Title: Variation in State Medicaid Implementation of ACA: The Case of Concurrent Care for Children

Background: Only twelve percent of pediatric patients die with hospice support (1,2) and nearly a third of pediatric deaths are related to chronic complex conditions (3). The majority of these patients are enrolled in Medicaid due to disability status or severity of disease(3). Prior to 2010, pediatric families were forced to choose between attempts at curative treatment and hospice services and pediatric advocates recognized that this was a distinct barrier to families receiving hospice support. Section 2302 of the Affordable Care Act requires all state Medicaid plans to finance both curative and hospice services for children under the age of 21. The state-level implementation of concurrent care for Medicaid beneficiaries is not well specified and there is a great deal of variability between states in the specified guidelines. It has been challenging for clinicians, policy makers, researchers, and administrators to identify best practices, and evaluate the effectiveness of implementation and provision of concurrent care.

Design and Participants: This study analyzes variability in the scope of coverage and implementation of the Affordable Care Act section 2302 via a pooled cross-sectional comparative analysis in state guidelines surrounding the implementation of pediatric concurrent care from 2010-2017 using data collected from publicly available Medicaid documents. State-specific Medicaid hospice provider manuals, state plan amendments, and memos were the main sources of information. The analysis included all states and Washington D.C. A systemic search and data extraction template including definition, payment information, staffing guidelines, care coordination requirements, eligibility criteria, and clinical guidance were used. Using a summation of individual elements, an overall guideline implementation score for each state was calculated.

Results: Michigan offered the highest number of guidelines in five categories (definitions, payment, staffing, care coordination, clinical guidance). Nineteen states (including Colorado) offered no state-specific guidelines on concurrent care. The most common guidelines implemented were definitions (eighteen states) using terms like curative, life-prolonging, and disease-directed care interchangeably. There were no standard definitions for services related to terminal illness. Guidelines for the payment of concurrent care varied widely. Each state offered unique guidelines for provider payment under concurrent care. Care coordination guidelines including responsibility to communicate and coordinate billing processes were present in fourteen states but were inconsistent. Only three states contained guidelines on staffing concurrent care. Utah Medicaid placed the responsibility on pediatric hospice providers to offer specialized knowledge on how to meet pediatric-specific developmental and medical needs.

Commentary: Limitations of the study were reliance on publicly available documents and that implementation practices continue to evolve and change so this represents a snapshot of actual concurrent care provision. Nationally pediatric hospice care is frequently provided by staff with limited pediatric experience and training. Without clear guidelines, hospice providers without experience in concurrent care may fail to grasp its importance or implement concurrent care in concordance with family goals.

Bottom Line: Concurrent care allows pediatric patients with life-limiting illness to receive curative and hospice care simultaneously. This study highlights significant variation in concurrent care guidelines among states and the absence of guidelines in many states which can lead to confusion among providers of disease-directed treatment, hospice agencies, and patients and families. This study suggests actionable items for future research and policy.

References:
1. Murphy SL et al. Annual summary of vital statistics: 2013-2014. Pediatrics. 2017; 139(6): 1-12.
2. Lindley LC et al. Home care for children with multiple complex chronic conditions at the end of life: The choice of hospice versus home health. Home Health care Serv Q. 2016, 35 (3-4): 101-11.
3. Lindley LC et al. A profile of children with complex chronic conditions at end of life among Medicaid beneficiaries: implications for health care reform. J Palliat Med. 2013; 16(11): 1388-93.  

Source:
Laird J, et al. Variation in State Medicaid Implementation of ACA: The Case of Concurrent Care for Children. Health Aff (Millwood). 2020 October; 39(10): 1770-1775. doi:10.1377/hlthaff.2020.01192.