Mayo Clinic Q&A: Who should have an advance end-of-life directive?

DEAR MAYO CLINIC: My mom recently sat us down at the dinner table to talk about her wishes if something were to happen to her. She says we should all have advance directives made, but I feel like I’m too young to think about that. Who should have an advance directive? And what goes into it?

ANSWER: Kudos to your family for having those difficult conversations. Advance care planning is not just for elderly people or those with critical illnesses. We encourage everyone who is over 18 to think about completing an advance directive, which is a document that allows you to write out what your preferences are when you’re getting to the end of life.

There are usually two parts to an advance directive:

• The healthcare surrogate form, which will allow you to write down who would help you make medical decisions if you can’t make them for yourself. It usually allows you to put a first person and an alternate person as well.
• The second piece is a living will, which allows you to write what your wishes are at the end of life. You can indicate whether you want medical interventions that could artificially prolong your life if you have a terminal condition or are in a vegetative state. You mark yes or no.

When thinking about care are at the end of life, many people will say that quality of life for them is being able to engage and interact with family and do some of the things they love, not being on machines and tubes. Other people may say that quality of life for them is just being alive.

When you think about choosing your designated healthcare surrogate (the person who will make medical decisions for you) make sure the person knows enough about your medical condition and is aware of the available treatments and what state your condition is in. You also want to make sure this person would be comfortable making the decision you want them to make.

Once you’ve completed a living will and have chosen your healthcare surrogates, make sure these people know you have chosen them, what your wishes are and where the document is. You should also give a copy of the document to your healthcare team and hospital.

In the U.S. in general, we don’t do a good job at completing advance directives. Most people don’t want to talk about their care at the end of life. There is a notable difference, however, in the completion of advance directives between Black people and white people, specifically older people. The medical literature suggests that African Americans are less likely to complete advance directives because of several things:

• Culture. If the elders in the family don’t want to talk about advance care planning, it oftentimes won’t be discussed.
• Lack of information. African Americans are less likely to get information about advance care planning compared to white people.
• Spiritual beliefs. “If God is in control, why do I need to think about this?”
• Mistrust. There is an understandable mistrust of the healthcare system given the injustices that have occurred in the past and are still occurring.

We often talk about the fact that we want people to complete an advance directive to ensure that their wishes are known when they are at the end of life, but in some minority communities, particularly the Black community, it’s less about the individual person and more about what’s best for the community or family.

None of us really know when something serious may occur. Unfortunately, once people become critically ill, it’s a difficult time to take a step back and think about their wishes, so it’s good to have had these conversations before that happens. Think of it as a gift to your family members, your loved ones and your healthcare surrogates to be able to sit down with you when you’re clear and levelheaded so that you can engage in conversations about what your wishes are to bring you all peace of mind.

— Maisha Robinson, M.D., Neurology and Internal Medicine, Mayo Clinic, Jacksonville, Florida

Mayo Clinic Q & A is an educational resource and doesn’t replace regular medical care. This Mayo Clinic Q&A represents inquiries this healthcare expert has received from patients. For more information, visit www.mayoclinic.org.