Do Your Loved Ones TRULY Understand Your End-of-Life Wishes?

Our recent blog post on the importance and value of compassionate hospice care got a lot of attention. In it, I talk about how hospice caregivers can help people have a good life, all the way to the end, making life’s final stages as meaningful as possible, free of suffering, and helping the person maintain as much dignity as possible. So, the topic of hospice and end-of-life care has been fresh in my mind, and it’s probably why the results of a recent study especially caught my eye…

A MAJOR misunderstanding

The March 20 edition of the Journal of the American Geriatrics Society featured the findings of an interesting study out of the geriatrics department at Yale University. The researchers discovered that very few seniors plan in advance (or effectively) for their end-of-life medical decisions (referred to as advanced care planning). But perhaps more striking, the study revealed that for those older adults who do take the necessary steps to identify a loved one to make end-of-life care decisions for them (referred to as a surrogate), the senior’s preferences are not always effectively communicated or properly understood by their surrogate.

To conduct their research, Dr. Terri Fried, a professor of geriatrics, and her colleagues at Yale interviewed 350 veterans 55 years of age or older who received their primary care in a Veterans Affairs Medical Center. The research team then interviewed separately the people the veterans had chosen to act as their surrogates. Approximately half of the surrogates were the vet’s spouse, and around a quarter were adult-children; the remainder had other relationships with the veteran. The researcher asked the surrogate whether the vet would want treatment even if that treatment would leave the senior severely impaired physically, cognitively, or in severe pain.

>> Related: CCRCs Keep Couples Close in Sickness and Health

More than 40 percent of the veteran-surrogate pairs agreed that the veteran had not effectively communicated their wishes with their surrogate, and it turned out, many of the veterans had not even created a standard living will (also called advance directives) to put their end-of-life wishes in writing, or completed a health care proxy (also called a durable health care power of attorney) to officially designate a surrogate.

But perhaps more shocking: In the course of their separate interviews, the veteran and his or her surrogate often disagreed about whether they had even discussed end-of-life decisions, the research team discovered. Only 20 percent of the surrogates could accurately state the veteran’s wishes on the topic of life-sustaining treatments. That level of understanding was only slightly better among the veteran-surrogate pairs who agreed that they had communicated about end-of-life care than those pairs that did not agree about whether those discussions had occurred.

>> Related: Time to Have a Senior Care Talk With Your Parents?

A better process for clearer communication

This study reveals stark evidence that seniors and their surrogates need to have more structured, frank conversations to plan for and properly adhere to end-of-life wishes. This could mean that healthcare providers and mental health professionals (like social workers) need to take a more active role in encouraging these discussions. It may be that the use of an online tool could help facilitate and simplify this important task. A few options include theconversationproject.org, prepareforyourcare.org, and agingwithdignity.org.

So, if this is a talk you need to have­–either you are a senior yourself or perhaps it’s a discussion you want to have with your aging parents–here are a few ideas for conversation-starters:

• What types of treatment would you prefer should you ever be diagnosed with a terminal illness? Are there treatments or procedures you would not want to undergo?
• Have you formally named a surrogate in a healthcare proxy document–someone who would be authorized to make care decisions on your behalf if you are unable to do so yourself?
• It’s important to me that we honor your end-of-life choices when the time comes; what can I do to best support you in making those decisions?

It is understandable if this is a difficult topic to think about, much less discuss. But consider the stress and anguish you can spare your loved ones during an already difficult time by sharing with them your wishes before they are required to make choices on your behalf. Knowing that they are fulfilling a promise they made to you–adhering to the requests you made for your care–can be a source of empowerment and a great comfort to your family as you approach the end of your life.

If you are among the large percentage of seniors who have not yet formally designated a surrogate by signing a healthcare proxy and/or created your living will, check out my related post: Power of Attorney Documents Can Alleviate Problems Later.