Advance care planning for people with disabilities

What is advance care planning for people with disabilities?

Advance care planning is making a plan for the care and treatment you would want if you were unable to speak for yourself. If you live with a disability or a disabling chronic health condition, your condition could worsen, and you may no longer be able to make decisions on your own. It may be stressful for your family or friends to make decisions about your treatment without knowing what you want. This may delay treatment or cause you to get treatment you don’t want. Advance care planning is a way to make sure your wishes are honored.

 

Advance care planning includes:

• Learning about the types of care and treatment available at the end of life
• Discussing the options with your doctor and loved ones to help you decide what you want
• Making your care decisions known to others:
  • Telling your healthcare providers, family, and friends
  • Signing legal documents that show your decisions

If you have an advance care plan before you go to the hospital, your healthcare team will be aware of your choices and can treat you as you prefer.

Advance care planning may be especially important for people with disabilities that put them at higher risk for health problems. People with disabilities have often been excluded from making decisions about their own health or haven’t gotten the quality of care they deserve due to bias in the health care system. The Americans with Disabilities Act (ADA) protects people who seek medical care from being treated differently because of a disability they may have.

The same protection applies to advance care planning, which means that your wishes for end-of-life care cannot be denied because of a disability. Making a plan for the type of care you want to receive, filling out advance care documents, and sharing your decisions with others are tools you can use to make sure your wishes are honored.

How are advance care options different for people with disabilities?

Some advance care options may be different for people with disabilities. For example, some people with mental disabilities, such as severe mental illness or intellectual disabilities, may not be able to sign legal documents, even if they are 18 years of age or older. In this case, a guardian would be involved in the advance care planning process. Guardians are usually appointed by a court.

There are different ways people with mental disabilities can make their wishes for end-of-life care known. Some of them are:

• Using simplified materials that use pictures instead of words
• Asking questions about end-of-life issues using simple words and writing down the answers
• Involving caregivers and other people who know the person well to help communicate their wishes

There may also be differences in advance care planning for people with physical disabilities. For example, some parts of end-of-life care may be part of their daily lives, such as a feeding tube for food and water (artificial nutrition) or a breathing machine (ventilator).