Approximately 70% of Americans do not have an advance care plan. Advance care plans describe an individual's preferences concerning their healthcare and indicate whether they would want life-sustaining measures (such as mechanical ventilation) implemented if recovery chances are low (CDC, n.d.).
Role of Social Workers
Social workers can guide their clients and assist in making advance care plans. Advance care planning is a key component of care management for many individuals living with disabilities or chronic conditions.
Despite the increased life expectancy for those with intellectual and developmental disabilities, this population often has barriers such as limited access to care, constrained financial resources, and challenges in navigating and advocating for their care (Marsack-Topolewski, 2023).
Advance care planning with a social worker ensures the client is an active participant in decisions regarding their healthcare and preferences for where they will live, who they will live with, and who can help make decisions on their behalf.
Key Conversation Topics for Social Workers
Advance directives are legal documents that are subject to changing guidelines.
Social workers should seek continued education on this topic to adequately address their clients' needs.
Social workers can take the first step by familiarizing themselves with the following topics to begin building skills in advance planning for clients with developmental disabilities:
Family Considerations: Who are the people involved in making the care plan? An advance directive is written with family members and loved ones in mind. It is essential to consider the family dynamics and support system of the individual with disabilities.
Residential Decisions: What are the living arrangements, support needs, and guardianship decisions of an individual? What decisions can be made by the family to ensure safety and comfort for the person with a developmental or intellectual disability? Social workers can create resources and establish relationships with sites in the community to assist in making residential decisions.
Naming a Healthcare Proxy: Who is the healthcare proxy? The document should identify someone who can speak and make decisions on behalf of the client. The healthcare proxy can be family or a trusted friend.
Guardianship and Support Information: What does the client need for medical support? Will they need guardianship? The directive should provide details about guardianship and support needs for a person with a disability. This includes a list of all professionals, medications, equipment, and supplies needed.
Financial Considerations: What are the client's goals for their later years? Details on retirement, finances, burial funds, funeral arrangements, and financial decisions outlining the individual's end-of-life wishes should all be included. In addition, funds for healthcare, retirement, and cost of living should be discussed.
Plan Changes: How often will the client revisit their plan? The plan should be reviewed and updated over time, especially with changes in health, new medications, or new living arrangements.
Benefits and Challenges of Advance Care Plans
An effectively crafted advance care plan can reduce the burden of decision-making, enhance the quality of life, and increase the likelihood that medical professionals will understand and respect care preferences.
Social workers should seek continued education and familiarize themselves with legal, medical, and state guidelines when helping clients with advance directives.
Approaching this topic can be daunting for many clients. The thought of the unknown can provoke fear and lead to uncomfortable conversations. The process can be anxiety inducing, and individuals might avoid discussing it, especially with family members.
Regardless of abilities and conditions, every individual deserves to make empowered, understood, and respected decisions regarding their healthcare preferences.
For social workers, staying informed and educated on best practices in advance care planning will help clients, especially those with disabilities, make thoughtful and personalized decisions.
Resources
More on this topic can be found in the Continued Social Work course:
References
Centers for Disease Control and Prevention. (2022, April). Prep your health with advance care planning. Public Health Matters Blog. https://blogs.cdc.gov/publichealthmatters/2022/04/advance-care-planning/
Church, H. L., Marsack-Topolewski, C., McGinley, J. M., & Knoke, V. (2021). Advance Care Planning Within Individualized Care Plans: A Component of Emergency Preparedness. Developmental Disabilities Network Journal, 2(1), 3.
