The interdisciplinary approach is a cornerstone of a well-functioning pediatric palliative care team. These teams are most often available as an inpatient consultation service, are composed of professionals representing multiple disciplines, and are used during the illness course of a child with life-threatening and chronic complex conditions, especially during challenging health care decision-making near end of life. This article reviews the current structure of the palliative care team, explores opportunities for inclusion of other vital team members, and proactively identifies the challenges that may occur when involving more providers in a child’s and family’s care.
Key points
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The importance of interdisciplinary care and its basis as the composition of a mature team is broadly embraced.
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There is a growing body of evidence to support positive outcomes of inpatient/hospital-based pediatric palliative care involvement.
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With increased and earlier use of pediatric palliative care, the interdisciplinary pediatric palliative care team has a responsibility to broaden collaboration with outpatient and community-based supports so as to provide optimal care throughout life.
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Embracing team meetings to ensure shared understanding and a unified approach among disciplines can bridge challenges in the care team and improve the child’s care process.
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Challenges within the interdisciplinary team itself, as part of the larger care team, can be anticipated and improved with a clear team philosophy and understanding of roles.
Justin’s cancer has recently relapsed. With cure seeming unlikely, the focus of his care is more deliberately supporting quality of life. Despite incredible fatigue and intermittent pain, every day he gets up and goes to school on the bus with his friends, wanting no special treatment from his teachers. His symptoms, however, require diligent assessment and intervention. Justin’s home care nurse is able to provide on-going consultation with the school nurse, his teacher, and principal with the back-up of Justin’s oncologist, primary care pediatrician, and the palliative care team, so that he can finish the school year with his classmates. During an inpatient admission, his palliative care team is consulted to review his symptom management and supports. How can the team best work to ensure that Justin’s care is consistent and optimal across all settings?
Introduction
Interdisciplinary care is a core value in palliative care and a foundation of quality practice. It is an essential part of the team-based practice of palliative care, although the form it takes will vary based on limitations in available resources and local preferences. On another organizational level, interdisciplinary care is also an important part of caring for those children with complex conditions and treatment courses receiving pediatric palliative care, where the palliative care team may be one of several involved, to ensure and optimize care in the many settings in which children may find themselves. Limitations to the evidence base with regard to outcomes from this approach stand in contrast to the fundamental confidence in its advantages.
Palliative care is appropriate and beneficial for most children with life-threatening illness for months, years, or their entire lifetime. The vast majority of children do not spend their entire lives inpatient, where robust palliative care services more typically exist. Therefore, pediatric palliative care as a medical subspecialty must confront its responsibility to expand its services and attitudes, and to meet the needs of children earlier and regardless of location. Based on best practice and trends, it should be recognized that with earlier implementation of interdisciplinary palliative care in a child’s illness trajectory, interdisciplinary teamwork will expand and encompass more key players than just the traditional inpatient palliative care team.
To effect earlier involvement, a palliative care team may need to contribute to the environment of interdisciplinary collaboration by providing education about the communication needs of families with ill children, the symptom burden of potential patients, the nature of suffering, or improved outcomes with earlier involvement. Another critical issue is promoting an understanding that cure-directed and palliative care are not mutually exclusive in any of the settings in which a child might receive care, particularly with the assurances of concurrent care provided by the Patient Protection and Affordable Care Act of 2010 (discussed in the article by Sheetz and colleagues, elsewhere in this issue). The increasing incorporation of palliative care in the treatment of children who will benefit promises earlier conversations about goals of care, and the feeling among families of having more choices sooner in their child’s care, in many settings.
Introduction
Interdisciplinary care is a core value in palliative care and a foundation of quality practice. It is an essential part of the team-based practice of palliative care, although the form it takes will vary based on limitations in available resources and local preferences. On another organizational level, interdisciplinary care is also an important part of caring for those children with complex conditions and treatment courses receiving pediatric palliative care, where the palliative care team may be one of several involved, to ensure and optimize care in the many settings in which children may find themselves. Limitations to the evidence base with regard to outcomes from this approach stand in contrast to the fundamental confidence in its advantages.
Palliative care is appropriate and beneficial for most children with life-threatening illness for months, years, or their entire lifetime. The vast majority of children do not spend their entire lives inpatient, where robust palliative care services more typically exist. Therefore, pediatric palliative care as a medical subspecialty must confront its responsibility to expand its services and attitudes, and to meet the needs of children earlier and regardless of location. Based on best practice and trends, it should be recognized that with earlier implementation of interdisciplinary palliative care in a child’s illness trajectory, interdisciplinary teamwork will expand and encompass more key players than just the traditional inpatient palliative care team.
To effect earlier involvement, a palliative care team may need to contribute to the environment of interdisciplinary collaboration by providing education about the communication needs of families with ill children, the symptom burden of potential patients, the nature of suffering, or improved outcomes with earlier involvement. Another critical issue is promoting an understanding that cure-directed and palliative care are not mutually exclusive in any of the settings in which a child might receive care, particularly with the assurances of concurrent care provided by the Patient Protection and Affordable Care Act of 2010 (discussed in the article by Sheetz and colleagues, elsewhere in this issue). The increasing incorporation of palliative care in the treatment of children who will benefit promises earlier conversations about goals of care, and the feeling among families of having more choices sooner in their child’s care, in many settings.
Composition of the interdisciplinary team
Virtually all literature related to palliative care standards stresses the importance of an interdisciplinary palliative care team structured around the child and family, equipped to address physical, psychosocial, emotional, practical, and spiritual needs of the child and family. A truly holistic interdisciplinary approach will provide genuine coordination of care, starting at the time of diagnosis, across the continuum, during transitions, and facilitated by effective communication and case management. Research on health care teams has concluded that diversity of participants predicts better discussions, adjustment to developments, and service delivery.
The American Academy of Pediatrics recommends that mature palliative care teams include physicians, nurses, social workers, case managers, spiritual care providers, bereavement specialists, and child life specialists, and that all hospitals that frequently care for children with palliative care needs should have dedicated interdisciplinary teams for the provision of palliative care. Simple distinctions between the expertise available on a palliative care team is outlined in Table 1 . Although these roles may seem separate, interdisciplinary collaboration by its nature may lead to overlap and the adoption of common methodologies so as to provide unified care, as is discussed later in this article.
| Discipline | Expertise |
|---|---|
| Medicine |
|
| Nursing |
|
| Social work |
|
| Child life |
|
| Pastoral care |
|
Such well-established teams are most often found in hospital settings in which these disciplines are readily available. Of 226 hospitals identified by the National Association of Children’s Hospitals and Related Institutions, almost 50% have a pediatric palliative care program, with continued growth likely. These teams continue to be strengthened by professional advancement opportunities. Since 2006, the American Board of Medical Subspecialties has recognized Hospice and Palliative Medicine as a subspecialty requiring board certification. Nurse practitioners have newly established Advanced Certification in Hospice and Palliative Nursing by the National Board for Certification of Hospice and Palliative Nurses. Advanced practice nurses who hold this certification are regarded as experts in their field. With consideration for the relative newness of the specialty, it is understood that teams may be led by a variety of disciplines, changing as needs evolve.
Even in the last year of life, most children will spend significantly more time at home than inpatient, which raises consideration of how children can access palliative care services outside hospital walls. Beyond the core inpatient palliative care team, valuable supports may be available from community-based providers and services. Table 2 illustrates examples of the wide variety of both inpatient and outpatient providers and services, whose involvement may positively impact any given child’s and family’s quality of life and therefore should be integrated more fully in the plan of care. Both the medical home model and community-based pediatric palliative care programs offer encouraging opportunities for support of palliative care principles across care settings.
| Inpatient | Outpatient |
|---|---|
|
Primary care provider or medical home Community pediatric palliative care service Home health agency Hospice (when appropriate) Care coordinator/case management School/school-based services Faith-based community Durable medical equipment providers Early intervention Infusion company Rehabilitation therapies School-based services Creative arts or expressive therapy Pharmacy Integrative medicine Mental health providers Emergency medical services |
The Family-Centered Medical Home
Medical care has long been associated with fragmentation, high costs, high utilization, reduced value, and ultimately poor quality of life. In particular, children with complex medical problems and/or multiple chronic conditions may receive less than optimal care through the traditional, physician-centered model. As an alternative, a patient-centered approach places an emphasis on coordinated care and communication, and has been shown to lead to improved patient outcomes, satisfaction, and associated reductions in health care costs. The medical home framework of accessible, continuous, family-centered, coordinated, and culturally effective care is an especially helpful model of care for those children with complex conditions and special health care needs.
Undeniably, much of the literature related to successful efforts in pediatric palliative care also stresses the value of care coordination as a critical element, and there is strong accord in the values set forth in the family-centered medical home and pediatric palliative care teams. This congruence in patient-care values makes the medical home a natural but underutilized extension of a child’s palliative care team. The most recent American Academy of Pediatrics palliative care policy statement reinforces the importance of all general pediatricians, subspecialists, and family providers being comfortable with palliative care principles and having knowledge specific to the basic provision of palliative care. If the medical home and palliative care model were integrated, and children were able to receive this basic palliative care as part of primary care, this would positively support the growing capacity issue of palliative care specialists available for the highest-need patients. There is tremendous opportunity for the medical home model and palliative care to collaborate and support the family-centered mission of care moving forward.
Community-Based Pediatric Palliative Care Programs
The evidence base supporting satisfaction with home-based pediatric palliative care is growing as delivery models develop. In a recent study, improvement in patient quality of life and provider communication was found after pediatric palliative care was introduced, as well as decreased parental distress. The implications of the Patient Protection and Affordable Care Act of 2010 have altered the landscape of community-based palliative and hospice supports for children who would not previously have had access to services. In addition, community-based pediatric palliative care programs are multiplying throughout the United States via various funding streams, waivers, and initiatives. This expansion demands training and workforce development, as the existing hospice community lacks available pediatric palliative care experience. This is further complicated by the decrease in number of hospices willing to care for children despite increasing acceptance of hospice care. A recent study of hospital-based pediatric palliative care programs found that only 10% provide home-based palliative care services, with most staffed only during work-week days, despite continuous access to a palliative care clinician being highly valued by families. There is tremendous opportunity to capitalize on the growth of these community-based programs as collaborative extensions of hospital-based teams, as they continue to multiply. Such a partnership would provide community-based teams with access to resources through more well-established inpatient teams, while supporting the home-based, around-the-clock, level of care that provides the added layer of support so valued by families.
No single provider or team can adequately manage the holistic care of a child and family. Programs should explore beyond themselves and partner with others who may be significant participants in the child’s and family’s life, be they clergy, teachers, or complementary and alternative providers, and provide leadership for this collaboration ( Fig. 1 ). Just as a child’s health may wax and wane, the interdisciplinary care team must remodel itself to ensure that key figures are central and available, with the entire team remaining closely informed. Ultimately it is the responsibility of the entire team, both inpatient and outpatient, to collaboratively care for a child and family, whether it is the community pediatrician having a basic understanding of palliative care principles, or the inpatient team supporting adoption of the medical home model.
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