Several years ago, my clinical practice included covering an assisted living facility. I was called to evaluate a new resident who was complaining of chest pain. Mrs. Q had had heart attacks in the past; I wanted to send her to the local hospital for an electrocardiogram. Mrs. Q also told me that she wanted to go to the hospital. When I spoke with her grand-daughter, who was also her health care proxy, I was told:
“I think she has indigestion. She also has dementia, so she doesn’t know whether or not she wants to go to the hospital.”
After a lengthy conversation, the grand-daughter reluctantly agreed to meet Mrs. Q at the hospital. Turns out, Mrs. Q WAS having a heart attack and it was severe. She was admitted to the hospital.
A few days later, I called the granddaughter to check on Mrs. Q. The granddaughter was extremely angry and frustrated. Mrs. Q was not eating and a surgeon was pushing for a feeding tube. The granddaughter had walked into the room as the surgeon was speaking with Mrs. Q, who was upset and was telling the surgeon, “NO!”
“I asked my grandmother, ‘Do you want a feeding tube put in your stomach?’ She said, ‘No.’ So I told the surgeon to leave. Yes, I know she has dementia but she still knows what she wants and what she doesn’t want.”
I was floored. When Mrs. Q’s opinions differed from that of her grand-daughter, the grand-daughter quickly used the dementia diagnosis to ignore Mrs. Q’s choices. When Mrs. Q’s choices and opinions mirrored those of the grand-daughter, the grand-daughter believed that Mrs. Q had the capacity to make a decision.
I started paying more attention to how family members judged PwD’s decisional abilities. Sure enough, I began to see the same pattern. Family members who agreed with the PwD’s decision, or who benefited from the outcome, were likely to agree that the PwD had intact decisional capacity–they were able to make a sound decision even with the dementia going on. Family members who did not agree with PwD’s decision, or who felt that they were not going to benefit from the outcome, were likely to dismiss the PwD’s opinion on the grounds of dementia.
Here is the bottom line: the ability to make a decision is not an “on/off” light switch. It is more like a gradual dimmer and has to be evaluated for each individual.
Next blog: Different ways to look at decision-making ability in a person with dementia.