Your elderly mother was just discharged from the hospital and needs a bevy of home care services if she's not to bounce back like a bad check: visiting nurses, physical therapists, delivery of assistive equipment like a shower chair to make bathing safe. Yet the day after discharge, she curtly tells each of these well-meaning visitors to "get lost" when they knock on the door. When you politely remind her how much she hated being in the hospital and that these folks would likely prevent her from being readmitted, she tells you she understands but, "I just don't like having strangers in my house and I'm willing to take that risk." So what's going on here?
On the one hand, Mom could have all her marbles and be making a decision consistent with the way she lived her life: as a rugged individualist who makes her own decisions and is willing to live with the consequences. She has capacity. It is also possible that because of any number of factors -- new medications, leftover confusion from the hospital, early dementia -- that she is incapacitated.
My good friend Dr. Jason Karlawish is a pioneer in a field he calls neuroethics. He's a geriatrician at the University of Pennsylvania who works closely with neurologists who care for and study patients with various degrees of memory loss and dementias like Alzheimer's Disease. Last month, he gave a stunning presentation for attendees of the NYC Elder Abuse Conference at the New School in New York City about the assessment of decision-making capacity of older adults with and without these disorders. Here are a few of the remarkable findings from his research:
The problem is not having an impairment that threatens independence; the problem is having such impairment and not appreciating it and/or knowing how to solve it. Last month I saw a patient who could barely get from her bed to a chair; she lived alone and would not accept help, much to the dismay of her family. Any problem -- a fall, a fire, a medical emergency -- would be life-threatening. "How would you get out of your home if there was a fire?" I asked her. "I would wait for the fireman to extricate me," she replied, without any appreciation that this was a precarious situation and that her "plan" was irrational. A patient who instead responds by saying, "I know that would be dangerous, but I've lived a long life and I'm willing to take that chance if I can maintain my privacy and independence, so I will wear a life alert pendant," has both appreciation that there is a problem and the capacity to solve it.
Dementia does not incapacity necessarily make. Jason presented data to suggest that even patients in later stages of Alzheimer's disease can have the ability to make competent decisions. Conversely, because the disease in different people uniquely affects intellectual functions, some patients in the earliest stages of the illness lack decision-making capacity. The message here: Just because someone carries a dementia diagnosis, we should not stop asking them about their preferences and we should include them in decision-making processes as long as possible.
There are simple tools to assess capacity in real world settings but clinicians rarely use them. Yes, the likelihood of incapacity rises as many of the neuropsychological tests in patients with Alzheimer's disease worsen, but the relationship isn't linear. We should seek to empower all older adults, despite these impairments, and instead use tests that specifically measure capacity, like the ones Jason has developed.
Why is this important? Because there is an emerging epidemic of incapacity. The fastest growing segment of the American population is adults over the age of 85, and when you carefully test that population you can detect some degree of cognitive impairment in 40 to 50 percent of them. That's not synonymous with loss of decision-making ability, but it places our older loved ones at greater risk!
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