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Our Monday, Jan. 27 hour looked at the case of Marlise Muñoz , a 33-year-old paramedic and mother kept alive on life support against her family’s wishes for more than two months, due to her pregnancy. The state of Texas used a law which states that even a person with a living will which says they do not wish to kept alive in such a condition cannot be taken off life support if they are pregnant.
Muñoz did not have a written living will, but her husband, Erick had said his wife had expressed a desire to be removed from life support in such a case, but the vague qualities of the situation lead to the lengthy and controversial stand-off.
In preparing for the hour, we realized we had a lot of questions on living wills (also known as advance directives). On Point's Emily Alfin Johnson spoke with Meredeth Beers -- a partner at the law firm Holland & Knight in Boston — and Dr. Paul Mueller -- Professor of Medicine and Biomedical Ethics at the Mayo Clinic College of Medicine — to get some answers.
It is of course important to check on the rules and regulations regarding living wills in your state before you get too far along in the planing process. The rules and regulations vary from state to state, and what is sufficient to convey your wishes in court in one state may not be in another. You can find your state’s guidelines at the state Attorney General’s website, or at the National Healthcare Decisions Day site.
What is a living will?
A living will “allow a person to provide specific healthcare-related instructions and preferences and healthcare-related values and goals,” Mueller explained.
Often, a living will is part of a larger document — an advanced directive used “in the event that person loses decision-making capacity,” Mueller said. The other piece of an advanced directive (AD) is your healthcare proxy or medical power of attorney.
Living wills can come in all forms, with all different kinds of information.
“They can get into specifics with checklists and lists of illness while others are very vague," Beers said. “Doctors in states where living wills are legal documents want them to be specific as possible. “ Both are valuable, Beers said. “But legally, if you sit someone down with a list of horrible things, it can be a very hard process for people to handle," Beers said. "Often the more general the living will, the easier it is for someone to swallow.”
A living will should not be confused with a DNR – or “do not resuscitate” order, which informs people that, should you collapse, you do not want anything done to bring you back. to consciousness. “DNR’s are only given to patients on the edge – terminally ill or close to death,” Beers said. “They’re not appropriate for perfectly healthy people to sign.”
Why do a living will?
Living wills allow you to guarantee that the person you want to be making your decisions is empowered to make those choices in the event that you are incapacitated.
“In the absence of an AD, state law determines the hierarchy of who makes decisions for patients," Doctor Mueller said. Often that will be defined as your next of kin. Should you be unmarried, without close family, it’s wise to define who you want in that decision making role – so that it’s not up to the hospital to have to make the decisions.
Taking the time to specify can make life easier for love ones, as Doctor Mueller explained.
“Some of the unfortunate cases that have received national press coverage have involved patients who did not have ADs, and there was lack of clarity regarding values, preferences and so on," Mueller said.
Why does it matter what state I live in?
A living will is not considered a “legal” document (meaning it doesn’t hold up in court,) in every state. That does not mean they do not serve a valuable purpose for your family and doctors should you be unable to convey your wishes.
In some states, such as Massachusetts, you must designate someone as your healthcare proxy (or Medical Power of Attorney), Beers said.. In states like these, your healthcare proxy is responsible for voicing your decisions – not your living will. However, “the person who has to make those decisions is in an awful place," Beers said. "No one wants to pull the plug on a loved one. A living will makes your wishes clear and provides comfort for those who do have to make the choice."
Even if your state does not consider a living will a legal document, making your wishes known can keep an already difficult time from getting harder for the ones you love.
When should you get a living will?
“Any time once you’re over 18, when you can legally sign a document, it’s a good idea to have a legal will,” Beers said.
“Although it can be difficult for people to anticipate what might happen in the future, most people can determine who they trust and would like to make decisions for them,” Mueller said.
But it’s not enough to have one done and forget about it.
“The classic example is Ted Williams," Beers said. "He signed a living will years before died, and in it he had mentioned wanting to be cremated. When he died about ten years later, his son said he had actually wanted to be frozen. Not only is it good idea to have a living will, it’s a good idea to update it every few years, to avoid an equally confusing situation.”
What should I do with my living will? Does it need to be witnessed and notarized?
First, your physician should have a copy, Beers and Mueller stressed.It doesn’t hurt to make sure your healthcare proxy has one, or at least knows where you keep your copy, too. It’s also a good idea to talk it through with your healthcare proxy, your doctor and your family, Mueller said. Make sure to store your copy somewhere it is easily accessible – placing one in a safety deposit box or hidden away somewhere secret doesn't help if you’re not around to get to it.
In states where it’s not a legal document, your living will does not need to be notarized. If it is a legal document it generally must be notarized or signed by two witnesses. Double check with your state to find out exactly what they require.
You can find more resources and information on living wills, healthcare proxies and other key documents here, here and here.