Ethics from the Pediatric Home Care Perspective

Column Authors: Lisa Bailey, BSN, RN, CPN | Children’s Mercy Home Care  

Angie Knackstedt, BSN, RN, NPD-BC | Children’s Mercy Bioethics Center

Column Editor: Brian Carter, MD | Neonatal/Perinatal Medicine, Bioethics; Neonatologist; Pediatric Bioethicist; Interim Director, Pediatric Bioethics | Professor of Pediatrics, University of Missouri-Kansas City School of Medicine

When a child has health issues, worry and concern envelope the parents. Along with distress, these health issues may bring many new experiences for families. Understanding medical jargon, navigating medical settings, meeting experts in many medical disciplines, and learning new ways to care for the child are elements of life that parents encounter when the child is ill. Parents may wonder if they have the fortitude to care for their child in the home. What happens if the child needs medical equipment or services in the home? Parents may feel uncertain about how to manage the child’s medical complexity.

Another factor impacting the parents’ ability to care for their child’s care in the home may be the medical bills coming in for their child’s illness. For children with medical complexity, medical billing may be ongoing, especially if medical services and equipment are used in the home. The Code of Federal Regulations requires home health agencies who accept Medicare and Medicaid monies to divulge the cost of the supplies or equipment given to families.¹ This code requires many home health facilities to review health care costs with parents in advance of services, whether a child is insured by public insurance or private insurance. While Medicaid is the largest U.S. provider of coverage for children with complex medical conditions,² families that use private insurance for health care services must deal with deductibles, out-of-pocket maximums, and what their insurance may or may not cover in home health benefits. Below are challenges to consider when families use private insurance to pay for home health equipment and services. 

1. Employment must be maintained so the private insurance remains active. For parents of a child with medical complexity, balancing the tension between employment and providing adequate care can be difficult. Compared to parents of healthy children, caregivers of children with medical complexity are less likely to sustain full-time employment. These parents are more likely to engage in casual or in as-needed jobs, which often provide fewer if any benefits.⁴ For single parents, these challenges are even greater.⁵
2. Families must pay the health insurance premium and meet deductible and out-of-pocket requirements to access their health insurance at 100%.
3. Families might learn that their health insurance plan has exclusions for services and equipment they need. For example, their plan may provide no home health nursing or enteral feeding benefits.
4. Sometimes, families may learn that their insurance company has in-network benefits that require them to use a home care medical company that they would not otherwise choose.

Looking through the lens of ethics, focusing on nonmaleficence (not doing harm) and beneficence (doing good) might be helpful.

Nonmaleficence may be breached. Staff members worry about causing harm to a family when reviewing this information with them. Will the parents become upset, causing them to lose focus on the task of caring for the child in the home? Will the fear of financial burden overwhelm the family? For parents who must leave their employment and find they do not qualify for government subsidies, Medicaid, or Medicare, this can be financially overwhelming.³ For the parents caring for children with medical complexity, continuing private insurance coverage can be challenging for the family.

Helping families find the right balance between medical care in the home and medical costs, the health care team members and financial/administrative team members may provide input to the medical team. Here are some strategies that aid these families: 

• Identifying whether the family is experiencing a financial burden and activating social work or financial counselors to review the case for areas of assistance.
• Helping cluster services and schedules to minimize time away from work and to decrease expenses (e.g., gas, food) a family may encounter with appointments.
• Allowing families to speak of their distress.
• Educating families about insurance issues.
• Watching for signs of financial burden that can lead to decreased treatment compliance.⁶

In summary, using private insurance for health care costs requires extra parental engagement and medical team savviness.

This begs the question of beneficence. Does the family benefit when one or both parents must maintain employment, pay the health insurance premium, and meet the deductible and out-of-pocket maximum, all to keep their insurance? Taking care of a medically complex child in the home is already a hardship without the added requirements of private insurance. While the strategies above will help any family who cares for a medically complex child, the added burden of employment to maintain health benefits should be taken into consideration. 

References:

1. Condition of Participation: Patient rights, 42 C.F.R. § 484.50 (2023).
2. Putney A. Across state lines, a family navigates medical complexity and Medicaid hurdles. Health Aff. 2015;34(7):1241-1244.
3. Thomas Hebdon MC, Phan CT, Phillips C, et al. Ethical and policy implications of financial burden in family caregivers. J Hosp Palliat Nurs. 2022;24(5): E226-E232. doi:10.1097/NJH.0000000000000887
4. Foster CC, Agrawal RK, Davis MM. Home healthcare for children with medical complexity: workforce gaps, policy, and future directions. Health Aff. 2019;38(6):987-993.
5. Kish AM, Newcombe PA, Haslam DM. Working and caring for a child with chronic illness: a review of current literature. Child Care Health Dev. 2018;44(3):343-354.
6. Gallups S, Moore B. Financial toxicity: ethical considerations for nurses. Nursing. 2019;49(10):18-20.