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