Imagine that you got into a horrific car accident or spontaneously suffered a stroke. You lose consciousness and wind up in the emergency room. But because of the circumstances, you’re not able to communicate with the doctors to tell them what you are — and aren’t — comfortable with.
Do you know who would make these decisions for you? More importantly, do you trust the person who’d step in and communicate your medical wishes?
Hopefully you don’t sit around pondering grim scenarios all day, but setting up documentation indicating who should step in is something worth thinking about. Many experts recommend filling out a health care proxy form, also known as an advance directive — a legally binding document that lets you choose a person to carry out your wishes in the event you become incoherent or incapacitated and aren’t able to tell doctors what kind of treatment you want.
Here’s a quick guide to health care proxies and why so many medical professionals say they’re your way of giving consent for certain situations when you can’t speak for yourself.
How health care proxies work
In the event of an emergency, doctors would go to what’s known as your surrogate decision-maker. By default, they’d first reach out to a spouse. If you’re not married, then a doctor would try to reach a first-degree blood relative (think your parents, adult children, or a brother or sister).
They’d ask them questions like: “Is this person OK with getting CPR, or would they want to stay on life support?” Ideally, your surrogate decision-maker would be someone you love and trust, and would make his or her absolute best guess as to what you’d want.
“The idea behind surrogate decision-making in health care is that we want the person who knows the patient best to be able to make a decision that the patient would make themselves,” Claire Horner, a medical ethics and health policy scholar with the Center for Medical Ethics and Health Policy at Baylor College of Medicine, told HuffPost.
However, not everybody is so lucky. Some people might not feel they can trust their spouses or families with such important decisions. This is where a health care proxy form can be incredibly handy (and, of course, lifesaving). If you don’t have a health care proxy legally in place and have to default to your surrogates, you may wind up depending on people who don’t know you best or who shouldn’t really be involved with your care at all, Horner explained.
A health care proxy form explicitly states your specific health care wishes and appoints the person who will be executing them on your behalf. It essentially bypasses whoever your default decision-maker would be, and puts the keys into the hands of someone of your choosing.
They can be especially important for the queer community
Having a health care proxy is especially important if you’re in the LGBTQ community, since for many such people, support systems often fall outside of traditional family structures.
“In the queer community, the concept of a chosen family is so important,” Scott Jelinek, a pediatric resident physician with Mount Sinai Kravis Children’s Hospital who’s involved with several LGBTQ educational and advocacy initiatives, told HuffPost. “Designating a health care power of attorney is a way to ensure that your chosen family will be acknowledged and honored if you become sick or injured.”
Furthermore, many people within the queer community may not be married, Jelinek noted. If you have a long-term partner but are not legally married, then your relationship wouldn’t be recognized unless your partner has been listed on a health care proxy form.
If your family members aren’t on board with your gender identity or lifestyle choices, or if you’re estranged from them, they probably aren’t the people who should be making critical medical decisions for you, said Ruth Linden, the founder of Tree of Life Health Advocates in San Francisco. These forms are meant to bring peace of mind, and the knowledge that the friends and loved ones you rely on most have the power to make decisions in line with your preferences, goals and values.
How to put one in place
It’s actually fairly easy to secure a proxy. Each state has its own form that can be downloaded from the state website — like New York’s form or California’s — or you can get one from your health care provider. In most states, you can use a quick service called Five Wishes, according to Linden. Download the form, fill it out, go over your wishes with your proxy, and then, depending on your state’s policies, go get it notarized or bring in two witnesses.
From there, it can get a bit tricky, as there’s no universal system where hospitals or doctors can go in and access these forms. If you’re in and out of the hospital — if, say, you have cancer or diabetes — then give the hospital a copy so they can upload it to their electronic records. Be sure to give copies to your health care proxy and your primary care physician so they have it on file as well.
As for emergencies, it might be helpful to keep the information on you. Some experts suggest carrying your form with you whenever possible, or putting a card in your wallet that says who your health care proxy is.
Health care proxy forms can be filled out at any age, but experts recommend doing one as soon as possible. They aren’t solely for older people or people with a terminal illness. Young people tend to be optimistic about their health and often don’t think about what would happen if they couldn’t make decisions about an injury or illness, Jelinek said.
Other than that, it may be a good idea to list a backup person, either on your form or on a card you keep in your wallet, in case your go-to proxy can’t be reached. You can also add your proxy as your emergency contact in your phone, and change your settings so it’s easily accessible to medical and emergency professionals in case you’re unable to convey the information yourself.
Lastly, know that you can change your advance directive at any time. Relationships change, life happens, your wishes evolve — and your health care proxy form should always be up to speed.