chew, swallow, dab routine and sipped his water. Then he rested his fork on the edge of his plate and leaned forward.
Here we go.
“It probably comes as no surprise to you that many of my patients—maybe most of them—end up losing their minds at the end of their lives. Dementia is terrifying to think about, but in some ways, if a person lives long enough, it becomes almost inevitable.”
Sasha’s mouth quirked into a little frown of disagreement, but she said nothing.
Across the table, Dr. Kayser must have noted her skepticism. He nodded. “Yes, your grandmother was the exception to that rule. She was one of the lucky ones. Her mind was as sharp the day she died as it was the day I met her. But you can’t count on being so lucky. So one thing I do at the very first patient visit is explain the process of cognitive deterioration. It’s important for people to understand the possibility that there will come a day when they’ll no longer be able to recognize their husbands and wives and children, drive a car, or balance a checkbook. They need to make their end of life decisions and plans while they still can. It’s not a pleasant topic, to be sure, but it’s a critical one.”
Sasha stared at the doctor’s ordinarily jovial face, now so somber. She didn’t envy him having those conversations. “Of course,” she said, prompting him to continue.
“I encourage all of my patients to consider enrolling in research studies to find causes and cures of early-onset dementia, Alzheimer’s disease, Parkinson’s disease, and other cognitive neuropathies—regardless of whether they’re exhibiting any signs of dementia or have family histories—”
“Hang on. Once a person’s showing signs of cognitive impairment, he or she doesn’t really have the capacity to enroll in a study. Right?”
He cut another piece of salmon into a small bite but left it on his plate. “You’re thinking of our friend, Mr. Craybill, aren’t you?”
“I am.” They’d worked together on behalf of a man who had been deemed incompetent by a local welfare agency. A finding of incapacitation meant he wasn’t competent to give consent.
“Well, as I understand it, there are different standards for consent under the law and under medical ethics. And it’s possible for a person to provide informed consent to medical research even if he’s already been diagnosed with diminished capacity. You’re right, though, that it’s much cleaner to enroll in a study when you have full possession of your faculties. In fact, that’s what your grandmother did.”
“She did?”
“Yes. She enrolled in a brain study where she spent 30 minutes a week doing puzzles and playing memory and spatial games online. She was in the control group.”
Sasha smiled. “I remember Nana’s games. She loved them. I didn’t realize they were part of a study; I thought she was just keeping her knives honed, as she liked to say.”
That elicited a small chuckle from the doctor. “Yes, it’s been shown that doing crossword puzzles and playing cognitive games does keep the brain healthy. Not everyone stays quite as sharp as she did, but, if nothing else, those activities will slow the decline. In any case, I make sure all my patients are aware of the various studies into the aging brain. I believe that’s one of my duties as someone who specializes in treating an aging population.”
“Sounds reasonable,” Sasha agreed.
He smiled again, a little sadly this time. “It does sound reasonable, doesn’t it? And I truly thought I was doing a service to my patients. Now, I’m not so sure.” His eyes dropped to the table.
“Why’s that?”
He looked up. “How much do you know about informed consent in the context of medical research?”
Sasha considered the question. “I’m not sure,” she admitted after a moment. “I have a pretty solid grasp of the concept of informed consent with regard to medical treatment. I know a physician is required to