How can people with disabilities get started with advance care planning?

To start advance care planning, think of what treatment you would want if you became so sick that you would have to go to the hospital for a long time, or if your condition worsened. It may be hard to ask yourself those questions, but keep in mind that advance care planning is just a way to make sure your wishes are being honored. Also, your decisions don’t have to be permanent – you can change your plan at any time.

The first step is to talk to your doctor about your options for end-of-life care. Remember that your doctor is there to assess your physical health, but should also be open to discussing your wishes. It may help to bring a family member or friend to your appointment who can support you. Some people with disabilities report that they have faced negative attitudes when talking about end-of-life care with doctors or other health care providers. Having someone you trust present during those conversations can help make sure you get the answers you need to make informed decisions.

Consider these 4 questions when talking about end-of-life care:

If your heart stops and you cannot breathe, do you want CPR?

  • CPR (cardiopulmonary resuscitation) is when doctors and nurses push hard on your chest to try and make your heart beat again
  • CPR doesn’t always work to restart your heart
  • Sometimes, the strong force of CPR can bruise or break your ribs

If you can no longer breathe on your own, do you want to be put on a ventilator?

  • A ventilator is a breathing machine that moves air in and out of your lungs. Doctors will insert a breathing tube down your throat.
  • The tube may make you feel like you’re choking
  • Doctors can give you medicines to make the tube feel more comfortable, but these medicines can make you sleepy

If you cannot eat or drink through your mouth, do you want doctors to give you artificial nutrition (food) and hydration (water)?

  • Artificial nutrition and hydration help get food and water into your body without using your mouth
  • Doctors may put a feeding tube in your stomach or put a needle in a vein so water can flow into your body
  • You can’t feel the taste or texture of food you get through a tube
  • Your mouth and lips may feel dry

If you’re in severe pain, do you prefer aggressive treatment to try to get better, or comfort care to soothe your pain instead of treatment?

  • You could choose aggressive treatment if doctors think it’s an option and you would like to try and live longer. It may help you, but you may have more pain during treatment.
  • Comfort care (also called palliative care) focuses on relieving your pain and symptoms at the end of your life. It does not try to cure your illness. For example:
    • You may get medicines for pain and upset stomach (nausea)
    • You and your family may see a counselor to talk about emotions or stress from your illness
    • Doctors may not do as many medical tests or treatments that strain your body

Learn more about the 2 types of comfort care: palliative care and hospice care.