Shirley Rees had told her children not to take any “heroic measures” if she ever became seriously ill. But it was only when doctors discovered kidney cancer that Shirley, then 83, created a formal advance directive, a document that explains to healthcare providers and loved ones how you’d like to be treated if you can’t communicate your preferences yourself. Shirley and her daughter, Rhonda, went through the form together right before Shirley underwent surgery to remove her kidney. While the operation was successful, it resulted in complications that left Shirley dependent on dialysis, life support, a breathing machine and a feeding tube.
Rhonda told the doctor to do what he could to help her mother live, but her brother disagreed; he didn’t think Shirley would want to live in her condition. They consulted Shirley’s advance directive, but didn’t find the clear answer they were looking for. Instead, the directive seemed to contradict itself: Shirley had checked the box saying she wanted doctors to try to do everything possible to help her, but she’d also indicated that, should she end up on life support, she did not want to live.
Shirley was also still fully conscious, using nods, hand squeezes and blinks to communicate with her daughter. During this time, Rhonda says, Shirley “changed her mind from her advance directive. She could no longer talk, walk, eat or breathe properly on her own, but she did want to keep going and live.”
A psychiatric evaluation supported Rhonda’s determination that Shirley wanted to keep going, but Rhonda faced criticism from nurses, hospital staff and her brother for her decision. “People thought I was a cruel daughter to keep her living, but this is what she wanted,” says Rhonda, who acted as her mom’s healthcare advocate until Shirley went into a coma and died three months later.
“When we filled out the advance directive, we didn’t expect to face anything quite like this. These forms are complicated. You need to take your time filling them out,” she says, adding that, in the end, the directive helped her mother live longer. “If it wasn’t for that document, it would have been much harder to prove that my mother wanted the hospital to try various measures to help her.”
Nobody wants to think about death or critical illness. But taking the time to organize advance care planning and talk to your loved ones about your (and their) wishes can save a lot of heartache and headache. Here’s what you need to know to protect yourself and your family.
What is advance care planning?
“Advance care planning is a process where you can share some of your wishes and the things that are important to you if you are unexpectedly in an accident or diagnosed with a serious illness and can’t speak for yourself,” explains Jon Radulovic, vice president for the National Hospice and Palliative Care Organization.
This process usually includes naming a healthcare power of attorney and writing an advance directive, also called a living will. Your healthcare power of attorney, or healthcare proxy, is the person you identify to speak to clinicians on your behalf if you can’t. This could be a spouse, partner, parent, child or friend. “Pick the person who would be most comfortable making sure your wishes are carried out,” Radulovic says.
A directive can detail your desires, meaning both what you do and don’t want to happen to you. It can cover a wide range of preferences, such as:
- The conditions (if any) under which you want to be put on a ventilator for breathing or have a feeding tube put in.
- A “do not resuscitate” order.
- Instructions for the music you want to play in your hospital room.
- A request to have a chaplain visit your bedside.
- A list of family members and other people you do or don’t want in your hospital room.
Who needs advance care planning?
It’s worth designating a healthcare proxy at any age, especially if you want to choose someone other than a spouse, adult child or parent, who are typically the default options if no one’s named. If, like 15 percent of 24- to 35-year-olds, you live with a partner but aren’t married — and especially if you cohabit with children, like 35 percent of unmarried parents — you need to explicitly name your common-law spouse as your healthcare proxy. Otherwise, they won’t be chosen to make decisions for you.
It’s also important to discuss your wishes for care if you get sick or have a serious accident, although there’s no hard-and-fast rule regarding the right age to put your wishes in a legally binding document.
“Not every young person needs or should have a detailed living will,” says Joanna Hart, assistant professor of medicine at the Palliative and Advanced Illness Research Center at the University of Pennsylvania. “But it could represent your values.”
“Representing your values” might mean explaining that, to you, “living” means having the capacity to make decisions independently, or recognize and interact with your family, or continue to do the activities you love, such as hiking and camping — and that if you lose that capacity, you’d prefer to decline medical care.
Radulovic recommends having a living will in place when you have children. Also, revisit the directive anytime you hit a healthcare milestone or experience something that changes your values and priorities. For example, going on Medicare or receiving a new, serious diagnosis might warrant a directive review. And even if your health doesn’t change, every couple of years, you should make sure that the people closest to you and your healthcare provider know your current wishes.
Why don’t most people have an advance care directive?
As important as these documents and conversations are, few Americans have them. According to the most recent data, only about one-third of Americans have any sort of advance directive.
“We are sort of a death-denying society,” Radulovic says. “In some cases, people don’t think it will happen to them. In other cases, people think it’s disrespectful to think about what their aged mother would want at the end of her life.”
The forms can also be confusing, too. University of Oklahoma College of Medicine researchers recently found that a simple “Five Wishes” form was almost four times more likely to be accepted by patients, compared to the standard 20-page Oklahoma Advance Directive.
Furthermore, “clinicians sometimes struggle when helping people and guiding them through advance care planning, lacking the communication skills to do so well,” says Hart. “In some situations, unless someone has a clear trigger to do it, we often put it off to address more pressing needs during office visits.”
“It is much more meaningful if the advance directive specifies the person’s values and priorities, rather than specific treatments the person does or does not want.”
In January 2016, Medicare began reimbursing physicians for visits strictly for discussing advance care planning. However, a 2019 study found that most clinicians aren’t billing for this, and it’s not clear whether they’re having those conversations or not.
Lastly, because the advance directive is considered a legal document, many people complete one as part of their estate planning with a lawyer. “But this tends to be a rudimentary document,” says Hart, “and it may not be a nuanced enough discussion to personalize it to a person’s health situation.”
How to set up your advance care planning
If you feel it’s time to address your medical wishes, either make an appointment to speak with your primary care physician or find your state’s directive online. (The AARP has a list, or search NHPCO.org for your state’s advance directive.)
Whatever you do, put some thought into it and be sure you understand what you are filling out. “Talk to your family and ask questions of your healthcare provider,” says Radulovic, who also recommends The Conversation Project as a resource. Hart suggests Our Care Wishes, which “walks you through thinking about your life priorities and how those match up with your current state of health.”
“One of the difficulties of advance care planning is that many people are unable to anticipate the exact circumstances in which their surrogates would need to make decisions on their behalf,” she adds. “Therefore, it is much more meaningful — and likely to be effectively used by clinicians and surrogates — if the advance directive specifies the person’s values and priorities, rather than specific treatments the person does or does not want.”
For example, Shirley Rees could have said, “If I am conscious, even if I am unable to interact, I value life-extension, even if that means I might be uncomfortable and unable to live independently” and “If I am unconscious, I value control of pain and discomfort, even if doing that shortens my life.” Be as detailed as possible, modifying the living will as you wish.
Once you have your living will, share it with the people in your life and any relevant doctors, keeping a copy with your electronic medical records if possible. Only 16 percent of patients who visit preoperative testing clinics before surgery have an advance directive in their digital records.
You can also change your living will if you have a change of heart when you become ill. But don’t forget to revisit your advance directive as your health changes. And talk to your healthcare proxy so that they know what to do if you change your mind and can’t communicate.
“While it’s difficult to initiate the conversation, it will pay off when you find yourself in the hallway of a hospital trying to figure out what your loved ones would have wanted,” Radulovic says. “Once you are in a medical crisis, that’s a hard time to learn about your options and figure out what you want.”