Relationships with the Community: Palliative Care and Beyond

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. 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. 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. 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 ).

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 ).

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. 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 conditions 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.

• Tertiary care facilities

• Community pediatrician

• Community-based hospice programs

• Durable Medical Equipment providers

• Pharmacies

• Emergency responders

• Schools

• Peer, service, and/or faith groups

The impact of care fragmentation is great. Lack of communication or miscommunication may lead to unnecessary tests, treatments, or hospitalizations. 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, Wolfe 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.