Even if you’re in the last phase of your life, there’s a very good chance that you have no legal document expressing how you want to be cared for at the end—whether you want your heart restarted, if you want a breathing machine or artificial liquid feeding, for example, or if you’d prefer to die at home without anyone trying to keep you alive. According to the Centers for Disease Control and Prevention, some 50 percent of Americans age 60 and older have no living will or advance directive spelling out these kinds of preferences, and between 65 and 76 percent of physicians whose patients do have an advance directive are not aware that one exists.
There are no stats on the number of seniors who say, “Of course I have a living will, but I haven’t looked at in years.” Or, “I have one, but I’m not sure where it is.”
If you never find time to do advance care planning or fail to give copies to the right people, not only are you giving up your personal options, you may inadvertently place your family in financial jeopardy. Many of the medical treatments that ultimately are ineffective at the end of life are quite costly.
So, where do you start?
How to Start a Living Will
Ideally, you’ll start by having “the talk” about your end-of-life care with those close to you and your doctor.
“Patients often have very specific thoughts about the type of care they want,” says V.J. Periyakoil, M.D, Clinical Associate Professor of Medicine at Stanford University School of Medicine. “Thirty percent did not want their heart restarted if it were to stop, 60 percent do not want to be on a breathing machine, 50 percent do not want artificial liquid feeding, 40 percent do not want dialyses and 60 percent want to die at home.”
It’s the conversation no one looks forward to — and, Dr. Periyakoil has found, one that many doctors have difficulty with and very few initiate. You can take the initiative yourself and make an “advance care planning” appointment. (As of January 2016, Medicare covers the cost of this visit.) But even then, you might find your doctor less than helpful.
The Stanford Letter Project Makes It Easier
One way to make advance care planning easier is by participating in the Stanford Letter Project, which is an initiative of Dr. Periyakoil and her team at the Stanford Successful Aging Program.
The project includes a “What Matters Most” letter that’s written in plain language and is far more specific than state forms for living wills or advance directives, which tend to be written in legalese. (You can access your state’s advance directive forms and requirements from the National Hospice and Palliative Care Organization website. If you have questions email [email protected] or call 800-658-8898.)
The goal of the Letter Project is to empower as many people as possible to prepare for the future by considering what matters most to them at life’s end and the roles they want family and medical professionals to play. You can involve those closest to you in answering the questions and follow up with a doctor visit, or simply send it to your doc. Today, many health care centers in the U.S. are using this letter.
To generate the letter, you’ll complete a simple online questionnaire (available in several languages). It can take a few minutes or much longer to fill out, depending on how many people you involve and how clear you are on the answers. The questionnaire addresses topics ranging from how your family handles bad news to the degree of sedation you’ll want, even if receiving it shortens your life. The form also specifies whether you want to be cared for at home, in hospice care or in a hospital, who should make decisions for you and when that person should take over. In addition to these preferences, the form addresses your goals and values, and how you approach decisions. The questionnaire is based on years of research, along with discussions and focus groups with people of different cultures, including non-English speaking adults.
You can watch videos here to see how other seniors are thinking and writing about these issues — check out Marilyn Ababio’s very eloquent responses, along with some more practical ones. Eventually, the project hopes to make available a What-Matters- Most Letter Bank of at least 100,000 letters written by people from many backgrounds and in various languages to serve as a guide to others who are just beginning on this journey.
Your Advance Care Directive
Once you’ve completed the form, click print, and the computerized tool at Stanford will give you a prefilled advance directive, along with a letter to your doctor that states your wishes.
Have the advance directive witnessed and/or notarized according to your state’s laws, and keep a copy for yourself in a place where you’ll easily find it and then distribute digital or hard copies to:
- Your healthcare agent or proxy
- A family member or a close personal friend, or both
- Your local hospital if it will keep the documents in your medical record
- Your family doctor and any other physician who cares for you
- Your state’s Advance Directory Registry if it has one
- The facility if you’re hospitalized—put a copy in your chart
With each new decade, or whenever your life or health circumstances change, review your advance care plans. If you do make changes, replace the copies you distributed earlier with the most recent versions of your advance directive.
Can’t I Just Wait?
If you’re tempted to do this later, the experts at Stanford have a message for you, “You could, if procrastination is your super-power.”