This piece was first published in Reuters Health. LMM President Randi Belisomo is a contributor.
The dysfunction and drama of the final months of Casey Kasem, a radio personality who died Sunday from complications of dementia, captured the interest of generations who listened over the years as he counted down the nation’s top pop.
But what Kasem did for four decades on the radio, says end-of-life planning expert Nancy Berlinger, is what he failed to do with his own family before dementia rendered him unable: communicate.
Kasem’s advance directive, stating he did “not desire any form of life-sustaining procedures, including nutrition and hydration,” assigned his daughter as surrogate healthcare decision-maker.
His daughter’s authority, however, was contested by her stepmother, Kasem’s wife. Allegations of kidnapping and starvation played out in courtrooms. Kasem’s wife performed a dramatic interpretation of a Biblical scene for news cameras, throwing raw meat in the street in exchange for her husband “to the wild rabid dogs”- her stepchildren.
Kasem’s situation was “a doozy of a case,” added Berlinger, lead author of The Hastings Center Guidelines, a framework for end-of-life decisions.
Kasem did take “two steps most people don’t,” Berlinger told Reuters Health. “He authorized a proxy decision-maker, and he gave specific information about treatment preferences.”
But, she pointed out, broadly-stated medical options in advance directives often require further considerations about real-life issues. “There may have been the assumption the document would have magically taken care of everything,” Berlinger said.
Kasem’s directive stated his wish for no life-sustaining treatment if it would “result in a mere biological existence, devoid of cognitive function.”
Berlinger said preferences should prompt patients and families to discuss points at which life loses individual meaning; examples include an inability to communicate or address hygiene. Those changes in condition can signal times when life-sustaining measures may be suspended. Without conversation, preferences may be unclear. “What does it mean to have ‘no cognitive function’?” Berlinger asks.
The way to answer that is to ask the patient directly, said Daniel Johnson, a Kaiser Permanente Care Management Institute palliative care specialist. “It’s not uncommon for people making decisions to do it alone,” Johnson told Reuters Health. “The problem is the best-laid plans depend not only on medical infrastructure, but infrastructure of the family.”