Ed Note: I encourage you to read this article. Dementia will affect many of us as we age. What are your wishes for care if you are in dementia’s advanced stages? Dr. Hope Wechkin, the Medical Director at Evergreen Hospice spoke here at Skyline last year. Her research about minimal feeding in advanced dementia is cited in this NYT article. Allowing this type of comfort care is something that I personally support if that is the known wish of the patient. It is now part of my own advance directive.
Some consider the regular feeding of late-stage dementia patients to be nonnegotiable. Others see it as extending life unnecessarily. Thanks to Janet M. for submitting this article.
By Kate Raphael who has spent the past three years reporting on complex end-of-life issues.
Not long after high school, Linda Lawson had an experience that stuck with her. While working at a nursing home southeast of Seattle, she spoon-fed residents with advanced dementia — the stage when they cannot recognize loved ones, feed or bathe themselves, or speak more than several words.
From that point on, Ms. Lawson was clear: She never wanted to live that way.
“She believed in quality of life over quantity of life,” said Heidi Hendrickson, her daughter.
Four decades later, Ms. Lawson began repeating stories and losing her place mid-recipe. She’d pour herself a cup of coffee and forget where she’d left it — then pour herself two more mugs and forget those, too. She missed her grandchildren’s birthdays and forgot the way to her sister’s house.
In 2014, at age 61, Ms. Lawson was diagnosed with dementia. When she was 64, her family moved her into a memory care unit after she wandered into the woods, where the police found her with only one shoe on. Within a few years of that, Ms. Lawson could utter only a string of unintelligible sounds and had lost the ability to feed herself.
To keep her alive, her care team fed her three times a day. Nurses held her head up and spooned meals into her mouth — eggs and sausages, chicken and vegetables — sometimes waking her to do so. They were providing the very care Ms. Lawson had administered decades earlier and hoped never to receive.
At times, she bowed her head and pushed herself away from the table. Her husband, Stan Lawson, and Ms. Hendrickson took these signs to mean she did not want to eat. It was painful for the family to watch her slowly deteriorate, and they didn’t like seeing her force-fed.
Although Ms. Lawson had previously expressed her preference not to live with advanced dementia, she hadn’t formalized those wishes in a written advance directive, a document that would tell caregivers to withhold food and water once her dementia reached a late stage. Without this, the family wasn’t sure what they could do. But they knew Ms. Lawson’s dementia would progress until she died. They also knew she wouldn’t want to prolong that process.
The family began looking for an offramp. During a meeting with Ms. Lawson’s primary care doctor, they explained the situation: Ms. Lawson spent most of her time in a wheelchair, staring at her knees and often refusing food.
“We were never interested in prolonging her life just for the sake of prolonging her life,” Ms. Hendrickson remembered telling the doctor. “We wanted her to just be happy and comfortable.”
The doctor, who was not employed by the memory care unit, had a suggestion. She had recently read a paper that put forward a new approach, called “minimal comfort feeding,” in which providers stop scheduled feedings and instead offer dementia patients just enough food and liquid to ensure comfort, and only when the patient shows signs of hunger or thirst. The idea was that someone with advanced dementia with no interest in food, or limited interest, might be allowed to die once they begin to refuse enough hydration and calories to sustain them.
Limiting food and water has been used to hasten death in people dying at home since long before it had a formal name. But to accelerate decline this way for people with advanced dementia, whether their deaths are imminent or not, is uncomfortable territory for many.
For Ms. Lawson’s family, though, it felt right. By then, Ms. Lawson had lost almost 40 pounds and showed little interest in food or anything else. The standard approach, which involves intensive work to ensure a patient gets enough daily nourishment to survive, can keep late-stage dementia patients alive for several years. Minimal comfort feeding was a middle ground: honoring a person’s desire for an intentional and dignified death while also keeping them more comfortable than withholding all food and water might. (continued on Page 2 or here)