Her family brought her to the hospital because she had a high fever and was more confused than usual. I knew that she was near her end.
I asked her daughter, son-in-law and grandson what I always ask families managing a relative’s final days:
“Do you want us to do procedures that may well be painful and will not improve her quality of life? Or do you want us to let her go in peace?”
Faced with this choice, some families allow nature to run its course. They decline medical interventions beyond comfort care (such as pain medicine and oxygen). Families that understand that doctors can neither cure nor reverse dementia are more likely to choose this.
Other families consider it imperative to opt for all possible medical interventions. Unfortunately, this includes invasive procedures that cause transient or lasting discomfort. Meanwhile, these procedures cannot improve dementia yet can accelerate it.
In my experience, most families choose the second option. That includes my patient’s family, who asked that I “do everything” possible to treat her.
So I did. I gave her intravenous antibiotics. We inserted a urinary catheter that caused her further discomfort. Then I gave her a painful stick in the neck with a thick needle.
We didn’t stop there. Eventually, her heart stopped. I gave her CPR that broke some of her ribs. Then the nurses and I forced a breathing tube down her throat.
Imagine how uncomfortable and frightening this was for my patient, who didn’t know where or who she was but still felt pain and fear. Unfortunately, her dementia was too advanced for her to object. So I had to adhere to her family’s well-meaning yet heartbreaking wishes.
None of this helped my patient. She died within a day. Had her family chosen “comfort care only,” she could have spent her last moments peacefully surrounded by loved ones. Instead, she died in anxious misery.
And those procedures were so rough on her frail body that she may have even lived longer without them.
Even if advanced dementia patients survive such ordeals, they suffer difficult recoveries in combination with existing maladies. For others, invasive procedures permanently deepen dementia-related hardships without any chance for a meaningful recovery.
Those who agree can avoid my patient’s fate by documenting, executing and fortifying their end-of-life wishes. Advance directives are the tool to do so. They are yes-or-no documents outlining end-of-life health-care wishes, such as preferences for comfort care only. There are even sites that help write and access such directives at unexpected times.
But that is not enough. Put the directive on a refrigerator and videotape an explanation of those wishes. Assign a “proxy” (usually a spouse or child) who will aggressively enforce your wishes. Then share these decisions with family and doctors annually.
If my patient had taken these steps, she could have died in peace. Empower yourself with a directive. And tell anyone who’s facing the heartbreaking realities of dementia in their family to do the same. There’s no need for doctors to torture anyone.