Although it’s not always an easy topic to think about or discuss, having conversations with your family members in which you make clear how you feel about end-of-life care is important. Not only will it provide you with assurances that your feelings and wishes are understood, but people you love will find it easier to make decisions if they have full knowledge of what you really want.
However, only 56% of Americans have had a conversation with a loved one about end-of-life wishes, according to a report from the Kaiser Family Foundation and The Economist. The report also found that just 27% documented their wishes in an advance directive (a legal document that lets you outline what you want ahead of time), and less than 20% discussed their wishes with a health care provider.
Creating an advance directive before you become ill allows your health care providers and family members to know what types of actions to take—and not take—during an emergency, especially if you are unable to speak for yourself. Hospitals are required to provide patients with information about advance directives, per federal law. But specifics of the law vary from state to state.
In Connecticut, an advance directive, which is for people 18 and older, contains several parts, including a living will and appointment of a health care representative. You can download a form here or ask for one at the hospital or your doctor’s office.
Advance directives are not only for the elderly or people with serious health conditions. “Everyone should do this because everyone is at risk for unforeseen circumstances,” says Terri Fried, MD, a Yale Medicine geriatrician. “Even young, healthy people can have unexpected complications, requiring medical decisions they might not be able to participate in.”
What is a living will?
In a living will, you can outline what medical treatments you would accept or refuse if you are in the final stages of a terminal illness or permanently unconscious.
For example, you can specifically say whether or not you would want dialysis (for kidney failure), a ventilator (breathing machine), CPR (if you want to be resuscitated if you stop breathing or your heartbeat stops), or tube feeding. You can also decide whether to become an organ donor.
You do not need a lawyer to make a living will, but you do need two witnesses to sign it. Give a copy of your living will to your medical provider and bring a copy with you, if possible, when you go to the hospital. The document does not expire.
What is a health care proxy/representative?
Also known as a health care agent or a durable power of attorney for health care, a health care representative is someone—18 years of age or older—you choose to make medical decisions for you if you can’t make them yourself. This person, who could be a family member, friend, minister, rabbi, or priest, would follow the wishes of your living will. In Connecticut, you cannot designate your physician to be your proxy, but laws differ by state.
If you don’t have a living will, your proxy would work with your medical providers to make important quality-of-life decisions, such as choosing or refusing life-sustaining treatment or stopping treatment if your health does not improve. You should only name one person as your proxy, but you may name one or two others as backups in case your first choice isn’t available when needed. It should be noted that a health care proxy does not control your finances and cannot be forced to pay your medical bills.
Why is it important to have all of this in writing?
People may not know that in-hospital care is not provided by their own primary care physician who they see in the office. Having official documents filed in your electronic health record where all doctors can find them is the best way to ensure that these documents are available when they are needed, Dr. Fried says.
In addition to having your living will in writing, it is important to talk with your health care representative about your wishes, says Andrew Cohen, MD, a Yale Medicine geriatrician. “Your living will won’t necessary speak to every decision that needs to be made for you, so it’s important to talk to your loved ones about your wishes and not just put them in a document. That way, they can make the best decisions for you if you can’t make your own decisions,” Dr. Cohen says.
Can you change your mind about your living will?
Yes, you can change your mind about any part of your advance directive, but the process of updating it may vary by state, says Dr. Fried. In Connecticut, an advance directive form contains several sections.
“You can complete only those portions you wish and the end of the document consists of signatures by two witnesses,” Dr. Fried explains. “So, any time a document is completed or updated, to be officially recognized, it needs to be in writing and signed by two witnesses.”
Is a living will the same as a DNR?
No, a DNR is a medical order, Dr. Fried says, noting that it is one of the most common orders placed when a patient is admitted to the hospital. A DNR (do not resuscitate) order means you do not want CPR if your heart stops or if you stop breathing.
A DNR is not to be included in a living will, Dr. Fried says. “The DNR requires a process of certification by a physician, who puts an order in a medical chart,” she explains, adding that patients are given a bracelet to wear while in the hospital that identifies them as DNR. Frail patients may also want to create a DNR order that covers situations outside of the hospital, for instance, if they live in an assisted living facility. “Without this out-of-hospital order, a DNR is not transferable between hospitals,” Dr. Fried says.
Dr. Cohen notes that when an ambulance is called for emergencies outside of the hospital, all measures will be taken to save a patient’s life, including CPR, unless there is an out-of-hospital DNR order.
It’s never too late, or too early, to plan for the future and what type of medical care you would like to receive.