Casey Kasem’s End Of Life Drama: A Lesson For The Rest Of Us

Casey Kasem’s End Of Life Drama: A Lesson For The Rest Of Us

Posted on Tuesday, June 17th, 2014 at 8:24 am by lifemediamatters

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 at the 1989 Emmy Awards. Courtesy WikiMedia Commons.

Kasem at the 1989 Emmy Awards. Courtesy WikiMedia Commons.

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.”

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The End Of Life Lessons From Casey Kasem’s Family Feud

Posted on Monday, June 16th, 2014 at 11:42 am by lifemediamatters

This piece was first published in Voices in Bioethics. LMM President Randi Belisomo is a contributor.

American music fans have lost an icon. In recent weeks, the dysfunction and drama of the last days of Casey Kasem, a radio personality who gained fame counting down the country’s top pop, pervaded national headlines. Though family infighting among the famous was certain to capture the media’s interest, such conflict is sadly not unique in end-of-life cases such as his. Those who followed this saga stand to learn a much-needed framework of multi-party communication from what went wrong here.

The Case

Kasem, 82, suffered from Lewy body disease, a progressive dementia. In 2007, he signed papers extending power of attorney for his health care to his daughter Julie; the directive stated Kasem’s desire for no “life-sustaining procedures.” However, Julie, her sister Kerri, and their brother contended that Kasem’s wife since 1980, Jean, prevented them from visiting their father.

Kasem at the 1989 Emmy Awards. Courtesy WikiMedia Commons.

Kasem at the 1989 Emmy Awards. Courtesy WikiMedia Commons.

In May, Kerri won court approval to see Kasem. However, Jean expressed displeasure to reporters, playing an audio recording of a groaning man she maintained was her crying husband. Jean threw meat in the street, citing scripture as an ambulance took her husband away. “In the name of King David, I threw a piece of raw meat into the street in exchange for my husband to the wild rabid dogs.”

The drama continued in the courtroom, where Kerri won temporary conservatorship. But Kerri was unable to execute such responsibility without knowing his whereabouts; according to Kasem’s children, he was “isolated from his daughters, friends and other family” by his wife.

A judge later decided Kerri had the right to honor his directive to withhold food, hydration, and some medications, and she opted to transition him into hospice. Kasem’s children released a statement, quoting his advance directive:

“If the extension of my life would result in a mere biological existence, devoid of cognitive function, with no reasonable hope for normal functioning, then I do not desire any form of life-sustaining procedures, including nutrition and hydration.”

Jean opposed this decision and promised to pursue all legal options on her husband’s behalf. Her attorney maintained that Kasem was being “starved and cut off from medicine until he dies.”

What Went Wrong

Family conflicts regarding end-of-life decision-making are common; as such situations would be stressful for any family. That stress was amplified, in this case, by the media spotlight. Conflicts in such stressful times often arise because patients have not expressed their wishes and values regarding their health care, and patients also fail to appoint surrogate decision-makers.[1]

But in this case, the patient took proactive steps to ensure his care preferences would be clear. Kasem appointed a surrogate and documented his wish for no life-sustaining measures.

Though he completed paperwork, it seems that what Kasem did for a lifetime through our radios is what he failed to do within his own blended family: talk.

The facts suggest the strained relationship between Kasem’s wife and children was such for years, and this conflict was one he should have seen coming. Without such conversations explaining his wishes and reasons behind them, Kasem deferred conflict to a later day – and that day arrived.

Conflict was inherent upon completion of his advance directive, as Kasem’s surrogate and main caregiver were different individuals. Kasem was obligated to take that difference into account and ensure both parties understood the scope of their roles.

“You want to communicate this information,” says Nancy Berlinger, a lead author of the Hastings Center Guidelines.[2] “It’s a problem when a person makes an advance directive, and the only person who understands its context is their lawyer.”

Not only would Kasem’s surrogate be empowered with greater understanding of the values upon which his preferences rested, his family infrastructure would have likely been strengthened by such personal disclosures with all parties gathered.

“If you really want to look at how to prevent situations like this, you need to have these conversations with not only surrogates, but with other loved ones,” says Daniel Johnson, the National Clinical Lead for Palliative Care with Kaiser Permanente’s Care Management Institute. “When people take the time to have those informed discussions with family to ask the right questions to explore preferences with all important parties, you almost never see this.”

Kasem’s family would have received guidance about their roles from the patient himself, and perhaps they would also have understood exactly what he meant by his desire for no life-sustaining measures if “devoid of cognitive function.” While Kasem’s daughter believed he was in such a state, his wife’s vow to pursue legal action suggested she understood his condition differently. “There may have been the assumption that this document would have magically taken care of everything,” says Berlinger.

Unfortunately, end-of-life planning is often reduced to a “check-box” approach of medical options, with little understanding among patients and families as to what options actually denote. What does it mean to “lack cognitive function”? What is it to have a “mere biological existence”? More detail is required than loosely stated preferences, and the way to ascertain the meaning of those preferences is to have asked Kasem directly.

At their best, these conversations should expand beyond treatment preferences; discussions should explore considerations of real-life issues. Examples of these considerations are descriptions of what made Kasem’s life “worth living” – quality of life discussions to unravel what he valued. Was it the ability to communicate with loved ones? Perhaps the capacity to hear the music he played for generations of young Americans? The ability to maintain his own hygiene? We never knew, but his family should have.

When we read cases like Kasem’s, we are best served by allowing his tragedy to prompt our own end-of-life planning. Complete your advance directive, and if you already have – locate it. Discuss its contents with key loved ones, explain their roles, and let them know how they may best ensure your preferences are executed. We all can play disc jockey of our health care choices: don’t let your broadcast include dead air.

[1] Teno JM, Licks S, Lynn J, et. al. “Do advance directives provide instructions that direct care? SUPPORT Investigators.” Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Journal of the American Geriatrics Society [1997, 45(4):508-512].

[2] Berlinger, N., Jennings, B., and Wolf S.M. (2013) The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life: Revised and Expanded Second Edition. Oxford University Press, 2013

Facing Alzheimer’s Together

Posted on Saturday, March 8th, 2014 at 9:53 am by lifemediamatters


Carrie and her father, Henry George Jackson Jr.

Carrie Jackson spent the better part of her twenties caring for her ailing father who was suffering from severe Alzheimer’s disease. As her father’s primary caregiver, Carrie spent years watching his health decline and managing his care.

Henry George Jackson Jr. died in 2012, after nearly three years in hospice care. Carrie currently serves in the Memory Care unit at the Mather Pavilion in Evanston, IL, and she is on the Junior Board of the Alzheimer’s Association. She contributed an essay set to be published next month in Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias. 

Why did you choose to share your experiences of caring for your father?

Jackson: Alzheimer’s is the sixth leading cause of death in the United States, and no one knows that. It’s also severely underfunded.

People think it’s a memory disease, but it’s so much more. It’s language, it’s perception, it’s judgement, and it ultimately shuts down the entire body. End-stage Alzheimer’s is non-verbal, requiring total care, involving hallucinations and terrors, and people not being able to move their limbs. It’s a horrible, horrible disease.

Caring for dad really changed my life. I was in my mid-twenties and my friends were dating and going on job interviews and getting married and having kids, and I would always be like ‘I have to leave early to go to the hospital.’ I was his advocate, and he really didn’t have anyone else. So, I feel that I need to share.

What is the hardest part of caring for an individual suffering from Alzheimer’s or dementia?

Jackson: There becomes less and less that the person afflicted can do for themselves. Early-stage is really difficult because they argue with you and hide things. When I first started taking care of Dad, I looked at his check book and I found that he had not paid rent in three months. He was making donations to anyone who would solicit him, so donations to the Republicans, to the Democrats, and even to the Ross Perot Party.

I remember there was a big fight when I had to take his keys away after he failed his driving test for the third time. That was the only time we almost got into a physical altercation.

It was very hard telling him he could not go for walks by himself anymore, because he might not know how to get home. He also had some colorful words that he would use on a regular basis while on the streets of Evanston. He developed an irrational fear of sprinklers, so every time he saw one he would swear at it and at the person who put it there. People didn’t understand that it was the disease talking, not him.

Henry George Jackson Jr. died in 2012. He was a celebrated WWII veteran.

Henry George Jackson Jr. died in 2012. He was a decorated WWII veteran.

What advice do you have for adult children caring for seriously ill parents?

Jackson: You have to find support, you have to. It sounds so cliche. It helps to relate to someone going through a similar situation. Sometimes you don’t need an answer, you just want someone who will listen to you, someone you can vent to and be like ‘this sucks.’

After witnessing your father’s decline, do you fear Alzheimer’s?

Jackson: Alzheimer’s is my biggest nightmare. I am just absolutely scared of it.

At work we try to create moments of joy for those facing it. I do Alzheimer’s training for the new volunteers, and I tell them that a beautiful thing about the disease is that the person afflicted has no recollection of the past and the future doesn’t mean anything. If you say lunch is in 20 minutes, it doesn’t mean anything. They live and are truly engaged in the moment. I try to make that moment positive; the best thing we can do is make them happy.

Read an except from her essay here

Soup For The Soul: Living With Alzheimer’s

Posted on Thursday, March 6th, 2014 at 8:19 am by lifemediamatters

Carrie Jackson

Carrie and her father, Henry George Jackson Jr.

Life Matters Media was given permission to share an excerpt from Carrie Jackson’s essay set to appear in Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias. Jackson’s father died from Alzheimer’s disease in 2012, after nearly three years in hospice care. Jackson serves in the Memory Care unit at the Mather Pavilion in Evanston, IL, and on the Junior Board of the Alzheimer’s Association. Her essay recounts an afternoon visit to her father in his nursing home.

Chicken Soup

The Hand that Feeds
By Carrie Jackson

Music is one of my best ways to communicate with him so I start singing to him about Daisy and the bicycle built for two. My pitch and tone are way off, but I don’t care. It’s one of our favorite songs, and after a minute his eyes open. I ask him if he’s ever ridden a bicycle built for two. He says no, and I remind him how he used to put our dog Rusty in the grocery basket of his old bike and give him rides around Evanston. Finally, I get a smile. Then the moaning starts again.

I ask where it hurts: this time, it’s his shoulders. Jeff says he’s already had his pain medicine and we’re waiting for it to kick in. I ask Jeff if the hospice volunteer came today. He says yes; Dad says no. I believe Jeff. I put on some music. Ellington. We’ve changed the words a bit.

In our version, it’s “If you want to get from Sugar Hill to Harlem, you better take the A train.” We sit. His hands are soft. Softer than mine. His arms are splotched with purple and red marks. I take note of a few new bruises and cuts.

It’s dinnertime, and lately Dad has been taking his meals in his room. Jeff brings in some soup. Tomato barley. I stir it, taste it, and scald my tongue. After a few minutes it’s ready and I ask Dad to open his mouth. He does, takes a bite of soup and makes a horrible face but it stays mostly in his mouth. He chews for almost a minute and I wonder how that’s possible. I don’t see him swallow, but the chewing stops. I try with another spoonful, and another. Four more bites and he’s had enough. The bib is covered with spills. I wipe his mouth and nose. I haven’t seen him eat this much in months. Jeff brings in his plate.

Chicken and mashed potatoes. I know Jeff usually ends up feeding him Ensure, yogurt, and dessert—that seems to be all Dad will take these days. But I’m here, so we try for solid food and whole nutrition. And he eats. It surprises even me, but his eyes are closed and he’s reluctantly accepting every bite I bring to his mouth. Chew, chew, drool, chew, spit, moan, chew, swallow.

With each bite I feed him, I am reminded of what his doctors and the hospice team keep saying—as long as he has nutrition and is able to take food, he could survive for quite some time. And I think of the pain he is in. And I think of the loneliness in his eyes when I’m not there. And I wonder if what I’m doing is helping or hurting. He is chewing, swallowing, digesting. He is surviving. But is that what he wants? Is it worth it?”

Chicken Soup for the Soul: Living with Alzheimer’s & Other Dementias will be released April 22, 2014.

Diane Meier: Palliative Care Improves Quality Of Life, Reduces Medical Spending

Posted on Thursday, December 5th, 2013 at 5:21 pm by lifemediamatters

Half of older Americans visit emergency departments in their last month of life; 75 percent in last six months of life 

Palliative medicine helps improve quality of life and reduces unnecessary spending on emergency care for the chronically ill, said Dr. Diane Meier, director of the Center to Advance Palliative Care and a professor of medical ethics at the Icahn School of Medicine at Mount Sinai. Meier was the keynote speaker for “Palliative Care: A Major Paradigm for Care Coordination,” a conference presented by the Illinois Hospital Association in Naperville Thursday.

Mr. and Mrs. B

Mr. and Mrs. B, Courtesy IHA

Meier opened her lecture with the true story of an elderly couple struggling without palliative support:

Mr. B is an 88-year-old man suffering mild dementia and admitted to the hospital via the emergency department for management of back pain due to spinal stenosis and arthritis. His pain is an 8 on a scale of 10 upon admissionhe receives 5 grams of acetaminophen (Tylenol) each day. He has been admitted three times in two months for pain, weight loss, falls and altered mental status due to constipation. His 83-year-old wife is overwhelmed.

“He hates being in the hospital, but what could I do? The pain was terrible and I couldn’t reach the doctor. I couldn’t even move him myself, so I called the ambulance. It was the only thing I could do,” Mrs. B told Meier.

Meier pointed out to an audience of palliative care nurses and other medical professionals that among Medicare enrollees in the top spending quintile, nearly half have chronic conditions and functional limitations, just like Mr. B. Most of the costliest 5 percent of Medicare enrollees (61 percent) suffer from similar conditions. Nationally, spending on dementia-related services totaled nearly $215 billion in 2010.

“The emergency department has become the modern death ritual in the U.S.,” Meier added, because half of older Americans visit the emergency department in their last month of life, and 75 percent do so in their last six months.

According to Meier, a palliative care strategy with geriatric support could have helped Mr. and Mrs. B manage symptoms more adequately, and it could even have helped them avoid some unnecessary hospitalizations. “What we need to do is get out of our taxonomy silos, specialty driven silos,” Meier said. “Because of the concentration of risk and spending, palliative care principles and practices are central to improving quality and reducing cost.” The costs of Mr. B’s four most recent hospital visits totaled several hundred thousand dollars. But the Bs did not do anything wrong, Meier said, because the medical system encouraged their situation. What else could they do?

Meier suggested more home and community-based services to help reduce the number of seniors who find themselves in situations like the the couple– lacking an able-bodied caregiver and without an easily accessible medical provider. “Staying home is concordant with people’s goals, she said. “Based on 25 state reports, costs of home and community-based long term care services are less than one-third the cost of nursing home care.” For example, in a study published in the journal Health Affairs, researchers determined that simply having meals delivered to a senior’s home significantly reduced the need for a nursing home.

As HealthDay News reported: “If all 48 contiguous states increased by 1 percent the number of elderly who got meals delivered to their homes, it would prevent 1,722 people on Medicaid from needing nursing home care.” Still, the U.S. lags behind every other industrialized nation when it comes to the ratio of social to health service expenditures.

Meier Graph

Hope Brown, a nurse with the Carle Foundation Hospital in Urbana, IL, said she appreciated Meier’s attention to the costs of care and the need for social support. “It happens every day, situations like the Bs. We definitely need to get people into social services earlier, even meal delivery,” she added.

Overall, Meier urged medical professionals to “treat the person, not the disease.” Since most patients prefer to live at home and remain independent, (76 percent rank “independence” as most important, followed by pain and symptom relief, and staying alive last) palliative medicine should reflect those wishes.

Diane Meier, Courtesy WikiMedia Commons

Diane Meier, Courtesy WikiMedia Commons

View “Palliative Care in the Mainstream: Stepping Up to the Plate”