Health Care Proxies: Let Your Voice Be Heard
From when the alarm blasts us awake until we drift off to sleep at night, the days are chock-full of choices—not only snap judgments, but those that require deeper thought. With the hundreds of decisions we face daily, who needs to sort through yet another one?
You do, if you haven’t begun to consider how you’d like your medical care to proceed, in the event that you become ill or injured and are unable to then make or express your wishes. Our expert Dr. Richard A. Demme sheds light on this important health care issue.
Health Matters: There seem to be several things people refer to when they talk about end-of-life planning—advance directives, living wills, and health proxies, to name a few. Can you provide a big-picture view here?
Demme: It certainly can feel a little confusing, which might contribute to the off-putting nature of this important subject. These things all fall under the same end-of-life planning umbrella.
Advance directives, generally speaking, are instructions specifying how a person wants her health care to proceed should she become incapacitated and unable to communicate her wishes. For example, in an advance directive, you can choose aggressive medical treatments, or to withhold certain life-support therapies, or ask for a trial period of treatment.
A living will is an older type of advance directive outlining treatment instructions. The intent of most living wills is to outline treatment limitations when the prognosis is poor.
A health care proxy is a person who is supposed to interpret your wishes about health care decisions. The form appointing this person is also called a health care proxy. Proxies are broadly empowered in New York State, which means there’s more flexibility when doctors communicate with them than when referring to a printed document, which can’t talk back and clarify.
Health Matters: So is end-of-life planning really for everyone—healthy, sick, young or old?
Demme: If you’re over 18, you can and should name a health care proxy. There have been historical court cases—long, ugly battles—about which medical treatments should be continued for people in persistent vegetative states. Do you think a court would make a better decision for you than your own chosen proxy? Of course not. Your proxy, someone you trust to make decisions on your behalf, could ask to continue or stop treatments.
There are no fees or lawyers in appointing a proxy. Remember to choose wisely—not someone who’s consistently unavailable, or someone who just can’t live without you. Surprisingly, about 30 percent of people might not choose their spouse/partner to make their health care decisions. You need to count on your proxy to be able to know when to continue aggressive treatment, but also when to say "Enough, now let’s concentrate on patient comfort." The hardest part about picking is figuring out who will make decisions according to your wishes, even if they personally would rather make a different choice.
Health Matters: Some of the legal documentation asks that end-of-life decisions be put into words. How can we keep language broad enough to prevent potential confusion? We’ve heard that you don’t want to have been so specific with your wishes that you inadvertently complicate situations you couldn’t have anticipated. Are there good online resources you can point us to?
Demme: Try to avoid such popular boilerplate language as “extraordinary measures,” and “natural death.” Don’t say, “Do everything.” Due to the absence of agreed-upon medical definitions for these terms, sometimes we doctors are left with question marks hanging over our heads. Instead of unhelpful buzzwords, find precise language to help you articulate your message. You can write things like “If I am no longer able to recognize my family, and am not likely to recover, I would want treatments stopped.” Or, “I would prefer to try to eat by mouth, even if there is a risk of aspiration pneumonia.” But, it’s difficult to forecast all of the medical situations you might encounter, so it is more useful for physicians to know who you want us talking to when you can no longer tell us your wishes.
One excellent resource is this easy-to-use website
(developed by a team of URMC medical students) that fleshes out these topics a bit more fully and allows you to generate online, using their forms, some of the documentation we’re talking about now.
Health Matters: So in summary, what’s the single action you’d recommend that readers take today?
Demme: You could probably guess, but here goes: Please consider appointing a health proxy—and don’t forget to communicate your health care wishes to him. Do it now.
Richard A. Demme, M.D., has been a board certified nephrologist for over 20 years. He is a Fellow in the American College of Physicians. He chairs the URMC Ethics Committee, and is the co-director of the Division of Medical Humanities and Bioethics. His interests include ethical issues in transplantation, end-of-life care, medical decision making and informed consent, and the history of medicine.