The dysfunction and drama of the final months of Casey Kasem, a radio personality who died 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.
Allegations of kidnapping
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.
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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 Centre 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.
No cognitive function
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."
Johnson gathers key loved ones involved in patient care, so designated surrogates and those not selected understand reasons and values behind preferences. "When people take time to have discussions with family to ask the right questions with all important parties, you almost never see this," he said.
Deferring the problem
Such dialogues are particularly vital in families like Kasem's – involving second marriages and stepchildren, says elder law and estate planning attorney Michael Amoruso. "It's not just blending family that is important, but ensuring relationships maintain themselves during stressful times," he says. "If you don't discuss, you are deferring the problem to a later day."
That later day came for the Kasem clan, and it arrives even for the most "functional" of families, said Robert Fleming, an attorney and author of The Elder Law Answer Book. "I can drudge up one similarly emotionally fraught case for every year in 38 years of practice," he told Reuters Health.
Read: Family often spots dementia first
Conflict often arises between adult daughters – common choices, he says, for surrogate decision-makers. "The oldest blows into town and says 'I can't believe Mom ever meant that, and if I had talked to her she wouldn't have done that,'" Fleming offers as a common scenario. "She thinks Mom assigned the youngest daughter because she stuck a form in front of her when she was over having coffee."
These conversations should be initiated periodically by every responsible adult, Fleming said. He suggests a time-frame of every five years, as well as a dialogue to accompany every life change- whether it be in health status or a new spouse.
"There are some levels of family dysfunction that cannot be taken care of, but it certainly would have helped if Kasem had clearly expressed his preferences in a document shared in advance," Fleming said.
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