You may have heard about advance directives (also called a living will or power of attorney for health care) when you were going through the transplant process. You may have even created one. But did you know that it’s just as important for you to have an advance directive now as it was before your transplant? And that if you already have an advance directive, you should revisit it and update it from time to time?
The importance of an advance directive
“There are many misconceptions about advance directives, what they are and who should have one,” says Jill Randall, MSW, LICSW, a Be The Match® patient services coordinator. “It’s a good idea for every adult to have an advance directive for health care. They’re not just for people who have a life-threatening condition or for older adults.”
“Anyone could get in an accident at any time and need someone to make health care decisions for them,” she adds. “That’s why it’s so important for adults to have an advance directive.”
So what is an advance directive, and why should you look at it again if you already have one?
An advance directive is a legal, written document that has 2 parts:
- A living will
- A durable power of attorney for health care
The living will allows you to write down what your wishes are for your health care, including what kind of care you would or would not want to have, if you are unable to speak for yourself.
“A living will is not just a statement about when life support should be removed. That’s a common misconception. It also helps your doctors and the person you designate to make medical decisions for you when can’t speak for yourself, even temporarily,” Jill says.
Naming someone who can act on your behalf to make medical decisions for you is the durable power of attorney for health care. This person might also be called a health care agent, proxy or surrogate.
Have a conversation about your wishes
Remember, developing your advance directive isn’t enough. The conversations you have with your loved ones and health care team are just as important.
“The advance directive doesn’t help if no one knows about it. And if it’s needed, your loved ones may be left wondering what you would want. That can add a lot of stress to an already stressful situation,” Jill says.
“The conversations may be difficult, but they’re needed,” she adds. “Many people have a sense of relief that if they need to step in and make some decisions for their loved one, they know what their loved one would want. It’s reassuring for everyone.”
Debi, a transplant recipient, says, “When I got sick, I was so scared I didn’t sleep well for a long time. I looked at my will again, including my advance directive, and made some changes. Then, I sat down with my sons and my husband and shared my wishes with them. Knowing they understood my wishes relieved some stress during a very difficult time.”
Revisit your advance directive
Once you’ve developed your advance directive, it is important to go back and look at it occasionally to make sure that the wishes you have expressed have not changed.
“Things change for people over time. Your perspective after transplant may have changed. Or your life circumstances may have changed. Maybe the person you chose as your power of attorney for health care is no longer available, or maybe there is someone else you prefer now,” Jill says. “Even if you don’t make any changes, it’s a good idea to look at it from time to time to make sure everything is current. You can change your advance directive at any time and for any reason.”
If you do make changes, be sure to have conversations with your loved ones and health care team again so they know how your wishes have changed, and give a new copy of your advance directive to each. Your health care team will put the new document into your medical record.
If you haven’t created an advance directive, your health care team can provide you with the documents you need to get started. They can also help if you have questions about how to update your advance directive.
The following organizations also provide helpful information on advance directives: