Our recent blog post on the importance and value of compassionate hospice care received considerable attention. In that piece, I described how hospice professionals and caregivers support people in living well through their final days—minimizing pain, preserving dignity, and helping the individual and their loved ones find meaning at the end of life. That conversation about hospice and end-of-life care has stayed with me, and a recent study brought several related issues sharply into focus.
A major misunderstanding
The March 20 edition of the Journal of the American Geriatrics Society published findings from researchers in Yale’s geriatrics department showing that few older adults plan effectively for end-of-life medical decisions, commonly called advanced care planning. Even among those who do identify a surrogate decision-maker, communication gaps are common: surrogates often do not clearly understand the care preferences of the person they are meant to represent.
Dr. Terri Fried and her colleagues interviewed 350 veterans aged 55 or older who received primary care at a Veterans Affairs Medical Center. The team also interviewed the individuals each veteran had named as their surrogate. About half of those surrogates were spouses and roughly a quarter were adult children; the rest had other relationships with the veteran. Researchers asked surrogates whether the veteran would want certain life-sustaining treatments even if those treatments could leave them severely impaired physically or cognitively, or in significant pain.
More than 40 percent of the veteran-surrogate pairs agreed that the veteran had not effectively communicated their wishes with their surrogate. Many veterans had not completed a living will (advance directive) or a durable health care power of attorney (health care proxy) to put their preferences in writing or to formally designate a decision-maker.
Perhaps more striking, the veteran and their surrogate often disagreed about whether they had even discussed end-of-life choices. Only 20 percent of surrogates could accurately identify the veteran’s wishes concerning life-sustaining treatments. That accuracy was only marginally higher among pairs who believed they had communicated than among pairs who did not agree a discussion occurred.
A better process for clearer communication
These results highlight the need for more structured, candid conversations between older adults and their designated surrogates. Health professionals—primary care providers, social workers, and mental health clinicians—can play a stronger role in initiating and guiding these discussions. Tools and guided resources can also make the process easier and more systematic for families.
If you need to start this conversation—with an aging parent or as a senior yourself—here are a few questions that can help open the dialogue:
- What kinds of treatments would you want if diagnosed with a terminal illness? Are there specific interventions you would prefer to avoid?
- Have you formally named a surrogate in a health care proxy document so someone is authorized to make decisions if you cannot do so?
- It matters to me to honor your wishes. How can I best support you in making and documenting these decisions?
Talking about end-of-life care can be difficult, but sharing your preferences ahead of time can spare family members emotional strain when decisions become necessary. Clear guidance from you gives loved ones confidence that they are following your wishes and provides comfort during a challenging time.
If you have not yet designated a surrogate or prepared a living will, consider reviewing related guidance on power of attorney and advance care documents to help avoid future problems.