If you become terminally ill, do you want doctors to use heroic measures like life support to keep you alive no matter what? Or do you want to avoid the intensive care unit and simply go home? It’s up to you. But if you’re unconscious or otherwise incapacitated, the medical team will have to ask your family. Do they know what you want at the end of life?
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Talking about your wishes with loved ones matters. Yet we rarely discuss them.
“The time to have a conversation is now, rather than in the middle of a crisis. Anyone can suddenly become critical after a car accident or stroke,” says Silvia Perez Protto, MD, MS, Medical Director of the End of Life Center.
“It always seems too early until it’s too late.”
She urges everyone over age 18 to do three things now to make sure their wishes are followed later:
1. Complete your advance directives
Advance directives are legal documents, but you don’t need a lawyer to create them.
They’re free and fairly easy to prepare. You either use a notary or simply sign the forms and have two witnesses acknowledge the document.
The most important advance directives in Ohio are the Health Care Power of Attorney and Living Will. (Be sure to check which advance directives are available in your state.)
- Health Care Power of Attorney. “The agent you appoint in the Health Care Power of Attorney is the person who will make medical decisions for you if you can’t speak for yourself,” says Dr. Perez Protto. Choose someone you trust to carry out your wishes. You can choose alternates as well. If you recover enough to make medical decisions on your own, their responsibility ends. Without a Health Care Power of Attorney, state law hierarchy determines who will make your medical decisions.
- Living Will. A Living Will spells out the kind of care you want if you cannot speak for yourself and are terminally ill or permanently unconscious, as determined by two physicians. “In the Living Will, the focus is on keeping you comfortable, rather than on using artificial support,” she says. You can also express your preferences regarding organ or tissue donation.
You don’t have to wait until you’re seriously ill. Completing advance directives is a bit like signing up for life insurance; it reassures you that you’re prepared for the unexpected.
“Review the documents and revise them every 10 years, or whenever you have an important life event, such as a new health diagnosis, a death or a divorce,” she says.
Be sure to give your family and loved ones a copy of your advance directives.
2. Talk to loved ones about your wishes
“As a critical care doctor, I often ask the family members about my patient’s wishes,” says Dr. Perez Protto. “Most of the time, however, they have not had that conversation.”
It’s tough for your loved ones to know your wishes unless you talk to them about it.
Dr. Perez Protto recalls that her own family struggled about whether to send their father, ill with cancer, to the hospital. One night, they admitted him to the ICU. Shortly afterward, he died.
“I thought my father was going to recover, so I didn’t have this conversation with him,” she says.
“We were not prepared for the worst. It would have been better if he had died at home, with all of us around him, in a less stressful environment.”
It can be uncomfortable to talk about illness and dying. But leaving things to chance can make decisions stressful and difficult for your family, if they must act on your behalf. It can also leave some members burdened by guilt.
Because it’s hard to start the conversation or to know exactly what to talk about, she recommends The Conversation Project, a national website that makes it easier to talk with loved ones about your wishes at the end of life.
“It is also helpful to explore your loved ones’ wishes, in case you have to make decisions for them,” she notes. “This guide helped me talk with my own mom about her wishes.”
3. Tell your doctors, too
As you near the end of life, do you want to know how much time you have left, or not? Do you want a say in every medical decision, or do you want doctors to do whatever they think best?
Your advance directives will help not only your family, but also your healthcare providers.
Give your doctors a copy of your advance directives to save in your medical record. (Now they can easily be scanned and uploaded into your electronic medical record.)
“It’s important for you to talk with your healthcare providers about your wishes and values regarding care at the end of life,” says Dr. Perez Protto.
“Because your healthcare goals may change over time, you can have multiple conversations.”
You may decide to talk to your loved ones or your doctor first, then formalize your wishes in the advance directives.
Or you can prepare the advance directives first, and then share them with your loved ones and your doctor.
The order doesn’t matter, says Dr. Perez Protto — as long as you go through the process.
“Everyone has a right to make their own decisions about end-of-life care,” she says.