17 Relationships with the Community

Palliative Care and Beyond

David M. Steinhorn, Richard Goldstein, Stacy F. Orloff

This chapter is intended to provide the reader new to pediatric palliative care with an understanding of how to create an optimal environment for children and their families. For the experienced reader, this chapter provides an integrated, holistic perspective based upon the authors’ experiences in several pediatric palliative care settings and, in doing so, offer new refinements and insights. The ultimate goal is to create the concept of seamless care, which assures that the child remains the central focus of continuous care independent of the setting in which it is provided.

Ben, 7, was in first grade when his general pediatrician determined that his knee pain was caused by leukemia. During his hospitalizations, he and his family developed relationships with hospital nurses, child life specialists, and social workers. Home nursing support became a regular part of their lives when he was discharged. The oncology team and his oncologist have been very involved, through induction chemotherapy, its failure, bone marrow transplant and its unfortunate failure. His teachers and schoolmates have stayed in touch throughout, wondering whether he would return to school. The general pediatrician has stayed involved and been an important resource for the family. Now the family is struggling with end of life and how it would best be for Ben. They are trying to understand hospice and what they will need to find it a secure option. Throughout it all, his family, his school, and his church community have grappled with his issues and how to support Ben, his brother, and his parents. While grateful, the family will sometimes lament how much energy it takes to keep it all straight.

Children don’t live in a vacuum. Although children with life-threatening illnesses may feel isolated during the course of their treatment, they rarely live isolated lives. They have profound and defining relationships with family, friends, and community. They are connected to many different people and organizations such as schools, their community, pediatrician, pharmacies, durable medical equipment providers, hospice, the hospital, emergency responders, and service and faith-based groups. Their illness impacts all of these relationships. Excellent palliative care will include attention to them all, and perhaps some others.

For the pediatric palliative care team, finding effective means of incorporating the various relationships into a child’s life is one of the greatest challenges. Failure to effectively do so creates the potential to increase the suffering and distress associated with the child’s illness and death. As the World Health Organization emphasizes, a “broad multidisciplinary approach and one that includes the family and makes use of available community resources”¹ is central to the mission of pediatric palliative care. Palliative care providers must find ways to bridge the gap between the child’s and family’s needs for continuity and connection within their community of relationships and the larger context of multiple healthcare agencies and individuals providing palliative care. A fragmented approach to healthcare that does not connect the dots among the hospital, home, school, community healthcare providers, and other peer support groups can have a troubling negative impact on the lives of a child and his or her family.

Palliative and hospice medicine embodies a philosophy of care that is independent of the specific disease process or location of care delivery. It aims “to improve the quality of life of patients and their families facing life-threatening illness, through the prevention, assessment, and treatment of pain and other physical, psychosocial, and spiritual problems.”² Providing palliative care for children who have life-limiting conditions is inseparable from all other aspects of their care and potentially impacts all of the relationships in their lives. Through its multidisciplinary composition, the palliative care team is ideally positioned to assist in optimizing the experience of patients and their families with the care provided in four domains (see Table 17-1). These domains broadly reflect the range of distinct care locations. The relationships in each must ideally be addressed from the perspective of the entirety of the child’s care and life. This chapter will address the challenges of integrating palliative care into the various domains of a child’s life and highlights its role in coordinating care across various domains.³

TABLE 17-1 Domains in Which Palliative Care May Be Provided

Location of care	Focus of pediatric palliative care team
Hospital-based medical care	Work collaboratively with primary medical team; assist, advise, advocate; help family explore options
Home-based care	Maintain contact with patient after discharge; liaison between hospital and home; sounding board for family, patient
Community-based medical care	Coordinate discharge to home; maintain contact to remain up to date on care needs at home and change in health status; support primary care provider
Community-based organizations	Liaison to school, religious organization, service organizations, clubs, sports teams

Palliative Care and the Community

One obstacle to the integration of palliative care into overall patient care stems from a limited understanding by many healthcare providers of its place and role. The field has come to be defined for children over the last 20 years through the efforts of leaders worldwide, culminating in important guidelines promulgated by the American Academy of Pediatrics and the Institute of Medicine regarding the importance of such care.^4,⁵ Such public statements have provided important guidance for the creation of palliative care services in many medical centers and some community-based hospice organizations and have spawned legislative efforts to improve reimbursement for palliative care separate from the existing hospice coverage. A set of best practice standards in pediatric palliative care promotes:

• Involving the PPC team as soon after determination of a disease with a grave prognosis is possible,

• Striving for meticulous symptom management,

• Addressing multiple sources of discomfort and suffering,

• Attempting curative therapy while focusing on optimal quality of life,

• Maintaining relationships and authority with primary care and subspecialty providers whenever possible,

• Providing care at home, school, and in the community,

• Providing family-supportive therapy to maintain integrity of family,

• Providing care as long as the child requires,

• Providing bereavement care.

The tasks associated with creating a palliative care plan for any child must be individualized and involve several interrelated areas.^6,⁷ They require identifying problems and obstacles, creating a set of interventions that improve quality of life, and solving logistical issues to permit care in the most appropriate setting. Using these points as a framework, a paradigm for integrating palliative care into overall patient care can be developed by the palliative care team working in close collaboration with the family and primary medical service.

The roles the palliative care team plays vary at different points throughout the illness.⁸^–¹¹ It is important to remember that the disease process itself will ultimately determine which options are available at any point in the trajectory of an illness. As the disease progresses, certain options will no longer be possible yet the palliative care team can help the family in choosing from the remaining options, based upon their values and goals (Table 17-2).

TABLE 17-2 Varying Roles of Palliative Care Team Throughout the Trajectory of Illness

Early	Middle	Late
Supportive and Anticipatory Care	Coordinating Interdisciplinary Care	Co-Management with First-Degree Caregivers
Early introduction of palliative care to family, optimizing child’s life during an illness with an uncertain outcome Consultation requested for in- or out-patient Determine team’s expectations Ascertain family’s values and/or goals Supportive role assuring attention to symptom management and quality of life Consider referral to home palliative care agency Anticipate needs for support of siblings and extended family	Longitudinal contact with family Team visits in home or hospital Frequent reassessment of goals in light of changing disease status Offers non-judgmental support Offers ongoing family support Discussion of options if disease progresses, the disease status determines the possible options Optimize quality of life and symptom management Begin DNR and end-of-life planning	Cure highly unlikely. Palliative care team takes more leading role in partnership with primary team Support family decisions Complete end-of-life planning, including memory making, DNR status, desired location of death, funeral plans, and bereavement photography Immediate availability for difficult end-of-life symptom management Attend death, when desired and/or needed Consider autopsy follow-up Provide bereavement service

Liben S, Papadatou D. et al. Paediatric palliative care: challenges and emerging ideas. Lancet 371(9615): 852-864, 2008. Löfmark R, Nilstun T, et al. From cure to palliation: concept, decision and acceptance. J Med Ethics 33: 685-688, 2007. Baker J N, Hinds PS, et al. Integration of palliative care practices into the ongoing care of children with cancer: individualized care planning and coordination. Pediatr Clin North Am 55(1): 223-250, xii. 2008. Penson R, Partridge R, et al. Fear of death. The Oncologist 10: 160-169, 2005. Heaston S, Beckstrand R, et al. Emergency nurses’ perceptions of obstacles and supportive behaviors in end-of-life care. J Emerg Nurs 32: 477-485, 2006. Levetown M, and Committee on Bioethics. Communicating with children and families: from everyday interactions to skill in conveying distressing information. Pediatrics 121(5): e1441-1460. 2008.

The hospital-based palliative care team has an important role in creating a bridge to the community-based palliative care service. Frequently, the hospital-based team has the best feel for which community-based organizations in the child’s home region have the proper resources such as a pediatric nurse or child life services to meet the patient’s needs. Case management personnel and discharge planners can have a limited understanding of the needs of children being referred for home palliative care. Some discharge planners may be called upon infrequently to arrange a palliative care discharge. In contrast, the palliative care team may be involved in many more discharges each year to home care. Team members typically know the range of resources available in the child’s community as well as how to expedite discharge or transfer closer to home when urgent situations arise.

This situation works well when the distances between a patient’s home and the hospital is not too great and there is a well-defined collaborative relationship between the hospital- and home-based care providers. However, in many regions, the situation is very complex. For example, in metropolitan Chicago, there are more than eight hospitals providing tertiary pediatric care throughout the extended greater metropolitan area, covering eight counties and a population of 9.5 million. Hospice nurses may drive as much as 60 miles for one home visit. Within that large area, there are only six hospice organizations that have pediatric nurses who can provide home hospice and palliative care. No single community-based organization covers the entire area. Furthermore, the patients referred to any of the tertiary care centers may come from an equally long distance based upon the availability of special services or patterns of patient referral developed by each hospital’s administrators. In other cities, such as Cleveland, Ohio, a single, well-established hospice organization is able to provide pediatric care through satellite offices covering the entire metropolitan area. At the opposite end of the spectrum are areas where families live in very sparsely populated areas served only by adult hospice organizations (Table 17-3).

TABLE 17-3 Relationships Between Institutions and Community-Based Care

Referring institution	Community-based care
Single children’s hospital Pro: Single standard of care to adapt to Con: Limited family choices for care	Single palliative care organization Pro: Concentrate resources, single standard Con: Limited choices; no competition to excel; possibly limited geographic coverage
Multiple children’s hospitals Pro: Greater choice, expertise Con: Multiple referring sources with varying expectations; variable expertise	Single, large palliative care organization Pro: Concentrate expertise; set standard Con: Single option for families; possibly limited geographic coverage
Multiple children’s hospitals Pro: Great choice in care; multiple specialists Con: Multiple referring sources with varying expectations; differing quality of care	Multiple palliative care organizations Pro: Greater choice; competition promotes excellence Con: Lack of consistency; confusion in areas of coverage; logistical difficulties