It was the weekend and my shift was nearing the end. The patient was secured in his wheelchair, ready to go home. He lives with a serious chronic condition, which requires intensive, around-the-clock care. I helped the parents pack and load everything he needs for daily survival – a suction machine, a nebulizer, a large bag of medications, the oxygen tank. They had just returned from a five day vacation, which was their first trip away together in many years. They joked about how much they slept while away. Once everything was loaded, we walked out of the room and to their van. As we stepped out, his dad turned to me and said, ““If I had a few million dollars, I would donate it all to this place.”
“This place” is George Mark Children’s House (GMCH), one of only two pediatric palliative care centers in the United States. This 9 bed freestanding center opened in 2004 and serves children with life-limiting conditions and their families. It is staffed with a multi-disciplinary team of healthcare providers including nursing staff, physicians, a child-life specialist, a psychologist, a social worker, and many volunteers. The center provides respite, end-of-life, and transitional care to children and young adults and their families. Respite care is provided to children with medically-complex conditions and provides their caregivers with a break from the demanding daily care. End-of-life care is provided to patients with a terminal illness and can include psychosocial support and symptom management. Transitional care is provided to patients and families who may need additional training or teaching in managing a condition, but are medically stable for discharge from the hospital.
The World Health Organization defines palliative care as “an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.” Pediatric palliative care (PPC) starts at the diagnosis of a life-threatening illness and complements curative therapies. A multidisciplinary team continually assesses and addresses the needs of families and children, especially related to quality of life and symptom management. Bereavement care, an integral part of pediatric palliative care, will continue to meet the psychosocial needs of the families after a child dies.
Pediatric palliative care is provided across settings; hospital, home, and community centers like GMCH. In hospitals, palliative care programs have increased in the last 10 years and in a sample of 162 children hospitals in the US, 69% had a PPC program in place (Feudtner et al., 2013). Home and hospice care programs in the community have also expanded and grown to provide family-centered care to children with life-threatening illnesses. Although there are few pediatric palliative centers in the US, there are many established across the world, such as in the United Kingdom, Canada, and Australia. These centers are a hybrid between home and hospital care and offer an innovative model of palliative care.
My nursing work at GMCH has shown me how essential the services and programs are to families with children with life-limiting illness. Families can use one of two family suites where they can have space and privacy yet still be steps away from the expert care of healthcare providers. I have cared for children at the end of life both in the hospital and at GMCH and seen firsthand some striking differences. For example, parents can choose to stay with their child for up to three days after their child’s death. The house has a dedicated space, called The George Mark room, where they can be with their child’s body, surrounded by their loved ones to pray, sing, receive comfort, and have time to say good-bye. This time can be immensely comforting to families in their grief, but this choice of having days to spend with their child is not a feasible option in the hospital.
For children with cancer, the continuum of care is applied to practice at GMCH. A child with a new cancer diagnosis may be admitted to GMCH for transitional care between the hospital and their home. They may need extra teaching and support for a new central line, mobility issues from a brain tumor or recovery from surgery. If a child’s illness becomes terminal (even many years later), they may return back to GMCH for end-of-life care where their symptoms, like pain, restlessness, or breathing difficulties, will be managed by an experienced multi-disciplinary team. One study in Germany reported that an increase in pediatric palliative care improved treatment of symptoms for children with cancer (Schmidt et al, 2013). Family members, including siblings, will receive ongoing education and emotional support. Importantly, they will have access to the comforts of home, like a laundry room, family room, playroom, kitchen, and gardens. GMCH is a meaningful place for families after a child dies and they are free to visit the house in the days and years afterwards.
I walk back towards GMCH after helping the parents transfer their son to their van and load their belongings. They tell me they’ll be back in a few months and are looking forward to it. As I walk towards the nurses’ station to finish my charting, I look around at the colorful artwork that hangs on the walls, the rocking chair right across from the station, and hear the radio softly playing music. I think about something a fellow nurse once said, “This house is life.” For many children and families, that’s what a pediatric palliative care center like GMCH offers them – living, life, and a place to be a family together.
For more information about George Mark Children’s House or to provide donations, go to www.georgemark.org.
Feudtner, C., Womer, J., Augustin, R., Remke, S., Wolfe, J., Friebert, S., & Weissman, D. (2013). Pediatric Palliative Care Programs in Children’s Hospitals: A Cross-Sectional National Survey. Pediatrics, 132(6), 1063-1070. doi: 10.1542/peds.2013-1286
Schmidt, P., Otto, M., Hechler, T., Metzing, S., Wolfe, J., & Zernikow, B. (2013). Did increased availability of pediatric palliative care lead to improved palliative care outcomes in children with cancer? Journal of Palliative Medicine, 16(9), 1034-1039. Doi: 10.1089/jpm.2013.0014
World Health Organization (WHO). n.d. WHO definition of palliative care. Retrieved from http://www.who.int/cancer/palliative/definition/en/
Alyssa Erikson, RN, PhD is an Assistant Professor in the Department of Nursing at California State University, Monterey Bay. Previously, she taught in Samuel Merritt University’s School of Nursing in the Accelerated BSN program. She previously worked in pediatric acute-care and oncology as a staff RN and currently works per diem at George Mark Children’s House, a free-standing pediatric palliative care center providing transitional, respite and end-of-life care to children and their families. Her dissertation research was a grounded theory study that explored how nurses navigate personal and professional boundaries in pediatric palliative care. Her current research focuses on bereavement services in adult Intensive Care Units. She received her BSN from California State University, Chico, MSN from University of California, San Francisco (UCSF), PhD from UCSF as a recipient of the Betty Irene Moore fellowship, and is a Certified Nurse Educator (CNE).