Long-term care providers have tough enough jobs, even before any tightrope dance with residents’ family members might have to take place.
Now come findings that confirm what many caregivers have believed for years: Surrogates overwhelmingly don’t know jack about their loved ones’ care preferences, no matter how confident they sound.
That’s according to a study I became aware of Monday. I haven’t been able to get it out of my mind since. It should bother you, too.
First, there’s the likelihood that, despite a lot of dutiful care and chores, I probably don’t know my own mother’s wishes about handling pain, incapacitation and other potential end-of-life situations.
Then I wrestle with it from a professional caregiver’s point of view. Man, this could make taking care of complex residents in facilities infinitely harder.
Get a load of the numbers: Just 21% of respondents in a survey of 350 people correctly knew their older family member’s preferences about handling incapacitation. However, a whopping 75% said they were confident that they did, in fact, know the preferences.
Ignorance, meet overconfidence.
Now, caregiver, deal with misaligned familial wishes. You’re rather volunteer for sorting hazardous waste bags, you say? I get you.
Researchers conducted separate interviews with patients 55 and older receiving care through the VA Connecticut Healthcare System and their surrogates, who were mostly family members. They inquired about three outcomes: being bedbound and requiring assistance with activities of daily living such as bathing, dressing, grooming and toileting; being unable to recognize family members; and daily pain feeling like a broken bone or appendicitis.
The patients and surrogates matched answers on single issues a little more than half the time (54% to 59%). But the rate for getting all three situations correct plummeted to just 21%, according to researchers writing in JAMA Internal Medicine online on Monday.
“Patients and their loved ones actually tend to overestimate how well they’ve talked to each other” about advanced illness care choices, said lead study author Terri Fried, M.D., a professor of medicine at the Yale School of Medicine and an attending physician at the VA Connecticut Health Care System.
The worst part of this is the overconfidence, she added.
The major disconnect often comes from patients wrongly assuming they’ve made their preferences well known.
On the other end of the relationship, a surrogate often mistakes passing comments — perhaps made during a TV show — as rock-solid conversations about personal care preferences when they aren’t.
Talking to the TV isn’t the same as talking to the trusted person sitting the in the same room with you. This would be great for a sarcastic “Who’d have thought?” type comment. Except these extremely sensitive discussions can be fraught with pitfalls and discomfort, if they even ever take place, that is. I feel for people like me, who better have a heart-to-heart with their loved one(s) sooner than later.
Of course, part of this can be cleared up by more pervasive use of advance directives. Yet, those address mostly pure end-of-life issues, not necessarily the puzzle pieces with jagged edges that often pop up at interim stages.
Fried recommends that surrogates, who were spouses for 52% of the study subjects, discuss a loved one’s preferences multiple times since attitudes can change with age.
Caregivers should gently prod these conversations along, reminding, if necessary, that they will be much more difficult to have in times of crisis. Clearly, nobody needs a harder job when it comes to this.
Follow Editor James M. Berklan @JimBerklan.