I n t e rd i s c i p l i n a r y C a re Using Your Team Monica Ogelby,
MSN, APRN, CPNP
a
, Richard D. Goldstein,
MD
b,
*
KEYWORDS Interdisciplinary Pediatric palliative care Children and youth with special health care needs Medical home Continuity of care KEY POINTS The importance of interdisciplinary care and its basis as the composition of a mature team is broadly embraced. There is a growing body of evidence to support positive outcomes of inpatient/hospitalbased pediatric palliative care involvement. 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. 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. 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.
CASE VIGNETTE 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?
a Pediatric Palliative Care Program, Department of Vermont Health Access, State of Vermont, 312 Hurricane Lane, Suite 201, Williston, VT 05495, USA; b Pediatric Advanced Care Team, Boston Children’s Hospital, Dana-Farber Cancer Institute, Harvard Medical School, 450 Brookline Avenue, Boston, MA 02215, USA * Corresponding author. E-mail address: [email protected]
Pediatr Clin N Am - (2014) -–http://dx.doi.org/10.1016/j.pcl.2014.04.009 pediatric.theclinics.com 0031-3955/14/$ – see front matter Ó 2014 Elsevier Inc. All rights reserved.
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INTRODUCTION
Interdisciplinary care is a core value in palliative care and a foundation of quality practice.1,2 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 conditions3 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.4 Another critical issue is promoting an understanding that cure-directed and palliative care are not mutually exclusive5 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.6 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.7 Research on health care teams has concluded that diversity of participants predicts better discussions, adjustment to developments, and service delivery.8 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.6 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.
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Table 1 Distinctions between palliative care professionals Discipline
Expertise
Medicine
Address medical needs, such as pain and symptom management, as well as speaking to the implications of medical interventions. Take the lead on framing the illness trajectory and prognosis, as well as having a special role in interacting with other medical specialties.
Nursing
Clinical support and hands-on care while teaching families how to best provide care for their children. Support other staff at bedside.
Social work
Address broad spectrum of factors that influence families, such as housing, transportation,41 family dynamics. Provide psychosocial/emotional and bereavement supports.
Child life
Provide psychosocially driven interventions that promote coping through play, preparation, education, and self-expression activities48 for both patient and siblings.
Pastoral care
Support spiritual needs of child and family. Access supports specific to a family’s religious beliefs and values. Communicate spiritual needs of family to care team for consideration in care plan.
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.9 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,10 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. 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.11 As an alternative, a patient-centered approach places an emphasis on coordinated care and
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Table 2 Interdisciplinary team members Inpatient
Outpatient
Attending medical team Continuing subspecialty providers Bedside nurse Case manager Rehabilitation therapies Palliative care team Nurse practitioner Palliative care nurse Social worker Pastoral care Child life specialist
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
communication, and has been shown to lead to improved patient outcomes, satisfaction, and associated reductions in health care costs.12 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.13 Undeniably, much of the literature related to successful efforts in pediatric palliative care also stresses the value of care coordination as a critical element,14 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 statement6 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.15,16 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.17 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
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care experience. This is further complicated by the decrease in number of hospices willing to care for children despite increasing acceptance of hospice care.18 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 workweek days,9 despite continuous access to a palliative care clinician being highly valued by families.19 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 communitybased 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,
Fig. 1. An example eco map for a child and family, symbolizing the wide variety of providers, services, and supports that may be involved at any given point. CYSHN, children and youth with special health needs; IEP, individualized education plan; PCMH, patientcentered medical home; PT/OT/ST, physical therapy, occupational therapy, speech therapy.
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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. INTERDISCIPLINARY PRACTICE
Palliative care teams are fluid in priorities and focus. There may be adopted recommendations and standards for the composition of such teams, but certainly there are not established formulas. In addition to understanding who best ought to be involved, it is important to understand how they may be best involved. An important feature of palliative care is that different team members may take the lead in a child’s care based on the goals of the family and the needs of the team at any given time. As a result, palliative care teams can be tremendously effective for patients, and rewarding for participating providers. This is not to ignore that the flexible nature of palliative care teams can be challenging as they distinguish themselves from the traditional medical model, with physicians at the top of the hierarchy.20 Nonetheless, benefits to families and clinician teams far outweigh the inevitable challenges that accompany the dynamics of collaboration. To this end, it is essential to make the distinction between multidisciplinary and interdisciplinary care. Multidisciplinary care is delivered by a variety of unique disciplines, each identified by their own specialty and methodology. At the multidisciplinary level, providers may operate with an awareness of other involved professionals, but do not integrate among each other. Multidisciplinary care can be considered to operate in a mode of coexistence, where care is delivered by a variety of unique disciplines, each identified by their own specialty and methodology, each interfacing with the child and family, but not necessarily integrating with one another.21 Interdisciplinary care also involves multiple professionals, but with a shared philosophy, common goals, and integrated practice among disciplines. This allows providers to work dynamically and collaboratively together in service of the child’s and family’s goals of care. Perhaps the greatest distinction between the 2 models of care is in methods of communication. Communication among a multidisciplinary team is commonly through electronic medical records, charting, or via the child and family. There is very little, if any, face-to-face communication between disciplines. Although this care may be collaborative in intent, treatment plans are typically not integrative of each other. There are fewer opportunities for involved caregivers to augment each other’s expertise and perspective and, in the dynamic process of illness evolution, such an approach is at a disadvantage with regard to adapting to unexpected changes. Although the terms are often used interchangeably, it is interdisciplinary teamwork at the heart of a functioning pediatric palliative care team. When caring for children with complex medical needs, many disciplines are likely involved, which only enhances the importance of an interdisciplinary approach. To better understand interdisciplinary, as opposed to multidisciplinary care,4 it is helpful to consider the impact of each approach from the receiving end, specifically from the perspective of the child and family. The multidisciplinary model holds the child and family as central, with a variety of input from various disciplines (Fig. 2A). Elements of care (eg, information, direct care delivery, diagnostics, prognostics) all flows directly to the child and family, but not among the disciplines. This can leave a family to interpret and balance information from various individual sources. Despite a multidisciplinary team of very well-intentioned providers, there is inevitably an increased burden on the child and family as the keepers and distributers of all information.
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Fig. 2. A model of multidisciplinary care (A) involves multiple contributions with little coordination between their sources. Interdisciplinary care (B) involves coordination and collaboration between involved professionals. (Adapted from Freibert S, Chrastek J, Brown MR. Team relationships. In: Wolfe J, Hinds PS, Sourkes BM, editors. Textbook of Interdisciplinary Pediatric Palliative Care. Philadelphia: Elsevier Saunders; 2011.)
Interdisciplinary care adds communication across the continuum and development of a common approach among providers while families remain central (see Fig. 2B). The family’s burden of having to communicate information to providers and coordinate care is reduced or eliminated. With a clearly unified approach by the care team, treatment decisions have a greater likelihood of being framed in common terms and delicate decisionmaking is less likely to be abruptly undermined by an uncoordinated caregiver’s opinion. Instead of each individual specialty feeding information directly to the family independent of one another, a different care environment occurs when providers communicate directly with one another. During an interview about palliative care teamwork, one physician put this into such simple, clear perspective: “If I go to a patient for 5 minutes, of course I have an impression, but if a psychotherapist, an occupational therapist, a nurse, and a social worker all spend 5 minutes each with the patient, you get a completely different picture.”22 With an understanding of the impressions and recommendations of the treatment team as a whole, communication with the child and family is delivered in a coordinated manner. INPATIENT AND OUTPATIENT COLLABORATION
Appreciating the strengths of each care provider creates opportunities to minimize gaps and weaknesses. The climate for hospitalized children is changing as steadily as the medical technology that is prolonging and sustaining their lives. The rate of childhood mortality is decreasing while the frequency and lengths of hospitalizations and interventions are increasing.23 The combination of increased life expectancy and hospitalization frequency, coupled with the understanding that decision-making is suboptimal in the face of acute hospitalizations, has been an important factor in the development of inpatient pediatric palliative care teams. The introduction of a palliative care team does not replace the interdisciplinary approach necessary by the larger care team as a whole, but can certainly assist in ongoing collaborative communication. Each provider, not just the palliative care team, has a critical role in supporting ongoing conversations about the family’s goals and philosophy of care. Hospitals were historically intended to diagnose illness, treat the condition, and discharge a patient when they were “well.”24 Hospital-based providers, be they subspecialists or intensivists, are experts in their area, but may not be well-positioned to provide holistic care of a child and family. Because of their regular exposure, they are, however,
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most familiar and well-versed in both caring for children with significant complex medical needs and with their disease trajectories. This knowledge is a critical piece to the puzzle when supporting a family in developing goals of care, but only a piece. Inpatient providers also are more likely to be caring for a child in an acute crisis, and conduct difficult conversations with parents related to urgent decision-making regularly. Many times, especially during emergencies, there is no alternative than to talk directly and frankly about health care decisions. This may not be, however, the best time for the family to fully digest the impact of decisions being made for the long term. Conversely, providers who are caring for a child during an acute hospitalization may be less likely to have the extensive history and knowledge that comes with caring for a child in the community in the absence of a crisis. Primary care pediatricians have built a relationship over time, sometimes across generations, and may have a critical understanding of a family’s strengths, weaknesses, and ability to cope with adversity. With the exception of children who have never left the hospital, parents may view their child’s pediatrician as their primary doctor, regardless of whether there are multiple specialists closely involved. Primary pediatricians often have knowledge about how a family functions and communicates and therefore may be a resource for the inpatient treatment team when there are misunderstandings or knowledge deficits. Parents may feel more comfortable confiding in their child’s “regular” provider about fears, worries, and doubts. A routine visit to the pediatrician and being in the community setting adds to a family’s sense of normalcy, more likely seen as part of “life.” Community providers are likely to have familiarity with the community- and home-based services necessary to support the outcomes of decisions made in the hospital. The general pediatrician may have an ongoing relationship with a family in caring for a child’s siblings, an especially crucial role in the event that a child dies. It is a relationship that cannot be overlooked in caring for a child, even in the midst of a prolonged hospitalization. Evidence suggests improvement in quality of life25 and hopeful parental thinking26 when there is early establishment of care goals. There may be advantages when these conversations are started with a trusted pediatrician as an anticipatory support measure, appreciating that goals of care conversations are preferable outside of a crisis, when families may take their time, ask questions, and be most thoughtful. For example, what is the best way to introduce limited or no nursing services available for home-based support into the decision to undergo surgery that will leave a child ventilator dependent? This is not an uncommon scenario in the face of a national nursing shortage where there are even fewer qualified pediatric nurses.27 When possible, conversations in anticipation of these moments and collaborative communication between the inpatient and outpatient world can illuminate valuable information in considering implications of complex health care decisions. However, many general pediatricians lack experience with palliative care in their professional setting.28 Many leave residency with little training in palliative care or confidence in their abilities,29–31 and do not feel equipped to confidently weigh the benefits and burdens of certain medical interventions, a critical component when outlining goals of care. Who holds responsibility if goals-of-care conversations are best had before a crisis, but pediatricians are not well-versed in having these discussions with families? This is an important concern to the interdisciplinary care of seriously ill children. Palliative care teams can have a great effect in this realm. INTERDISCIPLINARY COMMUNICATION
There is value in clear communication within and across the different professional disciplines before approaching patients and families so that information and
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recommendations are broadly encompassing rather than discipline-specific or misaligned with the overall goals of care. The practice of interdisciplinary care is better achieved when interdisciplinary team meetings are incorporated into the treatment plan. These meetings are typically, but not exclusively, held before a family meeting. The “team meeting” may focus on developing a coordinated update of medical information or clarifying the treatment-related priorities of involved teams. It also may be held to sharpen the need for particular decision-making related to interventions, technologies, or the goals of care. There is little research available on pediatric family meetings, and there does not appear to be any pediatric-specific research related to interdisciplinary team meetings. However, there is little reason to think that advantages found in the care of adults do not apply. Research suggests that when interdisciplinary teams share their perspectives and assessments, the advantages are greater than additive.32 Staff interaction and coordination have been shown to be a critical factor in reduced mortality, controlling for patient severity.33 Advantages have been demonstrated in oncology and critical care settings.34–40 One study of adult patients with lung cancer found that team meetings predicted greater palliative care involvement in addition to treatment decisions prioritizing greater attention to symptom management and quality of life. This may be more true when the environment allows for “role-blurring,” where collective ownership by the professionals involved is encouraged and roles are encouraged to change as the priorities and needs of the patient and family change.41 Consider the common content of family meetings including palliative care teams held in the pediatric intensive care unit (PICU). A recent review of family conferences for children admitted to the PICU22 were found to address length of stay, palliative care involvement, initiation of chronic ventilation, extracorporeal membrane oxygenation use, orders for life-sustaining treatment, death, and transition of care.42 The impact on families of each situation is tremendous, and the input needed from various providers expansive. Team meetings before these discussions allow for understanding and appreciating all the available treatment options across disciplines, and avoids conflicting information shared with the family. Additionally, team meetings also may provide a forum for care providers to introduce critical elements to be discussed in subsequent family meetings. Parenthetically, this review found goals-of-care discussions were documented in only 23% of family meetings, perhaps too low a percentage given the well-understood value of early, frequent, and ongoing goals-of-care conversations. Such a dynamic approach is not without its difficulties, however. Interdisciplinary team meetings and an interdisciplinary approach within the palliative care team involve attention and skill. Time and resource allocation, a collaborative environment, and a clear appreciation for leadership are important factors in success. Knowledge and trust of the many members of the care team improves outcomes but, conversely, when interdependence is not acknowledged by all team members, collaboration is undermined. An insufficient amount of time allowed for a meeting or incomplete participation of involved caregivers leads to a focus on solving immediate problems at the expense of understanding and supporting broader goals, preventing suffering, or other interpersonal factors,22 and that limited focus may in itself undermine the collaborative environment.43 Overall, an ineffective interdisciplinary team meeting can leave some team members feeling incompetent, less important when compared with other team members, and in a diminished role within the process of care.44 In fact, several studies of the ICU environment have found that a medical ICU nurse’s sense of their collaboration better predicts patient outcomes than that of physicians, including mortality and readmission rates.39,40 Finally, for patients and families, an inclusive and
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Box 1 Strategies for improved interdisciplinary teamwork Clearly defined leadership Ongoing formal communication in addition to informal information sharing Shared documentation using standardized language Collaborative approach Balanced teams by discipline Interprofessional education Clarification of roles Regular and constructive performance feedback
timely process of interdisciplinary meetings may reduce the many conversations that occur without the knowledge of others on the interdisciplinary team, those frank bedside conversations that can leave patients and families overloaded and burdened by many different messages and gaps.45,46 Strategies to prevent common barriers in interdisciplinary teamwork are outlined in Box 1. One critical aspect of the interdisciplinary environment is the importance of leadership at these meetings. Within the palliative care team, it is important to ensure clarity and close, positive exchange among team members.47 Mutual respect and common, family-centered purpose are key. Among various care teams, palliative care team leaders may not be asked to lead the meetings in many areas in a hospital or community, but they typically are afforded a special status in balancing the team’s perspective to include parent or patient priorities. SUMMARY
Interdisciplinary care is a strength of palliative care teams and an important ingredient to improved care for patients in palliative care. There is complexity to delivering care that is interdisciplinary, and collaborating with other involved teams in an interdisciplinary fashion. Leadership and the recognition of the many strengths each involved professional has to offer in the care of patients needing palliative care is key. Successful models of palliative care will use the strengths of the available caregivers in each setting in a coordinated, consistent fashion. REFERENCES
1. American Academy of Pediatrics. Committee on Bioethics and Committee on Hospital Care. Palliative care for children. Pediatrics 2000;106(2 Pt 1):351–7. 2. National consensus project for quality palliative care. Clinical practice guidelines for quality palliative care. 3rd edition. Pittsburgh (PA): National consensus project for quality palliative care; 2013. 3. Chen AY, Schrager SM, Mangione-Smith R. Quality measures for primary care of complex pediatric patients. Pediatrics 2012;129(3):433–45. 4. Wolfe J, Hinds P, Sourkes B. Textbook of interdisciplinary pediatric palliative care. Philadelphia: Elsevier; 2011. 5. Mack JW, Wolfe J. Early integration of pediatric palliative care: for some children, palliative care starts at diagnosis. Curr Opin Pediatr 2006;18(1):10–4.
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6. American Academy of Pediatrics. Policy statement: pediatric palliative care and hospice care commitments, guidelines, and recommendations. Pediatrics 2013; 132(5):966–72. 7. Levine D, Lam CG, Cunningham MJ, et al. Best practices for pediatric palliative cancer care: a primer for clinical providers. J Support Oncol 2013;11(3):114–25. 8. Haward R, Amir Z, Borrill C, et al. Breast cancer teams: the impact of constitution, new cancer workload, and methods of operation on their effectiveness. Br J Cancer 2003;89(1):15–22. 9. Feudtner C, Womer J, Augustin R, et al. Pediatric palliative care programs in children’s hospitals: a cross-sectional national survey. Pediatrics 2013;132(6): 1063–70. 10. Miller EG, Laragione G, Kang TI, et al. Concurrent care for the medically complex child: lessons of implementation. J Palliat Med 2012;15(11):1281–3. 11. Bodenheimer T, Wagner EH, Grumbach K. Improving primary care for patients with chronic illness. JAMA 2002;288(14):1775–9. 12. Craig C, Eby D, Whittington J. Care coordination model: better care at lower cost for people with multiple health and social needs. IHI innovation series white paper. Cambridge (MA): Institute for Healthcare Improvement; 2011. 13. Medical Home Initiatives for Children With Special Needs Project Advisory Committee, American Academy of Pediatrics. The medical home. Pediatrics 2002; 110(1 Pt 1):184–6. 14. Carroll JM, Torkildson C, Winsness JS. Issues related to providing quality pediatric palliative care in the community. Pediatr Clin North Am 2007;54(5):813–27, xiii. 15. Knapp C, Baker K, Cunningham C, et al. Pediatric palliative care and the medical home. J Palliat Med 2012;15(6):643–5. 16. Quill TE, Abernethy AP. Generalist plus specialist palliative care—creating a more sustainable model. N Engl J Med 2013;368(13):1173–5. 17. Vollenbroich R, Duroux A, Grasser M, et al. Effectiveness of a pediatric palliative home care team as experienced by parents and health care professionals. J Palliat Med 2012;15(3):294–300. 18. Lindley LC, Mark BA, Daniel Lee SY, et al. Factors associated with the provision of hospice care for children. J Pain Symptom Manage 2013;45(4):701–11. 19. Groh G, Borasio GD, Nickolay C, et al. Specialized pediatric palliative home care: a prospective evaluation. J Palliat Med 2013;16(12):1588–94. 20. Porter-O’Grady T. Teams and teamwork: the critical elements. Semin Nurse Manag 1998;6(4):176. 21. Papadatou D, Bluebond-Langer M, Goldman A. The team. In: Wolfe J, Hinds PS, Sourkes BM, editors. Textbook of interdisciplinary pediatric palliative care. Philadelphia: Elsevier Saunders; 2011. p. 55–63. 22. Klarare A, Hagelin CL, Furst CJ, et al. Team interactions in specialized palliative care teams: a qualitative study. J Palliat Med 2013;16(9):1062–9. 23. Feudtner C, Kang TI, Hexem KR, et al. Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics 2011;127(6):1094–101. 24. Schrader SL, Horner A, Eidsness L, et al. A team approach in palliative care: enhancing outcomes. S D J Med 2002;55(7):269–78. 25. Hui D, Con A, Christie G, et al. Goals of care and end-of-life decision making for hospitalized patients at a Canadian tertiary care cancer center. J Pain Symptom Manage 2009;38(6):871–81. 26. Feudtner C, Carroll KW, Hexem KR, et al. Parental hopeful patterns of thinking, emotions, and pediatric palliative care decision making: a prospective cohort study. Arch Pediatr Adolesc Med 2010;164(9):831–9.
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27. Buerhaus PI. Current and future state of the US nursing workforce. JAMA 2008; 300(20):2422–4. 28. Junger S, Vedder AE, Milde S, et al. Paediatric palliative home care by general paediatricians: a multimethod study on perceived barriers and incentives. BMC Palliat Care 2010;9:11. 29. Baker JN, Torkildson C, Baillargeon JG, et al. National survey of pediatric residency program directors and residents regarding education in palliative medicine and end-of-life care. J Palliat Med 2007;10(2):420–9. 30. Khaneja S, Milrod B. Educational needs among pediatricians regarding caring for terminally ill children. Arch Pediatr Adolesc Med 1998;152(9):909–14. 31. Kolarik RC, Walker G, Arnold RM. Pediatric resident education in palliative care: a needs assessment. Pediatrics 2006;117(6):1949–54. 32. Porter-Williamson K, Parker M, Babbott S, et al. A model to improve value: the interdisciplinary palliative care services agreement. J Palliat Med 2009;12(7):609–15. 33. Knaus WA, Draper EA, Wagner DP, et al. An evaluation of outcome from intensive care in major medical centers. Ann Intern Med 1986;104(3):410–8. 34. Boxer MM, Vinod SK, Shafiq J, et al. Do multidisciplinary team meetings make a difference in the management of lung cancer? Cancer 2011;117(22):5112–20. 35. Gabel M, Hilton NE, Nathanson SD. Multidisciplinary breast cancer clinics. Do they work? Cancer 1997;79(12):2380–4. 36. Burton S, Brown G, Daniels IR, et al. MRI directed multidisciplinary team preoperative treatment strategy: the way to eliminate positive circumferential margins? Br J Cancer 2006;94(3):351–7. 37. Birchall M, Bailey D, King P. Effect of process standards on survival of patients with head and neck cancer in the south and west of England. Br J Cancer 2004;91(8):1477–81. 38. Forrest LM, McMillan DC, McArdle CS, et al. An evaluation of the impact of a multidisciplinary team, in a single centre, on treatment and survival in patients with inoperable non-small-cell lung cancer. Br J Cancer 2005;93(9):977–8. 39. Baggs JG, Ryan SA, Phelps CE, et al. The association between interdisciplinary collaboration and patient outcomes in a medical intensive care unit. Heart Lung 1992;21(1):18–24. 40. Baggs JG, Schmitt MH, Mushlin AI, et al. Association between nurse-physician collaboration and patient outcomes in three intensive care units. Crit Care Med 1999;27(9):1991–8. 41. Bronstein LR. A model for interdisciplinary collaboration. Soc Work 2003;48(3): 297–306. 42. Michelson KN, Clayman ML, Haber-Barker N, et al. The use of family conferences in the pediatric intensive care unit. J Palliat Med 2013;16(12):1595–601. 43. Wittenberg-Lyles EM. Information sharing in interdisciplinary team meetings: an evaluation of hospice goals. Qual Health Res 2005;15(10):1377–91. 44. Sabur S. Creating an optimal culture and structure for the IDT. Hospice Palliative Insights 2003;4:22–3. 45. Jenkins VA, Fallowfield LJ, Poole K. Are members of multidisciplinary teams in breast cancer aware of each other’s informational roles? Qual Health Care 2001;10(2):70–5. 46. Jensen HI, Ammentorp J, Johannessen H, et al. Challenges in end-of-life decisions in the intensive care unit: an ethical perspective. J Bioeth Inq 2013;10(1):93–101. 47. Junger S, Pestinger M, Elsner F, et al. Criteria for successful multiprofessional cooperation in palliative care teams. Palliat Med 2007;21(4):347–54. 48. Gursky B. The effect of educational interventions with siblings of hospitalized children. J Dev Behav Pediatr 2007;28(5):392–8.
MSN, APRN, CPNP
a
, Richard D. Goldstein,
MD
b,
*
KEYWORDS Interdisciplinary Pediatric palliative care Children and youth with special health care needs Medical home Continuity of care KEY POINTS The importance of interdisciplinary care and its basis as the composition of a mature team is broadly embraced. There is a growing body of evidence to support positive outcomes of inpatient/hospitalbased pediatric palliative care involvement. 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. 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. 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.
CASE VIGNETTE 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?
a Pediatric Palliative Care Program, Department of Vermont Health Access, State of Vermont, 312 Hurricane Lane, Suite 201, Williston, VT 05495, USA; b Pediatric Advanced Care Team, Boston Children’s Hospital, Dana-Farber Cancer Institute, Harvard Medical School, 450 Brookline Avenue, Boston, MA 02215, USA * Corresponding author. E-mail address: [email protected]
Pediatr Clin N Am - (2014) -–http://dx.doi.org/10.1016/j.pcl.2014.04.009 pediatric.theclinics.com 0031-3955/14/$ – see front matter Ó 2014 Elsevier Inc. All rights reserved.
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INTRODUCTION
Interdisciplinary care is a core value in palliative care and a foundation of quality practice.1,2 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 conditions3 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.4 Another critical issue is promoting an understanding that cure-directed and palliative care are not mutually exclusive5 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.6 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.7 Research on health care teams has concluded that diversity of participants predicts better discussions, adjustment to developments, and service delivery.8 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.6 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.
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Table 1 Distinctions between palliative care professionals Discipline
Expertise
Medicine
Address medical needs, such as pain and symptom management, as well as speaking to the implications of medical interventions. Take the lead on framing the illness trajectory and prognosis, as well as having a special role in interacting with other medical specialties.
Nursing
Clinical support and hands-on care while teaching families how to best provide care for their children. Support other staff at bedside.
Social work
Address broad spectrum of factors that influence families, such as housing, transportation,41 family dynamics. Provide psychosocial/emotional and bereavement supports.
Child life
Provide psychosocially driven interventions that promote coping through play, preparation, education, and self-expression activities48 for both patient and siblings.
Pastoral care
Support spiritual needs of child and family. Access supports specific to a family’s religious beliefs and values. Communicate spiritual needs of family to care team for consideration in care plan.
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.9 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,10 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. 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.11 As an alternative, a patient-centered approach places an emphasis on coordinated care and
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Table 2 Interdisciplinary team members Inpatient
Outpatient
Attending medical team Continuing subspecialty providers Bedside nurse Case manager Rehabilitation therapies Palliative care team Nurse practitioner Palliative care nurse Social worker Pastoral care Child life specialist
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
communication, and has been shown to lead to improved patient outcomes, satisfaction, and associated reductions in health care costs.12 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.13 Undeniably, much of the literature related to successful efforts in pediatric palliative care also stresses the value of care coordination as a critical element,14 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 statement6 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.15,16 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.17 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
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care experience. This is further complicated by the decrease in number of hospices willing to care for children despite increasing acceptance of hospice care.18 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 workweek days,9 despite continuous access to a palliative care clinician being highly valued by families.19 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 communitybased 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,
Fig. 1. An example eco map for a child and family, symbolizing the wide variety of providers, services, and supports that may be involved at any given point. CYSHN, children and youth with special health needs; IEP, individualized education plan; PCMH, patientcentered medical home; PT/OT/ST, physical therapy, occupational therapy, speech therapy.
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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. INTERDISCIPLINARY PRACTICE
Palliative care teams are fluid in priorities and focus. There may be adopted recommendations and standards for the composition of such teams, but certainly there are not established formulas. In addition to understanding who best ought to be involved, it is important to understand how they may be best involved. An important feature of palliative care is that different team members may take the lead in a child’s care based on the goals of the family and the needs of the team at any given time. As a result, palliative care teams can be tremendously effective for patients, and rewarding for participating providers. This is not to ignore that the flexible nature of palliative care teams can be challenging as they distinguish themselves from the traditional medical model, with physicians at the top of the hierarchy.20 Nonetheless, benefits to families and clinician teams far outweigh the inevitable challenges that accompany the dynamics of collaboration. To this end, it is essential to make the distinction between multidisciplinary and interdisciplinary care. Multidisciplinary care is delivered by a variety of unique disciplines, each identified by their own specialty and methodology. At the multidisciplinary level, providers may operate with an awareness of other involved professionals, but do not integrate among each other. Multidisciplinary care can be considered to operate in a mode of coexistence, where care is delivered by a variety of unique disciplines, each identified by their own specialty and methodology, each interfacing with the child and family, but not necessarily integrating with one another.21 Interdisciplinary care also involves multiple professionals, but with a shared philosophy, common goals, and integrated practice among disciplines. This allows providers to work dynamically and collaboratively together in service of the child’s and family’s goals of care. Perhaps the greatest distinction between the 2 models of care is in methods of communication. Communication among a multidisciplinary team is commonly through electronic medical records, charting, or via the child and family. There is very little, if any, face-to-face communication between disciplines. Although this care may be collaborative in intent, treatment plans are typically not integrative of each other. There are fewer opportunities for involved caregivers to augment each other’s expertise and perspective and, in the dynamic process of illness evolution, such an approach is at a disadvantage with regard to adapting to unexpected changes. Although the terms are often used interchangeably, it is interdisciplinary teamwork at the heart of a functioning pediatric palliative care team. When caring for children with complex medical needs, many disciplines are likely involved, which only enhances the importance of an interdisciplinary approach. To better understand interdisciplinary, as opposed to multidisciplinary care,4 it is helpful to consider the impact of each approach from the receiving end, specifically from the perspective of the child and family. The multidisciplinary model holds the child and family as central, with a variety of input from various disciplines (Fig. 2A). Elements of care (eg, information, direct care delivery, diagnostics, prognostics) all flows directly to the child and family, but not among the disciplines. This can leave a family to interpret and balance information from various individual sources. Despite a multidisciplinary team of very well-intentioned providers, there is inevitably an increased burden on the child and family as the keepers and distributers of all information.
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Fig. 2. A model of multidisciplinary care (A) involves multiple contributions with little coordination between their sources. Interdisciplinary care (B) involves coordination and collaboration between involved professionals. (Adapted from Freibert S, Chrastek J, Brown MR. Team relationships. In: Wolfe J, Hinds PS, Sourkes BM, editors. Textbook of Interdisciplinary Pediatric Palliative Care. Philadelphia: Elsevier Saunders; 2011.)
Interdisciplinary care adds communication across the continuum and development of a common approach among providers while families remain central (see Fig. 2B). The family’s burden of having to communicate information to providers and coordinate care is reduced or eliminated. With a clearly unified approach by the care team, treatment decisions have a greater likelihood of being framed in common terms and delicate decisionmaking is less likely to be abruptly undermined by an uncoordinated caregiver’s opinion. Instead of each individual specialty feeding information directly to the family independent of one another, a different care environment occurs when providers communicate directly with one another. During an interview about palliative care teamwork, one physician put this into such simple, clear perspective: “If I go to a patient for 5 minutes, of course I have an impression, but if a psychotherapist, an occupational therapist, a nurse, and a social worker all spend 5 minutes each with the patient, you get a completely different picture.”22 With an understanding of the impressions and recommendations of the treatment team as a whole, communication with the child and family is delivered in a coordinated manner. INPATIENT AND OUTPATIENT COLLABORATION
Appreciating the strengths of each care provider creates opportunities to minimize gaps and weaknesses. The climate for hospitalized children is changing as steadily as the medical technology that is prolonging and sustaining their lives. The rate of childhood mortality is decreasing while the frequency and lengths of hospitalizations and interventions are increasing.23 The combination of increased life expectancy and hospitalization frequency, coupled with the understanding that decision-making is suboptimal in the face of acute hospitalizations, has been an important factor in the development of inpatient pediatric palliative care teams. The introduction of a palliative care team does not replace the interdisciplinary approach necessary by the larger care team as a whole, but can certainly assist in ongoing collaborative communication. Each provider, not just the palliative care team, has a critical role in supporting ongoing conversations about the family’s goals and philosophy of care. Hospitals were historically intended to diagnose illness, treat the condition, and discharge a patient when they were “well.”24 Hospital-based providers, be they subspecialists or intensivists, are experts in their area, but may not be well-positioned to provide holistic care of a child and family. Because of their regular exposure, they are, however,
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most familiar and well-versed in both caring for children with significant complex medical needs and with their disease trajectories. This knowledge is a critical piece to the puzzle when supporting a family in developing goals of care, but only a piece. Inpatient providers also are more likely to be caring for a child in an acute crisis, and conduct difficult conversations with parents related to urgent decision-making regularly. Many times, especially during emergencies, there is no alternative than to talk directly and frankly about health care decisions. This may not be, however, the best time for the family to fully digest the impact of decisions being made for the long term. Conversely, providers who are caring for a child during an acute hospitalization may be less likely to have the extensive history and knowledge that comes with caring for a child in the community in the absence of a crisis. Primary care pediatricians have built a relationship over time, sometimes across generations, and may have a critical understanding of a family’s strengths, weaknesses, and ability to cope with adversity. With the exception of children who have never left the hospital, parents may view their child’s pediatrician as their primary doctor, regardless of whether there are multiple specialists closely involved. Primary pediatricians often have knowledge about how a family functions and communicates and therefore may be a resource for the inpatient treatment team when there are misunderstandings or knowledge deficits. Parents may feel more comfortable confiding in their child’s “regular” provider about fears, worries, and doubts. A routine visit to the pediatrician and being in the community setting adds to a family’s sense of normalcy, more likely seen as part of “life.” Community providers are likely to have familiarity with the community- and home-based services necessary to support the outcomes of decisions made in the hospital. The general pediatrician may have an ongoing relationship with a family in caring for a child’s siblings, an especially crucial role in the event that a child dies. It is a relationship that cannot be overlooked in caring for a child, even in the midst of a prolonged hospitalization. Evidence suggests improvement in quality of life25 and hopeful parental thinking26 when there is early establishment of care goals. There may be advantages when these conversations are started with a trusted pediatrician as an anticipatory support measure, appreciating that goals of care conversations are preferable outside of a crisis, when families may take their time, ask questions, and be most thoughtful. For example, what is the best way to introduce limited or no nursing services available for home-based support into the decision to undergo surgery that will leave a child ventilator dependent? This is not an uncommon scenario in the face of a national nursing shortage where there are even fewer qualified pediatric nurses.27 When possible, conversations in anticipation of these moments and collaborative communication between the inpatient and outpatient world can illuminate valuable information in considering implications of complex health care decisions. However, many general pediatricians lack experience with palliative care in their professional setting.28 Many leave residency with little training in palliative care or confidence in their abilities,29–31 and do not feel equipped to confidently weigh the benefits and burdens of certain medical interventions, a critical component when outlining goals of care. Who holds responsibility if goals-of-care conversations are best had before a crisis, but pediatricians are not well-versed in having these discussions with families? This is an important concern to the interdisciplinary care of seriously ill children. Palliative care teams can have a great effect in this realm. INTERDISCIPLINARY COMMUNICATION
There is value in clear communication within and across the different professional disciplines before approaching patients and families so that information and
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recommendations are broadly encompassing rather than discipline-specific or misaligned with the overall goals of care. The practice of interdisciplinary care is better achieved when interdisciplinary team meetings are incorporated into the treatment plan. These meetings are typically, but not exclusively, held before a family meeting. The “team meeting” may focus on developing a coordinated update of medical information or clarifying the treatment-related priorities of involved teams. It also may be held to sharpen the need for particular decision-making related to interventions, technologies, or the goals of care. There is little research available on pediatric family meetings, and there does not appear to be any pediatric-specific research related to interdisciplinary team meetings. However, there is little reason to think that advantages found in the care of adults do not apply. Research suggests that when interdisciplinary teams share their perspectives and assessments, the advantages are greater than additive.32 Staff interaction and coordination have been shown to be a critical factor in reduced mortality, controlling for patient severity.33 Advantages have been demonstrated in oncology and critical care settings.34–40 One study of adult patients with lung cancer found that team meetings predicted greater palliative care involvement in addition to treatment decisions prioritizing greater attention to symptom management and quality of life. This may be more true when the environment allows for “role-blurring,” where collective ownership by the professionals involved is encouraged and roles are encouraged to change as the priorities and needs of the patient and family change.41 Consider the common content of family meetings including palliative care teams held in the pediatric intensive care unit (PICU). A recent review of family conferences for children admitted to the PICU22 were found to address length of stay, palliative care involvement, initiation of chronic ventilation, extracorporeal membrane oxygenation use, orders for life-sustaining treatment, death, and transition of care.42 The impact on families of each situation is tremendous, and the input needed from various providers expansive. Team meetings before these discussions allow for understanding and appreciating all the available treatment options across disciplines, and avoids conflicting information shared with the family. Additionally, team meetings also may provide a forum for care providers to introduce critical elements to be discussed in subsequent family meetings. Parenthetically, this review found goals-of-care discussions were documented in only 23% of family meetings, perhaps too low a percentage given the well-understood value of early, frequent, and ongoing goals-of-care conversations. Such a dynamic approach is not without its difficulties, however. Interdisciplinary team meetings and an interdisciplinary approach within the palliative care team involve attention and skill. Time and resource allocation, a collaborative environment, and a clear appreciation for leadership are important factors in success. Knowledge and trust of the many members of the care team improves outcomes but, conversely, when interdependence is not acknowledged by all team members, collaboration is undermined. An insufficient amount of time allowed for a meeting or incomplete participation of involved caregivers leads to a focus on solving immediate problems at the expense of understanding and supporting broader goals, preventing suffering, or other interpersonal factors,22 and that limited focus may in itself undermine the collaborative environment.43 Overall, an ineffective interdisciplinary team meeting can leave some team members feeling incompetent, less important when compared with other team members, and in a diminished role within the process of care.44 In fact, several studies of the ICU environment have found that a medical ICU nurse’s sense of their collaboration better predicts patient outcomes than that of physicians, including mortality and readmission rates.39,40 Finally, for patients and families, an inclusive and
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Box 1 Strategies for improved interdisciplinary teamwork Clearly defined leadership Ongoing formal communication in addition to informal information sharing Shared documentation using standardized language Collaborative approach Balanced teams by discipline Interprofessional education Clarification of roles Regular and constructive performance feedback
timely process of interdisciplinary meetings may reduce the many conversations that occur without the knowledge of others on the interdisciplinary team, those frank bedside conversations that can leave patients and families overloaded and burdened by many different messages and gaps.45,46 Strategies to prevent common barriers in interdisciplinary teamwork are outlined in Box 1. One critical aspect of the interdisciplinary environment is the importance of leadership at these meetings. Within the palliative care team, it is important to ensure clarity and close, positive exchange among team members.47 Mutual respect and common, family-centered purpose are key. Among various care teams, palliative care team leaders may not be asked to lead the meetings in many areas in a hospital or community, but they typically are afforded a special status in balancing the team’s perspective to include parent or patient priorities. SUMMARY
Interdisciplinary care is a strength of palliative care teams and an important ingredient to improved care for patients in palliative care. There is complexity to delivering care that is interdisciplinary, and collaborating with other involved teams in an interdisciplinary fashion. Leadership and the recognition of the many strengths each involved professional has to offer in the care of patients needing palliative care is key. Successful models of palliative care will use the strengths of the available caregivers in each setting in a coordinated, consistent fashion. REFERENCES
1. American Academy of Pediatrics. Committee on Bioethics and Committee on Hospital Care. Palliative care for children. Pediatrics 2000;106(2 Pt 1):351–7. 2. National consensus project for quality palliative care. Clinical practice guidelines for quality palliative care. 3rd edition. Pittsburgh (PA): National consensus project for quality palliative care; 2013. 3. Chen AY, Schrager SM, Mangione-Smith R. Quality measures for primary care of complex pediatric patients. Pediatrics 2012;129(3):433–45. 4. Wolfe J, Hinds P, Sourkes B. Textbook of interdisciplinary pediatric palliative care. Philadelphia: Elsevier; 2011. 5. Mack JW, Wolfe J. Early integration of pediatric palliative care: for some children, palliative care starts at diagnosis. Curr Opin Pediatr 2006;18(1):10–4.
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6. American Academy of Pediatrics. Policy statement: pediatric palliative care and hospice care commitments, guidelines, and recommendations. Pediatrics 2013; 132(5):966–72. 7. Levine D, Lam CG, Cunningham MJ, et al. Best practices for pediatric palliative cancer care: a primer for clinical providers. J Support Oncol 2013;11(3):114–25. 8. Haward R, Amir Z, Borrill C, et al. Breast cancer teams: the impact of constitution, new cancer workload, and methods of operation on their effectiveness. Br J Cancer 2003;89(1):15–22. 9. Feudtner C, Womer J, Augustin R, et al. Pediatric palliative care programs in children’s hospitals: a cross-sectional national survey. Pediatrics 2013;132(6): 1063–70. 10. Miller EG, Laragione G, Kang TI, et al. Concurrent care for the medically complex child: lessons of implementation. J Palliat Med 2012;15(11):1281–3. 11. Bodenheimer T, Wagner EH, Grumbach K. Improving primary care for patients with chronic illness. JAMA 2002;288(14):1775–9. 12. Craig C, Eby D, Whittington J. Care coordination model: better care at lower cost for people with multiple health and social needs. IHI innovation series white paper. Cambridge (MA): Institute for Healthcare Improvement; 2011. 13. Medical Home Initiatives for Children With Special Needs Project Advisory Committee, American Academy of Pediatrics. The medical home. Pediatrics 2002; 110(1 Pt 1):184–6. 14. Carroll JM, Torkildson C, Winsness JS. Issues related to providing quality pediatric palliative care in the community. Pediatr Clin North Am 2007;54(5):813–27, xiii. 15. Knapp C, Baker K, Cunningham C, et al. Pediatric palliative care and the medical home. J Palliat Med 2012;15(6):643–5. 16. Quill TE, Abernethy AP. Generalist plus specialist palliative care—creating a more sustainable model. N Engl J Med 2013;368(13):1173–5. 17. Vollenbroich R, Duroux A, Grasser M, et al. Effectiveness of a pediatric palliative home care team as experienced by parents and health care professionals. J Palliat Med 2012;15(3):294–300. 18. Lindley LC, Mark BA, Daniel Lee SY, et al. Factors associated with the provision of hospice care for children. J Pain Symptom Manage 2013;45(4):701–11. 19. Groh G, Borasio GD, Nickolay C, et al. Specialized pediatric palliative home care: a prospective evaluation. J Palliat Med 2013;16(12):1588–94. 20. Porter-O’Grady T. Teams and teamwork: the critical elements. Semin Nurse Manag 1998;6(4):176. 21. Papadatou D, Bluebond-Langer M, Goldman A. The team. In: Wolfe J, Hinds PS, Sourkes BM, editors. Textbook of interdisciplinary pediatric palliative care. Philadelphia: Elsevier Saunders; 2011. p. 55–63. 22. Klarare A, Hagelin CL, Furst CJ, et al. Team interactions in specialized palliative care teams: a qualitative study. J Palliat Med 2013;16(9):1062–9. 23. Feudtner C, Kang TI, Hexem KR, et al. Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics 2011;127(6):1094–101. 24. Schrader SL, Horner A, Eidsness L, et al. A team approach in palliative care: enhancing outcomes. S D J Med 2002;55(7):269–78. 25. Hui D, Con A, Christie G, et al. Goals of care and end-of-life decision making for hospitalized patients at a Canadian tertiary care cancer center. J Pain Symptom Manage 2009;38(6):871–81. 26. Feudtner C, Carroll KW, Hexem KR, et al. Parental hopeful patterns of thinking, emotions, and pediatric palliative care decision making: a prospective cohort study. Arch Pediatr Adolesc Med 2010;164(9):831–9.
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27. Buerhaus PI. Current and future state of the US nursing workforce. JAMA 2008; 300(20):2422–4. 28. Junger S, Vedder AE, Milde S, et al. Paediatric palliative home care by general paediatricians: a multimethod study on perceived barriers and incentives. BMC Palliat Care 2010;9:11. 29. Baker JN, Torkildson C, Baillargeon JG, et al. National survey of pediatric residency program directors and residents regarding education in palliative medicine and end-of-life care. J Palliat Med 2007;10(2):420–9. 30. Khaneja S, Milrod B. Educational needs among pediatricians regarding caring for terminally ill children. Arch Pediatr Adolesc Med 1998;152(9):909–14. 31. Kolarik RC, Walker G, Arnold RM. Pediatric resident education in palliative care: a needs assessment. Pediatrics 2006;117(6):1949–54. 32. Porter-Williamson K, Parker M, Babbott S, et al. A model to improve value: the interdisciplinary palliative care services agreement. J Palliat Med 2009;12(7):609–15. 33. Knaus WA, Draper EA, Wagner DP, et al. An evaluation of outcome from intensive care in major medical centers. Ann Intern Med 1986;104(3):410–8. 34. Boxer MM, Vinod SK, Shafiq J, et al. Do multidisciplinary team meetings make a difference in the management of lung cancer? Cancer 2011;117(22):5112–20. 35. Gabel M, Hilton NE, Nathanson SD. Multidisciplinary breast cancer clinics. Do they work? Cancer 1997;79(12):2380–4. 36. Burton S, Brown G, Daniels IR, et al. MRI directed multidisciplinary team preoperative treatment strategy: the way to eliminate positive circumferential margins? Br J Cancer 2006;94(3):351–7. 37. Birchall M, Bailey D, King P. Effect of process standards on survival of patients with head and neck cancer in the south and west of England. Br J Cancer 2004;91(8):1477–81. 38. Forrest LM, McMillan DC, McArdle CS, et al. An evaluation of the impact of a multidisciplinary team, in a single centre, on treatment and survival in patients with inoperable non-small-cell lung cancer. Br J Cancer 2005;93(9):977–8. 39. Baggs JG, Ryan SA, Phelps CE, et al. The association between interdisciplinary collaboration and patient outcomes in a medical intensive care unit. Heart Lung 1992;21(1):18–24. 40. Baggs JG, Schmitt MH, Mushlin AI, et al. Association between nurse-physician collaboration and patient outcomes in three intensive care units. Crit Care Med 1999;27(9):1991–8. 41. Bronstein LR. A model for interdisciplinary collaboration. Soc Work 2003;48(3): 297–306. 42. Michelson KN, Clayman ML, Haber-Barker N, et al. The use of family conferences in the pediatric intensive care unit. J Palliat Med 2013;16(12):1595–601. 43. Wittenberg-Lyles EM. Information sharing in interdisciplinary team meetings: an evaluation of hospice goals. Qual Health Res 2005;15(10):1377–91. 44. Sabur S. Creating an optimal culture and structure for the IDT. Hospice Palliative Insights 2003;4:22–3. 45. Jenkins VA, Fallowfield LJ, Poole K. Are members of multidisciplinary teams in breast cancer aware of each other’s informational roles? Qual Health Care 2001;10(2):70–5. 46. Jensen HI, Ammentorp J, Johannessen H, et al. Challenges in end-of-life decisions in the intensive care unit: an ethical perspective. J Bioeth Inq 2013;10(1):93–101. 47. Junger S, Pestinger M, Elsner F, et al. Criteria for successful multiprofessional cooperation in palliative care teams. Palliat Med 2007;21(4):347–54. 48. Gursky B. The effect of educational interventions with siblings of hospitalized children. J Dev Behav Pediatr 2007;28(5):392–8.
