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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: placebos?
"What makes the same behavior acceptable, however well intended, when the person deceived is your elderly parent?

“I think it is not O.K. I don’t see that it’s respectful of their personhood,” said Stephen Post, a gerontologist at Stony Brook University and one of two ethicists I consulted. Most of the time, he said, “thoughtful and creative sons and daughters, though it may require patience, can be successful in these kinds of conversations with their parents” — without falling back on dishonesty."

This was in the article you posted Robin.

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Sat Oct 01, 2011 6:33 pm

Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: placebos?
But this was also in the article, Lynn:

Dementia changes the equation, for example. “If someone no longer has the cognitive capacity required to make informed decisions, I’d veer over to a standard of minimizing harm,” Dr. Post said. “Then, the norm is to alleviate suffering and optimize comfort and well-being.”

I think that every one of us caregivers knows that dementia changes things. It changes what our loved ones can do, and it changes how we behave toward them, all without changing the fact that we love them and want to do our best for them.

Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012

Sat Oct 01, 2011 10:09 pm

Joined: Thu Apr 21, 2011 9:07 pm
Posts: 248
Post Re: placebos?
This discussion is really interesting but also challenging. As a Quaker, I would feel extremely uncomfortable being untruthful with my mother, even as her cognitive function declines. That being said, I try pretty hard to be truthful in a way that is kind and loving, not hurtful. It is true that her needs pose an added burden that is hard on my father, for example, but there are blunt, unkind ways to say this, and gentler ways to note the burden, for example that we need to find ways to help him with all that he is trying to do.

I have had to remove some meds that she has taken as she felt she needed them, and to ask my dad to control others, as she is losing some ability to track them. So far she has accepted this pretty gracefully. My dad, whose caregiving skills sometimes fall short, has proven surprisingly good at redirecting (now that I think about it, he used to do this when we were kids.) For example, he keeps a little stash of sugar-free cough drops for when she feels her allergies are bothering her but should not run off and take a pill. I have provided some ginger ale and some ginger candies to try if her stomach feels unsettled. I think small mints - tic-tacs or whatever - could also be helpful. There is actually some evidence around that ginger and mint have some modest benefit for minor symptoms (not just placebo effect, but even there, some benefit exists.) So I would feel very comfortable telling her that the research shows some side effects from other stuff if not taken exactly as directed, but that these are things that work for some people, and she can decide for herself what seems to help most, and how much she needs. That would give her some autonomy in a safe way, and some chance that some of these would help a little, in combination with the prescribed stuff. (My mom has actually found the ginger ale or ginger to be quite effective when her stomach is upset.)

It's a tough situation, though, and if my mother were hostile or suspicious, it would be harder to do this. As Dr. Post says, the primary concern has to be safety. I want to make every conceivable effort to be respectful of her and to be honest as well as loving. There are competing principles here - like everyone in medical research, I've had to complete training in responsible conduct of research that includes the principles of autonomy and respect for every person. Added to that are core Quaker (Friends) testimonies on integrity. But the elephant in the room is trying to cope with the increasing loss in cognitive function and need for greater medical care. Sigh.


Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.

Tue Oct 04, 2011 2:28 pm
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