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.
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Making these decisions about your end-of-life arrangements is never easy, especially in the heat of the moment. But if you’re unconscious or otherwise incapacitated, your medical team will have to ask your family what to do. Do they know what you want at the end of your life?
Talking about your wishes with loved ones matters. Yet we rarely discuss them. And there’s often some confusion around the difference between hospice and palliative care.
“The time to have a conversation is now, rather than in the middle of a crisis,” says Silvia Perez Protto, MD, MS, Medical Director of the End of Life Center. “Anyone can suddenly become critical after a car accident or stroke. It always seems too early until it’s too late.”
Dr. Perez Protto shares what you should know about advance directives, a healthcare power of attorney and living will, how they work and why you should get those in order as soon as possible.
What is a healthcare power of attorney?
With a healthcare power of attorney (HCPA), you choose who can make medical decisions about your healthcare if you’re ever unable to make those decisions on your own. This person, or agent, you choose will have the ability to make medical decisions, if needed, if you’re:
- Under anesthesia.
- Delirious or confused.
- In a coma.
- On life support and unable to make decisions.
If the person you choose is unavailable, you can also choose alternates. If you recover enough to make your own medical decisions, their responsibilities end.
Without a healthcare power of attorney, your individual state laws have a hierarchy that determines who’ll make your medical decisions.
For example, in Ohio and Florida, the list of people who can make medical decisions on your behalf follow this particular order:
- Your spouse.
- Your adult child or the majority of your adult children.
- Your parents.
- Your adult sibling or the majority of your adult siblings.
- Your nearest relative.
And in Florida (but not Ohio), a close friend who’s provided special care or concern for you and is familiar with your activities, health and religious or moral beliefs can make medical decisions for you if no one else is available.
“The power of attorney is like a safety net and it’s something I recommend everyone doing,” says Dr. Perez Protto. “If you don’t have a document, state law tells doctors who we should talk to and who is going to make decisions.”
What is a living will?
In the event that you’re permanently unconscious or terminally ill and unable to make decisions, a living will declares that you don’t want to be kept on life support, that you want to have a natural death and that medical care should focus on making you comfortable during that process. A living will tells your doctor to write a “do not resuscitate” order (DNR), which means you don’t want cardio pulmonary resuscitation (CPR) if your heart or breathing stops.
“The living will tells doctors what to do and the healthcare power of attorney agent can’t revoke that,” says Dr. Perez Protto. “In the case that a living will is signed, we will honor that person’s wishes.”
A living will becomes activated if two physicians determine you’re terminally ill and unable to make decisions, or if you’re permanently unconscious. It also expresses your preference for organ or tissue donation.
“In the living will, the focus is on keeping you comfortable rather than using artificial support in those specific circumstances,” explains Dr. Perez Protto.
Steps to get your advance directives in order
Advance directives like your living will and healthcare power of attorney 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.
It’s important that you don’t wait until you’re seriously ill to fill these documents out, though. Completing advance directives is a bit like signing up for life insurance — it reassures you that you’re prepared for the unexpected.
Here are three simple steps to get you started.
1. Have the conversation with your family and your doctors
“As a critical care doctor, I often ask the family members about my patient’s wishes,” notes Dr. Perez Protto. “Most of the time, however, they have not had that conversation.”
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 passed away.
“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 talking about illness and dying. But leaving things to chance can make decisions stressful and difficult for you and your family if they must act on your behalf. It can also leave some family members burdened by guilt.
Because it’s hard to start the conversation or to know exactly what to talk about, Dr. Perez Protto 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’s important to be very clear about what you want. Sometimes, people don’t like to talk about this, but it’s something we’re all going to go through,” assures Dr. Perez Protto. “We want people to be prepared and not thrown into a situation where they have to make decisions without the right tools. You should have the conversation today.
“It’s also important for you to talk with your healthcare providers about your wishes and values regarding care at the end of life,” he adds. “Because your healthcare goals may change over time, you can have multiple conversations.”
2. Scan your documents into your medical chart
Once you fill out your advance directives, you can reach out to your doctor or hospital system to request your documents be added to your medical chart. In some states, like Michigan, there are state registries where you can upload your documents so doctors can access them in the case of an emergency.
3. Review and revise your documents
Dr. Perez Protto suggests reviewing your advance directives and making updates whenever a new life event occurs, or revisiting them every 10 years. The people you choose as your agent should also have copies of these advance directives.
“Every time there is a death in your family, every decade, if there’s a new development or diagnosis for you, or if your children turn 18, make sure you revise these documents,” advises Dr. Perez Protto.
Ultimately, end-of-life conversations should be had long before a problem arises, and the sooner you fill out your advance directives and have these conversations with your loved ones, the more confident you can feel about unexpected issues in the future and the way your end of life will be handled.
“Everyone has a right to make their own decisions about end-of-life care,” says Dr. Perez Protto.