Sunday, 22 June 2014
This weekend, Casey Kasem's family will gather at a private
memorial service to honor the legendary radio host, who died on Father's Day at
age 82.
"The
world will miss Casey Kasem, an incredible talent and humanitarian," his
children Kerri, Mike, and Julie Kasem said in a statement. "We will miss
our dad."
Kasem
dominated the radio world from 1970 until his retirement in 2009 and leaves a
powerful legacy. Yet at the end of his life, Kasem's name dominated headlines
for a different reason: a bitter legal battle as his family debated the best
health care for the ailing radio host. A rift that dated back years between his
wife, Jean, and children from his first marriage deepened as Kasem's health
deteriorated.
Kasem was
incorrectly diagnosed with Parkinson's disease in 2007, a diagnosis that was
later changed to a progressive brain disorder called Lewy body dementia.
Lewy body
dementia is the most misdiagnosed form of dementia,according to the Lewy Body
Dementia Association. Like Alzheimer's, confusion and memory loss are present,
but visual hallucinations, severe sleep disruptions, fluctuating alertness and
problems with movement are also symptoms.
As Kasem
lived out his final days, the family feuded over the best care options for him.
Kasem's children said they were complying with their father's wishes to die
comfortably and peacefully surrounded by family and friends, while his wife
claimed they were ceding care and prematurely ending Kasem's life.
Casey
Kasem's family feud
"My
husband's a fighter! He's an American treasure. He would have never, ever
wanted this," Jean Kasem tearfully exclaimed to CNN shortly before Kasem's
death.
The
family battle over Kasem's end-of-life care was magnified by the media. Yet the
story of families facing difficult decisions at the end of a loved one's life
is one that millions of Americans can relate to.
"If
you take away the fact that he has a net worth of $80 million, he represents a
case that is a very typical," said Ira Wiesner, an elder law attorney
based in Sarasota, Florida. "I think we're going to see more of these
cases hit the limelight at all levels."
Baby
boomers are turning 65 at the rate of 10,000 per day, according to the Pew
Research Center, a trend that's expected to continue for the next 16 years.
People 65 and older are expected to make up 20% of the total U.S. population by
2050, according to the National Center on Elder Abuse.
"We're
in the midst of a longevity revolution," said Ellen Goodman, co-founder
and director of The Conversation Project. "We now live 30 years
longer than we did 100 years ago. Sixty is not the new 50; 60 is the caregiver
of the 85 year old."
Eighty-five-year-olds
today are driving, playing tennis and going to book clubs. Yet extended life
spans require resources, and the responsibility of caring for loved ones with
dementia or diminishing physical capabilities can weigh on families --
emotionally and financially.
Overwhelming
burden, cost of Alzheimer's to triple
"We
have to make decisions about how we want to end our lives," Goodman said.
"Do it early. It's always too soon until it's too late. Don't wait for a
diagnosis; don't wait for until someone is in the ER."
It's
important for seniors to designate a health care agent, also known as a proxy
or surrogate, to speak on their behalf when they become ill or cognitively
impaired. While a spouse or child may seem like the obvious choice, sometimes a
health care agent more removed from the situation is emotionally better suited
for making tough choices.
It's
essential that the proxy have a strong backbone and be willing to fight for the
elderly person's wishes.
"I
see it all the time, the edginess that occurs when somebody starts becoming
incapacitated," Wiesner said. "Issues of power come to the forefront,
internal struggles between family members rise to the top, and it all
explodes."
Seniors
should write down specific instructions about their end-of-life care and
identify the designated health care agent in a document called a durable
power of attorney for health care. The written record ultimately becomes a gift
to family members, since it eliminates the guessing game.
It's also
important for you to be aware of your state's medical laws. Many states have a
pecking order for designating a health care agent: spouse, children, parents,
then siblings. However, some go by different rules; for instance, Wisconsin
will not let anyone step in to make decisions if a health care agent isn't
designated, while West Virginia allows the patient's tending physician to determine
who will be the best decision-maker.
"I've
never heard anybody say, 'I want to end my life with a feeding tube and on a
respirator or ventilator,' but that's what happens to a lot of people if they
haven't expressed their wishes, given the medical system," Goodman said.
Dying:
What no one wants to talk about
Beyond
medicine, it's essential to also think about other care decisions, such as
whether you would prefer hospice care or to be moved back home for your final
days. The most imperative thing for families to remember, Goodman says, is that
even if there are varying religious views amongst family members, the specific
wishes of the ailing elderly individual must be respected.
"A
lot of families can relate to the chaos and confusion. When you don't hear the
voice of the person you love in your ear, you always doubt whether you've done
the right thing," Goodman said.
The
Conversation Project seeks to eliminate the stigma surrounding conversations
about death and encourage families to have early discussions about end-of-life
decisions. A recent survey by The Conversation Project indicated that 90% of
seniors thought it was important to plan their end-of-life decisions, but only
30% of those people actually had open discussions about facing death.
"Too
many people are not dying in ways they choose; too many are experiencing hard
deaths," Goodman said. "The difference between a good death or a hard
death is whether they had sat down at kitchen table, talked about values and
talked about how they wanted to live at end of life."
"Casey
Kasem is a celebrity, but this is an everyday American story."
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