Completing the Continuum of Care
The Growth of a Pediatric Hospice Program
by Wendy D. Winkler and Claudia A. Mardegian
This article first appeared in the February, 2001 CARING magazine
This article examines the process of integrating a pediatric program into an existing hospice organization. It also discusses the five phases a child and family experience, from entering hospice through grieving the loss of the child.
Angela Hospice is a not-for-profit organization with a 15-year history of providing compassionate hospice home care to the community of southeastern Michigan. Angela Hospice was responding to the needs in the community when, in 1993, it built and opened the Angela Hospice Care Center. This beautiful building with 16 private rooms was Michigan's first inpatient hospice built and designed specifically to meet the unique needs of the dying, and those who care for them. One year later, Angela Hospice expanded its services to better meet the needs of patients who were not yet hospice appropriate, yet had life-threatening conditions. In 1994, Angela Home Health Care began to provide skilled home care.
Hospices in southeastern Michigan had saturated the local market and some provided care for children. Still, a need for pediatric hospice emerged. The two children's hospitals, both within a 30-mile radius from Angela Hospice, admitted young patients to the hospital even as they were dying, and children would live out their final days inpatient. The hospital staff could not offer the family the choice of going home with hospice care.
To determine the needs of the community, Angela Hospice sent written surveys to many social work and discharge planning departments of pediatric hospitals, physician offices, and other agencies involved in the care of children with life-threatening conditions. This revealed a deficiency in the area of end-of-life care, respite care, and professional knowledge of pediatric hospice care. Additional data from local hospices and the state health department revealed that approximately 90% of children who died from non-accidental, disease-related causes died without hospice care.
Over the years, Angela Hospice recognized a need to develop a specific program of care to meet the unique needs of children and their families. This fact, as well as the mission to respond to the needs of the community, provided a ready environment for the development of a pediatric program. This initial and ongoing organizational support is essential for the success of a pediatric hospice-within-a-hospice program.
Kaye Herdoiza, RN, CPNP, who initiated the program, chose a name consistent with the developing mission, and as a way to give life to a program of care for children. "My Nest is Best" was selected as it reflected the belief that most children wanted to be at home. The next step in program development was establishing a mission statement that would drive each subsequent step. Consistent with the organizations' mission, but tailored for the care of children, the following mission statement emerged:
My Nest is Best is a family-centered program of care for children with progressive, life-threatening conditions. Care is led by the child and family and supported by a team of pediatric professionals. The goal of care is the holistic comfort of the child and family. The My Nest is Best team affirms life, celebrates the uniqueness of each family, and considers it an honor to walk alongside each family, empowering them to care for their child.
To develop the program, Angela Hospice formed a pediatric advisory board, which met monthly at first, and then quarterly. Representing a range of disciplines and organizations, this group provided advice and recommendations on fundraising, marketing, staffing, budget, education, program evaluation, and research.
In the first six months of program development, Herdoiza established networking relationships with local and international hospices, created pediatric forms, provided in-services for existing staff, and compiled research and anecdotal articles, texts, and other resources. My Nest is Best admitted its first patient into the program during the seventh month of operation, in December 1994.
During those first six months of caring for children, one person provided all nursing care and on-call coverage. Other members of the team were "borrowed" from the adult program after expressing an interest in caring for children, having experience in working with children, and having in-services on the holistic care of children.
In developing a pediatric staff, one must consider a few points. Do not expect an outpouring of resumes in response to ads placed. This is a highly specialized field and will require time to draw people whose professional passion is the care of the dying child and family. It is also important to look at potential employees in terms of their flexibility and tolerance to suffering. How do they adapt to constant change? Are they comfortable with a sense of helplessness that inherently accompanies a caregiver's inability to make sense out of the death of a child? These attributes will strengthen and sustain individual members and the team as a whole.
It was an important step in the growth of the program when a pediatric social worker and pediatric nurse were hired. The program has since experienced tremendous growth in both the direct care of dying children and their families and the bereavement care of grieving children and families.
Herdoiza sent written surveys to community contacts, eliciting the input of individuals who were involved in the care of children with life-threatening conditions. Such contacts included pediatric departments in hospitals, associations, and foundations for specific childhood conditions (i.e. Muscular Dystrophy Association and Leukemia Foundation). Follow-up visits and telephone calls were coordinated and shared between the hospice community liaison and the pediatric nurse. Through individual meetings with physicians, discharge planners, and social workers, as well in-services for hospital staff, ongoing education continued. Through these exchanges, children's access to hospice care improved.
Each child and family is unique and enters our world with different expectations, experiences, needs, and responses. Our program celebrates these differences and empowers families to draw from pediatric hospice the services they want or need. Our role is to walk alongside each family, assuring them of our presence as they care for their seriously ill child.
Despite these differences, a pattern of care has emerged in the families for whom we have cared. There are five phases, and each begins, but has no definitive end. Inherent in each phase is the potential for interdisciplinary care. The phases blend, and then become the family's hospice experience.
The introductory phase usually occurs on the telephone, in the hospital, or at the family's home and includes the informational session in which the nurse and social worker, if possible, explain the program. The child is included in this and is encouraged to participate in the signing of admission consent forms. During this phase, the family is often reserved and self-protective.
The next phase is that of establishing rapport or trust with the child and family. This is a process begun during the introductory phase and essentially ends following the successful management of crisis. This phenomenon has sometimes made the later introduction of staff somewhat difficult. We have found it important to introduce the primary nurse and social worker on admission and other team members as early as possible; otherwise, the primary nurse may become the only team member the family turns to for guidance. The family must be guided toward the importance of the team involvement...this benefits the patient and family as well as the staff.
Another important phase is the management of the child's symptoms and in turn, the distress of the parents and family. General guidelines in this area are:
So much of this phase involves teaching. First, there is the child who needs to know that his or her comfort is always a priority. Next, the families of dying children need to know about disease progression and predictable changes the child may experience. Written information about the signs of approaching death may be helpful and allow parents the opportunity to read only as much as they can handle. Parents need to be knowledgeable in the care of their child and supported as they achieve a sense of confidence in their ability to care and comfort.
Once the child is comfortable, families can shift their focus toward preserving whatever is significant to the child and family. For some, helping the child see friends and family who are important, or leaving remembrances (a recording of the child, letters, or special possessions) to certain people, may be accomplished. For others, it is the achievement of significant milestones, a birthday celebration, or a chance to sit atop a favorite bike, or attend school. While it is different for each child and family, it is nearly always a time of deep meaningfulness. Memories and life are celebrated.
In contrast to the previous phase in which the focus was grounded in the concrete, now a more spiritual and eternal perspective emerges. The hospice team may help affirm that which the family identifies as comforting. For each family, affirming that what they saw, heard, or experienced was real, will help them to integrate a sense of peace into their memory of their child's death.
This phase begins with the acknowledgment that the child may die and, in a physical sense, ends as the family gives the child to the funeral director. The family's needs will govern how time elapses after the child's death. For the family, time has stopped, in a sense, and has lost its meaning. Again, choice is critical at every possible opportunity. For instance, would the parents like to bathe their child, keep the child at home to afford other family members the chance to hold them and say good-bye, or drive the child to the funeral home? It is best to discuss these issues earlier, but staff should be open to change at any time according to the family's desires. Empowering families to choose what is right for them...and supporting them through it...for this reason, families with dying children allow us to work with them.
The pediatric social worker and, at times, the primary nurse, provide bereavement care to the family through phone calls, cards, and home visits. This care continues for two years in decreasing frequency, and often continues for as long as it is helpful to the family.
Essential to a program of pediatric hospice is strong support of staff. The entire organization must recognize and accept that pediatric hospice care, by its very nature, requires greater staff flexibility and intensity than that of adult care. Accordingly, management must include mechanisms to protect staff from overload. Such mechanisms include regular staff meetings with the opportunity to debrief, flexible work schedules to discourage overtime, ongoing professional education and development, retreats, and staff memorial services. Daily affirmations and recognition of the contributions of each team member are vital. These highlight the areas of staff support included in My Nest is Best. Strengthening the structure of support is an ongoing challenge.
On an informal basis, the team solicits feedback from families throughout the child's time with hospice. It is through ongoing, open communication with families that we may become aware of their needs and respond to them. In our experience, families are able to verbalize their concerns, and then suggest how My Nest is Best may better meet their needs.
Formally, the pediatric social worker sends each family a program evaluation survey and letter six months after their child's death, and then a bereavement evaluation at the thirteen-month point. The Quality Improvement Coordinator tabulates the results.
In just over five years of pediatric hospice service, My Nest is Best has provided care to nearly 100 children. Most of the pediatric patients have been at home, some have been inpatient in the Angela Hospice Care Center, and still fewer have been inpatient in a hospital setting. Each family has expressed a deep appreciation of My Nest is Best and a sense that only in cooperation with hospice were they able to keep their child in the comfort of his/her own home.
The pediatric advisory board has disbanded and the larger organization advisory board covers all programs. The pediatric team markets the program and encourages public relations within the community via speaking engagements to other agencies, hospitals, schools, or universities, and through a pediatric residency program. The nurse and/or social worker report to insurance case managers on patient care concerns, helping to build rapport and relationships for future cases.
An existing hospice organization may incorporate the care of dying children and their families by remembering that the core of all pediatric hospice care is patient advocacy. In addition, it is also important to continuously work to increase public and physician awareness and provide access to care for people of all ages. n
About the Authors: Wendy D. Winkler, RN, BSN, CPN supervises the My Nest is Best program of pediatric hospice care at Angela Hospice in Livonia, Michigan. She can be reached at 734/464-7810 or via email at wwin1226@aol.com.
Claudia A. Mardegian, RN, BSN, MSN, is currently part of the pediatric team of the My Nest is Best program at Angela Hospice. She can be reached at 734/464-7810.