Supporting people with intellectual and developmental disabilities (I/DD) at the end of life is a profound responsibility for care providers. Families often feel overwhelmed by the idea of hospice, but with the right support, the journey can be guided with dignity, comfort, and compassion. Hospice care honors a person’s preferences, reduces unnecessary suffering, and brings peace to both the individual and their loved ones.
Families may worry about whether their loved one will understand what’s happening, if hospice will disrupt routines, or if pain will be managed. There’s also a misconception that individuals with I/DD cannot participate in decision-making. In reality, many can express preferences in their own way, and hospice teams trained in I/DD care know how to listen and interpret those signals. Hospice adds support, it does not replace trusted staff.
What Are Some Best Practices for Communication and Planning in End-of-Life Care?
Quality end-of-life care relies on strong teamwork and thoughtful planning. Hospice teams, often including nurses, social workers, aides, chaplains, and medical providers, work closely with families, case managers, direct service professionals, and residential providers to ensure everyone is informed and supported. Effective collaboration means:
- Sharing communication strategies across the care team
- Maintaining familiar routines for comfort
- Planning ahead for changes in symptoms
- Supporting direct support professionals (DSPs), especially as they cope with grief
For people with I/DD, hospice teams work to understand each person’s communication style, what makes them feel safe, and what matters most to them. Clear, compassionate communication is essential. Best practices include:
- Using plain language
- Checking for understanding
- Allowing time for questions and emotional responses
- Involving supporters who know the person best
- Documenting wishes early, before a medical crisis occurs
How will hospice support our family or care team?
Hospice provides emotional support, education, and practical guidance, helping families and DSPs through grief and transitions.
Will my loved one be in pain?
Hospice teams are experts in pain and symptom management, aiming to keep individuals comfortable and respond quickly to changing needs.
Can my loved one stay in their home or group home?
Often, yes. Hospice meets people where they are, and familiar environments support emotional comfort.
Hospice is not about giving up, it’s about shifting the focus from curing illness to providing comfort and emotional support. Hospice empowers people to live their final chapter in a way that honors their life story. End-of-life care for individuals with I/DD requires compassion, patience, and a deep understanding of unique needs. When families, case managers, and hospice teams work together, they can create a peaceful, meaningful experience that honors dignity above all else.
Ready to Learn More?
Presented by Sarah Marshall, LMSW, Hospice Clinical Social Worker, and Rachel Weitzner, LCSW-C Associate Director of Social Services, this session will provide you with a better understanding of hospice care, best practices in communication, advanced care planning, and interdisciplinary coordination, as well as how hospice teams can support individuals, families, and care providers through a person-centered and dignity-driven approach.
