Telemedicine and pediatric home-based palliative care: next steps for policy and practice in California
- Collection:
- Health Policy and Services Research
- Series Title(s):
- Issue brief (Lucile Packard Foundation for Children's Health)
- Author(s):
- Lotstein, Debra, author Eguizabal, Josseline Herrera, author Lira, Jessica, author Baird, Jennifer, author
- Contributor(s):
- Lucile Packard Foundation for Children's Health, issuing body.
- Publication:
- Palo Alto, CA : Lucile Packard Foundation for Children's Health, June 2021
- Language(s):
- English
- Format:
- Text
- Subject(s):
- Home Care Services -- methods Palliative Care -- methods Pediatrics -- methods Telemedicine Health Policy California United States
- Genre(s):
- Technical Report
- Abstract:
- Though children with medical complexity (CMC) make up less than 1% of all children in the U.S., they are a growing population with an outsized impact on the health care system, accounting for one-third of all pediatric health care spending (Cohen et al., 2012). While expanding the family-centered medical home model has appropriately been a primary focus for improving medical care for this population, pediatric palliative care (PPC) is an under appreciated resource that can provide an additional valuable layer of support for CMC and their families. Often misunderstood as focused on end-of-life care, the goal of PPC is improving quality of life for children with serious illness, including those considered to be medically complex, at all stages of illness. PPC clinicians achieve this goal by focusing on aggressive symptom management, guidance with communication and medical decision-making, and psychosocial support for the entire family. Clinicians providing PPC consider the child within the context of their family and community, and help parents identify and focus on what matters most to the well-being of their child. There are, however, relatively few physicians, nurses, and social workers with subspecialty training in PPC. Other important members of the interdisciplinary PPC team are also in short supply, including chaplains, child life specialists, and expressive therapists. Further, most PPC teams are based in children’s hospitals or in hospice agencies, limiting access to PPC to CMC who are hospitalized or those who meet hospice criteria (i.e. a predicted six-month life expectancy). This limited access means that children and families are often without the support PPC can provide at home outside of end-of-life care. Children with medical complexity deserve to maximize their time at home with family by limiting interruptions from medical appoint ments and hospitalizations. Providing care for these children and ensuring their comfort in the home can, however, place a burden on family caregivers. Families often struggle with providing medications and treatments, managing technology, and coordinating care across multiple fragmented service sectors. Providing pediatric palliative care services in the home has the potential to provide an extra layer of support for families to keep their child at home as much as possible. In an effort to expand home-based PPC support for CMC in California, advocates successfully helped the state develop a home-based palliative care (HBPC) Medicaid waiver program (PPC Waiver), enacted in 2009 and available as a pilot program to children served by California Children’s Services (CCS) in 10 counties. The program, known as “Partners for Children,” was provided by community-based hospice and home care agencies, and the services covered are listed in Table 1 (CCCC, 2019). Unlike with hospice care, children were not required to have a short life expectancy to be eligible. A single state-wide evaluation of the PPC waiver program showed positive outcomes, including fewer inpatient days and high family satisfaction with the services (Gans et al., 2012; Gans et al., 2015). On January 1, 2019, California changed how HBPC is provided for CMC, aligning the delivery model with the adult HBPC model for Medicaid beneficiaries, enacted in 2018 under California Senate Bill (SB) 1004. This shift in policy ended the PPC waiver program but expanded eligibility for HBPC services to all children with full scope Medi-Cal. It also removed the requirement that children should have a CCS-eligible condition. Anecdotally, uptake of the revamped program has been limited, with few community-based providers offering services, and there is a lack of clarity on how care provided by HBPC providers might be integrated with the acute care services that CMC receive. Better ways of incorporating HBPC into existing care delivery models and increasing access to quality PPC services are needed. One potential way to improve access to hospital and community-based PPC is through telemedicine (TM), i.e. the use of real time videoconferencing between patients and clinicians. TM has been used successfully to increase access for CMC to other pediatric subspecialists and to provide PPC services, including blended models of virtual and in-person care (Miller et al., 2020). While uptake of TM had historically been slow due to billing challenges and lack of familiarity with TM technology, the feasibility and acceptability of using TM has rapidly increased in response to the COVID-19 pandemic, further bolstering its promise for PPC delivery. In order to realize the full potential of California’s pediatric HBPC program, researchers from Children’s Hospital Los Angeles and University of Southern California’s Keck School of Medicine engaged a diverse group of stakeholders to better understand their perspectives on the current use of hospital and community-based PPC and how the transition in state policy has impacted them. Further, insights from these interviews were used to identify recommendations to improve implementation of the SB1004 policy for children and to develop new models of care integrating TM to increase access to high quality PPC.
- Copyright:
- Reproduced with permission of the copyright holder. Further use of the material is subject to CC BY license. (More information)
- Extent:
- 1 online resource (1 PDF file (8 pages)).
- NLM Unique ID:
- 9918366887706676 (See catalog record)
- Permanent Link:
- http://resource.nlm.nih.gov/9918366887706676