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 79, 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 tumor. 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.