consultation and information resources. 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. These resources should include the following:
consultative services to advise a child’s primary physician or local hospice staff on all aspects of care for the child and the family from diagnosis through death and bereavement;
clinical, organizational, and other guides and information resources to help families to advocate for appropriate care for their children and themselves; and
professional education and other programs to support palliative, end-of-life, and bereavement care that is competent, continuous, and coordinated across settings, among providers, and over time (regardless of duration of illness).
Neither regional support services nor actions to improve the coordination and continuity of care are free. In some cases, these activities and others recommended here may promise and produce savings (e.g., from avoided hospitalizations or transfers) that cover or exceed their costs. The costs and savings may, however, sometimes accrue to different parties (e.g., program costs for hospitals and savings for insurers or families). State and local governments and philanthropic and other organizations may provide funds or services in kind to help establish telemedicine and other supportive programs. If, however, the system for financing the provision of services to individual patients and families fails to cover the kinds of palliative, end-of-life, 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.