Caring for sick children is a privilege, not a job

Expert outlines the challenges

By Susan Huff
Director of Essential Services
The Center for Hospice and Palliative Care
Buffalo, NY

The challenges of providing pediatric palliative care are great, but the rewards are much greater. When a family invites you into their lives at time of grief and uncertainty, it is a privilege to provide care to a sick child and comfort the family. It is a special gift to follow them through the illness and be a presence at the end of life.

With that said, providing end-of-life care for children is very different than caring for dying adults. In fact, hospices should view pediatric palliative care as a departure from end-of-life care. I would argue that palliative care for children is not end-of-life. Rather, it is the ability to offer comprehensive supportive services to children diagnosed with life-threatening conditions.

The single tallest hurdle hospices face is providing these services at the time of diagnosis, when the first shades of grief, fear, and uncertainty begin to creep in — when the sleepless nights, seemingly endless medical procedures, and countless tears begin to overtake a family.

Success in conquering the toughest hurdle is dependent upon a hospice’s ability to meet a set of specific challenges that include:

  • administrative commitment;
  • how to provide core services;
  • financial needs;
  • integration of services.

Providing quality care to sick and dying children requires a high level of commitment. This commitment begins at the administrative level. Without it, the endeavor will wilt under the financial pressures associated with pediatric palliative care. The challenge at the administrative level will be its ability to maintain quality pediatric care and remain financially viable as a program. Children cannot simply be "absorbed" into an adult program. There are specialized services and training necessary when striving for a quality program. Services must be available for the entire family unit. This includes parents or primary caregivers and siblings.

Do not underestimate the cost factor. Pediatric programs are expensive, and that is one reason it is difficult to maintain successful programs. To date, all pediatric programs rely heavily on philanthropic support.

There are many questions administrators must ask when contemplating the development of a pediatric program: Who has pediatric expertise? Will it be supported by the community and board of directors? Are there aspects of adult services that can be used, or will an entire pediatric staff or facility be necessary? What is the need in the community?

There are differences and challenges within each community. Hospices should focus on figuring out how to provide the core palliative services to the patient population in their area. Medical needs of the child are often high-tech at home, which is very different than adult hospices, so pediatric expertise is paramount. Admission and discharge policies need to be liberal. Children die of different diseases than adults and they have a much longer trajectory of illness, necessitating longer admission criteria and possible discharge or "graduation" from the program with potential readmission at a later date when the illness again begins to create additional deterioration. There are multiple systems of care involved with children. When you’re dealing with children, you’re dealing with school systems, parents’ respite needs, and social activities are different from that of adults. The psychosocial, spiritual, and developmental needs of children need to be met. The definition of "family" is often much different and complicated than when we are caring for an adult. Extended and blended families are the norm, with siblings to consider.

From the onset of program development, we formed an advisory board of community members, which included all key players in pediatric care — physicians, administrators, caregivers (nurse, social work, child life), and also third-party payers. Insurers were interested in our ability to get children out of the acute care setting and into the home. This was particularly true with oncology patients. There was a great deal of skilled nursing care that could be done at home with home nursing intervention and parental teaching.

Integration of services is a key to successful palliative care. Our home care team provides a continuum of care from hospital to home. We are introduced by the acute care staff as an extension of their team. We are a constant presence in the hospital, with our medical director serving part-time there. Interdisciplinary team meetings are held in the acute-care setting. The majority of children in our program are still receiving therapy and may require hospitalizations. Having the meetings in the hospital allows the opportunity for acute staff and caregivers to attend and participate in developing a plan of care at home.

Finally, all this requires a substantial financial commitment; unfortunately, few hospices, if any, can afford these kinds of programs without community support. Fundraising will be an important component. Keeping a steady stream of donations is challenging in today’s economic environment. In our community, competition for donations for pediatric causes is tough because we have a Children’s Hospital that enjoys strong community support. When donors know where their dollars are going and can see growth in a program, it adds to the success. Developing relationships within the community can be a slow process. So, work within the pediatric care community, such as the local children’s hospital and tertiary hospitals within the community.

Not every hospice will be able to afford or pull together all the elements needed to operate a quality pediatric palliative care program. For those hospices that can, they will be embarking on an endeavor that will certainly remind everyone in the organization why hospices are truly a blessing.