Home-based hospice and palliative care emerging as ‘field within a field’
RachelThienprayoon, M.D., M.S.C.S., FAAHPM, FAAP
Focus on Subspecialties
A common misconception in pediatrics is that palliative care is equivalent to end-of-life
or hospice care.
The Center to Advance Palliative Care defines palliative care as specialized care
for people living with serious illness, providing relief from symptoms and stress
to improve quality of life for patients and families. Palliative care is appropriate
at any age and stage in a serious illness and can be provided along with curative
treatment. Conversely, traditional hospice care applies to patients with a life expectancy
of six months or less.
New therapies and technologies have transformed previously fatal childhood diseases
into chronic illnesses of adolescence and young adulthood. Many children with serious
illnesses are eligible for in-home pediatric palliative care programs for years to
decades before they become eligible for traditional hospice care.
Pediatric home-based hospice and palliative care (HBHPC) is an emerging “field within
a field” of pediatric palliative care (Kaye EC, et al. CA Cancer J Clin. 2015;65:316-333). Numerous studies have shown that HBHPC programs improve quality
of life and decrease cost and length of inpatient stays. HBHPC patients also are more
likely to die at home than in the hospital.
Pediatricians should be aware of these programs, recognize their value and refer eligible
patients when programs are available.
Patient-, family-centered care
Though HBHPC programs vary in breadth and depth of services offered, they commonly
provide nursing support; pain and symptom management; continuity and coordination
of care; durable medical equipment and medications; and ancillary services such as
child life, music therapy, art therapy, pastoral care, social work and bereavement
care. Some programs also offer hospice care, allowing transition between hospice and
palliative arms depending on clinical status and prognosis.
HBHPC programs benefit the entire family. For example, child life, music therapy and
art therapy can focus on sibling needs. HBHPC also can lessen the burden of complex
care coordination that frequently falls on parents. Furthermore, home-based care means
families can avoid transporting fragile children with myriad technologies to the hospital
or clinic; care comes to where they are most comfortable.
HBHPC should be offered to all children with serious illness, regardless of their
Patient eligibility depends on individual program requirements and insurance coverage.
Children commonly eligible for enrollment include those with complex medical needs
or who are technology dependent, patients with frequent inpatient admissions and/or
children with the primary goal of avoiding hospital admissions.
A recent AAP Section on Hospice and Palliative Medicine survey found that multiple
HBHPC programs exist nationwide (http://bit.ly/2tJBybf). While not comprehensive, the list highlights the national availability of HBHPC.
South Carolina and Vermont have funded statewide HBHPC initiatives, and California
has a state-funded program available in 11 counties.
Some pediatric hospitals offer palliative but not hospice care; others offer both.
Programs are clustered around large cities, and pediatric palliative care teams continue
to struggle to connect rural patients with home-based resources. Numerous adult hospices
will provide hospice care to children.
A provision of the Affordable Care Act allows children who receive hospice care to
receive concurrent cure-directed care. Historically, hospices had variable success
in billing for concurrent care, but significant strides have been made in payment.
National interest in and the importance of HBHPC are growing. For example, the Cambia
Health Foundation’s Sojourns Scholar Leadership Program cultivates leaders in palliative
care and provides recipients with a $180,000 grant to conduct a project in the field.
Debra S. Lotstein, M.D., M.P.H., FAAP, a pediatric palliative care physician at Children’s
Hospital Los Angeles, recently was named a Sojourns Scholar. Dr. Lotstein’s work focuses
on increasing access to pediatric HBHPC and Partners for Children, the California
Many statewide pediatric palliative care coalitions are advocating locally to increase
funding for HBHPC programs and are collaborating at the regional and national levels
to drive the field forward. For example, the Ohio Pediatric Palliative Care and End
of Life Network has published provider-prioritized domains of quality in HBHPC (Thienprayoon
R, et al. J Palliat Med.2018;21:290-296), and studies evaluating parent perspectives are ongoing.
The availability of HBHPC programs is increasing, and many children with serious illness
are eligible. Research demonstrating the values of HBHPC is progressing, and quality
metrics are forthcoming.
Hospitalists, general and complex care pediatricians should refer eligible patients
to local HBHPC programs, when available.
Dr.Thienprayoon is a member of the AAP Section on Hospice and Palliative Medicine.