How can people with disabilities let others know about their care decisions?

There are written documents that can tell your doctors and loved ones about your wishes for end-of-life care. They are instructions that will help guide the treatment you get. They’re important to have in case you’re no longer able to make decisions or speak for yourself. Sometimes people get a lawyer to help them prepare these forms.

  • Advance directive, also called a living will

You can prepare an advance directive at any point in your life. It’s best not to wait until you become very ill or your condition worsens. The form instructs EMTs (emergency staff), doctors, and hospital staff about the treatment you wish to receive. Keep it on your refrigerator and in your purse or wallet so EMTs can see it in an emergency.

Your advance directive may include the topics covered by the legal forms listed below, or you can prepare these forms separately:

  • Health care proxy, also called a durable power of attorney for health care

This form lets you name another person to make health care decisions for you when you aren’t able to. You can name a family member, close friend, or another trusted person. You should discuss your care decisions with the person you name as your healthcare proxy and give them a copy of your advance directive or other legal medical forms.

If a person has a severe mental disability and has been found by a court to be unable to make decisions for themselves, they may have a guardian who can make health care decisions for them. What kind of health care decisions a guardian is allowed to make will be different for each person, depending on what the court has ordered.

  • DNR (do not resuscitate) order

This form tells hospital staff that you don’t want them to use CPR to try to restart your heart if it stops beating.

  • DNI (do not intubate) order

This form tells hospital staff that you don’t want them to hook you up to a breathing machine if you can’t breathe on your own.

  • Organ and tissue donation

If you would like to be an organ donor, doctors could collect your healthy organs (such as your heart, kidney, or liver) after you die and give them to a person who needs a new organ to live. In most states, when you get or renew your driver’s license they will ask if you want to be an organ donor and put the answer on your driver’s license.

There is no cost to donate your organs, even if doctors need to use machines to keep your organs ready for transplant. However, if you sign a DNR or DNI order to not use machines, doctors may not be able to use your organs. So you need to decide which is more important: having a DNR or DNI, or donating your organs.

  • POLST (physician order for life-sustaining treatment) form, also called a MOLST (medical order for life-sustaining treatment) form

This form is a medical order, signed by your doctor, which lists your care decisions. It becomes a part of your medical record. Some states do not yet legally recognize medical orders, so check with your doctor or lawyer before you prepare one. See “How can I learn more about advance care planning for people with disabilities?” [LINK] to learn more about how to prepare a POLST or MOLST.

How do I share my care decisions?

Here are some tips on how to let others know about your wishes:

  1. After you set up your advance care plan, tell your family and friends about your choices. Give a copy of your advance directive or other written documents to a few people, especially to your healthcare proxy.
  2. Give a copy of your advance directive or other documents to your doctor.
  3. Keep copies for yourself in a safe place. Tell people close to you where you keep these copies (especially your healthcare proxy who can make healthcare decisions for you when you aren’t able to).

You can always make changes to your advance directive or other documents. If you do, be sure to replace the older versions you gave to your loved ones and your doctor.