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:

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

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

The care provided for the child and the support available to the family should ideally be the same regardless of where care is delivered. Because each palliative care family and child will inevitably face difficult and painful decisions, it is incumbent upon the healthcare system to provide an optimal environment for children on their palliative care journey. This care can only be provided by a cooperative, collaborative relationship between all care providers in a community. Because there is limited economic advantage to be gained in most medical markets by increasing market share in pediatric palliative care, a non-competitive relationship between providers in the community will ensure consistent standards of care and optimize the availability of resources for children. In addition, coalitions are beginning to develop in the United States that will create region-wide standards of care for pediatric palliative care and assure quality oversight in a non-competitive environment. The Greater Illinois Pediatric Palliative Care Coalition is one such evolving organization. It is highly likely that such region-wide coalitions will be able to more effectively leverage community philanthropy than individual organizations can, which will lead to greater ability of such coalitions to develop and expand shared services such as child life and music therapists.

At the other extreme are the rural families who depend upon adult hospices to help fill the gaps in care for their child at home. It has been a challenge at times to develop collaborative arrangements with the medical teams in adult hospices that are asked to care for children. A lack of nurses who have both pediatric assessment skills and comfort dealing with dying children makes it critically important for the palliative care team to maintain communication with the rural organization regarding symptom management, changes in the child’s health status, and suggestions for psychosocial support for siblings and extended family. Attempts in Australia to employ videotelephony to remotely manage patients have met with mixed success, although the approach holds great promise.¹² In such situations, creative problem solving is required to achieve the palliative care goals.

In light of the rapid development of pediatric palliative care worldwide, there are multiple opportunities to provide education and in-service instruction at the community level. Palliative care team members should make themselves available for such community education and outreach activities. The goal of outreach in such circumstances is to engage the community providers in providing optimal care for the community’s children. Blurring the message by highlighting the accomplishments of any individual institution or marketing will not serve those goals.

Assurance at the Interface

Perhaps the most important goal in planning a discharge for a child with a life-threatening illness who requires palliative care services is the creation of a seamless transition to the out-of-hospital setting, which is typically the patient’s home. Children thrive best in a predictable and consistent environment. The younger they are, then the more disruptive changes in caretakers and care settings may be. As children mature, they are able to deal intellectually with many of the demands of their illness and care but until mid- to late-adolescence, they remain children with the same needs for security, nurturing, and predictable caregivers. The optimal model of palliative care for children is one in which the palliative care team that visits them at home also provides supportive visits if they are re-hospitalized. Similarly, the hospital-based palliative care team provides ongoing contact with the family at home via telephone and occasional home visits to assure that the philosophy and approach to care is consistent regardless of the location. As acknowledged by the American Academy of Pediatrics, care coordination is an area of critical importance for children with long-term, complex medical conditions³ and requires both attention and unique skills.

The question becomes who is responsible for assuring the continuity of care among all the care providers so that truly seamless care is offered between hospital and home. There are also stops at school, visits to the community pediatrician, interaction with a faith community, and perhaps some assistance from emergency responders, and local support agencies such as pharmacies and durable medical equipment providers. It should quickly be apparent that one could not draw a straight line from one provider or institution to another. Children receiving palliative care often go back and forth among all of the named entities. How then do we ensure that these relationships are addressed and nurtured throughout the child’s life and through the bereavement experience of the family? Some palliative care sites have done a reasonably good job in attempting to create seamless care transitions and management.

In order to best understand the consequences of not working well within this complex and interconnected web of relationships, we will consider the following important organizations or entities when designing seamless transitions within palliative care. Keep in mind that the connections among all of these entities is not linear. Diagramming this matrix relationship would be complex at best. The intent of this section is to provide thought-provoking scenarios. The reader, then, may wish to consider other ways in which a poor relationship between two or more of the following entities would decrease the potential for quality IDP care for the child and family, or conversely the many resultant benefits when consideration is made of and for this complex relational matrix.

The impact of care fragmentation is great. Lack of communication or miscommunication may lead to unnecessary tests, treatments, or hospitalizations.¹³ Community-based hospice providers may, unintentionally or not, neglect to inform hospital-based clinicians of changes in a child’s condition thus impeding the hospital clinicians’ ability to contact the family to offer support or say goodbye. In some cases clinicians involved in the child’s prior care may not be notified of the child’s death, which then prevents them from attending a funeral or wake. Lack of knowledge may also impede the family financially, creating barriers for further care.

Most children with a life-threatening illness have been treated for many years at a tertiary care facility. Over time many of these children and families have developed long lasting relationships with hospital clinicians. Many, if not most, of these clinicians want to maintain their connection to the child and family post discharge. The clinicians include: the referring physician within the hospital, the palliative care team, subspecialty physicians, child life specialists, nurses, social workers, and chaplains. It is not only the hospital-based staff members who express desire to be kept informed of the child’s care management post hospital discharge. The child and family frequently want their hospital-based care team to be kept informed and involved, even if the likelihood of the child being readmitted to the hospital is slim. Keep in mind that the child may have developed a relationship with the hospital clinicians over many years and this emotional connection and relationship should be nurtured if requested by the child and family.

Sometimes this relationship makes it more difficult to refer a child and family to a community-based hospice provider, especially if there is a history of poor communication or care barriers between the two organizations. The referring hospital team may harbor ill feelings from a previous care relationship in which they believed the hospice team did not keep them informed about the child’s care. The hospice team may have believed that the hospital team was over-reaching and did not allow the hospice team to do its job. Referrals may come late to a hospice with little resultant time to develop meaningful relationships with the child and family. This lack of time and meaningful relationship often makes it quite much more awkward and difficult for the hospice team to assist the child and family in talking about advance care planning and coordination. Hospital clinicians may believe that the hospice staff discourages a child and family from seeking the patient’s readmission to the hospital, whereas it might be that no one is effectively communicating that the child and family have opted for no further hospitalization. This personal decision, and the decision-making process, is accurately reflected in care documentation and the plan of care but may not be effectively communicated to hospital staff.

This push-pull relationship is often related to miscommunication and lack of understanding of the goals of care. Frequently, too, all involved parties do not come to understanding the child’s life expectancy at the same time. This leads to resentment and further barriers, or as we sometimes say, a lack of playing well together in the sandbox.

The inability of all care providers to acknowledge their own profound and important relationship with the child and family will potentially lead to inadvertent fragmentation of care and fewer options and opportunities for children and families to access quality palliative care. Effective and collaborative communication and problem solving must be a top priority. If poorly conducted, there will be a negative impact. The consequences are great when organizations don’t acknowledge the relationships among one other and the child and family. Children suffer in pain. Parents feel isolated, siblings may feel abandoned. Additional patients who might be served by either institution don’t get referred. Liben, Papadatou, Wolfe¹ describe cases in which Do Not Attempt Resuscitation (DNR) orders are instituted in hospitalized children close to the actual time of death. One can only wonder if these conversations had been undertaken sooner if more children would be discharged to home-based hospice or palliative care. Additionally, parents have described dissatisfaction with hospital clinicians who provided confusing and inadequate information regarding their child’s treatment or prognosis. These confusing conversations may also lead to late hospice referrals programs, or no referral at all, as clinicians and parents don’t mutually understand and communicate about the child’s limited life expectancy. Perhaps a mediated conversation with the community-based hospice provider or child’s community pediatrician would help in these circumstances.

The way out is a patient-centered approach in which important team relationships and contributions are valued and employed to support the child and family. It may not always be the same person in the lead, but there must always be the same commitment to working in concert, not in parallel or redundancy, to serve the needs of the patient. Hospice nurses and visiting nurses will have important insights to offer because of their closeness to the patient, but this also underscores an important coordination that should occur among palliative care, hospital-based programs, and community-based programs. The failsafe for this, given how central it is to its goals, is the pediatric palliative care team.

Relationships Within the Pediatric Palliative Care Team

The pediatric palliative care team has developed historically as a horizontally organized one in which the unique perspective and experience of each member is valued equally. This model contrasts with the hierarchical structure more typically seen in medical settings with each of the disciplines working under the physician’s leadership. While there are frequently issues that require the physician to make decisions, the group must function as a cohesive team with mutual respect for what each member brings. Teams meet either weekly or biweekly to discuss the active patients and assess any change in status, function, or symptom management. In general, physicians make intermittent home visits on an as-needed basis with the majority of the work being carried out by the community-based team consisting of social worker, chaplain, nurse, and often a child life or music therapist. Thus the physician and the rest of the interdisciplinary team rely upon the home-care team to be effective eyes and ears, relaying necessary information for discussion at the weekly meetings.

The allocation of responsibilities within the team usually follows along the lines of each discipline’s primary training. However, in pediatric palliative care, an interdisciplinary paradigm has emerged that represents an “approach that integrates the natural, social, and health sciences in a humanistic context, and in so doing transcends each of their traditional boundaries.”^14,15 Organizing along such lines allows each discipline to extend beyond its traditional boundaries and take on other roles as needed, adapting in a dynamic fashion to the changing needs and realities of the patient and family.¹⁶ Because the team is often spread over a large geographic area, an interdisciplinary approach allows members greater autonomy in problem solving, which permits the detection and resolution of problems more quickly and efficiently and contributes to better overall patient care (Box 17-1).

For an interdisciplinary team to function effectively and professionally, it is essential that each member be familiar with all of the various aspects of care that may be required. Open channels of communication are vitally important to avoid members working at cross-purposes. In addition, it is essential that each member of the team possess excellent interpersonal skills, maturity, and integrity. New members of the team must be carefully oriented to their roles and will develop their own style with ongoing experience and feedback from the group.

Assuring Patient Privacy and Confidentiality

We must recognize that the protection of patient and family privacy is a central element in building the professional trust that families need. Members of the palliative care team will see families at their most vulnerable, when normal social checks and balances on behavior may have worn thin. Professionalism mandates that healthcare providers protect the intimate information pertaining to medical details, financial status, the family’s functioning, and other private matters. Thus it is important that only information relevant to the care of the patient and family be provided to medical agencies that partner in caring for patients. The provision of various details to community organizations, including hospice organizations, schools, and churches, must be weighed against the rights of the family and patient to have their information kept private. Whenever possible, organizations should become familiar with the HIPAA guidelines and should use signed information release documents when these are available (see www.hhs.gov/ocr/privacy). Discussions of sensitive matters in interdisciplinary team meetings should remain professional with as little gossip as is humanly possible.

Palliative Care and the General Pediatrician

Successful collaboration between palliative care and primary care practitioners can contribute to improved care for children with life-threatening illnesses. These two areas of practice have great affinity in their emphasis on communication, the coordination of services, and the importance of family-centered solutions. There can, however, be great differences in the form as well as the success of the collaboration.

Parents often consider their primary care pediatrician their child’s real doctor, while in fact that clinician may have a very limited role in medical decision making for children in palliative care. This confidence from the parents reflects strengths in a relationship that may pre-exist the circumstances prompting palliative care and the fact that the primary care doctor may have made the life-threatening diagnosis in the first place. The parents may believe that the primary care pediatrician is in a special position to understand the needs and values of the family. It is difficult to overestimate the importance of a relationship with a family and a child that may have begun at a prenatal visit and has been a part of every major health-related event in a child’s life. It is not surprising that parents may desire the involvement of their primary care pediatrician in critical conversations and decisions. The palliative care team benefits when these strengths are incorporated into the overall care of the child.

One central challenge to effective, meaningful palliative care is to recognize and appreciate who the child is, separate from the ravages of disease and the sociologic stress of disease management. To the dismay of many parents, the healthcare team frequently understands and represents their child based upon their diagnosis and clinical course. However, the child under care has an identity and meaningful existence that, from a family-centered perspective, supersedes the identity of the patient the palliative care team may come to know in a specialized medical setting. The member of the child’s healthcare team most likely to apprehend this fuller sense of the child is the primary care provider. Supporting the involvement of the primary care practitioner supports an emphasis on seeing decisions in the context of the children’s undiseased lives, their families, and their communities, and can help assure that choices reflect deep-seated values and experiences.

The role of the primary care pediatrician in a child’s care may be different depending on the kind of condition requiring pediatric palliative care. Broadly speaking, the more typically described patient categories of pediatric palliative care can be divided into four categories:

Realistically, primary care pediatricians have contributions to make in the care of children in all of these categories and, with the possible exception of the first category, most of the children’s lives and their medical care are likely to occur in the community setting. While there may be differences in the willingness of primary care practitioners to become involved, practically speaking, in most communities he or she will be the central medical figure coordinating the child’s medical care.

In addition, there are two other areas where the palliative care skill set is employed in pediatric primary care. The first is helping a family respond to the sudden, unexpected death of a child, generally from trauma such as motor vehicle accidents, falls, drownings, and Sudden Infant Death Syndrome. These constitute the leading causes of death in children. The primary care pediatrician may be involved at the time of death or may be involved in helping counsel the family on appropriate ways to assist the siblings. Secondly, primary care pediatricians are routinely consulted for advice about disclosure and planning related to children after a parent receives a life-threatening diagnosis. In both of these areas, there is great promise that the field of palliative care can support and potentially improve the care provided by pediatric primary care practitioners. Reciprocally, involvement of primary care practitioners can help improve the care delivered by practitioners of palliative care.

The needs of children and families in palliative care can be better addressed when their primary care pediatrician embraces the concept of the medical home.¹⁷ The medical home can be characterized by a practice setting that incorporates commitments to access and care that is family centered, continuous, compassionate, culturally effective, comprehensive, and coordinated. This approach to child health is meant to offer an alternative to fragmented care lacking a sense of the whole child and family. While the approach is meant to improve the care delivered to children with a broad spectrum of chronic care needs, and not necessarily end-of-life care, the parallels and potential complements with palliative care are obvious. The medical home approach is based on confidence in the sympathetic perspective arising from a longstanding relationship to play an important role in the care of patients in palliative care. It meets the preferences of a family to have known, predictable sources of health care that understand the child, the family, and their community.

The primary care pediatrician with years of experience and trust with a family brings special expertise to the team of healthcare providers collaborating in the care of a child with life-threatening illness. One specific role is the potential to act as a two-way translator and communicator of medical information. Parents can sometimes have difficulty understanding medical facts and recommendations. They may not grasp the terminology used. The primary care pediatrician may have an accurate appreciation of how well a family understands things, and can help them bridge gaps in their understanding and knowledge. Conversely, a family may be more able to voice doubts and differences of opinion related to medical decision making with their primary care pediatrician. Once understood by the team, the family’s concerns and how they might want them addressed can then be shared.

Another strength of the primary care pediatrician’s role can be the fact that primary care is healthcare provided outside of the hospital and in the community. Families can feel overwhelmed with the logistical challenges of hospital-based care, and the child may have strong reactions to any return to the hospital setting. They may see healthcare delivered in the more normal setting of the primary care practice, when possible, as more tolerable.

Families and children place tremendous importance on maintaining normalcy. Primary care can be essential, in this sense, to maintaining quality of life. For the patient, this can mean routine visits, vaccinations, and developmental assessments. These visits may offer the only medical encounters where the rationale for involvement is not debilitating disease but the positive and ordinary characteristics of childhood. The primary care perspective also focuses on education and learning, social engagement, play, interests, and the child as part of a family and community. For parents and children interested in living a full life with the highest degree of quality, advice, and assistance in these areas can be extraordinarily meaningful.

A special case of this is the role of the primary care pediatrician for parents navigating palliative care. Matters of normal parenting can be challenging when children have life-threatening illnesses. Parents can come to see the impact of profound disease and its treatment as a kind of punishment, which they compensate for with lowered expectations of behavior, which can become its own burden. Consistent, sensible parenting in this alien terrain is important, even if it is tempered by a need for greater tenderness. Addressing basic parenting concerns such as sleep, diet, setting limits, and tolerating frustration and anxiety are important to parents and may have an important impact on the quality of a child’s life. Indeed, these concerns may at times be more fundamental to parents’ impressions of how well their child is doing than the actual physiologic markers of disease. Open discussions about parenting their child can be helpful.

The profoundly ill or dying child affects a whole family. The basic fabric of family life is at risk. Siblings have special needs and parents may need devoted settings where they can focus on how their other children are doing. The sibling’s health needs and requirements of normal development demand their own attention. Parents also place great importance on discussions between the primary care pediatrician and siblings about how they are experiencing and coping with their sibling’s illness. The appropriate topics and their depth of exploration may be affected by the age of the sibling, their relationship with the child requiring palliative care, the parental response, the sibling’s perceived need to replace the positive characteristics of the ill sibling, and the sibling’s capacity to grieve. The primary care setting is a place to begin to see that the sibling’s needs are not being missed.

There is a further role for the primary care practitioner in the community. Schools and community programs may have good intentions to include the child with life-threatening illness for as long as possible but may need help understanding and managing potential risks to the child. They also may need help communicating to other children involved in these settings, generally to make contact with the ill child less worrisome to others.

Taken together, it should be seen that primary care has an important discipline-specific role in palliative care. Nonetheless, the reality of involvement in the care of a child with palliative care needs and complexities can be daunting to a primary care clinician. Primary care practitioners may be uncertain about performing at a level that reflects their commitment to the child and family. In a typical career, a primary care practitioner typically has two or three patients in his or her practice who will die, and may feel ill prepared to competently respond to the needs of a palliative care patient. There are considerable logistical challenges when a clinician needs to be available to the intense and dramatic needs of a palliative care patient while seeing patients in a typical day in primary care. Most practice settings involve groups and cross-coverage, requiring careful communication among all of the providers and agreement in attaining the goals of care. There is great variation in how much or how easily a primary care pediatrician wants to become involved in the palliative care of patients.

On the other hand, given the broad scope of children appropriately receiving palliative care, it cannot be expected that there will be a pediatric palliative care workforce sufficient to respond to all end of life and palliative care needs. Ideally, the primary care clinician would be a part of an interdisciplinary model where his or her contributions to the care of the child and family are valued and incorporated into the overall plan of care. A challenge for the nascent field of pediatric palliative care is thinking creatively about models of collaboration. In its policy statement on pediatric palliative care, the American Academy of Pediatrics (AAP) asserts that “minimum standards of pediatric palliative care must include a mechanism to ensure a seamless transition between settings.”⁴ Such a seamless transition relies on communication, mutual understanding, and mutual respect between the various parties involved in the child’s care.

The successful collaboration and inclusion of primary care practitioners in palliative care is facilitated when certain conditions are met (Box 17-2). There must be a timely sharing of information, keeping primary care in the loop. Their contributions are only possible when the information necessary for relevant contribution is available. Obviously, more is needed than a discharge summary and efforts are best made to keep the contributing primary care practitioner updated on developments and involved in planning. As possible, the primary care practitioner should be invited to participate in discussions exploring goals of care and medical decision making. This not only has the promise of improving the planning itself but also helps ensure a more seamless transition for children between settings. Case coordination should explicitly include sharing responsibilities for outpatient management and acknowledge authority over turf. The care of children with life-threatening illnesses is undermined when the primary care pediatrician is unclear about whether certain decisions are out of their hands, just as it is undermining when plans carefully determined by the palliative care team are changed or ignored once the child has a change of setting. Social work and case management needs should be explored before discharge and reassignment of responsibility. Sensitivity to the different scale of available resources in the primary care setting will help assure a better quality of care for the child.

Finally, end-of-life care involving the primary care practitioner may also require backstopping on the technical matters of pain and symptom management where a potentially inexperienced or uncertain primary care clinician will be the first notified of changes and difficulties. Primary care pediatricians may also appreciate efforts to describe tasks necessary at the time of death.

Pediatric palliative care, working in coordination with the primary care pediatrician, can enhance and support community based models of care. Practical models will highlight the sharing of expertise with providers in the community and coordination at crucial times of decision making. Working together, the lives and the healthcare of children and families with life-threatening illnesses will be improved.

Palliative Care and the Fabric of a Family’s Life

The final domain of care involves the child in relation to the community organizations in which he or she has been involved. As is the case with adults, children are members of many communities. Beyond the nuclear and extended family units, the classroom situation is likely to be identified by most children as a strong point of reference. For pre-elementary children, the classroom provides fundamental lessons for social development. Elementary school provides opportunities to develop skills and competences in those things that our society values for achieving subsequent productive independence as adults. Middle school provides opportunities for individuation while high school provides the knowledge and skills to enter adulthood. The pursuit of developmentally appropriate learning is therefore critically important for the psychological well-being of children and adults in our society. When a child is confronted with a life-threatening illness, the attention will naturally be directed first at trying to combat and cure the condition. If it becomes clear that cure is not possible, a reappraisal of the goals of life is important to make plans in light of the new status. Throughout this process, keeping children engaged in the life activities that define normalcy for healthy children is psychologically beneficial and can serve to lift the spirits of an ill child. Simply getting to school for a few hours is often the most highly valued experience.

One’s legacy is often manifested through the impact one has on others. This is true for adults as well as children no matter how long or short their lives may be. To impact another requires relationships between people and this is the very heart of much of the work done in end-of-life care. This area of palliative care work is one of the richest opportunities for personal growth and professional satisfaction. Many of the relationships exist in classrooms, with neighbors in the community, in faith-based organization, in youth groups, and in scouting and athletic organizations. The impact of a child’s death reverberates through all of these communities and affects members who may not have directly known the child. In a society that has isolated the dying in institutions or hidden them at home, lay people have little exposure to terminal conditions except in the elderly in whom it is more to be expected. Palliative care organizations are routinely called upon to speak to school teachers and ministers to help them understand how to aid their constituencies in dealing with the death of a child in their midst. Other roles have included grief counseling for teachers when there are unexpected, tragic deaths in the student body such as from suicide or fatal motor vehicle accidents. These activities as community resources are vitally important to help members of the community process the death and grow from the experience to whatever extent possible. It is through such facilitation that the child’s legacy is further developed and his or her impact on the community can be realized.

The impact of the death of a classmate can be a profound and life-changing experience for a young person. In a society that is focused on materialism and appearance, it is a call back to reality when a classmate dies. How many students have asked themselves if they really have such hard lives when they are confronted with the death of a fellow student? One of the tasks of the palliative care team is to seek opportunities to bring meaning and understanding to the surviving members of the community when asked to do so. Grief counselors and other support personnel associated with palliative care teams can serve as mentors for school and community officials in dealing with a childhood loss.

For the individual patient with a life-threatening condition in the community, the palliative care team can bring to bear its broad and deep perspective on life and how to live in preparation for a possible death. The goal of the child life therapists, chaplains, physicians, and nurses is to create the best experiences of life possible to whatever degree the child’s condition permits. Through reinforcing relationships and finding creative ways for the child to remain involved with the community, the pediatric palliative care team can strive to give as much meaning to the child’s life and to all whom he or she touches.

Other important community partners include community pharmacies that may have provided medications to the child for many years. Their role may change as the child becomes more ill and receives his or her medication through the hospice provider. It is the thoughtful hospice or hospital based team that, with parental permission, includes the community pharmacist in the communication loop. A simple phone call takes little time and does much to ensure that these important relationships are nurtured. The same may be true for the durable medical equipment (DME) company. DME companies may also have provided medical equipment and wheelchair adjustments to a child for many years. Informing them of the child’s health status is more than a courtesy; doing so acknowledges the relationship between the child and family and the DME company.

By far the largest and one of the most important community partners is the child’s school, and to a lesser extent the child’s social, peer, and faith-based groups, religious youth groups, and scouting organizations (e.g., Boy and Girl Scouts). Child life specialists are often instrumental in assisting the ill child’s return to school. The child life specialist may work with the school faculty, classroom peers, and other students closely associated with the ill child. Schools should be a safe haven for children and for the child with a life-threatening illness returning to school represents a return to normalcy. It is important to discuss with the parents how best to include key school personnel in ongoing discussions about the child’s health status. This is in the best interest of the child. The ill child and his or her siblings may have attended the school for many years. The family may be well known and the teachers and office staff often have very warm and deep relationships with the child. It is important to determine from the parents how much information they would like the care program to share with school personnel.

Some school principals and other administrators become very concerned when a seriously ill child returns to school. Issues of DNR status are not uniformly acknowledged or followed.^18,19 This may create problems for the child and family as the school may call emergency responders even if the parents do not authorize such a call. Again, the care team might suggest a meeting with all involved clinicians and selected school personnel.

Service clubs and faith-based youth groups are also important social supports for the ill child and siblings. Knowing what information the family wants shared is important because these peers can be profoundly affected by the illness and death of their friend. Building relationships with these groups is important. Social workers and child life specialists have much to offer these often silent mourners. Their care needs are quite similar to the previous discussion of school classmates. Building rapport with these service and faith-based groups may also increase access for future care needs.

Summary

A hallmark of optimal pediatric palliative care is the seamless integration of the palliative care approach into total patient care. To achieve such integration requires the recognition of the complex relationships that create the safety net for children living with life-threatening and life-limiting conditions and their families. This chapter has provided many examples of such extended relationships and attempted to provide a context to permit practitioners to use the information in their own care settings. The reader is encouraged to consider this information and explore the myriad interactions, which directly affect the child’s care whether as an in-patient or in the community setting. Following death, a part of each patient lives on through the consequences of the relationships he or she experienced.