End-of-Life Care Planning for Individuals With Special Needs

Takeaways

• Beginning end-of-life care discussions long before a crisis arises, using clear, plain language like “dying” and “death” allows the person with an intellectual or developmental disability (IDD) time to understand and revisit topics gradually.
• Individuals with IDD have the right to express their preferences. Adapt the conversation using visuals or short discussions, and offer concrete choices to help them communicate their desires.
• Once their wishes are known, work with trusted supporters to formally document them in legal forms such as advance directives to ensure their voice is honored in all future care decisions.

Having conversations about end-of-life care can be challenging, and many people avoid them. According to The Conversation Project, 92 percent of Americans acknowledge the importance of talking over their end-of-life care wishes but only 32 percent have discussed them.

When a loved one has an intellectual or developmental disability (IDD), these discussions can feel even more difficult. Caregivers may want to protect the person from distress, and sometimes they fear the person may not fully understand. But individuals with IDD deserve an equal opportunity  to express their preferences, ask questions, and participate in decisions about their own lives, including end-of-life care.

With thoughtful preparation and the right support, families can empower a loved one with an IDD to understand their options and feel safe and respected in expressing their personal wishes.

Why These Conversations Matter

Honoring Autonomy and Dignity

Individuals with IDD have the right to participate in decisions about their bodies and medical care. According to The Arc and National Down Syndrome Society, person-centered planning is essential in all aspects of life, and end-of-life care is no exception.

Reducing Fear and Uncertainty

Talking openly about illness and dying can decrease anxiety. Silence can often cause more fear than the conversation itself, especially if the individual senses that their loved ones are worried about them.

Improving Care and Reducing Crisis-Driven Decisions

Understanding the person’s wishes helps families and caregivers choose treatments aligned with the person’s values, avoid unnecessary hospitalizations, and make better decisions in emergencies.

Communicating Grief and Emotional Preparedness

People with IDD grieve just like everyone else and need proper support in the wake of loss. Helping them understand illness, loss, and final wishes can provide comfort, support emotional expression, and improve coping, even before any crises occur.

When to Start the Conversation

Before There is a Crisis

Strive to explore end-of-life discussions earlier in life rather than later, ideally before a serious illness or emergency arises. For individuals with IDD, starting early offers such benefits as:

• time to revisit topics slowly, over multiple conversations
• reducing fear when the discussion happens before any urgent decisions are needed
• helping the person understand these concepts gradually rather than confronting everything at once

During Routine Life Transitions

Certain moments can naturally open the door to end-of-life discussions, such as:

• the death of a family member or pet
• transitions to adulthood
• discussions about guardianship, conservatorship, or estate planning
• medical appointments involving new diagnoses
• changes in living arrangements, such as getting one’s own place

These moments can help build comfort with topics like illness, treatment preferences, transitions, funerals, or grief.

When the Individual Brings It Up

Many people with IDD express awareness of aging, illness, and death. If they ask questions or show concern, that could be an appropriate time to offer reassurance and begin an age- and ability-appropriate conversation.

How to Discuss End-of-Life Care

Use Clear, Concrete Language

Instead of using euphemisms such as “passing away” or “going to sleep,” use plain terms like “dying,” “death,” and “serious illness.” Explain one idea at a time and check for understanding by asking the person to explain something in their own words.

Adapt the Conversation to the Person’s Communication Style

Depending on the person’s abilities:

• use pictures, social stories, visual schedules, or body diagrams
• allow gestures, devices, or communication boards
• break conversations into short discussions over days or weeks

Offer Choices Whenever Possible

Instead of abstract questions, such as “What do you want at the end of your life?,” offer meaningful, relatable options, such as:

• “If you are very sick, would you want to be at home or in a hospital?”
• “If machines can help you breathe, would you want that all the time, just to get better, or not at all?”
• “Who do you want to help make decisions for you if you cannot speak for yourself?”

Involve People They Trust

Trusted supporters can help translate medical information or reinforce key concepts. This may include family members, long-term caregivers or direct support professionals, case managers, or health care providers familiar with intellectual and developmental disabilities.

Provide Repetition, Reassurance, and Time

Revisiting these topics multiple times is normal. Approach the conversation with patience, validate emotions, answer questions honestly, and re-explain concepts as needed.

Document the Person’s Wishes

Once the person’s preferences are clear, families can help complete documents such as:

• advance directives
• POLST or MOLST forms (depending on state)
• guardianship or supported decision-making agreements

A Compassionate and Person-Centered Approach

Discussing end-of-life care with a loved one with an IDD is not about preparing for the worst but about honoring who they are, what matters to them, and how they want to live. When families create supportive, accessible, and respectful conversations, they build trust, ease fear, and ensure that their loved one’s voice remains central at every stage of life.

For additional reading on topics related to individuals with disabilities, check out the following articles:

• Study: Hiring Family to Care for Children With Disabilities
• How to Make Decisions for Adult Children With Special Needs
• Respite Care for Caregivers of Loved Ones With Disabilities
• How Life Care Planners Help Individuals With Disabilities
• Medical Decision-Making for Individuals With Chronic Conditions
• Mental Health Parity: What It Is and Why It Still Matters