CHAPTER 6
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.



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CHAPTER 6 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.

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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 General Concepts 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.

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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

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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-

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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 1   This discussion draws, among other sources, on IOM, 1990a, 1992, 2001b; Atkins and DiGuiseppi, 1998; Lohr et al., 1998; Woolf et al., 1999; Feder et al., 1999; Browman, 2001; Ellershaw et al., 2001; and Harris et al., 2001.

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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 2   The orders are presented in a bright pink document that is to be attached to the front of a patient’s medical record in a hospital or nursing home. Oregon also has changed the scope of practice for emergency medical responders so that they can honor POLST provisions. In addition, the state has revised its advance directive statute and, in general, made comfort care a priority for dying patients (Tolle and Tilden, 2002).

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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-

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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

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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

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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). 3   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. 4   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).

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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 General 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

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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. Camps 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.

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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 General Beyond individual professionals and institutions, special care teams, and medical homes, children who die and their families need community systems of care that respond to the differences in child and family circumstances and values and that provide a range of services and settings of care to accommodate these differences. 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—

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BOX 6.5 Objectives of Community Systems of Palliative, End-of-Life, and Bereavement Care Making palliative care available wherever and whenever needed by child and family from the time of diagnosis through death and, for the family, after death Providing sufficient flexibility in attitudes and procedures that special needs of child and family can be recognized and accommodated insofar as possible at home or in the hospital Encouraging timely referral to home hospice for children whose medical problems and personal circumstances make such care feasible and desirable Allowing flexible arrangements for home health care for patients whose prognosis is uncertain but for whom palliative services at home would be valuable in preventing and relieving symptoms and discouraging unwanted or inappropriate life-prolonging interventions Encouraging, when possible, the continued involvement of the child’s primary care physician through the course of the child’s life and the continued involvement of specialist physicians and health care teams as valued by children and families after the goals of care have shifted away from cure toward comfort Developing protocols and procedures for transition planning that prepare clinicians and others to manage common child and family situations (related to, e.g., medical condition, place of residence, comfort with managing care at home, financial resources) Making necessary and helpful information readily available to families and clinicians (e.g., truly portable and accessible records of care plans and preferences, training programs or materials for family caregivers) Supporting activities and programs that respond to nonmedical needs of children and families (e.g., camps, schools, religious programs) 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

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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,

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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.

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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-

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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.

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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. Bereavement Care Although many families will rely primarily on support from other family members, friends, neighbors, and spiritual advisors after a child’s death, they may also seek care from their primary care physician, hospice personnel, psychotherapists, grief counselors, or family support groups. Still, the child’s specialist care team—physicians, nurses, social workers, and 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;

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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

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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;

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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.