Advocacy Groups

Jump-Starting Hard Conversations As The End Nears

Kellen Browning  Rachel Bluth Healthcare Blog by Kellen Browning and Kaiser Health News


Frederick Bannon Jr. was by his mother’s side in intensive care as she fought a rare form of muscle cancer in late 2014. She was heavily sedated, but he felt confident making medical decisions for her, thanks to his family’s advance care planning.

Bannon had difficult end-of-life-care conversations with his parentsboth in their mid-80s, before his mother’s diagnosis. During those  discussions, held at Bannon’s urging, his parents decided how far they wanted doctors to go to keep them alive should they become too sick to communicate. Bannon then documented their wishes.

Frederick Bannon’s parents, Frederick Sr. and Elvira (Courtesy of the Bannon family)

“That helped so much, because you knew at least one thing was going to be taken care of,” said Bannon65, of San Francisco, whose mother survived and lives with Bannon’s father in Wethersfield, Conn.

Most Americans avoid end-of-life decisions, although some people may be more likely to make them if a doctor or social worker starts the discussion. In California, the state’s attorney general’s office offers an end-of-life planning checklist on its website. In the past few years, other websites have encouraged those conversations, with their own suggestions on how to get started.

Rebecca Sudore, a geriatrician at the University of California-San Francisco, created, which provides step-by-step instructions and video stories to help people navigate the care they want at the end of their lives. She built the site in 2013 for families unsure how to broach sensitive questions. In a study published in JAMA Internal Medicine in May, she and other researchers found that the website — combined with the use of an “advance directive” form — prompted participants to plan ahead.

The website is free, and Sudore makes no money from it. She said she created it as a public service with the idea of studying its effectiveness.

The site guides patients in drafting a “summary of wishes” to help families and other caregivers decide whether their loved ones should undergo life-sustaining medical interventions such as feeding tubes and ventilators.

For the study, Sudore approached 414 San Francisco-area military veterans — including Bannon — who were split into two groups: One received a simplified advance directive, a legal document allowing a patient to consent to or decline specific medical procedures well before they occur. The other group was given the directive but also was pointed to, which is publicly available in English and Spanish.

Almost none of the participants had documented their wishes in the six months before the study. But nine months after the study began, 35 percent of those who received access to the website and the directive had updated their medical record, while 25 percent who received just the directive had done so.

Sudore sees stark contrasts between “deer-in-headlights” families who arrive at the intensive care unit with outdated directives and no specified plans, and those who have had ongoing conversations.

Bannon, a Vietnam War veteran, X-ray technician and colon cancer survivor, praised the site’s simplicity and accessibility and said it persuaded him and his parents to document their wishes before his mother’s cancer treatment.

Frederick Bannon Jr. (Courtesy of the Bannon family)

The website appears to be a useful tool, according to Dr. VJ Periyakoil, associate professor of medicine and director of Stanford University’s Palliative Care Education and Training Program. (Periyakoil is friends with the UCSF researchers but was not involved in the study.)

“Clinicians are so hard-pressed for time, so when the patients get activated by web-based tools, I think it’s a wonderful thing,” she said.

Seventy percent of Americans lack an advance care plan, according to the U.S. Centers for Disease Control and Prevention, and lack of preparation can have undesirable effects, Periyakoil said.

Family members who have not gone through this process sometimes choose life-sustaining options for their loved ones that may cause unnecessary suffering, Periyakoil said.

Children “might be more lured by, ‘I really love Mom. I can’t allow anything bad to happen to her and I want to keep doing whatever I can to extend her life,’” she said. “And by doing so, they might end up subjecting Mom or Dad to a lot of measures that are ineffective and burdensome.”

Periyakoil, who has studied barriers to end-of-life care among eight ethnic groups, does not believe there’s a single solution to encouraging end-of-life conversations, because different groups have different approaches to discussing death. She suggested the website might be one of many strategies to consider. has logged more than 1.7 million page views and 85,000 users in 115 countries since its 2013 launch.

For Bannon, the site worked. “Now [my parents are] even more relaxed, because when they do face their final exit, everything’s in place,” he said.

This story was produced by Kaiser Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation, coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation, and coverage of aging and long-term care issues is supported by The SCAN Foundation.


For more KHN coverage of aging, and for more information on Kaiser Health News, please visit our web page at:

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Price Transparency In Medicine Faces Stiff Opposition — From Hospitals And Doctors

 Rachel Bluth Healthcare Blog by  Rachel Bluth and Kaiser Health News


COLUMBUS, Ohio — Two years after it passed unanimously in Ohio’s state Legislature, a law meant to inform patients what health care procedures will cost is in a state of suspended animation.

One of the most stringent in a group of similar state laws being proposed across the country, Ohio’s Healthcare Price Transparency Law stipulated that providers had to give patients a “good faith” estimate of what non-emergency services would cost individuals after insurance before they commenced treatment.

But the law didn’t go into force on Jan. 1 as scheduled. And its troubled odyssey illustrates the political and business forces opposing a common-sense but controversial solution to rein in high health care costs for patients: Let patients see prices.

Many patient advocates say such transparency would be helpful for patients, allowing them to shop around for some services to hold down out-of-pocket costs, as well as adjust their household budgets for upcoming health-related outlays at a time of high-deductible plans.

At the Ohio Statehouse, the law’s greatest champion in state government has been Rep. Jim Butler, a Republican and former Navy fighter pilot whose wife is a physician. He authored the legislation and has beat the drum for it since he got the idea in 2013, as he waited for a garage mechanic to repair his car and absorbed the shop’s posted rates for brake jobs, oil changes and tuneups.

Opposition has been formidable, led by the goliath Ohio Hospital Association. It has filed a court injunction that is currently delaying enactment, peppered local news media with editorials, and lobbied Republican Gov. John Kasich, who has eliminated funding that would allow implementation from the latest state budget.

Joining the hospital association in its legal action are a wide range of provider groups including the Ohio State Medical Association, the Ohio Psychological Association, the Ohio Physical Therapy Association, and the Ohio chapters of the American Academy of Pediatrics, the American College of Surgeons, and the American Osteopathic Association.

These groups say that the law, which applies only to elective procedures, is too broad and that forcing providers to create estimates before procedures would slow down patient care. “The only way to even try to comply with the law is to delay care to patients in order to track down information from insurance companies, who may or may not provide the requested information,” wrote Mike Abrams, the president and CEO of the Ohio Hospital Association, in an op-ed in The Columbus Dispatch in January.

But Jerry Friedman, a retired health policy adviser for the Ohio State University Wexner Medical Center, said the opposition doesn’t stem from genuine concern about patients but from a desire to keep the secret rates that providers have negotiated with insurers under wraps. Transparency would mean explaining to consumers why the hospital charged them $1,000 for a test, he said, adding that providers “don’t want to expose this house of cards they’ve built between hospital physician industry and the insurance industry.”

Ohio State Rep. Jim Butler (Chris Stewart/Courtesy of the Dayton Daily News)

Said Butler on his quest to see the law enacted: “The health care industry has a lot of political power and lots of money. It’s hard to fight on behalf of people against this kind of force.”

The law’s next test will come in August, when the first court hearing on the association’s lawsuit is scheduled. The Kasich administration said it couldn’t comment on the law because of the pending litigation.

Greater price transparency has been a popular policy prescription for America’s high health costs, especially at a time when many patients have high-deductible insurance plans and face larger copayments. Upfront estimates exist in other countries, such as Australia and, for patients facing out-of-pocket expenses, in France.

In Massachusetts, patients can get an estimate within two days of admission if they ask for it. Nebraska requires hospitals and surgical centers to provide a list of the average charges for services. New Hampshire has a website where consumers can compare costs.

Hospitals and doctors often oppose such measures. The American Hospital Association’s position is that health plans — not hospitals — are responsible for telling insured patients about their out-of-pocket costs, according to its website.

Aimee Winteregg, 35, of Troy, Ohio, said she would have liked such information before five miscarriages in four years left her buried in unexpected medical bills. She and her husband became first-time parents in November. Though they are well insured, tests and treatment cost the couple $4,000 out-of-pocket, demanded in bills that were sometimes no more descriptive than for “medical service.”

“We don’t want to deal with this, especially when the doctor tells you stress is bad for the pregnancy,” her husband, J.D., said. But imposing greater transparency has been controversial in both the medical industry and among some health care researchers, who say it puts patients in an untenable position.

The transparency law “was written by someone thinking about health care as a TV, and not as health care,” said Sandra Tanenbaum, a professor of health services management and policy at The Ohio State University College of Public Health.

She said people could not shop for procedures as they would for a TV or car repairs, since they often lack information on the quality of doctors and hospitals, and make health care decisions based on much more than cost.

Consumers are more likely to base their decisions on their doctors’ advice, not on cost alone, according to a report from the Health Policy Institute of Ohio.

Only around 10 percent of health care costs are even “shoppable” expenses — procedures that can be scheduled in advance, like an MRI or elective surgery — according to the HPIO.

Regardless, Butler maintains, the health care industry can give consumers better information upfront. “If you really want patients to be empowered, they really need the information,” he said.

In support of such access, Butler has written letters to the Ohio Hospital Association, the Ohio attorney general and the Dayton Daily News, all in defense of the transparency law.

The Ohio Hospital Association, along with seven other Ohio health organizations, went to court last December to block the law, a month before it was supposed to take effect.

Butler said Gov. Kasich’s administration is helping the hospital association stall by not writing regulations, eliminating funding for the law in the state budget, and declining to meet with Butler to discuss it.

State Rep. Michael Henne, also a Republican, has worked with Butler in the Ohio General Assembly on the transparency law. He called Butler a “driver” on the law, noting: “It’s frustrating. You don’t realize how much [influence] special interests have in the process.”

For more KHN coverage of aging, and for more information on Kaiser Health News, please visit our web page at:

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Some Dementia Can Be Treated, But My Mother Waited 10 Years For A Diagnosis Healthcare Blog by Roni Caryn Rabin and Kaiser Health News


When my mother, Pauline, was 70, she lost her sense of balance. She started walking with an odd shuffling gait, taking short steps and barely lifting her feet off the ground. She often took my hand, holding it and squeezing my fingers.


Pauline Rabin with granddaughters Emma and Aviva Rabin-Court near the C&O Canal in Great Falls, Md. (Photo courtesy of Roni Rabin).


Her decline was precipitous. She fell repeatedly. She stopped driving and she could no longer ride her bike in a straight line along the C& O Canal. The woman who taught me the sidestroke couldn’t even stand in the shallow end of the pool. “I feel like I’m drowning,” she’d say.

A retired psychiatrist, my mother had numerous advantages — education, resources and insurance — but still, getting the right diagnosis took nearly 10 years. Each expert saw the problem through the narrow prism of their own specialty. Surgeons recommended surgery. Neurologists screened for common incurable conditions.

The answer was under their noses, in my mother’s hunches and her family history. But it took a long time before someone connected the dots. My mother was using a walker by the time she was told she had a rare condition that causes gait problems and cognitive loss, and is one of the few treatable forms of dementia.

“This should be one of the first things physicians look for in an older person,” my mother said recently. “You can actually do something about it.”

‘Did Mom Tell You? She Fell Again.’

The falls started in 2004. My mother fell in the bedroom of her Bethesda home. She fell in the airport while returning from a trip to see my sister. Sometimes she told me, and sometimes a sibling would call or e-mail. “Did Mom tell you? She fell again.”

Millions of older adults fall every year, but it was my mother’s uneven gait that tripped her up. She was unsteady on her feet; the slightest incline threw her off stride. Sometimes she quickened her pace involuntarily. Sometimes she bent over before straightening back up.

She went to doctor after doctor. “I want a diagnosis,” she would say before the next appointment with a neurologist, geriatrician, urologist or orthopedist. “I’m convinced this is something organic — that it has an underlying biological cause.”

A series of neurological evaluations ruled out the obvious suspects: My mother didn’t have the tremor typical of Parkinson’s, a devastating, progressive disorder, and she did well on cognitive tests, so it wasn’t Alzheimer’s disease.

Next, my mother went to see an orthopedic surgeon. He said she had stenosis, or a narrowing of the open spaces of the spine, and recommended surgery. She underwent a complicated, potentially dangerous back operation, and she seemed to be walking more smoothly afterward — for a few months.

As time went by, though, she developed other symptoms. Perhaps because she wasn’t exercising, her blood pressure went up. She gained weight and was at risk for diabetes. She developed a persistent hacking cough, but no one could identify the cause since her lungs were clear.

She was also having trouble getting to the bathroom on time, so she had more surgery, this time to implant mesh designed to alleviate urinary incontinence. Medicare and private insurance picked up the tab, but once again the relief was temporary.

The bad news was that it had taken so long to get the diagnosis that some of the damage may be irreversible.

My mother had always been terrified she would lose her memory. Her mother, Helen, who died in 1988, had spent the last five years of her life bedridden, unable to walk and oblivious to her surroundings. Any physician who took a careful family history would know that my mother suspected Helen’s dementia was caused by normal pressure hydrocephalus, or NPH, a buildup of cerebrospinal fluid in the brain that causes difficulty walking, urinary incontinence and cognitive loss, in that order.

When my mother met with specialists, she floated the idea that she might have NPH. In some ways, she hoped that was the diagnosis, because it often can be treated by implanting a small shunt into the brain to drain off the excess fluid.

Around this time, another neurological evaluation that included MRI scans of the brain revealed that my mother had enlarged ventricles. Ventricles are the cavities in the brain that are filled with cerebrospinal fluid, and their enlargement suggested any number of conditions, including brain atrophy and Parkinson’s. They are also considered a red flag for NPH.

A neurologist in Bethesda had briefly considered NPH. He had done a spinal tap to withdraw a small amount of cerebrospinal fluid but ruled out the diagnosis when he saw no immediate improvement in my mother’s gait. But he may not have withdrawn enough fluid to see a change, experts told me.

One feature of NPH is passivity. My mother was forgetful at times, but what was more striking was her lack of initiative.  She didn’t make plans as she used to. She’d start a knitting project and drop it. She may have been less aggressive than normal about pursuing her hunch about NPH being the source of her trouble. “One doctor told me, ‘This doesn’t run in families,’ ” she said.

‘We Believe It’s Overhyped’

Two years ago, doctors finally got it right.

My mother and stepfather had gone to visit friends in Gainesville, Fla. They urged her to make an appointment at the University of Florida’s Center for Movement Disorders and Neurorestoration.  Doctors there suspected NPH as soon as they saw my mother walk across the room. They recognized the shuffling gait and what they call “magnetic” footsteps that seemed glued to the floor.

They sent her for additional tests, including a spinal tap to see if her walking improved after a large amount of cerebrospinal fluid was withdrawn — it did — and another imaging scan to rule out the possibility that the buildup was caused by an obstruction, such as a tumor.


Pauline Rabin surrounded by her grandchildren at her 80th birthday after her operation (Rabin Family Photo).

Inserting a shunt is a dangerous operation: A thin tube is implanted in the brain to drain excess cerebrospinal fluid and release it into the abdomen.

“For some patients, [the surgery] can be life-changing,” said Michael Okun of the movement disorders center. But it is a high-risk operation, he said, especially in the elderly.  About a third of patients who have shunt surgery experience a complication, such as an infection or a brain bleed that can lead to brain damage or death. “You have to be careful. A lot of people are shunted inappropriately,” Okun said.

Why was my mother’s diagnosis missed by so many, and for so long?

A friend whose mother was diagnosed with NPH by a gerontologist early on in the course of her disease told me the doctor made the diagnosis after seeing a story about NPH on “60 Minutes.”

But for many physicians, “the possibility just doesn’t come to mind,” said Michael Williams, who serves on the medical advisory board of the Hydrocephalus Association, an advocacy organization, because it’s so rare.

Physicians are trained to search for the most obvious, common conditions first. Although NPH was first described in 1965 and is taught in medical schools, the diagnosis is controversial, even contentious. There is no definitive test, and some experts have questioned whether it is a real syndrome. Studies of patients who had shunts inserted have had mixed results, and randomized controlled studies will probably never be done, both for logistical and ethical reasons.

Daniele Rigamonti, a neurosurgeon at Johns Hopkins School of Medicine who wrote and edited a textbook about NPH, is convinced that it is underdiagnosed and that many nursing home residents who seem to have Alzheimer’s or Parkinsons’ dementia may actually have NPH.  He says it’s important to diagnose it early, before the buildup of pressure on the brain causes damage as the enlarged ventricles displace and compress adjacent brain tissue.

“To wait for the full triad [of symptoms] is foolish,” he said, referring to the three symptoms that define NPH: gait disturbance, incontinence and dementia. Even though it is a challenge to diagnose NPH when the only symptom is gait impairment, he said, “you don’t wait for a cancer to metastasize and spread to the brain before you recognize it.”

Bryan Klassen, an assistant professor of neurology at Mayo Clinic, is not convinced. He contends NPH is extremely rare and is not being missed.

“We believe it’s overhyped,” he said, adding that the surgery is dangerous, “and a lot of the time the results are underwhelming.”

Lasting Improvements

My mother had shunt surgery two years ago, when she was 79 years old. The surgery lasted less than an hour and a half. I’m only writing about it now because surgical interventions, like sugar pills, can have placebo effects that don’t last very long. But I noticed a change immediately.

My mother went home the day after surgery, and my stepfather brought flowers. And then my mother did something that she hadn’t done in years: She walked over to the kitchen counter, gently removed the flowers from the paper wrapping, clipped and cut the stems and arranged them in a vase in a striking arrangement. She had always had a flair for flower arranging but hadn’t seemed interested for quite a while.

Today she is dramatically improved; her walking, memory and concentration are all better. Still, I can’t help wondering: Did the delayed diagnosis result in some permanent cognitive impairment?

She’s much less passive and can actually be very persistent. She asked me to write this article to inform people about NPH. “Have you written the article yet?” she asked recently when I called. “Please, write it.”

KHN’s coverage of aging and long term care issues is supported in part by a grant from The SCAN Foundation.


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Great Fall

Awake, And Safe, All Night Despite Dementia Healthcare Blog by Rachel Gotbaum and Kaiser Health News


In her Manhattan apartment, Josephina Deltejo is trying to coax her 84-year-old mother Brunhilda Ortiz to get ready to leave the house. As she does most nights, Deltejo makes up a story to get her mother, who has dementia, to cooperate.

In Spanish, Deltejo asks her mother if she would rather go to Miami or the Dominican Republic. “She says she wants to go to the Dominican Republic,” Deltejo translates, and then she helps the older woman gather her things and go downstairs to a waiting van. The driver will bring her mother to the Elderserve At Night program at the Hebrew Home At Riverdale in the Bronx. It’s a kind of day camp–but at night, for people like Ortiz who suffer from Alzheimer’s disease.

Brunhilde Ortiz’s condition improved dramatically, her daughter said, after the 84-year-old started attending a “daycare at night” Alzheimer’s program at the Hebrew Home at Riverdale in the Bronx, N.Y. Ortiz died of heart failure shortly after this story was produced. (Wendy Steinberg/Hebrew Home)

Brunhilde Ortiz’s condition improved dramatically, her daughter said, after the 84-year-old started attending a “daycare at night” Alzheimer’s program at the Hebrew Home at Riverdale in the Bronx, N.Y. Ortiz died of heart failure a few months after this story was reported. (Wendy Steinberg/Hebrew Home)

Deltejo says her mother was once a proud, hard-working immigrant who raised four children on her own, but she has changed. “Her memory has been totally lost. She’s very disoriented,” Deltejo says. “She doesn’t communicate at all.”

For months, Ortiz would sleep during the day and be up much of the night wandering around the apartment. Her daughter was too afraid to sleep—afraid her mother might fall and hurt herself or even try to leave the apartment.

“She wanted to sweep the floor. She wanted to watch TV. She wanted to clean the bathroom,” Deltejo remembers. “She wanted to go out. This is at one, two o’clock in the morning.”

But now Deltejo is finally getting some sleep – and her mother is being well cared for along with about 40 other clients seven nights a week. Activities may include arts and crafts, cooking, yoga or Zumba, and even live performances. On the night we visited, Juan Ortega played American and Spanish favorites on his synthesizer.

Though it looks like entertainment, each activity has a therapeutic benefit for memory-compromised people, says Deborah Messina, who runs the overnight program. She described a common problem among dementia patients known as “sundowning.” It is thought to affect about 20 percent of Alzheimer’s patients.

“Their day is our night and vice versa, and they are confused about it,” Messina says. “It is usually at dusk where an agitation comes, a confusion comes.”

Many people with dementia are more alert at night than they are all day – just when their caregivers need to sleep. Rather than try to alter this mismatch, Elderserve At Night embraces it.

The program is the brainchild of David Pomeranz, the executive director of the Hebrew Home, who opened the program in 1996. He says the idea came to him after hearing heartbreaking stories from struggling families.

“People were sleeping in front of doorways because they were concerned that mom or dad would wander out of the house,” Pomeranz says.

Those families desperately needed a safe place for their loved ones at night — and a decent night’s sleep. And the Hebrew Home set out to meet that need.

It’s a similar philosophy – to meet clients’ needs wherever they may be – held by the therapists and social workers who staff Elderserve now. “Here, their behaviors are normalized,” Pomeranz explains. “Everything is OK. Activities are structured for them to be successful. They eat, they relax — they can be themselves. To us is this is who they are. We’re not the family members who are dealing with that incredible loss of seeing someone who was and isn’t any more.”

The program is covered by some private insurers and by New York Medicaid, the federal-state program for poor and disabled people. To the extent that it can keep people out of nursing homes, it can save money.

Medicaid pays a typical nursing home in New York about $320 per day versus $200 for the overnight program. But so far, few if any other overnight programs exist solely for people with dementia. Pomeranz thinks the idea hasn’t caught on with other nursing homes because it is difficult to find staff who are willing to work the overnight shift. It was also important to get Medicaid and other insurers to reimburse for the program, and that funding has not been pursued in every state.

Elderserve At Night tries to serve its clients even as their conditions worsen. Next door to the room where Ortiz and others are dancing and enjoying the live music, it feels like another universe. The music is soft, the lights are low and a subtle scent of lavender is in the air. People with more advanced disease spend the evening here. Some are sitting around a table, each with a caseworker, who helps them work with blocks and basic puzzles.

Several other people are slumped in wheelchairs, getting hand massages from the social workers. Though their faces look expressionless, they seem calm. For people with advanced dementia who might otherwise become agitated at night, this room is a sanctuary, says Messina.

“We’re engaging them on their level. And being able to do that might be through touch, it might be through sound, it might be through smell,” she says. “It works for them. It gives them a sense of serenity.”

Brunhilde Ortiz stands tall in the center flanked by her siblings on a visit to the Domincan Republic decades ago. (Courtesy Josephina Deltejo)

Brunhilde Ortiz stands tall in the center flanked by her siblings on a visit to the Domincan Republic decades ago. (Courtesy Josephina Deltejo)

When the sun comes up tomorrow, all the clients will be given breakfast and everyone here will return home. Ortiz will take the van back to her apartment in upper Manhattan where she will be greeted by her daughter before she leaves for work. Deltejo says she doesn’t know exactly what happens during her mother’s nightly sojourns, but she is grateful.

“She was very weak when she started there. We had to carry her up and down [the stairs}. But now she walks up and down. She walks to Broadway,” Deltejo says. “She would not react to any of the conversation. Now she does. She’s a totally new person. I would say she’s 200 percent better.”

Deltejo says the program helped to improve her mother’s life and her own life as well. But Ortiz was battling congestive heart failure, and she succumbed to the disease a few months after we reported this story.

This story was produced in collaboration with NPR and WBUR’s Here & Now

KHN’s coverage of aging and long term care issues is supported in part by a grant from The SCAN Foundation.


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For Many Patients, Delirium Is A Surprising Side Effect Of Being In The Hospital Healthcare Blog By Sandra G. Boodman and Kaiser Health News

(Cover Illustration by Olimpia Zagnoli)​


When B. Paul Turpin was admitted to a Tennessee hospital in January, the biggest concern was whether the 69-year-old endocrinologist would survive. But as he battled a life-threatening infection, Turpin developed terrifying hallucinations, including one in which he was performing on a stage soaked with blood. Doctors tried to quell his delusions with increasingly large doses of sedatives, which only made him more disoriented.

Nearly five months later, Turpin’s infection has been routed, but his life is upended. Delirious and too weak to go home after his hospital discharge, he spent months in a rehab center, where he fell twice, once hitting his head. Until recently he did not remember where he lived and believed he had been in a car wreck. “I tell him it’s more like a train wreck,” said his wife, Marylou Turpin.

“They kept telling me in the hospital, ‘Everybody does this,’ and that his confusion would disappear,” she said. Instead, her once astute husband has had great difficulty “getting past the scramble.”

Turpin’s experience illustrates the consequences of delirium, a sudden disruption of consciousness and cognition marked by vivid hallucinations, delusions and an inability to focus that affects 7 million hospitalized Americans annually. The disorder can occur at any age — it has been seen in preschoolers — but disproportionately affects people older than 65 and is often misdiagnosed as dementia. While delirium and dementia can coexist, they are distinctly different illnesses. Dementia develops gradually and worsens progressively, while delirium occurs suddenly and typically fluctuates during the course of a day. Some patients with delirium are agitated and combative, while others are lethargic and inattentive.

Delirium Triggers

Patients treated in intensive care units who are heavily sedated and on ventilators are particularly likely to become delirious; some studies place the rate as high as 85 percent. But the condition is common among patients recovering from surgery and in those with something as easily treated as a urinary tract infection. Regardless of its cause, delirium can persist for months after discharge.

Federal health authorities, who are seeking ways to reduce hospital-acquired complications, are pondering what actions to take to reduce the incidence of delirium, which is not among the complications for which Medicare withholds payment or for which it penalizes hospitals. Delirium is estimated to cost more than $143 billion annually, mostly in longer hospital stays and follow-up care in nursing homes.

“Delirium is very underrecognized and underdiagnosed,” said geriatrician Sharon Inouye, a professor of medicine at Harvard Medical School. As a young doctor in the 1980s, Inouye pioneered efforts to diagnose and prevent the condition, which was then called “ICU psychosis.” Its underlying physiological cause remains a mystery.

“Physicians and nurses often don’t know about it,” added Inouye, who directs the Aging Brain Center at Hebrew SeniorLife, a Harvard affiliate that provides elder care and conducts gerontology research. Preventing delirium is crucial, she said, because “there still aren’t good treatments for it once it occurs.”

Researchers estimate that about 40 percent of delirium cases are preventable. Many cases are triggered by the care patients receive — especially large doses of anti-anxiety drugs and narcotics to which the elderly are sensitive — or the environments of hospitals themselves: busy, noisy, brightly lit places where sleep is constantly disrupted and staff changes frequently.

Recent studies have linked delirium to longer hospital stays: 21 days for delirium patients compared with nine days for patients who don’t develop the condition. Other research has linked delirium to a greater risk of falls, an increased probability of developing dementia and an accelerated death rate.

“The biggest misconceptions are that delirium is inevitable and that it doesn’t matter,” said E. Wesley Ely, a professor of medicine at Vanderbilt University School of Medicine who founded its ICU Delirium and Cognitive Impairment Study Group.

In 2013, Ely and his colleagues published a study documenting delirium’s long-term cognitive toll. A year after discharge, 80 percent of 821 ICU patients ages 18 to 99 scored lower on cognitive tests than their age and education would have predicted, while nearly two-thirds had scores similar to patients with traumatic brain injury or mild Alzheimer’s disease. Only 6 percent were cognitively impaired before their hospitalization.

Cognitive and memory problems are not the only effects. Symptoms of post-traumatic stress disorder are also common in people who develop delirium. A recent meta-analysis by Johns Hopkins researchers found that 1 in 4 discharged ICU patients displayed PTSD symptoms, a rate similar to that of combat veterans or rape victims.

David Jones, a 37-year-old legal analyst in Chicago, said that he was entirely unprepared for persistent cognitive and psychological problems that followed the delirium that began during his six-week hospitalization for a life-threatening pancreatic disorder in 2012. Terrifying flashbacks, a hallmark of PTSD, were the worst. “They discharged me and didn’t tell me about this at all,” said Jones, whose many hallucinations included being burned alive.

Jones’s ordeal is typical, said psychologist James C. Jackson of Vanderbilt’s ICU Recovery Center, a multidisciplinary program that treats patients after discharge.

Vivid Flashbacks

“They go home and don’t have the language to describe what has happened to them,” said Jackson, adding that such incidents are often mistaken for psychosis or dementia. “Some patients have very striking delusional memories that are very clear distortions of what happened: patients who were catheterized who think they were sexually assaulted and patients undergoing MRIs convinced that they were fed into a giant oven.”

Some hospitals are moving to prevent delirium through a more careful use of medications, particularly tranquilizers used to treat anxiety called benzodiazepines, which are known to trigger or exacerbate the problem. Others are trying to wean ICU patients off breathing machines sooner, to limit the use of restraints and to get patients out of bed and moving more quickly. Still others are trying to soften the environment by shutting off lights in patients’ rooms at night, installing large clocks and minimizing noisy alarms.

A recent meta-analysis led by Harvard researchers found that a variety of non-drug interventions — which included making sure patients’ sleep-wake cycles were preserved, that they had their eyeglasses and hearing aids and that were not dehydrated — reduced delirium by 53 percent. These simple fixes had an added benefit: They cut the rate of falls among hospitalized patients by 62 percent.

Inouye and other experts say that encouraging hospitals to recognize and treat delirium is paramount. They have vehemently argued that federal officials should not classify delirium as a “never” event for which Medicare payment will be denied, fearing that would only drive the problem further underground. (“Never” events include severe bedsores.)

Delirium “is not like pneumonia or a fracture” and lacks an obvious physical indicator, said Malaz Boustani, an associate professor of medicine at Indiana University. He proposes that Medicare create a bundle payment that would pay for treatment up to six months after delirium is detected.

Creating effective incentives is essential, said Ryan Greysen, an assistant professor of medicine at the University of California at San Francisco. Delirium, he said, suffers from a “pernicious know-do gap” — a disparity between knowledge and practice. Many proven interventions, he said, do not seem sufficiently medical. “There’s no gene therapy, no new drug,” Greysen said. “I think we need to put this in the realm of hospital protocol, which conveys the message that preventing and treating delirium is just as important as giving people their meds on time.”

Growing Awareness

Awareness that delirium is a significant problem, not a transitory complication, is recent, an outgrowth of growing expertise in the relatively new field of critical care medicine. The graying of the baby boom generation, whose oldest members are turning 69, is fueling interest in geriatrics. And many boomers are encountering delirium as they help care for their parents who are in their 80s and older.
“In the early 1990s, we thought it was a benevolent thing to protect people from their memories of having a tube down their throat, of being tied down, by using large doses of drugs to paralyze and deeply sedate patients,” Ely noted. “But by the late 1990s, I was just getting creamed by families and patients who told me, ‘I can’t balance my checkbook, I can’t find my car in the parking lot and I just got fired from my job.’ Their brains didn’t work anymore.”

Delirium “is now taught or at least mentioned in every medical and nursing school in the country. That’s a huge change from a decade ago,” said Inouye, adding that research has increased exponentially as well.

In some cases, delirium is the result of carelessness.

One woman said she was repeatedly rebuffed several years ago by nurses at a Washington area hospital after her mother started acting “stoned” after hip surgery. “She said things like ‘I’m having a dinner party tonight and I’ve invited a nice young man to meet you,’ ” recalled the daughter. She asked that her name be omitted to protect the privacy of her mother, now 96, who lives independently in Northern Virginia and “still has all her marbles — and then some.”

“The nurses kept telling me she was off all medication” and that her confusion was to be expected because of her age. “It was only when I insisted on talking to the doctor and going through her chart” that the doctor discovered that a motion sickness patch to prevent nausea had not been removed. “Within an hour, my mother was acting fine. It was very scary because if she hadn’t had an advocate, she might have been sent to a nursing home with dementia.”

Inouye, who developed the Confusion Assessment Method, or CAM scale, now used around the world to assess delirium, said that significant systemic obstacles to preventing delirium remain.

“We need to back up in our care of older patients so that we don’t treat every little symptom with a pill,” she said. Sometimes, she said, a hand rub or a conversation or a glass of herbal tea can be as effective as an anti-anxiety drug.

Two months ago, Inouye, who is in her 50s, was hospitalized overnight, an experience that underscored the ordeal that older, vulnerable patients face. “I was woken out of the deepest sleep every two hours to check my blood pressure,” she said. In addition, alarms in her room began shrieking because a machine was malfunctioning.

“Medical care,” she added, “has evolved to be absolutely inhumane to older people.”


In an effort to prevent or reduce delirium, Inouye created a program called HELP, short for Hospital Elder Life Program, currently operating in 200 hospitals around the country. While the core of the program remains the same, each hospital implements the program in different ways. Some enroll ICU patients, while others exclude them. A 2011 studyfound that HELP saved more than $7 million in one year at UPMC Shadyside Hospital in Pittsburgh.

At Maine Medical Center in Portland, HELP is a voluntary program open to patients older than 70 who have been in the hospital for 48 hours or less and do not show signs of delirium. ICU and psychiatric patients are excluded. The program relies on a cadre of 50 trained volunteers who visit patients up to three times daily for half-hour shifts, providing help and companionship and helping them stay oriented.

The CAM scale is built into the hospital’s electronic medical record, said geriatrician Heidi Wierman, who oversees the program and heads a medical team that sees patients regularly. HELP prevented delirium in 96 percent of patients seen last year, she said, adding that resistance by doctors and nurses to the 13-year-old program has been minimal because “we tied the incidence of falls to the prevention of delirium.”

Marylou Turpin, whose husband recently returned to their home outside Nashville, is planning to enroll him at Vanderbilt’s ICU Recovery Center as soon as possible. “I’m just hoping we can have some kind of life after this,” she said.

KHN’s coverage of aging and long term care issues is supported in part by a grant from The SCAN Foundation.

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Come to a great event and help The Connecticut Hospice at the same time as the Connecticut Hospice presents the "Extraordinary Angels Reception & Fashion Show" on Thursday September 28, 2017 from 5:30 pm to 9:00 pm. Located at the Stony Greek Brewery 5 Indian Neck Road Branford, CT. Visit for more info.

Come to a great event and help The Connecticut Hospice at the same time as the Connecticut Hospice presents the "Extraordinary Angels Reception & Fashion Show" on Thursday September 28, 2017 from 5:30 pm to 9:00 pm. Located at the Stony Greek Brewery 5 Indian Neck Road Branford, CT.  Visit for more info.

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Zip code: 
New Haven
start time: 
Thursday, September 28, 2017 - 5:30pm

Go4Life is an exercise and physical activity campaign from the National Institute on Aging at NIH, is designed to help you fit exercise and physical activity into your daily life.

About Go4Life

Go4Life, an exercise and physical activity campaign from the National Institute on Aging at NIH, is designed to help you fit exercise and physical activity into your daily life. Motivating older adults to become physically active for the first time, return to exercise after a break in their routines, or build more exercise and physical activity into weekly routines are the essential elements of Go4LifeGo4Life offers exercises, motivational tips, and free resources to help you get ready, start exercising, and keep going. The Go4Lifecampaign includes an evidence-based exercise guide in both English and Spanish, an exercise video, an interactive website, and a national outreach campaign.

Contact Go4Life Link:

Contact Go4Life using this online webform or using the contact information below:

General Public

National Institute on Aging

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Exercise, Even In Small Doses, Offers Tremendous Benefits For Senior Citizens Healthcare Blog by Judith Graham and Kaiser Health News

Cover photo: Ann Morales and Flora Yang walk together at Mazza Gallerie in Washington, D.C. (Heidi de Marco/KHN)

Retaining the ability to get up and about easily — to walk across a parking lot, climb a set of stairs, rise from a chair and maintain balance — is an under-appreciated component of good health in later life.

When mobility is compromised, older adults are more likely to lose their independence, become isolated, feel depressed, live in nursing homes and die earlier than people who don’t have difficulty moving around.

Problems with mobility are distressingly common: About 17 percent of seniors age 65 or older can’t walk even one-quarter of a mile, and another 28 percent have difficulty doing so.

But trouble getting around after a fall or a hip replacement isn’t a sign that your life is headed irreversibly downhill. If you start getting physical activity on a regular basis, you’ll be more likely to recover strength and flexibility and less likely to develop long-term disability, new research published in the Annals of Internal Medicine shows.

This encouraging finding comes from a study of people at high risk of mobility problems: men and women between the ages of 70 and 89 who were sedentary and had some difficulties with daily activities but were still able to walk a quarter mile without assistance.

Half of the group attended 26 weekly health education classes followed by monthly seminars. The other half spent about an hour getting physical activity — primarily walking — at a clinic twice a week, followed by at-home exercises.

The goal was to have participants meet the government’s recommended standard of 150 minutes of weekly moderate physical activity and sustain that level over time.

Results confirmed the extraordinary benefits of physical activity, which has been shown in previous research to lower an individual’s risk of heart disease, cognitive impairment, diabetes, depression and some cancers.

The group that focused on walking and strength and balance exercises was 25 percent less likely to experience significant problems with mobility than the group that focused on education over a period of almost three years. Specifically, they recovered faster from episodes of being unable to walk and were less likely to have problems getting around after that recovery period.

The program “was a godsend,” said John Carp, 87, who didn’t make it a point to walk regularly before he joined the study. “There was an improvement in physical feeling and also my mental attitude.”

“If there was a pill that offered comparable benefits, it would be a billion-dollar product and people would be all over it,” said Dr. Thomas Gill, lead author of the new paper and a professor of geriatrics at the Yale School of Medicine, as well as director of Yale Program on Aging.

Gill hopes to convince Medicare and other insurers to adopt the intervention he helped create. But older adults don’t need to wait for that to happen. There are plenty of places — YMCAs and senior centers, for instance — where seniors can take classes. Experts’ practical advice:

It’s never too late. “Older adults may think ‘it’s too late for me — I’m too old or too sick for this,’” said Patricia Katz, a professor of medicine and health policy at the University of California, San Francisco. “The message from this study is it’s never too late.”

“Prescribing exercise may be just as important as prescribing medications,” Katz wrote in an editorial accompanying Gill’s report.

Focus on activity, not exercise. “Older adults, if you talk to them about exercise, will say that’s not for me, that’s for my grandchildren,” Gill said. “But if you talk to them about become more physically active, they’ll say ‘okay, I can do that.’”

“Basically, I walk in the park or around the neighborhood and move my arms and legs around at night in different positions, and try to flex my muscles,” Carp said, describing his daily routine. “It’s not hard, and it makes a big difference.”

Where To Go For Help

"Go4Life" Link:    Practical suggestions for various exercises at the government’s physical activity site for seniors.

SilverSneakers: Fitness programsfor seniors provided by more than 70 health plans across the country.

National Council on Aging: Seven physical activity programs for seniors are listed here. Check websites or local Area Agencies on Aging to see if they’re available in your community.

Start slow. Some participants could barely make it around a track at the beginning of the study so “we started low and increased slowly,” offering remedial help along the way, Gill said.

“I recommend focusing on smaller and achievable goals, initially, and not trying to do everything at once because we know that tends to make people give up,” said Dr. Anne Newman, chair of the department of epidemiology at the University of Pittsburgh and co-author of a new study showing that people who eat healthily, maintain a normal weight and are physically active live longer and spend less time being disabled at the end of their lives.

Even small amounts make a difference. Newman’s study tracked more than 5,000 older adults over the course of 25 years. One conclusion: “There’s no threshold for benefit from physical activity,” she said. “Every little bit helps.”

“You don’t need to get on a treadmill, go to the gym, or wear Spandex,” Newman said. All you need to do is start walking for a few minutes every day and gradually build up your strength and endurance.”

Beware of becoming sedentary. The worst thing seniors can do is “sit down and take it easy,” said Susan Hughes, co-director of the Center for Research on Health and Aging at the University of Illinois at Chicago.

Make a plan. Hughes helped develop Fit & Strong, an evidence-based physical activity program for seniors with osteoarthritis that incorporates health education.

Before participants go off on their own, coaches craft an individualized plan that covers three questions: What are you going to do and how often, where are you going to do it and who are you going to do it with? You can make a plan yourself, but make sure it’s enjoyable, Hughes said. Otherwise, it’s very unlikely you’ll follow it for any length of time.

We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit to submit your requests or tips.

KHN’s coverage of late life and geriatric care is supported by The John A. Hartford Foundation.


For more KHN coverage of aging, and for more information on Kaiser Health News, please visit our web page at:

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Identity Thief Victim's Counseling Workshop on Wednesday July 19, 2017 from 7:30 am to 11:30 am. Located at The Crystal Ballroom Middletown Elks Club 44 Maynard Street Middletown, CT

Identity Thief Victim's Counseling Workshop on Wednesday July 19, 2017 from 7:30 am to 11:30 am. Located at The Crystal Ballroom Middletown Elks Club 44 Maynard Street  Middletown, CT

For more information contact: - Gatekeeper Program @ St. Lukes Community Services -
163 College Street, Middletown, CT 06457  |  860-347-5661  |

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start time: 
Wednesday, July 19, 2017 - 7:30am

Terminally Ill Patients Don’t Always Use Aid-In-Dying Laws To Relieve Pain Healthcare Blog by Liz Szabo​ and Kaiser Health News

Cover photo: Mary Klein, 68, left, with her wife, Stella Dawson, 62, at their home in Washington, D.C., Klein has advanced ovarian cancer and supports a bill to legalize medical aid in dying in Washington. (Francis Ying/KHN)


Supporters of “death with dignity” have succeeded in legalizing medical aid-in-dying in five states by convincing voters, lawmakers and courts that terminally ill patients have the right to die without suffering intractable pain in their final days or weeks.

When Gov. Jerry Brown signed California’s law in 2015, he said: “I do not know what I would do if I were dying in prolonged and excruciating pain” and that it would be a “comfort to consider the options afforded by this bill.”

Yet the latest research shows that terminally ill patients who seek out aid-in-dying aren’t primarily concerned about pain. Those who’ve actually used these laws thus far have been far more concerned about controlling the way they exit the world than controlling pain.

The research suggests that patients’ motivations are more complicated than they’re often portrayed and could affect or shape how people vote on the issue in other cities and states.

Colorado voters will decide on a ballot initiative to legalize physician aid-in-dying in November. The city council in Washington, D.C., is expected to vote on legalizing the practice next month.

“It’s almost never about pain,” said Lonny Shavelson, a Berkeley, Calif., physician who specializes in the care of the terminally ill and who began writing prescriptions for lethal doses of medication in June, when California’s law took effect. “It’s about dignity and control.”

Pain ranks near the bottom of a list of patients’ concerns in Oregon and Washington, the first two states to legalize physician-assisted dying, which provide the most complete details about people’s motivations. Only 25 percent of the 991 Oregon patients who died after taking lethal prescriptions from 1998 to 2015 were concerned about pain or had inadequate pain control, according to reports filed with the state by their doctors. In Washington, 36 percent of 917 who died were concerned about pain.

In contrast, at least 90 percent of patients in both states were motivated by a loss of autonomy, state records show. Forty-one percent of patients in Oregon and 53 percent in Washington said they feared burdening the people they loved. Montana, Vermont and California also permit aid-in-dying, but haven’t released detailed information about patients’ motivations.

Seeking Control

Compassion & Choices, an advocacy group that supports aid-in-dying, focuses heavily on the need to relieve dying patients of pain.

One of the group’s new ads promotes the District of Columbia’s Death With Dignity Act as giving “a dying person the option to avoid the worst pain and suffering at the end of life.” The widower of Brittany Maynard, a 29-year-old California woman who became the best-known advocate for the right to die, has spoken publicly in support of the legislation. Maynard, who had an aggressive brain tumor, moved to Oregon in 2014 in order to use that state’s aid-in-dying law. She died that year after using a lethal prescription.

“The dying process is what Brittany feared,” said her husband, Dan Diaz. “She was afraid that her final few days on this green earth would be ones where she was tortured by the tumor.”

Mary Klein, a 68-year-old resident of the District who is fighting advanced ovarian cancer, said she wants choices at the end of her life.

“I want to have the option to control my own body and control my own life,” said Klein, a retired journalist and artist who appears in a video supporting legislation to legalize aid-in-dying in the city, created by Compassion & Choices.

Although Klein says she may also enroll in hospice care, which focuses on the needs of people with six months or less to live, she wants to have an alternative if the services don’t meet her needs.

“The dominant reasons for wanting euthanasia or assisted suicide are psychological and involve control factors,” said Ezekiel Emanuel, chair of medical ethics and health policy at the University of Pennsylvania. He noted that most of those who’ve used aid-in-dying laws are white, well-insured and college educated. “These are people who are used to controlling every aspect of their lives, and they want to control this aspect of their lives.”

A study of 56 Oregon patients interested in physician aid-in-dying reached similar conclusions. Although patients were concerned about the risk of future pain, they ranked “current pain” as unimportant, according to the 2009 study in Archives of Internal Medicine (now known as JAMA Internal Medicine). Patients told researchers they were primarily motivated by a desire to “control the circumstances of death and die at home,” as well as a loss of independence, poor quality of life and their inability to care for themselves.

The patients interviewed “look forward to this period in their terminal illness, this time in which they will be not in control, when they will be dependent on others, when they will have a bunch of physical symptoms that will undermine their quality of life, and they want to avoid that,” said Linda Ganzini, a professor of psychiatry and medicine at Oregon Health & Science University.

Critics of aid-in-dying laws have for years warned that they could set the country on a “slippery slope,” in which lethal prescriptions are dispensed not just to the terminally ill, but to anyone with a disease that harms their quality of life. Those fears haven’t come to pass. But physician Ira Byock, who specializes in palliative care, said aid-in-dying laws are creating a slope of another kind. Instead of helping only terminally ill patients in physical pain, they’re being used by patients in psychological distress.

“It’s a bait and switch,” said Byock, executive director and chief medical officer for the Institute for Human Caring of Providence Health and Services, based in Torrance, Calif. “We’re actually helping people hasten their deaths because of existential suffering. That’s chilling to me.”

Although right-to-die campaigns suggest that excruciating pain is often unavoidable, Byock said that “we can relieve the suffering of almost everyone that we care for if we have the time to prepare.”


“I want to have the option to control my own body and control my own life,” said Klein, right. (Francis Ying/KHN)

Hospice staff are on call 24 hours a day to help patients in pain, Byock said. Palliative care and hospice teams also can train family caregivers how to administer emergency pain medications that take effect before nurses can arrive.

Hospice may have alleviated some patients’ concerns, said physician Thomas Smith, director of palliative medicine at Johns Hopkins Medicine in Baltimore. Just 64 percent of Oregon patients and 82 percent of Washington patients last year actually used the lethal medications they were prescribed. Others died without taking them.

“Many people who have the prescriptions don’t use them,” Smith said. “That suggests to me that some people find meaning and purpose and adequate symptom control, not just that they are too weak to take the pills.”

Many Kinds Of Suffering

Barbara Coombs Lee, president of Compassion & Choices, said it’s difficult for people to predict how they will feel as they face a deadly illness. While a healthy person might not imagine being able to tolerate physical disability, people facing the prospect of an early death are often willing to accept harsh treatments or a reduced quality of life in exchange for more time.

That change in perspective could help explain why some of those who advocate for the right to die, including those who obtain lethal prescriptions, never actually choose to hasten their death, Coombs Lee said. But she said that having the prescription on hand can ease patients’ anxiety and give them peace of mind, because they can control the timing and method of death.

Coombs Lee also notes that people can suffer in many ways beyond physical pain. Maynard’s brain tumor caused her to suffer frequent seizures, for example. Coombs Lee also described the case of a dying woman who took a lethal prescription after she began leaking fecal matter, which prevented her from ever feeling clean.

Coombs Lee quotes the woman, Penny Schleuter, in her book, Compassion in Dying: Stories of Dignity and Choice. Schleuter said the pain from her cancer could be controlled. But, she added, “I like doing things for myself, and the idea of having somebody take care of me like I am a little 2-month-old baby is just absolutely repulsive. It’s more painful than any of the pain from the cancer.”

Coombs Lee said, “everyone who is terminally ill has some kind of nightmare that would be worse than death to them. They want to achieve sufficient control to avoid that nightmare for their family.”

Dan Diaz said people shouldn’t underestimate how devastating it can be to lose one’s autonomy.

“If I find myself in a situation where I can’t go to the bathroom on my own, where someone has to change my diapers, where I can’t feed myself, where I can’t care for the people around me, where other people have to move me around to keep me from having bed sores, I would then submit, is that really living?” Diaz asked.

Some people who pursue physician-assisted death “don’t want to be in a hospital, don’t want to be connected to tubes,” Coombs Lee said. “They say, ‘I want to be at home with those I love. I don’t want to be delirious or unconscious at the end of life. Those are all things that play into their fears about what their disease might descend into.”

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation and coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.


For more KHN coverage of aging, and for more information on Kaiser Health News, please visit our web page at:

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Washington, DC