Your Living Will: What If You Change Your Mind?
How to review and update your advance directives
Editor's note: This article is part of a year-long project about aging well, planning for the changes aging brings and shaping how society thinks about aging.
(This article previously appeared on MarketWatch.com.)
Many folks say they don’t want to live with the infirmities they see their loved ones suffer in old age. When it’s my turn, they’ll tell anyone who will listen, just put me out of my misery.
Here’s the thing, though: When a late-life health crisis does finally arrive, “I don’t know many people in the middle of it who say, ‘Take me out back and shoot me,’” said Dr. Sharon Brangman, chief of geriatrics at Upstate Medical University in Syracuse, N.Y. “They want to know, what are my chances?
The Right to Change Your Mind
Many people make so-called advance directives when they’re in their prime, outlining the medical interventions they would want or refuse in situations when they’re not able to speak for themselves. But after a serious medical diagnosis, or after decades have passed, those directives don’t always still match the wishes of the people who wrote them.
There’s been much talk recently about overly aggressive end-of-life treatment, when the medical establishment fails to honor a person’s wishes to die gently, often at home. This problem exacts a huge emotional and financial toll on families and the health system overall. (In 2011, about 28 percent of all Medicare spending, or about $170 billion, was spent on patients’ final six months of life, according to a 2013 analysis by the Medicare NewsGroup.)
But there’s also a flip side, medical professionals say. Interventions that people couldn’t imagine in their prime sometimes seem desirable when they’re infirm. Everyone who files an advance directive away in a cabinet — and let’s face it, that’s most of us, if we had the foresight to create one at all — should remember this: “Advance care planning is not a moment in time,” said Dr. Russell Portenoy, chief medical officer of MJHS Hospice and Palliative Care in New York City. “It’s a process.”
The process begins, of course, with creating an advance directive for the first time. While terminology varies by state, this term usually refers to two documents: a living will and a medical power of attorney, also known as a health-care proxy.
The former outlines what kind of medical care, especially life-sustaining treatments, a person would want if she can no longer communicate her wishes; the latter designates a person, known as an agent, to make medical decisions for the person who can no longer make them for herself.
Just over one-quarter of U.S. adults aged 18 and older has an advice directive, according to a study published early this year in the American Journal of Preventive Medicine. While older people were more likely than younger ones to have one in place, 32 percent of respondents age 55 and over did not have an advance directive. Everyone age 18 and over needs one: Infirmities strike mainly the old, but accidents and illness strike people of all ages.
A DIY Approach
Once the directive is made, people should revisit it periodically — and especially after any serious medical diagnosis — to see if the document still represents their best thinking. MyDirectives.com is a website that offers consumers a free way to create what the company calls a Universal Advance Digital Directive — essentially, a cloud-based living will, health-care proxy and organ-donor form that is legal in all states.
Consumers can log in to the site any time to review and change their responses to a series of questions about their priorities and wishes for care. Questions include, “If your health ever deteriorates due to a terminal illness, and your doctors believe you will not be able to interact meaningfully with your family, friends or surroundings, which of the following statements best describes what you’d like to tell them?”
One of the multiple-choice responses reads, “I prefer that they stop all life-sustaining treatments and let me die as gently as possible. I realize that I would not receive life-sustaining treatments including but not limited to breathing machines, blood transfusions, dialysis, heart machines and IV drugs to keep my heart working. Also, I realize that cardiopulmonary resuscitation would not be attempted, and I would be allowed to die naturally.” Another choice requests continuing life-sustaining treatments, while the third response reads, “neither of the choices reflects my preference” and leaves a blank space for elaboration.
Jeff Zucker, CEO of ADVault, the company that provides MyDirectives.com, co-founded the company with a partner after both experienced end-of-life care episodes with loved ones that didn’t go well. “There’s a massive cost in doing something to people that they don’t want done, and in not doing something that they want done,” Zucker said.
MyDirectives.com emails users periodically to ask them to review their documents. The system has several ways to alert medical personnel and family members to the existence of the directive, including a printout card for the wallet and email notifications for people the consumer designates.
A Change of Heart on Intervention
People’s preferences for medical interventions can change over time for a variety of reasons.
For starters, a 50-year-old might define quality of life very differently than he would 30 years later. The 50-year-old might cherish international vacations, while his future, 80-year-old self may be content to visit his grandchild on the other side of town. The 80-year-old might opt to undergo dialysis even though his younger self would not have wanted an invasive, time-consuming treatment that constrains his ability to travel.
What’s more, medical situations are often more complicated in real life than they are on paper. Let’s say the 50-year-old’s advance directive refuses the use of ventilators if he has a terminal illness. Fast-forward 20 years, and the man has terminal lung cancer.
He develops pneumonia on top of that, and doctors think that the temporary use of a ventilator will help him recover from that illness. He’ll still die of cancer, but maybe not for another, say, six months. If he doesn’t temporarily use the ventilator, he may die within days. He’d like more time to spend with his family and to get his affairs in order.
If the man is awake and alert when he’s brought into the hospital, he can accept any kind of treatment he wants, regardless of what’s in his living will. But if he’s unconscious, loved ones might look to his advance directive for guidance and struggle with the decision about how to proceed, Portenoy said.
To avoid this situation, the man could update his living will after receiving his lung cancer diagnosis to allow treatments that would extend his life. He could also talk regularly with his health-care agent — the person named as a decision maker in his health-care proxy — to make sure that person understands his views as they evolve.
Choosing Your Health-Care Agent
Since it’s impossible for a living will to anticipate every single medical scenario that could arise, experts say, it’s important for people to pick a health-care agent who knows them well.
Note: Make sure to specifically designate a health-care agent, independent from the person acting as your financial agent. Portenoy recalls a “tragic event” where a loving adult son showed up at the hospital to see his aging parent with a power of attorney form from the parent’s bank, which couldn't be used in a medical setting. (What happens next varies according to state law, Portenoy said; it’s best through careful planning to avoid that situation altogether.)
It’s only natural that an older person might want interventions to keep her in her current physical state, however frail, said Dr. Michael Wasserman, a geriatrician in Southern California. After all, from the perspective of an aging person, Wasserman said, “Where you’re at looks better than where you’re going to be.”