Jay Zimmerman got his first BB gun when he was 7, and his first shotgun when he was 10.
“Growing up in Appalachia, you look forward to getting your first firearm,” he said, “probably more so than your first car.”
His grandfather taught him to hunt squirrels and quail. Zimmerman, who lives in Elizabethton, Tenn., said pretty much everyone he knows has a gun. It’s just part of the culture.
“When I went into the military, that culture was reinforced,” he said. “Your weapon is almost another appendage. It’s part of who you are.”
Zimmerman served as a medic in the Army in the late 1990s and early 2000s, with stints in Bosnia, Africa and the Middle East. Since he came home, he’s struggled with PTSD and depression. It reached a crisis point a few years ago, when his best friend — the guy who had saved his life in a combat zone — killed himself. Zimmerman decided his time was up, too.
“I decided that I would have one more birthday with my daughter, one more Christmas with my daughter,” he said. “I had devised my own exit strategy for 16 February 2013.”
But then he bumped into a woman who used to ride the same school bus when they were kids. His exit date came and went. They’re married now.
Zimmerman still gets depressed, but now he’s a peer counselor at the Mountain Home VA Medical Center in Johnson City, Tenn. He also travels to conferences all over the country, sharing his story with therapists and with other vets, encouraging them to ask for help when they need it.
Even today, he explains at these conferences, if he’s not doing well, he disassembles his guns and stores them separately from ammunition, so he can’t make any rash decisions. And if things get really bad, Zimmerman has a special arrangement with a few friends.
“I call them and say, ‘Look, I’m feeling like it’s not safe for me to have firearms in my home. Can you store them for me for a couple days till I feel like I’m OK to have them back?’ ”
Suicide is often an impulsive act. Nearly half the people who survive an attempt say the time between their first thought of suicide and the attempt itself was less than 10 minutes. But the method can mean the difference between life and death: People who take pills have time to change their minds, or may still be alive when discovered. That’s not the case with guns.
Almost 70 percent of veterans who commit suicide do so with a gun, which prompted President Barack Obama to order the VA to talk to vets about gun safety and storage options like the ones Zimmerman uses.
But here’s the trouble: Most therapists aren’t gun people. They don’t know how to talk about guns and so they don’t.
“One obvious reason for that is that no one has taught them how,” explained Megan McCarthy, a psychologist and National Deputy Director in the Office for Suicide Prevention in the U.S. Department of Veterans Affairs.
McCarthy was invited to speak recently at a suicide prevention conference in San Francisco, aimed at therapists who work with vets.
“How many of you would say you feel really comfortable having a conversation with any of the people you work with about limiting access to all lethal means?” she asked the roomful of therapists.
Hardly anyone raised their hand.
“OK, so that’s why we’re here today,” she said.
Researchers recommend starting with a field trip to a shooting range. There, therapists can learn about different kinds of firearms, as well as gun locks, and get an introduction to gun culture.
When counseling vets, therapists have to ask more questions and be less directive, McCarthy said.
“We often conceive of ourselves as experts — as people who impart information to clients,” she said. But with vets, “it may take time to build trust. Telling them what to do the first time you’ve met them is probably not going to be a very effective approach.”
McCarthy presented a case study at the conference: A 28-year old, unmarried Army veteran who fought in Iraq told his VA psychiatrist that he had an argument with his girlfriend last week. He drove to an empty parking lot and sat with his loaded handgun in his lap, intending to kill himself.
He didn’t do it. A week later, the man told his psychiatrist things were still tense with his girlfriend. But he didn’t want to talk about suicide or storing his gun.
McCarthy asked the clinicians in the audience what they would do next, if they were this man’s psychiatrist.
“Why did he not do it? That would be my question,” one therapist said.
“I would want to see this individual again, within the same week,” said another. “I believe in strong intervention.”
Jay Zimmerman, the former army medic and peer counselor, stood up and explained his different perspective.
“Chances are the reason he’s not talking to you is because he’s afraid he’s going to lose his gun that he carries pretty much all the time,” Zimmerman said. “My buddies are the same way. We all carry — all the time.”
A lot of veterans would sometimes rather confide in a fellow vet than someone in a white coat, Zimmerman said. And that was an unusual takeaway for the professional counselors: Sometimes their role is not to intervene at all, but to be a facilitator. To make sure vets have someone to talk to outside the therapy office.
Back in 2014, federal officials settled on what they thought would be a straightforward fix to curb abusive pill pushing: Require doctors and other health providers to register with the Medicare program in order to prescribe medications for beneficiaries.
That way, the government could screen them and take action if their prescribing habits were deemed improper. Officials figured the modest change would barely ruffle the medical community: Doctors already had to fill out an application, have their credentials verified and enroll to get paid by Medicare for seeing patients, after all.
But this fix, which followed a 2013 ProPublica investigation into questionable prescribing in Medicare, has yet to be implemented. The government now says it needs until 2019 to put it in place — 3 1/2 years longer than initially expected.
“It has definitely been much more challenging” than anticipated, said Jonathan Morse, acting director of the Center for Program Integrity within the Centers for Medicare and Medicaid Services, the federal agency that runs Medicare.
As a result, the government is still covering prescriptions written by doctors who have been kicked out of Medicare and even some who have pleaded guilty to crimes. Three New Jersey doctors who pleaded guilty in July 2013 to charges related to a bribery scheme continued prescribing drugs to Medicare patients the following year, a ProPublica review found.
One of those doctors, Franklin Dana Fortunato, told ProPublica that he was advised that he could continue treating patients between his guilty plea and his sentencing in May 2015.
In addition, at least 40 doctors kicked out of Medicare before 2014 had their prescriptions covered by Medicare’s prescription drug program, known as Part D, that year, a ProPublica analysis shows.
Much of the reason for the delay rests with dentists. Medicare, which provides health care to seniors and the disabled, doesn’t typically cover dental services, but the Part D program pays for drugs, such as antibiotics or painkillers, that dentists order for beneficiaries.
“Since Medicare covers very few dental item and services, many (perhaps most) dentists have little incentive to enroll in Medicare” outside of this requirement, the American Dental Association wrote to CMS in September 2016. The dental group also said the enrollment process is too complex and that CMS already has the information it needs to address fraud and abuse concerns.
ProPublica analyzed all providers who wrote at least 50 prescriptions for at least one drug in Part D in 2014. All told, more than 92 percent of the 428,000 providers were enrolled in Medicare. But among 18,500 dentists, almost the exact opposite was true: More than 82 percent weren’t enrolled.
“From their perspective, they’re basically saying to us, what incentive do they have to enroll,” said Morse, the head of program integrity for CMS.
Part D, which began in 2006, has received high marks from patients. It now covers more than 42 million people. But experts have long complained that the program places a higher priority on getting prescriptions into patients’ hands than on targeting problem prescribers. The Department of Health and Human Services’ inspector general has repeatedly called for tighter controls.
Medicare’s response, finalized in May 2014, gave officials the power to kick health providers out of the program if their prescribing is abusive, a threat to public safety or in violation of Medicare rules. CMS said it would use prescribing data, disciplinary actions, malpractice lawsuits and more to identify problem providers.
To date, officials said, Medicare has only done so once.
But the plan to require that providers enroll in Medicare has been met by delay after delay after delay.
At first, CMS gave providers until June 1, 2015, to either enroll in Medicare or formally opt out. Either way, the government would have additional information about them. If they neither enrolled nor formally opted out, Medicare said it would no longer cover drugs they ordered for beneficiaries.
Finally, in October 2016, CMS pushed it off until January 2019. Beginning this spring, it said it will block prescriptions from doctors who have been barred from participating in federal health programs, those ousted from the Medicare program for other reasons, and those convicted of a felony in the past 10 years.
The delays have enabled troubled doctors to continue prescribing—while still having their prescriptions paid for by Medicare.
A family practice doctor in Michigan, for example, was charged in December 2012 with conspiracy to commit fraud and illegally distributing a controlled substance. But he wrote 7,864 prescriptions in Part D in 2014. In fact, 41 percent of his Part D patients received at least one prescription for a narcotic painkiller that year. He pleaded guilty in 2015 and was sentenced to seven years in prison.
And in Georgia, a nursing home doctor kicked out of Medicare in February 2014 for “abuse of billing privileges” nonetheless wrote nearly 45,000 prescriptions covered by the program that year.
While CMS has delayed its enrollment requirement, it has begun to review the reams of data it collects to identify doctors with aberrant prescribing patterns. It sent a round of letters to doctors, alerting them to how they compared to peers, but a study in the journal Health Affairs last year found that the letters were ineffective at changing behaviors.
A second round of letters, which contained stronger warnings, has led to a small change in prescribing practices, Morse said.
“Rather than saying, ‘Hey we’ve noticed that you have this odd or higher than average prescribing behavior,’ now it’s much more ‘We plan to take action if your behavior does not fall into line with that of your peers,'” he said. “It has become more effective because the letter is more strongly worded.”
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Your federal income taxes are due April 18 and, likely for several million people, so is a fine for failing to get health insurance.
Despite a lengthy debate, Congress has not yet acted on a bill to repeal portions of the Affordable Care Act. That means the law and almost all of its regulations remain in force, for now.
For the majority of tax filers, who had insurance through an employer or government program for 2016, all they have to do is check the box on Form 1040 that says they were covered for a full year. That’s it.
Under a decision by the Trump administration, however, leaving that box blank will not get your tax return kicked back to you. The IRS under President Barack Obama also did not reject returns with the box left blank last year or the year before, but it had announced it would step up enforcement of what’s known as the “individual mandate” for tax year 2016. That plan was canceled under Trump’s executive order calling on federal agencies to “minimize the burden” of the health law.
Still, those who lacked insurance for more than three consecutive months, or who bought individual insurance and got federal help paying the premiums, need to do a little more work.
Those with no insurance or a lengthy gap may be required to pay what the federal government calls a “shared responsibility payment.” It’s a fine for not having coverage, on the theory that even those without insurance will eventually use the health care system at a cost they can’t afford and someone else will have to pay that bill.
Many people without insurance, however, qualify for one of several dozen “exemptions” from the fine. Nearly 13 million tax filers claimed an exemption for 2015 taxes, according to the IRS. The most common were for people whose income was so low (less than $10,350 for an individual) that they are not required to file a tax return, Americans who lived abroad for most of the year and people for whom the cheapest available insurance was still unaffordable (costing more than 8 percent of their household income).
The fine for 2016 taxes is the greater of $695 per adult or 2.5 percent of household income. Fines for uncovered children are half the amount for adults. Fines are pro-rated by the number of months you or a family member was uninsured.
The maximum fine is $2,676; that is the national average cost of a “bronze” level insurance plan available on the health exchanges. But most people do not pay anywhere near that much. Last year, said the IRS, an estimated 6.5 million tax filers paid a fine that averaged $470.
If you bought your own insurance from the federal or a state health insurance exchange and you got a federal tax credit to help pay for that coverage, you also have to take a step before you can file your taxes.
People who got those tax credits must fill out a form that “reconciles” the amount of subsidies they received based on their income estimates with the amount they were entitled to according to their actual income reported to the IRS.
In 2016, 5.3 million taxpayers had to pay the government because they got too much in tax credits, compared with 2.4 million who got additional money back. But among those who underestimated their incomes and had to pay back some of those tax credits, 62 percent still received a net refund on their taxes.
The long arm of the pharmaceutical industry continues to pervade practically every area of medicine, reaching those who write guidelines that shape doctors’ practices, patient advocacy organizations, letter writers to the Centers for Disease Control and Prevention, and even oncologists on Twitter, according to a series of papers on money and influence published today in JAMA Internal Medicine.
The findings of the papers provide further evidence showing how conflicts of interest help shape health care, a subject ProPublica has explored through its Dollars for Docs series since 2010. (Check whether your physician receives money from drug or device companies through our news tool.)
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“The very way we all think about disease — and the best ways to research, define, prevent, and treat it — is being subtly distorted because so many of the ostensibly independent players, including patient advocacy groups, are largely singing tunes acceptable to companies seeking to maximize markets for drugs and devices,” researchers Ray Moynihan and Lisa Bero wrote in an accompanying commentary.
The papers published in the journal cover a variety of issues:
More than two-thirds of patient advocacy organizations that responded to a survey indicated that they had received industry funding in their last fiscal year. For most, the money represented a small share of their budget. But 12 percent said they received more than half of their money from industry.
Most organizations reported having a conflict-of-interest policy, but a much smaller percent said that their groups had policies for public disclosure of those relationships. Fewer than 8 percent of respondents said their group “perceived pressure to conform its positions to the interests of corporate donors or partners” and nearly 14 percent said their group had declined a contribution because of concerns about conflicts of interest.
“Although the amounts and proportions of financial support from industry are modest, the pervasive nature of industry support suggests the need for robust public debate about how to ensure that [these groups] serve the interests of their constituencies,” the authors affiliated with the Cleveland Clinic and other academic medical centers wrote. It called for greater transparency of funding sources by the groups.
Organizations that received funding from opioid manufacturers were less supportive of guidelines proposed by the CDC to limit prescribing of the drugs for chronic pain. More than 150 organizations formally submitted comments after the proposed guidelines were released in February 2016, and 80 percent of them were supportive, though some had recommendations for changes.
Among the 45 groups that received money from opioid makers, though, the level of support was only 62 percent. And none of those groups disclosed their funding sources in their comments. (The CDC did not ask or require them to do so.)
“More people are dying than ever before from these products and it’s important to know how the market is shaped by the spending of drug companies,” G. Caleb Alexander, co-director of the Center for Drug Safety and Effectiveness at Johns Hopkins University, said in an interview.
Two committees that developed guidelines for the management of high cholesterol and hepatitis C did not fully comply with standards set by the Institute of Medicine in 2011 to limit the number of industry-funded panelists. The Institute of Medicine required that fewer than half of guideline writers have commercial ties and that all chairs and co-chairs have no conflicts. But in both cases, at least one chairperson received money from industry and, in the case of the hepatitis C guidelines, a substantial majority of panelists also received money.
Moreover, the authors noted, when separate committees with no commercial conflicts developed guidelines for cholesterol and hepatitis C, the recommendations were more conservative and called for less expensive first line treatments.
Nearly 80 percent of U.S. hematologist-oncologists who use Twitter have financial conflicts of interest. The authors said their results raise questions about how conflicts should be disclosed and managed on social media. It recommended that, at minimum, physicians active on Twitter should disclose their industry funding in their biographies.
A preliminary analysis of tweets by these doctors, not yet published, has shown that “a sizable percentage are tweeting about drugs that they have specific ties to,” oncologist Vinay Prasad, one of the authors of the study and an assistant professor of medicine at Oregon Health & Science University, said in an interview. “Not a single one has disclosed so far, but we’ll find out.”
The pharmaceutical industry trade group, in a statement, defended the relationships between companies and other organizations.
“Industry engages with stakeholders across the health-care system to hear their perspectives and priorities,” said the statement by Pharmaceutical Research and Manufacturers of America. “We work with many organizations with which we have disagreements on public policy issues, including on prescription medicine costs, but believe engagement and dialogue are critical.
“While we cannot speak for particular organizations, we have heard from many patients who are concerned about the growing out-of-pocket cost burden when trying to access needed health-care services and treatments. In addition, there is broad recognition by the patient community of the significant unmet medical need that exists for many fighting devastating and debilitating diseases.”
Moynihan and Bero, the authors of the JAMA Internal Medicine commentary, wrote that their primary concern is that patient groups actually speak for patients. Recently, when Mylan came under widespread criticism for the price of its EpiPen, patient groups were largely silent.
“To ensure a healthier patient voice in medical research, education, policy and practice, sponsored groups that want to be seen as independent and credible need to decrease their industry sponsorship and ultimately disentangle, gaining in authority what they lose in resources,” they wrote.
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In 1983, a ground-breaking white paper by then-Chief of Staff of the Army General John A. Wickham Jr. on the importance of increasing support to the Army family put into motion the Army Family Action Plan, or AFAP. General Wickham asserted that a healthy family environment allowed soldiers to more fully concentrate on their mission, so… (more…)
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Florence Marquez liked to describe herself as a cannery worker, even though she was best known in her heavily Latino East San Jose neighborhood as a community activist.
She strode alongside Cesar Chavez in the farmworker movement during the 1960s and 70s. She helped build affordable housing for poor families near her local church.
But eight years ago, Florence, now 86, couldn’t find her way to the house she had lived in for 50 years. “That’s when we knew she needed 24-hour care,” said her oldest daughter, Barbara Marquez, 61.
Florence was diagnosed with Alzheimer’s disease, which robbed her of her memory and her fierce independence. Across the United States, stories like hers are becoming more common, particularly among Latinos — the fastest growing minority in the country.
With no cure in sight, the number of U.S. Latinos with Alzheimer’s is expected rise by more than eight times by 2060, to 3.5 million, according to a report by the USC Edward R. Roybal Institute on Aging and the Latinos Against Alzheimer’s network.
Advanced age is the leading risk factor for Alzheimer’s disease and the likelihood of developing Alzheimer’s doubles about every five years after age 65. As a group, Latinos are at least 50 percent more likely than whites to have Alzheimer’s, in part because they tend to live longer, the report notes.
“This is an incoming tsunami,” said Dr. William Vega, one of the report’s authors and the Roybal Institute’s executive director. “If we don’t find breakthrough medication, we are going to be facing a terrible financial crisis.”
That tidal wave of Alzheimer’s cases is prompting some tough conversations in Latino families, who often pride themselves on caring for elders at home, rather than placing them in nursing homes.
Those talks come with a lot of guilt, Barbara said. Until recently, Barbara was her mother’s primary caregiver. Her sister and brother helped out.
“But it was more than I could have anticipated,” Barbara said, recalling sleepless nights as she tried to make sure Florence didn’t get up and wander off. “It impacts your health, it impacts your marriage. So we looked for help.”
About 1.8 million Latino families nationwide care for someone with Alzheimer’s and other types of dementia. And while the Roybal report shows that Latino families are less likely than whites to use formal care services, such as nursing home care, institutionalized care is becoming more common among these families.
That can be costly. Nationwide, the average cost for basic services in an assisted living facility is $43,200 per year, according to the Alzheimer’s Association. Yearly nursing home care now averages more than twice that, at slightly more than $92,000.
For many Latino families, getting outside help isn’t an option. It’s often too expensive for seniors who aren’t eligible for Medi-Cal, California’s version of the Medicaid program for low-income people, which generally pays for nursing home care. Immigrants who are in the country unlawfully do not qualify for it, nor do people whose incomes are too high.
Florence’s children decided to take their mother out of her house in San Jose, and they brought her to live with her daughter Barbara in Fair Oaks, just outside Sacramento. They sold the San Jose house, thinking it would help pay for institutionalized care should their mom need it down the road.
She did not qualify for Medi-Cal, so she lived with Barbara for about three years. But after trying out a senior day care program outside of the house at a cost of about $78 a day, Barbara and her family placed Florence in a senior home in the Sacramento suburb of Carmichael, where she has been living for the past year.
The decision to institutionalize Florence Marquez left her children feeling both guilty and overwhelmed by the steep expense. Her care now costs $3,000 to $4,000 per month, they said. They pay extra for specialized services.
They had the proceeds from the sale of Florence’s house, “but those resources are dwindling,” Barbara said. “What do we do when that money is gone?”
The Roybal study estimates that the cumulative economic impact of Alzheimer’s among Latinos will hit $2.35 trillion by 2060. That figure includes the costs of medical and long-term care, as well as the lost earnings of family members who provide unpaid in-home care, and of the Alzheimer’s victims themselves, according to the study.
Gustavo Lopez of Chicago cares for his mother, Agustina Lopez, 76, who was diagnosed with Alzheimer’s disease seven years ago.
Gustavo, 48, and his four siblings looked into assisted living but couldn’t afford it. Agustina, after moving between her children’s homes, eventually landed with Gustavo, her youngest.
When Gustavo first took on the role of primary caregiver, his mother still did most things on her own, he said. But she now relies on him to help her eat, bathe, dress and take her medication.
So Gustavo needs a job with flexible hours. He’s worked mostly as a waiter. Other employment opportunities have come his way, some with better pay, but caring for his mother comes first, he said.
Asking For Help
Gustavo does get some help from family friends who check in on his mom while he is at work. He also found Casa Cultural in Chicago, a social service agency that offers a day program for seniors. He can drop his mom off at the center for a few hours, giving him a respite.
The alliance, formed in 2009, focuses on family members who are primary caregivers. Mizis said she has met many caregivers who are near their breaking point. The nonprofit offers training for them, helps find resources to boost their own well-being and puts on community events for families.
When seeking support, the best place to start is at a local community group or center — a church, a nonprofit, a United Way office, or the local Alzheimer’s Association chapter, for example, Mizis said. These groups will most likely refer caregivers to a county’s Agency on Aging or a state’s Department of Aging.
There, families are assigned a social worker who can discuss what benefits are available. If an Alzheimer’s patient qualifies for Medicaid, these benefits could include caregiver training and payment through programs such as California’s In-Home Supportive Services. But benefits and eligibility vary by state.
In 2010, the Social Security Administration recognized early-onset Alzheimer’s as a medical condition eligible for disability income. That could help people whose Alzheimer’s disease is diagnosed before the age of 65, but many Latino families aren’t aware the program exists, Mizis said.
A Push For Awareness
Because Latinos are more likely to use informal and more affordable care options, the Roybal report calls for improving training and resources for families in both English and Spanish.
Among the caregivers who opt to keep a parent with Alzheimer’s at home is Julia Garcia, of Houston, Texas. She rotates with her three daughters to watch her mother, Marcela Barberena, 85, who was diagnosed with the disease last year.
Julia, who had been unfamiliar with Alzheimer’s, initially thought her mother’s forgetfulness and childlike behavior was due to age.
“Too often people will see Alzheimer’s as a result of old age, but this brain-deteriorating disease is not natural,” said Vega, co-author of the report.
Julia Garcia said she realized it was something more serious when her mother took a shuttle bus from Houston’s international airport without knowing her destination.
“We had agreed I’d pick her up, but she left on her own,” Julia said. “She ended up downtown. It was the scariest moment of my life.”
As a new caregiver, Julia reached out to her local Alzheimer’s Association chapter for information. While some resources are available in Spanish in the Houston chapter, Julia noticed very few Latinos attending the informational workshops or classes.
Spanish-language media provided little information about the disease. “You rarely hear anything about it on TV or the radio,” she said.
In addition, many Latinos, including the Marquez, Lopez and Garcia families, are often unaware of clinical trials through which families can gain access to experimental therapies and medications at little or no cost.
Latinos are underrepresented in clinical trials sponsored by the National Institutes of Health: They account for 17 percent of the U.S. population but only 7.5 percent of participants at the 32 NIH-funded Alzheimer’s research centers across the country, according to the Roybal study.
Latino volunteers for these trials are important in helping researchers develop Alzheimer’s treatments that work for all ethnic groups, the report says.
“This is why it is so important to invest in the education of these communities,” Mizis said.
Her group helps train promotoras, or community health educators, in regions with large Latino communities — including San Francisco, Los Angeles, Baltimore and New York. Going door-to-door, promotoras educate families about the disease.
“I see firsthand everyday how much help our communities need,” Mizis said. “And this need keeps growing.”
Since he watched his mother drop dead, Richard Bridgman’s fear of death has left him emotionally paralyzed.
It was right around Thanksgiving — nearly 45 years ago — and Bridgman was sleeping overnight on his mom’s living room couch.
“In the middle of the night, she walked into the room and said, ‘Richard, I’m dying,’” recalls Bridgman, who tried to reassure his mom that she’d be okay. But his mother, who had a heart condition, was suffering a massive heart attack. “She looked at me and fell over on her head. I didn’t know what to do. She was dead.”
Death haunted much of Bridgman’s early years. His stepfather died when Bridgman was 15. His father, an alcoholic, died when Bridgman was 17. And Bridgman was 26 when his mom died before his eyes. Now, 72, and long retired from the bill collection business he once owned in the Springfield, Ill., area, he has spent most of his adult years trying to cope with — if not overcome — his immense fear of death.
“Death became an obsession,” he said. “No matter where I went or what I did, death was always in the back of my mind.”
Most people prefer not to think about death, much less plan for it. In a tech-crazed world, where time is commonly measured in 140 characters and 6-second sound bites, life would appear to be dissected into so many bite-sized morsels that discussion of death doesn’t even seem to fit into the equation.
Kelvin Chin (Courtesy of Kelvin Chin)
“Everybody has a fear of death, no matter what culture, religion or country they come from,” said Kelvin Chin, author of “Overcoming the Fear of Death” and founder of the Overcoming the Fear of Death Foundation and the non-profit turningwithin.org. “Fear is simply an emotion caused by the anticipation of unhappiness.”
But wait. What if death isn’t actually unhappy? What if it simply — is? For Bridgman, whose fear of death was overwhelming, that simple question was a critical step in learning to emotionally deal with death. That question was posed to him by Chin, who he discovered via a Google search. Several supportive phone consultations with Chin — combined with a simple meditation process that Chin teaches — have helped to keep Bridgman’s fears under control.
“I spent so much money on psychiatrists and psychotherapists — none of them did any good,” says Bridgman. But Chin steered Bridgman towards meditation. “Meditation is better than medicine,” Bridgman said.
Everyone must figure out their own way to handle the fear of death. One expert, who overcame her own fear through years of attending to the dying, says death is rarely the terrible thing that most folks fret about.
“Death is usually a peaceful process,” explains Donna Authers, a professional caregiver, motivational speaker and author of the book “A Sacred Walk: Dispelling the Fear of Death and Caring for the Dying.”
“Very few people die screaming. They just go to sleep.”
But it took Authers years to learn the lesson that death need not be frightening. As a child, death haunted her. When she was two years old, her father was killed in World War II. Her mother, who had remarried, died on Authers’ fifth birthday. “Instead of a birthday party, I woke up to the worst day of my life,” she said. Her grandfather committed suicide when Authers was 15.
Donna Authers (Courtesy of Donna Authers)
It was Authers’ grandmother — while dying from cancer — who taught Authers the most critical lesson in accepting death’s inevitability. Authers brought her grandmother home to tend to her during her final days. But her grandmother could sense her granddaughter’s terrible fear.
That’s when her grandmother took her by the hand and, unafraid, reminded Authers, “Death is part of life. You, too, will be where I am someday, and you can’t face death with fear,” she said. That changed everything. Seeing her grandmother bravely face death caused her own fears to dissolve. “I was no longer afraid of death and dying,” recalls Authers.
Authers ultimately left her job as an IBM marketing executive to become a caregiver. Through the years, she has found that faith is the most important quality among those who face death without fear. “People who have faith in something don’t grieve like those who have no hope,” said Authers.
Increasingly, however, Chin has found that Millennials — more than any other demographic — fear death the most.
“It’s the downside of social media,” said Chin. “The bombardment and speed of communication leads to an overload that can trigger a fear of death.”
Perhaps even the world of politics can play a role, suggests Sheldon Solomon, professor of psychology at Skidmore College and author of “The Worm at the Core: On the Role of Death in Life.”
In times of political upheaval— particularly when people are reminded of their mortality — the fear of death increases even as they tend to be attracted to political figures who promise them more security, said Solomon, who has conducted numerous experiments on this issue.
“When people are reminded of their own mortality, in an effort to bolster faith in their own view of reality, they become more hostile to anyone who is different.”
Even then, says Solomon, perhaps nothing alleviates a dying person’s fear of death more than love.
A terminally-ill grandmother he knew was distraught at the prospect of death. No doctor and no medicine could help her. Then, she received a short phone call from her granddaughter, begging her for her cupcake recipe. “No one can make them like you,” her granddaughter said.
“That call did more in five minutes than anything else could have,’” says Solomon. “It reminded the grandmother that she will live on in the memories of the people she loves. That was all she needed to know.”
You might not be familiar with cost-sharing health care ministries, in which Christians voluntarily share each other’s medical expenses. But with health care such a hot topic across the nation right now, it’s time to look at this alternative health care option. “Health care sharing — inspired by the biblical call to ‘bear one another’s burdens’… (more…)
The number of California seniors who land in emergency rooms after falling has risen sharply in recent years, as their population grows and they live longer with more chronic illnesses often requiring an array of medications.
Some of the rise appears to be explained by the estimated 21 percent growth in the state’s senior population, from about 4.28 million in 2010 to 5.19 million in 2015, according to the California Department of Finance.
The ranks of people 85 and older, who account for one-third of all fall-related ER visits, are also swelling: That population grew by 19 percent in the same five-year period, according to the department’s data.
In addition to their growing numbers, older adults nationwide have multiple chronic diseases and are taking numerous medications, both of which can contribute to falling, according to the CDC. And elderly adults may have cognitive decline, poor balance, physical weakness, and deteriorated vision.
“These kinds of things really affect the oldest of the old,” said Jon Pynoos, professor of gerontology, policy and planning at the USC Leonard Davis School of Gerontology. “They are more prone to have complicated medical conditions.”
Nationwide, about 2.8 million older adults are treated in emergency departments each year for injuries caused by falling, and more than 800,000 are hospitalized because of them, according to the U.S. Centers for Disease Control and Prevention.
Medical costs associated with falls are more than $31 billion each year, with hospital care accounting for about two-thirds of those expenses, according to the CDC. About one-fifth of falls cause serious injuries.
Fall-related injuries are particularly worrisome because they can lead to other problems, including immobility and even premature death, said Ted Chan, chairman of the Department of Emergency Medicine at UC San Diego and a professor at the medical school there. Hip fractures, in particular, can lead to severe health problems, including blood clots in the legs and lungs, pneumonia and loss of muscle mass, which can increase the risk of falling again.
“It is often when the real decline really starts to happen,” Chan said. “They may never quite fully recover.”
He said elderly patients who have serious falls need to be seen in the emergency room because they may have significant injuries requiring immediate medical attention. Doctors also need to determine why they fell.
“It may not be that they just tripped over something,” Chan said. “It could be related to their heart or blood pressure.”
The number of visits to California emergency rooms by people over 65 who fell surged 38 percent from 167,785 in 2010 to 232,146 in 2015, according to data from the state’s Office of Statewide Health Planning and Development.
Certain groups are more likely to end up in the emergency room after a fall, including homeless people, nursing home residents, people who live alone, and those of very advanced age, said Pynoos, the USC gerontology professor.
Joanne Lynch, 86, fell about two years ago while she was outside at night watering the garden at her Sacramento home. She was living alone at the time.
“I went face first into the flower bed,” said Lynch, a retired hospital clerk.
A neighbor heard her yell and called 911. At the emergency room, doctors told her she had broken her wrist. Going to the emergency room assured her she didn’t have an even more serious injury, she said.
“You can have a lot of things wrong with you internally that you don’t even know,” she said. “Peace of mind to an older person is worth more than anything else.”
Some counties saw sharper increases than others in the number of fall-related emergency room visits by seniors. From 2010 to 2015, the number rose 54 percent in San Bernardino County, 47 percent in San Diego County and 31 percent in Los Angeles County.
The problem could worsen, as 10,000 baby boomers turn 65 every day in the United States.
The CDC urges older adults to talk to their doctors about whether their medications could make them dizzy or sleepy. The agency also recommends seniors build up their strength through exercise or physical therapy, get their eyes checked regularly and ensure their homes are free of hazards that could trip them. The agency also encourages medical providers to screen patients for the risk of falling.
The easiest thing is to call their offices directly, but if you have no idea how to go about that, dial 202-224-3121, which will direct you to the Capitol switchboard. When you call, ask to be connected to your senator or representative. That part is easy enough.
When you call, ask for a Legislative Assistant or LA, who are the people responsible for supplying senators with information on issues and briefing them before upcoming votes. Each LA covers a subset of issues (e.g. health care, veterans’ affairs, education, etc.).
If you call repeatedly and keep asking for the LA (and get their name from the front office), let them know you are a constituent. Leave your name and address—then they know you’re serious. They should eventually talk to you—persistence is rewarded—but expect to have to call multiple times.
If you can’t get to an LA or congressional aide, leave a message with the receptionist regarding what prompted your call. Again, leave your name and address. Call again.
Know your facts.
Things to remember when calling your representative
Be sure you have basic information about what prompted your call in front of you, being as specific as possible about your topic.
State your opinion on what your legislator should do, if you know how you want him/her to vote.
Mention your experience on the issue you’re calling about. It will help establish your credibility and may prompt the aide to ask more questions for guidance.
Be brief. Especially right now, aides receive a large number of calls every day. Be respectful of their time.
Be timely when you call. If the vote on your issue is imminent, they’re more likely to pay attention to what you have to say.
Hello. My name is______________ and I’m one of your constituents. I am calling to advise (Senator_______ or Representative_________) that family caregivers in this country are in crisis . With the ACA bill coming up for a vote, I feel my senator/representative needs to be aware that there are an estimated 65.7 million American adult family caregivers who are not receiving any assistance under the present healthcare system and feel this issue needs immediate attention so it can be included in the bill. The estimated value of family care on an annual basis to the government is $450 billion. We can’t afford to be neglected any longer. Thank you.
Of course you can add your personal circumstances, but be as brief as possible. If you feel the need to provide more information than a brief call allows, you can always write a letter. There are guides on how to do this effectively online.
Hope this brief guide helps. Make your voice heard!
Featured image: WASHINGTON DC – FEBRUARY 3, 2015: Senator and Presidential candidate Ted Cruz speaks to constituents at a meeting at the United States Capitol. Editorial credit: stock_photo_world / Shutterstock.com
When Dan Bawden teaches contractors and builders about aging-in-place, he has them get into a wheelchair. See what it’s like to try to do things from this perspective, he tells them.
That’s when previously unappreciated obstacles snap into focus.
Bathroom doorways are too narrow to get through. Hallways don’t allow enough room to turn around. Light switches are too high and electrical outlets too low to reach easily. Cabinets beneath a kitchen sink prevent someone from rolling up close and doing the dishes.
It’s an “aha moment” for most of his students, who’ve never actually experienced these kinds of limitations or realized so keenly how home design can interfere with — or promote — an individual’s functioning.
That number is set to swell with the aging population: Twenty years from now, 17 million U.S. households will include at least one mobility-challenged older adult, according to a December report from Harvard University’s Joint Center for Housing Studies.
How well has the housing industry accommodated this population?
“Very poorly,” said Bawden, chair of the remodelers division at the National Association of Home Builders and president of Legal Eagle Contractors in Bellaire, Texas. “I give them a D.”
Researchers at the Harvard center found that fewer than 10 percent of seniors live in homes or apartments outfitted with basic features that enhance accessibility — notably, entrances without steps, extra-wide hallways or doors needed for people with wheelchairs or walkers.
Even less common are features that promote “usability” — carrying out the activities of daily life with a measure of ease and independence.
Laws that guarantee accessibility for people with disabilities go only so far. The Americans with Disability Act applies only to public buildings. And while the Fair Housing Act covers apartments and condominiums built after March 1991, its requirements aren’t comprehensive and enforcement is spotty.
We asked several experts to describe some common issues mobility-challenged seniors encounter at home, and how they can be addressed. The list below is what they suggested may need attention and has suggested alterations, but is not comprehensive.
Getting inside. A ramp will be needed for homes with steps leading up to the front or back door when someone uses a wheelchair, either permanently or temporarily. The estimated price for a five-to-six foot portable nonslip version: $500 to $600.
You’ll want to take out the weather strip at the bottom of the front door and replace it with an automatic door bottom. “You want the threshold to be as flat as the floor is,” Bawden said. Consider installing an electronic lock that prevents the need to lean in and insert a key.
Doors. Getting through doorways easily is a problem for people who use walkers or wheelchairs. They should be 34 to 36 inches wide to allow easy access, but almost never are.
Widening a doorway structurally is expensive, with an estimated cost of about $2,500. A reasonable alternative: swing-free hinges, which wrap around the door trim and add about 2 inches of clearance to a door.
Clearance. Ideally, people using wheelchairs need a five-foot-wide path in which to move and turn around, Bawden said. Often that requires getting rid of furniture in the living room, dining room and bedroom.
Another rule of thumb: People in wheelchairs have a reach of 24 to 48 inches. That means they won’t be able to reach items in cabinets above kitchen counters or bathroom sinks.
Also, light switches on walls will need to be placed no more than 48 inches from the floor and electrical outlets raised to 18 inches from their usual 14 inch height.
Older eyes need more light and distinct contrasts to see well. A single light fixture hanging from the center of the dining room or kitchen probably won’t offer enough illumination.
You’ll want to distribute lighting throughout each room and consider repainting walls so their colors contrast sharply with your floor materials.
“If someone can afford it, I put in recessed LED lights in all four corners of the bedroom and the living room and install closet rods with LED lights on them,” Bawden said. LED lights don’t need to be changed as often as regular bulbs.
Kitchen. Mark Lichter, director of the architecture program for Paralyzed Veterans of America, recommends that seniors who use walkers or wheelchairs take time in the kitchen of a unit they’re thinking of moving into and imagine preparing a meal.
Typically, cabinets need to be taken out from under the sink, to allow someone with a wheelchair to get up close, Lichter said. The same is true for the stovetop: The area underneath needs to be opened and control panels need to be in front.
Refrigerators with side-by-side doors are preferable to those with freezer areas on the bottom or on top. Slide out full-extension drawers maximize storage space, as can lazy Susans in the corner of bottom cabinets.
Laundry. Get a side-by-side front-loading washer and drier to allow for easy access, instead of machines that are stacked on top of each other.
Bathroom. When Jon Pynoos’ frail father-in-law, Harry, who was in his 80s, came to live in a small cottage in back of his house, Pynoos put in a curbless shower with grab bars and a shower seat and a handheld shower head that slid up and down on a pole.
Even a relatively small lip at the edge of the shower can be a fall risk for someone whose balance or movement is compromised.
Also, Pynoos, a professor of gerontology, public policy and urban planning at the University of Southern California, installed nonslip floor tile and grab bars around a “comfort height” toilet.
Cabinets under the sink will need to be removed, and storage space for toiletries moved lower. A moveable toilet paper holder will be better than a wall-based unit for someone with arthritis who has trouble extending an arm sideways.
“It really wouldn’t take much effort or expense to design homes and apartments appropriately in the first place, to make aging-in-place possible,” Pynoos said. Although “this still doesn’t happen very often,” he noted that awareness of what’s required is growing and well-designed, affordable products are becoming more widely available.
KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation. 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 khn.org/columnists to submit your requests or tips.
Now we can treat it without making other symptoms worse
Half of people with Parkinson’s disease experience hallucinations, paranoia and delusions. Mary O’Hara reports on a new hope.
One night without warning, Jay Sagen leapt from his bed and grabbed the quilt, then ran downstairs and threw it out onto the street. He was certain there was a large black snake in it. His startled wife Diane hurried after him and tried to explain that nothing was there. “But he wasn’t listening to me trying to talk sense into him.”
Then Jay began seeing black cats everywhere in the house. He believed there were groups of people on the property at night too, and that a creature called Big Boy was in their bed with them. Sometimes, he believed he’d whiled away whole afternoons talking to his brother in the living room of their cosy California home south of Los Angeles.
He simply didn’t understand when Diane told him his brother was never there.
Jay, a 77-year-old artist, taught for decades at local community colleges. He was diagnosed with Parkinson’s disease in 2009 after a neurologist observed his tremors and other physical symptoms, including stiffness. Diane, a therapist now aged 73, was not scared: “We’ll deal with it, if that’s what it is,” she thought.
Preparing for the tough adjustment to life as the primary caregiver to a person with a neurodegenerative illness, Diane knew the disease was associated with health problems ranging from difficulty sleeping to tremors and slowing of movement. She also expected that it would take a toll on her time and energy as she assisted Jay with his physical impairments.
What she didn’t know – and what few people even within the medical and caring professions realise – is that over the course of their illness at least half of all people diagnosed with Parkinson’s disease will develop another set of symptoms known as Parkinson’s disease psychosis (PDP). The impact on the patient and their family – often because they don’t know what is happening – can be devastating.
Jay’s PDP symptoms began as frustrating, annoying behaviours. He would insist Diane was stealing from the family finances, for example, or accuse her of being unfaithful after 50-odd years of marriage. Eventually, the manifestations became more serious. He was increasingly seeing things and people that weren’t there. He was frightened. On one occasion Diane returned from work to learn Jay was in hospital. He’d fallen badly while charging out of the house because he had become convinced he was late for a party. “When I think back, that was disturbing,” she says. “I would think: ‘How bad is this going to get?’”
There was no answer to her question. PDP brings with it a number of serious related issues, such as a higher risk of premature death. To make matters worse, drugs for treating psychosis can heighten the physical symptoms of Parkinson’s disease. In recent months, however, a new drug has become available. It is the first of its kind and specifically treats psychosis without affecting other symptoms – but for people like Jay and Diane, questions about who the drug might help, who can get access to it, and how much it costs now loom large.
“Parkinson’s is pretty easily recognised. People are slowed down, they’re bent over, they have a tremor and we think of it as a motor disorder – which it is,” explains Dr Jeffrey Cummings, Director of the Cleveland Clinic Lou Ruvo Center for Brain Health in Las Vegas and a leading authority on Parkinson’s and PDP. “But people aren’t often familiar with the non-motor components of Parkinson’s disease, including depression [and] psychosis.”
Between 7 and 10 million people are estimated to have Parkinson’s disease worldwide – 1m in the USA and more than 100,000 in the UK. This means several million people will also develop PDP and experience sometimes debilitating delusions and hallucinations. Yet while experts acknowledge that general awareness of the motor symptoms of Parkinson’s is high (certainly in the USA, where the launch of a foundation by actor Michael J Fox after his diagnosis propelled it into the limelight), PDP remains largely hidden, misunderstood and undertreated.
Dr Rachel Dolhun, Vice-president of Medical Communications at the Michael J Fox Foundation, points out that it can be difficult for people to make the connection between PDP symptoms and Parkinson’s, and to talk openly about it. “I think the difficulty is that PDP has symptoms that people don’t recognise, that they don’t bring up to their doctors and to their caregivers because they don’t realise it’s a problem… they’re afraid they’re going crazy or they think there’s not a treatment for it. Even the fact that it is defined as psychosis is a scary thing.”
Reassuring people that it is part of the disease is a big issue, she adds. “It can happen and there are things that we can do – but we can’t do anything if you don’t tell us about it.”
It isn’t clear exactly what causes it, but the psychosis can stem from either the underlying Parkinson’s disease (mostly among those who have lived with it for a long time) or the medication used to treat it. Drugs prescribed to alleviate the motor symptoms of Parkinson’s work by replenishing dopamine, the brain chemical that is diminished in people with the disease. The problem is that while this can reduce motor symptoms, increasing dopamine can overstimulate other parts of the brain and cause psychosis.
Meanwhile the medications used to date to treat psychosis symptoms – drugs such as clozapine – act by blocking the dopamine system, which tends to worsen motor problems as well as run the risk of serious side-effects.
Cummings sums it up this way: “The great paradox is that the drugs that improve psychosis make Parkinson’s worse. And so we just have not had a good alternative for our patients in terms of controlling psychosis.”
Diane Sagen perches on the sofa in the living room of her house in a tranquil cul-de-sac near Newport Beach. She has a stack of notes in her hands – pages from a diary she’s kept to chronicle the progression of Jay’s illness. By her side, propped up on a cushion, is a screen with live video streaming from the bedroom so she can keep an eye on her husband while he rests.
“[I’m] always being vigilant in case he falls, which he does a lot,” she says. “I’m very hypervigilant. Every now and again you can’t take it any more and you’ll turn [the vigilance] off and then something will happen.”
Diane has had intermittent support for Jay, such as care assistants, without which she says she would struggle to cope. While we are talking, she takes an unexpected call from a healthcare worker who confirms the couple have qualified for some new respite care through Medicare, the federal health insurance programme for retired people. Putting down the phone she takes a long, deep breath and says to herself: “Oh that’s great.”
Without this kind of help what would she do? “I don’t know. Go out of my mind. I would just be totally worn out.”
Diane says online groups have helped her to support others in similar circumstances – especially on the worst days – and to receive support in return. She is active in carers’ groups and puts herself forward for interviews like this one to raise people’s awareness. But even with her resolve to make the most of things, and given that from time to time there are glimpses of the Jay she fell in love with, she confesses it has been getting tougher as time has gone on. Physical exhaustion is one repercussion of assisting Jay day in, day out with his mobility.
But in the absence of unlimited funds to pay for help full-time, she says, it’s a mounting effort. Loneliness is a particularly challenging aspect of the caregiving role too. “You just want to escape, basically. It really is 24 hours a day of caring. And if you don’t get away occasionally, you know, you suddenly wake up and realise you are under water.
“That’s the big thing with this. It’s that feeling of isolation you get,” she says. “Nobody understands. They don’t know how hard it is. If you’ve had enough sleep you can separate yourself and say, ‘OK, it’s the disease.’ If you’re not feeling rested, you’re like, ‘Oh my god, I’m gonna kill this man.’”
Coming back downstairs at one point after checking on Jay, Diane explains why she has been speaking out about PDP. “This is what was handed to me. I guess I feel a responsibility. I’m glad to have that voice.”
Pressure on marriages and other relationships are recurring characteristics of living with PDP, not least because paranoia about infidelity features so highly. Dr Jim Beck, Vice-president of Scientific Affairs at the Parkinson’s Disease Foundation in the USA, says the “ripple effect” on the wider family and loved ones is significant. “The psychosis, as it gets more severe, can be really disruptive for relationships and for caregivers. That’s the number one reason people with Parkinson’s enter nursing homes. It’s because of psychosis.”
And because the symptoms are so complex and challenging to manage, once someone experiencing psychosis is placed in a nursing home, they are highly likely to remain there permanently. A drug that treats the symptoms of psychosis without making the physical symptoms of Parkinson’s worse is something that medical professionals and those affected by PDP have long hoped for. They know it would have a massive impact on the quality of life of people with Parkinson’s and their carers.
Elaine Casavant is a longstanding advocate on behalf of people with PDP and their families. A former nurse, she is a member of the People with Parkinson’s Advisory Council, which guides the work of the Parkinson’s Disease Foundation and speaks all across the USA on the subject. She says the difficulties of living with and treating PDP should be much more visible and a higher priority for policymakers, researchers and medics.
Elaine’s husband Len was diagnosed with Parkinson’s in the early 1990s when he was in his mid-40s. His psychosis symptoms, initially wrongly diagnosed as dementia, have waned at times as some medications and interventions, such as deep brain stimulation, have produced temporary relief. But on the whole, she says, the accusations of infidelity and the delusions and hallucinations have taken their toll. “They’re odd, they’re hurtful, they’re frightening,” she says.
One night, Len got up thinking children were playing in his room. Elaine heard him shouting in the night and ran into the room. But Len had strung an extension cord across the doorway. As she tripped and fell, he started yelling: “Elaine, Elaine, I’ve got one!”
Watching her husband suffer has at times felt relentless. “Sometimes I feel like I’m a prisoner in my own household. No matter how many times you correct or fix or clean up, tomorrow is going to be the same if not worse.”
Over the years Elaine has heard the same frustrations from people in similar circumstances, and that the strain is often unbearable. She has also been highlighting through her personal experience and activism the glaring absence of any effective treatment to target PDP. But that absence may soon be over.
On 29 April 2016, the US Food and Drug Administration (FDA) approved the first ever drug to specifically treat delusions and hallucinations associated with PDP. Trials showed the medication – brand name Nuplazid and from the compound pimavanserin – eased the symptoms of the condition without the same negative effects on motor symptoms as other antipsychotic drugs. This is because the new drug, from the San Diego-based pharmaceutical firm Acadia, doesn’t act on dopamine in the brain.
In fact, it is the first example of a class of drugs called selective serotonin inverse agonists, and is being touted by Acadia as a “breakthrough therapy”. “It does not work on the dopamine receptors. It works on the serotonin pathways,” explains Rachel Dolhun. “So it has this new mechanism of action.”
Jeffrey Cummings, a lead researcher on the trial, says that after a long time spent searching for a compound that would relieve symptoms of hallucinations and delusions in people with Parkinson’s, the new drug is a game changer. “It’s a breakthrough compound because not only have we not had any treatment for psychosis in Parkinson’s disease, we haven’t had treatment for psychosis in any neurological disease.”
The arrival of Nuplazid is “a big deal” for people with PDP as well as for their loved ones if the burden of care can be reduced, says Jim Beck: “Having a drug which doesn’t interfere with motor symptoms or other aspects of Parkinson’s yet has the potential to really address the psychosis – it’s really important.”
Ruth Ketcham was one of the people who took part in the trial. Her hallucinations had begun one year after her diagnosis with Parkinson’s. At first, her daughter Jody Wade explains, it was a belief that animals were in the house at night. “I believed her. I said, ‘What kind of animals?’” An exterminator confirmed there were none.
The alarm bells began ringing louder when Ruth started repeating a “kind of entertaining” story about the neighbours doing T’ai Chi in the garden every morning at daybreak. “Again, I believed it,” says Jody. “She described people in amazing detail and the detail never changed.” Only after Jody stayed overnight at the house did she realise it was an elaborate hallucination.
After being made aware by her specialist of the phase III trial of pimavanserin, Ruth agreed to take part. “I have to say – and I didn’t say this to my mother – I really wasn’t that hopeful,” Jody admits. “She had a 50/50 shot of getting the placebo. But you know what? It was worth a shot. There was nothing else that was going to help her.”
More than five years later, and now 93, Ruth is still taking the drug and the outcome has been dramatic for the whole family. “I remember going back to the doctor with my mother and just being absolutely elated,” says Jody, welling up. She told the doctor that her mother had obviously got the real drug. “The doctor said: ‘You don’t know that.’ But I said: ‘Yeah. But I do know that.’” Within weeks, the hallucinations had drastically reduced, and while there are some mild symptoms now and again, they are nothing like before.
“I ask my mother: ‘What does this mean to you? What do you take away from this?’ And she says: ‘It gave me a normal life back.’ Five years later I still cry talking about it. It gave us years with my mother that we wouldn’t have had.”
Like any drug, Nuplazid has various possible side-effects. Adverse reactions recorded in the trials included a small number of participants experiencing nausea, constipation and confusion – luckily, Ruth has experienced none of them.
Elaine Casavant cautions that drugs don’t work in the same way for everyone, but also that people aren’t always able to access medication when it has been approved, for example if health insurance doesn’t cover it, or if they are poor. Drugs don’t come cheap in the USA, especially branded ones.
“Most people dealing with this are exactly like me, living on a fixed income and already paying for medications,” she says. “I’m in the process of negotiating the insurance [for a Nuplazid prescription]. It’s a matter of negotiating a rate we can afford. But again, I’d be willing to pay out of pocket to get this drug as soon as I can get it.”
In early September, a few weeks into Jay Sagen’s first prescription of Nuplazid, Diane noted some positive signs in her diary. “It’s sort of sporadic,” she confirmed. “He’ll have a couple of days with no delusions, then a day with lots of them. I notice a difference though. He’ll point to what he thinks is a man (usually in the mirror) and say something about him. All it takes is for me to say, ‘There’s no man,’ and he’ll say, ‘Oh,’ and drop it. So he’s easier to bring around to reality than he was.”
A month later, in a further update, she explained that things were continuing to improve: “The Nuplazid is working really well now. He only sees the occasional phantom person now.”
For now, Nuplazid is only available in the USA. While Acadia pushes for wider distribution and informs medical professionals on developments, plus makes moves to have it approved in other markets such as Europe, millions of people with PDP will have to wait to see if this potentially transformative compound will work for them.
So what’s next? That a new therapy has been approved is understandably welcome, but it is far from the end of the suffering, not least because the causes of Parkinson’s disease are still not well understood and a cure is nowhere on the horizon.
However, Rachel Dolhun says that for the first time a variety of “really exciting” therapies could be on course to offer relief for people with Parkinson’s in general, and also for those with PDP. Some might even be available in less than two years. Most of these potential new therapies are in the early stages of trials but, she says, the possibilities are nonetheless significant: “Knowing that there’s research going on into understanding Parkinson’s better, developing better and newer treatments, and finding a cure is certainly reason for optimism.”
Jeffrey Cummings too is hopeful. He thinks the step forward with pimavanserin could blaze a trail for others like it and says he’s already being approached by drug companies interested in further research following the trials that brought Nuplazid to market.
“This is a paradigm shift in terms of opening up the field. To say: ‘Yes, we are beginning to know enough about the underlying biology of these symptoms that we can intervene more effectively.’ And it won’t be just Parkinson’s. This is a gateway to more effective neuropsychiatric interventions.”
In the meantime, caregivers like Jody Wade, Elaine Casavant and Diane Sagen understand what it’s like to be on the frontline of PDP. They would all like a cure for their loved ones, of course, but in its absence they say better support, such as more respite for patients and caregivers to help navigate the condition’s unique challenges, is vital. Raising awareness is crucial too, not only so that people are diagnosed and treated, but also because research funding may follow.
According to Jim Beck, educating the wider population about PDP is paramount. “I think this really speaks to the heart of the matter – that this is something that is just not spoken about.”
“You would not believe the people living in isolation with this,” concludes Elaine. “They have no backup, they have no support.” Jody agrees: “Too many people suffer in silence.”
On 20 October 2016, Jay Sagen died suddenly after having a heart attack. Diane requested that their experiences with PDP continue to be published.
In the seven months since California’s aid-in-dying law took effect, Dr. Lonny Shavelson has helped nearly two dozen terminally ill people end their lives with lethal drugs — but only, he says, because too few others would.
Shavelson, director of a Berkeley, Calif. consulting clinic, said he has heard from more than 200 patients, including dozens who were stunned to learn that local health care providers refused to participate in the state’s End of Life Options Act.
“Those are the ones who could find me,” said Shavelson, who heads Bay Area End of Life Options and is a longtime advocate of assisted suicide. “Lack of access is much more profound than anyone is talking about.”
Across California — and in the five other states where medical aid-in-dying is now allowed — access is not guaranteed, advocates say. Hospitals, health systems and individual doctors are not obligated to prescribe or dispense drugs to induce death, and many choose not to.
Most of the resistance comes from faith-based systems. The Catholic Church has long opposed aid-in-dying laws as a violation of church directives for ethical care. But some secular hospitals and other providers also have declined.
In Colorado, where the nation’s latest aid-in-dying law took effect last month, health systems covering nearly third of hospitals in the state, plus scores of clinics, are refusing to participate, according to a recent STAT report.
Even in Oregon, which enacted the first Death with Dignity law in 1997, parts of the state have no providers willing or able to dispense the lethal drugs for 100 miles, said officials with Compassion & Choices, a nonprofit group that backs aid-in-dying laws.
In Washington state, where the practice was legalized in 2009, a Seattle hospice patient with advanced brain cancer was denied access to willing providers, so he shot himself in the bathtub, according to a 2014 complaint filed with the state health department.“That’s why we still have active access campaigns in Oregon, even after 20 years,” said Matt Whitaker, the group’s state director for California and Oregon. “It becomes a challenge that causes us to have to remain extremely vigilant.”
“Refusing to provide information or appropriate referrals directly led to the unnecessarily violent death of this patient,” said the complaint filed by an anonymous hospice nurse. “I strongly believe this constitutes patient abandonment.”
The stance was also devastating for Annette Schiller, 94, of Palm Desert, Calif., who was diagnosed with terminal thyroid and breast cancer and wanted lethal drugs.
“Almost all of her days were bad days,” recalled Linda Fitzgerald, Schiller’s daughter. “She said, ‘I want to do it.’ She was determined.”
“I thought it was going to be very simple and they would help us,” said Linda Fitzgerald. “Everything came up empty down here.”
Opponents of aid-in-dying cite providers’ reluctance as evidence that the laws are flawed and the practice is repugnant to a profession trained to heal.
“People consider it a breaking of professional integrity,” said Dr. David Stevens, chief executive of Christian Medical & Dental Associations, which has worked to stop or overturn aid-in-dying laws in several states.
But the decisions can effectively isolate entire regions from access to laws overwhelmingly approved by voters, advocates said.
In California’s Coachella Valley, an area that includes Palm Springs, the three largest hospitals — Eisenhower Medical Center, Desert Regional Medical Center and John F. Kennedy Memorial Hospital — all opted out of the new state law. Affiliated doctors can’t use hospital premises, resources or systems in connection with aid-in-dying, officials said.
“Eisenhower’s mission recognizes that death is a natural stage of the life journey and Eisenhower will not intentionally hasten it,” Dr. Alan Williamson, vice president of medical affairs of the non-profit hospital, said in a statement.
Doctors may provide information, refer patients to other sources or prescribe lethal drugs privately, Williamson said.
“All we have done is say it can’t be done in our facility,” he added.
In practice, however, the decision has had a chilling effect, said Dr. Howard Cohen, a Palm Springs hospice doctor whose firm also prohibits him from writing aid-in-dying prescriptions or serving as an attending physician.
Patients eligible for aid-in-dying laws include terminally-ill adults with six months or less to live, who are mentally competent and can administer and ingest lethal medications themselves. Two doctors must verify they meet the qualifications.“They may be free to write for it, but most of them work a full day. When and how are they going to write for it?” he said. “I don’t know of anyone here who is participating.”
Many individual doctors in California remain reluctant to participate because of misunderstandings about what the law requires, said Dr. Jay W. Lee, past president of the California Academy of Family Physicians.
“I believe that there is still a strong taboo against talking about death openly in the medical community. It feels like a threat to what we are trained to do: preserve and extend life,” Lee said, adding that doctors have a moral obligation to address end-of-life concerns.
There’s no single list of doctors willing to prescribe life-ending drugs, though Compassion & Choices does offer a search tool to find participating health systems.
“They don’t want to be known as the ‘death docs,’” said Shavelson, who has supervised 22 deaths and accepted 18 other people who were eligible to use the law but died before they could, most within a required 15-day waiting period.
Officials with Compassion & Choices said past experience indicates that more providers will sign on as they become more familiar with the laws and their requirements.
At least one California provider, Huntington Hospital in Pasadena, originally said it wouldn’t participate in the law, but later changed its position.
Other health systems have opted to not only participate, but also to help patients navigate the rules. Kaiser Permanente, which operates in California and Colorado, has assisted several patients, including Annette Schiller, who switched her supplemental insurance to Kaiser to receive the care.
Within weeks, Schiller was examined by two doctors who confirmed that she was terminally ill and mentally competent. She received a prescription for the lethal drugs and on Aug. 17, ate a half-cup of applesauce mixed with Seconal, a powerful sedative.
“Within 20 seconds, she fell asleep,” Fitzgerald recalled. “Within a really short time, she stopped breathing. It was amazingly peaceful.”
We have a huge, vibrant community of caregivers. People are experiencing a whole range of emotions about the changes happening to the health insurance landscape in the US.
Regardless of who you voted for (if you voted), I bet you want affordable, quality health care for yourself and your family. We all have that in common.
In fact, as caregivers, we have a lot in common, despite how different we might be outside of the caregiving world.
We can’t support each other if we’re busy tearing each other down.
The Caregiver Space isn’t an organization with a staff of writers and social workers and web developers. It’s a community. This is a place by caregivers, for caregivers. The articles are written by you. The support groups are run by you. You answer the questions people post in the forums. You decide what this community looks like…or if we have a community at all.
We have less than a quarter of a million people in our community at The Caregiver Space, which is a tiny fraction of the caregivers in the US…and an even tinier fraction of caregivers around the world.
There are over 34 million informal caregivers in the US. There are several million professional caregivers in the US. And there are many millions of other English speaking caregivers around the world.
That’s a lot of different people, in different situations, with different hopes and dreams and ideals.
The cool thing about the time when a bill is being written is that it’s an opportunity to contact our representatives and ask for the things we need as caregivers.
If you’re worried about what’s going to happen, call your representatives and let them know. Facebook posts don’t change things.
If you’re happy with the new changes, call your representatives and let them know. They would love to hear that.
The thing is, no politician has been talking about how they’re going to help caregivers. With all the talk about patients and healthcare, we’re still not even on their radar. We have to ask for the help we need or we’ll never get it.
WASHINGTON — House Speaker Paul Ryan says the Affordable Care Act is in a “death spiral,” but his party’s repeal legislation could be the spark that causes insurance markets to unravel in certain areas of the country, according to a new analysis. In the insurance industry, a “death spiral” happens when people begin to drop individual… (more…)
The House GOP plan to replace Obamacare survived its first week on Capitol Hill, but everyone from the AARP to the American Lung Association is lining up against the plan, suggesting the tough road Republicans have ahead of them. The AARP says the bill increases the “age tax” on older Americans by allowing insurers to charge… (more…)
End-of-life counseling sessions, once decried by some conservative Republicans as “death panels,” gained steam among Medicare patients in 2016, the first year doctors could charge the federal program for the service.
Nearly 14,000 providers billed almost $35 million — including nearly $16 million paid by Medicare — for advance care planning conversations for about 223,000 patients from January through June, according to data released this week by the Centers for Medicare & Medicaid Services. Full-year figures won’t be available until July, but use appears to be higher than anticipated.
Controversy is threatening to reemerge in Congress over the funding, which pays doctors to counsel some 57 million Medicare patients on end-of-life treatment preferences. Rep. Steve King (R-Iowa) introduced a bill last month, the Protecting Life Until Natural Death Act, which would revoke Medicare reimbursement for the sessions, which he called a “yet another life-devaluing policy.”
“Allowing the federal government to marry its need to save dollars with the promotion of end-of-life counseling is not in the interest of millions of Americans who were promised life-sustaining care in their older years,” King said on Jan. 11.
While the fate of King’s bill is highly uncertain — the recently proposed measure hasn’t seen congressional action — it underscores deep feelings among conservatives who have long opposed such counseling and may seek to remove it from Medicare should Republicans attempt to make other changes to the entitlement program.
Proponents of advance care planning, however, cheered evidence of the program’s early use as a sign of growing interest in late-stage life planning.
“It’s great to hear that almost a quarter-million people had an advance care planning conversation in the first six months of 2016,” said Paul Malley, president of Aging With Dignity, a Florida nonprofit. “I do think the billing makes a difference. I think it puts it on the radar of more physicians.”
Use of the counseling sessions is on track to outpace an estimate by the American Medical Association, which projected that about 300,000 patients would receive the service in the first year, according to the group, which backed the rule.
Providers in California, New York and Florida led use of the policy that pays about $86 a session for the first 30-minute office-based visit and about $75 per visit for any additional sessions.
The rule requires no specific diagnosis and sets no guidelines for the end-of-life discussions. Conversations center on medical directives and treatment preferences, including hospice enrollment and the desire for care if patients lose the ability to make their own decisions.
The new reimbursement led Dr. Peter Sutherland, a family medicine physician in Morristown, Tenn., to schedule more end-of-life conversations with patients last year.
“They were very few and far between before,” he said. “They were usually hospice-specific.”
Now, he said, he has time to have thorough discussions with patients, including a 60-year-old woman whose recent complaints of back and shoulder pain turned out to be cancer that had metastasized to her lungs. In early January, he talked with an 84-year-old woman with Stage IV breast cancer.
“She didn’t understand what a living will was,” Sutherland said. “We went through all that. I had her daughter with her and we went through it all.”
The conversations may occur during annual wellness exams, in separate office visits or in hospitals. Nurse practitioners and physicians’ assistants may also seek payment for end-of-life talks.
The idea of letting Medicare reimburse such conversations was first introduced in 2009 during debate on the Affordable Care Act. The issue quickly fueled allegations by some conservative politicians, such as former Republican vice presidential candidate Sarah Palin and presidential candidate John McCain, that they would lead to “death panels” that could disrupt care for elderly and disabled patients.
The idea was dropped “as a direct result of public outcry,” King said in a statement.
“The worldview behind the policy has not changed since then, and government control over this intimate choice is still intolerable to those who respect the dignity of human life,” he said.
But in 2015, CMS officials quietly issued the new rule allowing Medicare reimbursement as a way to improve patients’ ability to make decisions about their care.
End-of-life conversations have occurred in the past but not as often as they should, Malley said. Many doctors aren’t trained to have such discussions and find them difficult to initiate.
“For a lot of health providers, we hear the concern that this is not why patients come to us,” Malley said. “They come to us looking to be cured, for hope. And it’s sensitive to talk about what happens if we can’t cure you.”
A 2014 report by the Institute of Medicine, a panel of medical experts, concluded that Americans need more help navigating end-of-life decisions. A 2015 Kaiser Family Foundation poll found that 89 percent of people surveyed said health care providers should discuss such issues with patients, but only 17 percent had had those talks themselves. (KHN is an editorially independent program of the foundation.)
Use of the new rule was limited in the first six months of 2016. In California, which recorded the highest Medicare payments, about 1,300 providers provided nearly 29,000 services to about 24,000 patients at an overall cost of about $4.4 million — including about $1.9 million paid by Medicare.
The data likely reflect early adopters who were already having the talks and quickly integrated the new billing codes into their practices, said Dr. Ravi Parikh, an internal medicine resident at Brigham and Women’s Hospital in Boston, who has written about advance care planning. Many others still aren’t aware, he said.
Data from Athenahealth, a medical billing management service, found that only about 17 percent of 34,000 primary care providers at 2,000 practices billed for advance care planning in all of 2016.
The numbers will likely grow, said Malley, who noted that requests from doctors for advance care planning information tripled during the past year.
To counter objections, providers need to ensure that informed choice is at the heart of the newly reimbursed discussions.
“If advance care planning is only about saying no to care, then it should be revoked,” Malley said. “If it truly is about finding out patient preferences on their own turf, it’s a good thing.”
Imagine seniors walking around with stylish ear devices that amplify and clarify sound and connect wirelessly to smart phones, tablets, televisions and digital assistants such as Amazon’s Alexa or Apple’s Siri.
That day is coming, sooner than you may think.
Technology is already moving in this direction, and consumer marketers such as Samsung, Bose Corp., and Panasonic Corp. are reportedly readying new products of this kind.
They’ll be sold over the counter, to customers who will test their own hearing with cell phone apps or online programs and adjust sound parameters themselves.
The devices “will be widely used by older people,” just as earbuds are used by younger people today, predicted Richard Einhorn, a well-known composer who serves on the board of the Hearing Loss Association of America, a consumer group.
Recognizing market forces, the Food and Drug Administration is mobilizing. In December, Dr. Robert Califf, the FDA’s commissioner, said the agency planned to take “steps necessary to propose to modify our regulations to create a category of [over-the-counter] hearing aids.”
Last week, the Federal Trade Commission announced plans for a major meeting on hearing health care in April. That agency played an important role in ensuring that consumers get copies of eyeglass prescriptions so they could shop around for good deals. For the most part, that doesn’t happen with hearing aids today.
Whether agency priorities will change under the new Trump administration isn’t certain. But technology is developing rapidly under any circumstances.
Older adults with mild to moderate hearing loss, including aging baby boomers, are expected to be a prime market for a new generation of products marrying hearing aid and consumer electronics hearable technologies.
More than 40 percent of people over the age of 60 have some degree of hearing loss, mostly mild to moderate; that rises to 80 percent of people older than 80.
Yet only 20 percent of those with some degree of impairment use hearing aids because of their high cost (an average $4,700 per pair), the lack of insurance coverage (traditional Medicare doesn’t pay for hearing aids), stigma, denial and difficulty navigating the hearing health system.
Both organizations cite a growing body of research linked hearing loss to cognitive decline, depression, the onset of dementia, falls, poor physical functioning and social isolation. The longer people delay seeking help, research suggests, the more at risk they become.
Several recent developments are of note as consumer electronics companies, hearing aid manufacturers, audiologists, physicians, consumer advocates and regulators prepare for a surge of new hearing devices and changes in the hearing health care system:
For 40 years, the FDA has required that adults be examined by a doctor before purchasing a hearing aid or sign a waiver noting that they didn’t want to take this step. Last month, the agency eliminated that requirement for people over the age of 18.
The National Academies of Sciences’ expert panel on hearing health had noted that the rule “provides no clinically meaningful benefit” and could discourage people from seeking care. Instead of seeing a physician, adults signed the waiver 60 to 95 percent of the time.
Still, limits on access to hearing aids exist: All states restrict distribution of these devices to certified audiologists, physicians and device specialists. And some states still require medical evaluations.
Sens. Charles Grassley, R-Iowa, and Elizabeth Warren, D-Mass., said last month that they would soon introduce new legislation endorsing over-the-counter hearing aids, sold without those restrictions.
The goal is to increase competition, lower costs and expand access to devices for people with mild to moderate hearing loss, Grassley said in a prepared statement.
Currently, six companies control nearly 98 percent of the hearing aid market in the U.S., contributing to high prices. Nearly two-thirds of people with severe hearing loss — many of them elderly — report being unable to afford the devices. The cost is generally “bundled” with professional fees for evaluation, fitting and follow-up care.
Organizations representing hearing professionals are deeply divided.
The American Speech-Language-Hearing Association, an organization representing audiologists and speech-language pathologists, doesn’t believe consumers can adequately self-diagnose hearing problems and opposes over-the-counter devices.
The American Academy of Audiology, which represents more than 12,000 audiologists, believes professionals should evaluate hearing loss but is taking a “wait and see stance” until the FDA proposes a regulatory framework, its president, Ian Windmill, said.
Another audiologist group, the Academy of Doctors of Audiology, believes the benefits of expanded access to hearing devices outweigh the risks and supports over-the-counter products.
The senators plan to introduce their legislation, which asks the FDA to issue regulations ensuring the safety and effectiveness of these devices, in this new congressional session.
“Administrations shift and legal challenges occur,” Grassley said in a statement, adding that getting the law on the books would ensure needed “certainty going forward.”
One area of considerable confusion is the distinction between hearing aids and personal sound amplification products, known as PSAPs.
This is a wide category of products, ranging from cheap devices that help amplify sound to sophisticated devices that resemble hearing aids in all but their name. In some cases, companies are marketing the exact same device as a hearing aid and a PSAP, sold at different prices.
In 2009, the FDA drew a distinction between PSAPs and hearing aids based on their “intended use.” PSAPs were considered unregulated consumer electronics products for people with normal hearing who wanted to hear more sharply — for instance, during bird watching. Hearing aids were regulated and considered medical devices meant for people with hearing impairment.
But technological advances have brought the two categories closer. And it’s well understood that people with hearing loss are using PSAPs as a cheaper alternative to hearing aids.
Going forward, Stephanie Czuhajewski, executive director of the Academy of Doctors of Audiology, believes higher-end PSAPs will become over-the-counter hearing aids.
In the meantime, the Consumer Technology Association has prepared standards for PSAPs meant to make it easier for consumers to understand what they’re buying. The standards, which address issues such as maximum output, peak output and sound distortion, and are under review at the American National Standards Institute and could be published as early as next month.
“The intent is to provide a ‘Good Housekeeping Seal of Approval’ for PSAPs,” said Mead Killion, an audiologist who founded Etymotic Research, Inc., an Illinois company that manufactures hearing devices. Currently, there is no easy, standardized way to compare these devices.
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 khn.org/columnists to submit your requests or tips.
Having a child with cancer led to income reductions for parents and job discontinuation among mothers in a recent study, even after adjusting for pre-diagnosis sociodemographic factors. Published early online in CANCER, a peer-reviewed journal of the American Cancer Society, the findings indicate that childhood cancer affects parents’ income and employment for years after the child’s diagnosis, and that these effects are not equally distributed among mothers and fathers.
To investigate the short- and long-term effects of childhood cancer on mothers’ and fathers’ income and employment status, a team led by Emma Hovén, PhD, of the Karolinska Institutet in Sweden, studied 3626 parents of 1899 children diagnosed with cancer from 2004 to 2009 in Sweden. They were compared with a matched control group of 34,874 parents from the general population.
The researchers found that parents’ income from employment decreased significantly following a child’s cancer diagnosis, with an overall 21 percent reduction in mothers’ earnings and a 10 percent reduction in fathers’ earnings for the year of diagnosis when compared with control parents. The relative reduction in income of mothers was evident up to six years post-diagnosis, whereas fathers’ income was reduced for two years post-diagnosis. Also, mothers were less likely to remain employed following a child’s cancer when compared with control mothers, and this was evident at the year of diagnosis and up to five years later. Having a child with cancer did not affect fathers’ employment status.
“In addition to differences between mothers and fathers, we found that a younger age of parents; lower level education; and, among mothers, being born outside Sweden were associated with more adverse effects on income,” said Dr. Hovén. “Also, mothers with a higher income before the child’s cancer were found to have an equivalent income level to control mothers at four years after diagnosis, whereas more adverse effects were found for mothers with a lower baseline income.”
The findings indicate that healthcare providers and policy makers should take steps to facilitate successful merging of work and parenting responsibilities for parents of children diagnosed with cancer. “This could include providing extended support from social work teams at the hospitals to help parents navigate the practical and emotional challenges following a child’s cancer diagnosis,” said Dr. Hovén. “In particular, our findings show that more support and financial assistance should be advocated for young parents, mothers with a lower education, and mothers who were born in another country.”
Dr. Hovén also pointed out that in countries with less generous social security systems and less rigorous national regulations regarding work, parents of children with cancer may need to continue working to avoid financial hardship. In such societies, the reductions in income from employment may not be as pronounced if the parents are forced to continue working. On the other hand, in countries where parents do not have the legal right to reduce working hours, leaving work may be the only option for parents with an increased care burden.
Full Citation: “Short-Term and Long-Term Effects of Childhood Cancer on Parents’ Income From Employment and Employment Status: A National Cohort Study in Sweden.” Annika Lindahl Norberg, Scott Montgomery, Matteo Bottai, Mats Heyman, and Emma Hovén.CANCER; Published Online: November 21, 2016 (DOI: 10.1002/cncr.30436): http://doi.wiley.com/10.1002/cncr.30436
CANCER is a peer-reviewed publication of the American Cancer Society integrating scientific information from worldwide sources for all oncologic specialties. The objective of CANCER is to provide an interdisciplinary forum for the exchange of information among oncologic disciplines concerned with the etiology, course, and treatment of human cancer. CANCER is published on behalf of the American Cancer Society by Wiley and can be accessed online at http://wileyonlinelibrary.com/journal/cancer.
Wiley, a global company, helps people and organizations develop the skills and knowledge they need to succeed. Our online scientific, technical, medical, and scholarly journals, combined with our digital learning, assessment and certification solutions help universities, learned societies, businesses, governments and individuals increase the academic and professional impact of their work. For more than 200 years, we have delivered consistent performance to our stakeholders. The company’s website can be accessed at www.wiley.com.
Debbie Case held an insulated bag with two packaged meals — a sandwich wrap and fruit for lunch, a burrito and cauliflower for dinner.
“You’re going to eat well today,” Case told 75-year-old Dave Kelly as she handed him the meals. Kelly lost his sight about two years ago and reluctantly gave up cooking.
After putting the food away, Kelly chatted with Case about his experience as a folk musician. As they talked in his living room, Case, CEO of San Diego County’s Meals on Wheels program, glanced around for hazards that could cause Kelly to fall.
Kelly said the homemade meals keep him from eating too much frozen food or take-out. But more than that, he said he appreciates someone coming by to check on him every day.
“Anything could happen,” Kelly said, adding that he worries about falling. “I wouldn’t want to lay around and suffer for days.”
Meals on Wheels is undergoing a dramatic overhaul as government and philanthropic funding fails to keep pace with a rapidly growing elderly population. The increased demand has resulted in lengthy waitlists and a need to find other sources of funding. And at the same time, for-profit companies such as Mom’s Meals are creating more competition.
Meals on Wheels, which has served seniors for more than 60 years through a network of independent nonprofits, is trying to formalize the health and safety checks its volunteers already conduct during their daily home visits to seniors. Through an ongoing campaign dubbed “More Than a Meal,” the organization hopes to demonstrate that it can play a critical role in the health care system.
“We know we are keeping people out of the hospital,” Case said. “Seven dollars a day is cheaper than $1,300 a day.”
Meals on Wheels America and several of the local programs around the country have launched partnerships with insurers, hospitals and health systems. By reporting to providers any physical or mental changes they observe, volunteers can help improve seniors’ health and reduce unnecessary emergency room visits and nursing home placements, said Ellie Hollander, CEO of Meals on Wheels America.
“It’s a small investment for a big payoff,” Hollander said.
Studies conducted by Brown University researchers have shown that meal deliveries can help elderly people stay out of nursing homes, reduce falls and save states money.
Kali Thomas, an assistant professor at Brown University School of Public Health, estimated that if all states increased the number of older people receiving the meals by 1 percent, they would save more than $100 million. Research also has shown that the daily meal deliveries helped seniors’ mental health and eased their fears of being institutionalized.
Meals on Wheels can be the “eyes and ears” for health providers, especially in the case of seniors who are ill and don’t have family nearby, said Thomas, who authored several studies of the organization.
Meals on Wheels has “the potential to capitalize on that,” she said. “They realize they are doing something that is unique and needed in our current health care space.”
Visitors from Meals on Wheels are the only people some seniors see all day. The volunteers get to know them and can quickly recognize problems.
“You notice if they are losing weight, if their house is a mess, if they are talking awkwardly,” said Chris Baca, executive director of Meals on Wheels West in Santa Monica. “Our wellness check is critical and almost as important as the food itself.”
The meal delivery and in-home visits also reduce isolation among residents, said Zia Agha, chief medical officer for West Health, which has organizations that provide and study senior services. Agha said that while numerous high-tech gadgets are available to keep an eye on seniors, they can’t replace a volunteer’s human touch.
Meals on Wheels, Brown University and the West Health Institute recently launched a two-year project in six states to formally build health and safety screenings into daily meal deliveries. The goal is to improve seniors’ health and catch problems early.
“The fact that you don’t have resources to feed yourself or you are so frail you can’t cook is a very big marker that you are going to have high health care utilization,” Agha said. “There is value in targeting these clients through this meal delivery service.”
That’s also what Meals on Wheels America is planning to do in a new partnership with Johns Hopkins Bayview Medical Center and Meals on Wheels of Central Maryland. The project aims to keep seniors at home and reduce their need for costly health services after hospitalization. The idea is to have trained volunteers report red flags and ensure, for example, that patients with congestive heart failure are weighing themselves regularly and eating properly.
Dan Hale, who is leading the project from the hospital, said the meal delivery volunteers can help track patients’ health even months after discharge and keep them from returning to the hospital. “It makes sense financially,” he said.
Funding for Meals on Wheels organizations primarily comes from the federal government, state organizations and donors.
The partnerships with health care organizations and insurers mean additional money for the Los Angeles County programs, said Baca, who heads a countywide association of local Meals on Wheels organizations.
On a recent day in Santa Monica, volunteers showed up just after 10 a.m., loaded up their cars with meals and headed out to deliver them. One of the clients, 58-year old Patrick Ward, receives daily meals at his apartment in Venice.
Ward, who has osteoarthritis and knee problems, said he has fallen numerous times and also had a heart attack this year. He said he can take care of himself pretty well, but his lack of mobility makes cooking difficult.
“It takes one thing out of the day that I don’t have to worry about,” Ward said. “I know they are going to be here every day.”
One in three women with breast cancer detected by a mammogram is treated unnecessarily, because screening tests found tumors that are so slow-growing that they’re essentially harmless, according to a Danish study published Monday in Annals of Internal Medicine, which has renewed debate over the value of early detection.
The study raises the uncomfortable possibility that some women who believe their lives were saved by mammograms were actually harmed by cancer screenings that led to surgery, radiation and even chemotherapy that they didn’t need, said Dr. Otis Brawley, chief medical officer of the American Cancer Society, who wrote an accompanying editorial but was not involved in the study.
Researchers increasingly recognize that not all breast cancers pose the same risk, even if they look the same under a microscope, Brawley said. While some early tumors turn into deadly monsters, others stop growing or even shrink. But assuming that all small breast lesions have the potential to turn deadly is akin to “racial profiling,” Brawley wrote in his editorial.
“By treating all the cancers that we see, we are clearly saving some lives,” Brawley said in an interview. “But we’re also ‘curing’ some women who don’t need to be cured.”
Although experts such as Brawley have long discussed the risks posed by “overdiagnosis,” relatively few women who undergo cancer screenings are even aware of the debate.
The American College of Radiology, which strongly supports breast cancer screenings, acknowledges that mammograms lead some women to be treated unnecessarily, but said the problem is much less common than the new study suggests. Another study from Denmark – whose national health program keeps detailed records – estimated the overdiagnosis rates at only 2.3 percent.
“The amount of overdiagnosis really is small,” said Dr. Debra Monticciolo, chair of the American College of Radiology’s Commission on Breast Imaging. “Articles like this aren’t very helpful,” she said, because they leave women confused about how to be screened for breast cancer.
Yet treating women for cancer unnecessarily can endanger their health, said Fran Visco, president of the National Breast Cancer Coalition, an advocacy group. Radiation can damage the heart or even cause new cancers. Visco notes that breast cancer activist Carolina Hinestrosa, a vice president at the coalition, died at age 50 from soft-tissue sarcoma, a tumor caused by radiation used to treat an early breast cancer.
Women should understand these risks, Visco said. Instead, women often hear only about mammograms’ benefits.
“Women have been inundated with the early detection message for decades,” Visco said.
The risks of overdiagnosis and false positives, which can lead women with benign growths to undergo biopsies and other follow-up tests, have caused some experts to reevaluate breast cancer screenings. Although mammograms don’t find all tumors, they reduce the risk of dying from breast cancer by 25 percent to 31 percent for women ages 40 to 69, according to the Agency for Healthcare Research and Quality, part of the Department of Health and Human Services.
Medical groups now offer differing advice on mammograms:
The U.S. Preventive Services Task Force, an independent expert panel that advises the federal government on health, provoked a firestorm of criticism in 2009 when it bucked that advice, recommending that women get mammograms every other year beginning at age 50. The group noted that breast cancer risk rises with age, so mammograms are more likely to discover cancer – as opposed to benign growths – after age 50.
The American Cancer Society also scaled back its screening advice in 2015, recommending women get annual mammograms from 45 to 54, followed by screenings every other year after that.
In the new study, Danish researchers estimated the rate of overdiagnosis by comparing the number of early-stage and advanced breast tumors before and after the country started offering mammograms. If screenings work as intended, the number of small, curable breast tumors should increase, while reducing the number of large cancers by about the same amount.
Although mammograms in Denmark detected a lot more breast cancers, these were mostly small, early-stage tumors, said study coauthor Dr. Karsten Jorgensen, a researcher at the Nordic Cochrane Center in Copenhagen, Denmark. The number of advanced cancers did not fall.
The debate about overdiagnosis illustrates the limits of medical technology, Brawley said.
Although researchers can estimate the statistical rate of overdiagnosis, doctors treating actual patients can’t definitively tell which breast tumors need treatment and which might be safely ignored, Brawley said. So doctors tend to err on the side of caution and treat all breast cancers with surgery and, in many cases, radiation and chemotherapy.
An estimated 253,000 new cases of breast cancer will be diagnosed in U.S. women this year, with nearly 41,000 deaths, according to the American Cancer Society.
An additional 63,000 women will be diagnosed with ductal carcinoma in situ, also known as DCIS, which has some, but not all, of the typical traits of cancer. Although DCIS cells have changed to appear malignant under the microscope, they haven’t invaded surrounding tissue.
The American Cancer Society defines DCIS as the earliest stage of breast cancer, and women with the condition typically undergo the same treatment given to women with early invasive cancers. Although DCIS isn’t life-threatening, doctors recommend treating it to prevent it from becoming invasive.
Other experts note that DCIS carries such low risk that it should be considered merely a risk factor for cancer. Researchers are conducting studies to measure whether it’s safe to scale back treatment of DCIS.
A new analysis indicates that many cancer survivors change their prescription drug use (including skipping doses or requesting cheaper medications) for financial reasons. Published early online in CANCER, a peer-reviewed journal of the American Cancer Society, the study provides important information on the financial burden experienced by cancer survivors, suggesting non-elderly cancer survivors are particularly vulnerable to this phenomenon.
Although research has shown that cancer drugs can represent considerable costs for cancer patients and their families, there is limited information about changes in prescription drug use for financial reasons among cancer survivors. To further investigate this, researchers from the American Cancer Society, the Centers for Disease Control and Prevention (CDC), and the National Institutes of Health used 2011-2014 data from the National Health Interview Survey, an annual household interview survey conducted by the CDC. This nationally representative survey included 8931 cancer survivors and 126,287 individuals without a cancer history.
Among non-elderly adults, 31.6 percent of those who had been recently diagnosed and 27.9 percent of those who had been previously diagnosed (at least two years earlier) reported a change in prescription drug use for financial reasons, compared with 21.4 percent of adults without a history of cancer. “Specifically, non-elderly cancer survivors were more likely to skip medication, delay filling a prescription, ask their doctor for lower-cost medication, and use alternative therapies for financial reasons compared with non-elderly individuals without a cancer history,” said the American Cancer Society’s Ahmedin Jemal, DVM, PhD, a senior author of the paper. The study also showed that among privately insured non-elderly cancer survivors, one-third of survivors enrolled in high-deductible plans asked their doctor for lower-cost medications compared with less than one-fifth of survivors enrolled in low-deductible plans.
Changes in prescription drug use for financial reasons were generally similar between elderly cancer survivors and elderly individuals without a cancer history. This is likely because of uniform healthcare coverage through Medicare.
The findings may have significant policy implications. “Healthcare reforms addressing the financial burden of cancer among survivors, including the escalating cost of prescription drugs, should consider multiple comorbid conditions and high-deductible health plans, and the working poor,” said Dr. Jemal. “Our findings also have implications for doctor and patient communication about the financial burden of cancer when making treatment decisions, especially on the use of certain drugs that cost hundreds of thousands of dollars but with very small benefit compared with alternative and more affordable drugs.”
In an accompanying editorial addressing the financial toxicity of cancer, Daniel Goldstein, MD, of the Rabin Medical Center in Israel and Emory University, stressed the need to avoid unnecessary testing and treatments. He added that “when two different treatments exist with equivalent efficacy and safety, the cheaper treatment should always be chosen.”
Full Citation: “Do cancer survivors change their prescription drug use for financial reasons? Findings from a nationally representative sample in the United States.” Zhiyuan Zheng, Xuesong Han, Gery P. Guy Jr., Amy J. Davidoff, Chunyu Li, Matthew P. Banegas, Donatus U. Ekwueme, K. Robin Yabroff, and Ahmedin Jemal. CANCER; Published Online: February 20, 2017 (DOI: 10.1002/cncr.30560).
About the Journal CANCER is a peer-reviewed publication of the American Cancer Society integrating scientific information from worldwide sources for all oncologic specialties. The objective of CANCER is to provide an interdisciplinary forum for the exchange of information among oncologic disciplines concerned with the etiology, course, and treatment of human cancer. CANCER is published on behalf of the American Cancer Society by Wiley and can be accessed online at http://wileyonlinelibrary.com/journal/cancer.
About Wiley Wiley, a global company, helps people and organizations develop the skills and knowledge they need to succeed. Our online scientific, technical, medical, and scholarly journals, combined with our digital learning, assessment and certification solutions help universities, learned societies, businesses, governments and individuals increase the academic and professional impact of their work. For more than 200 years, we have delivered consistent performance to our stakeholders. The company’s website can be accessed at www.wiley.com.
Home health agencies will be required to become more responsive to patients and their caregivers under the first major overhaul of rules governing these organizations in almost 30 years.
The federal regulations, published last month, specify the conditions under which 12,600 home health agencies can participate in Medicare and Medicaid, serving more than 5 million seniors and younger adults with disabilities through these government programs.
They strengthen patients’ rights considerably and call for caregivers to be informed and engaged in plans for patients’ care. These are “real improvements,” said Rhonda Richards, a senior legislative representative at AARP.
Home health agencies also will be expected to coordinate all the services that patients receive and ensure that treatment regimens are explained clearly and in a timely fashion.
The new rules are set to go into effect in July, but they may be delayed as President Donald Trump’s administration reviews regulations that have been drafted or finalized but not yet implemented. The estimated cost of implementation, which home health agencies will shoulder: $293 million the first year and $234 million a year thereafter.
While industry lobbying could derail the regulations or send them back to the drawing board, that isn’t expected to happen, given substantial consensus with regard to their contents. More likely is a delay in the implementation date, which several industry groups plan to request.
“There are a lot of good things in these regulations, but if it takes agencies another six or 12 months to prepare let’s do that, because we all want to get this right,” said William Dombi, vice president for law at the National Association for Home Care & Hospice (NAHC).
Home health services under Medicare are available to seniors or younger adults with disabilities who are confined to home and have a need, certified by a physician, for intermittent skilled nursing services or therapy, often after a hip replacement, heart attack or a stroke.
Patients qualify when they have a need to improve functioning (such as regaining the strength to walk across a room) or maintain abilities (such as retaining the capacity to get up from a chair), even when improvement isn’t possible. These services are not for patients who need full-time care because they’re seriously ill or people who are dying.
Several changes laid forth in the new regulations have significant implications for older adults and their caregivers:
In the past, patients have been recipients of whatever services home health agencies deemed necessary, based on their staffs’ evaluations and input from physicians. It was a prescriptive “this is what you need and what we’ll give you” approach.
Now, patients will be asked what they feel comfortable doing and what they want to achieve, and care plans will be devised by agencies with their individual circumstances in mind.
“It’s much more of a ‘help me help you’ mentality,” said Diana Kornetti, an industry consultant and president of the home health section of the American Physical Therapy Association.
While some agencies have already adopted this approach, it’s going to be a “sea change” for many organizations, said Mary Carr, NAHC’s vice president for regulatory affairs.
For the first time, home health agencies will be obligated to inform patients of their rights — both verbally and in writing. And the explanations must be communicated clearly, in language that patients can understand.
Several new rights are included in the regulations. Notably, patients now have a right to receive all the services deemed necessary in their plans of care. These plans are devised by agencies to address specific needs approved by a doctor, such as speech therapy or occupational therapy, and usually delivered over the course of a few months, though sometimes they last much longer. Also, patients must be informed about the agency’s initial comprehensive assessment of the patient’s needs and goals, as well as all subsequent assessments.
A patient’s rights to lodge complaints about treatment and be free from abuse, which had already been in place, are described in more detail in the new regulations. The government surveys home health agencies every three years to make sure that its rules are being followed.
NAHC officials said they planned to develop a “notice of rights” for home health care agencies, bringing greater standardization to what has sometimes been an ad hoc notification process.
For the first time, agencies will be required to assess family caregivers’ willingness and ability to provide assistance to patients when developing a plan of care. Also, caregivers’ other obligations — for instance, their work schedules — will need to be taken into account.
Previously, agencies had to work with patients’ legal representatives, but not “personal representatives” such as family caregivers.
“These new regulations stress throughout that it’s important for agencies to look at caregivers as potential partners in optimizing positive outcomes,” said Peter Notarstefano, director of home and community-based services for LeadingAge, a trade group for home health agencies, hospices and other organizations.
Plans Of Care
Now, any time significant changes are made to a patient’s plan of care, an agency must inform the patient, the caregiver and the physician directing the patient’s care.
“A lot of patients tell us ‘I’ve never seen my plan of care; I don’t know what’s going on; the agency talks to my doctor but not to me,’” said Kathleen Holt, an attorney and associate director of the Center for Medicare Advocacy. The new rules give “patients and the family a lot more opportunity to have input,” she added.
In another notable change, efforts must be made to coordinate all the services provided by therapists, nurses and physicians involved with the patient’s care, replacing a “siloed” approach to care that has been common until now, Notarstefano said.
Allowable reasons for discharging a patient are laid out clearly in the new rules and new safeguards are instituted. For instance, an agency can’t discontinue services merely because it doesn’t have enough staff.
The government’s position is that agencies “have the responsibility to staff adequately,” Carr of NAHC said. In the event a patient worsens and needs a higher level of services, an agency is responsible for arranging a safe and appropriate transfer.
“Agencies in the past have had the ability to just throw up their hands and say ‘We can’t care for you or we think we’ve done all we can for you and we need to discharge you,’” Holt said. Now a physician has to agree to any plan to discharge or transfer a patient, and “that will offer another layer of protection.”
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 khn.org/columnists to submit your requests or tips.
As we grow old, our bodies and immune system becomes weak and we get prone to developing various health issues. In addition to the possibility of developing various diseases commonly associated with old age, such as dementia, diabetes, and cardiovascular diseases, increasing age also limits our mobility.
Joint pain and arthritis are common problems among the elderly. Even if people take good care of themselves and keep the diseases at bay, they do get affected by mobility issues as they age which affect the quality of their lives.
Here comes the role of assistive technology. Commonly known as mobility aids, the sole purpose for the development of these tools is to enable the elderly to continue with their activities and regular lifestyle. With the help of assistive technology, seniors can avoid becoming dependent on their family members or nurses, and can perform their tasks on their own.
What Comes Under Assistive Technology?
Dr. Helen Hoenig, an Associate Professor at Duke University and Chief of Physical Medicine and Rehabilitation at Durham VAMC, assistive technology can be defined as “all those devices that are used to compensate for physical limitations”. According to her, the term can be narrowed down to refer to those devices, tools, orthotics, and prosthetics that are used to help someone carry out an activity.
How Assistive Technology Helps in Improving the Quality of Life for Elderly
Seniors, when faced with limited mobility, become dependent on others for carrying out even the simplest of tasks of their daily lives, such as walking, eating, self-cleaning, and changing clothes. Many people fail to accept this new reality of life or do not like to ask for help in the simplest acts. In the absence of any solution, seniors become unhappy and even go into depression.
On the other hand, dealing with older people with limited mobility is also a difficult and challenging task for their families. When family members are unable to take good care of such old people, they transfer them to nursing facilities or assisted living centers. Moving away from their loved ones is even more disturbing for a majority of seniors and makes them more unhappy and depressed.
Mobility Aids can be of extreme help in such situations, both for the elderly and their families. They improve the mobility of the elderly and thus, enable them to perform their own tasks. Also, when seniors have such helpful devices, they do not give up on life and continue pursuing their interests. In this way, the increasing age does not affect the quality of their lives.
Common Mobility Aids and Their Link to Happiness
Mobility aids that are most commonly needed and used by elderly include:
Portable lifters and Ramps
Recline and Lift Chairs
Car Transfer Aids
With the use of any one or multiple of the above mentioned devices, the quality of life improves in old age. This may not be important to young and healthy people but for seniors, even the ability to continue living a normal life despite suffering from limited mobility is of great pleasure. If an old person with arthritis is able to visit his/her friends, to go to his/her favorite restaurant, or the nearest park, the pleasure he/she will get is beyond comparison.
No one can predict the future. As mom and dad start to age and life gets a little more challenging, we do our best to tend to their medical needs to keep them as healthy for as long as possible. But one area that is often overlooked by many parents and their kids is having the money talk. Who inherits any assets that mom and dad have? Who oversees the estate? Is there enough money to pay for a home healthcare worker if needed?
When illness or death strikes, it’s a stressful time. To make things easier on everyone, it’s best for parents to talk about finances with their children years ahead of time, when everyone can think clearly and is more relaxed.
While there is indeed a lot of ground to cover, here are 10 must-ask questions that need to be answered.
Have they named a durable power of attorney to manage their finances?
The first step is to find out if they have named a Durable Power of Attorney (POA). Without a POA in place, you’ll have to go to court to get guardianship of your parents in order to access accounts on their behalf.
Where do they keep their financial records?
Whether they keep their money and documents in a bank, a safe or under the mattress, you need to know where to find records when you need them. Also, find out the location of keys or codes to lock boxes or safes.
What are their bank account numbers and names of their financial institutions?
In addition to knowing where they keep their money, you need specifics on all account numbers. What banks and mortgage company do they use? Do they have an investment firm? How many credit card accounts do they have and where do they keep their statements?
What are your parents’ monthly expenses?
Gather information on their mortgage, car payment, credit card debt, electric bills and other expenses.
How do they pay their bills?
If there are automatic deductions being taken out of a checking account, you need to know about them. Do they use online banking/bill pay or only paper checks?
How much is their annual income and where does it come from?
Do your parents receive monthly pension checks? Do they have dividends coming in from investments? Do they get money for a disability or alimony?
Do they receive Medicare, Medicaid or Social Security?
If your parents have become incapacitated, you may have to investigate the status and eligibility of government assistance.
What kind of medical health insurance do they have in addition to Medicare?
Do they have health insurance provided by an employer? If they are retired, are health benefits included as part of a pension?
Do they have long-term care insurance?
A “regular” health insurance plan does not cover the cost of assisted living or a nursing home. Did they purchase a long-term care insurance policy to cover the cost of those residences? If not, and they can no longer live on their own, what can they afford in terms of housing?
Do they have an accountant or financial planner?
Who is it and how do you contact them? Have they done any estate planning? Ask if you can meet with their financial professional with them to discuss their situations.
It’s best for parents and children to figure things out about money and plan for the future as soon as they can. All too often it’s too late, and trying to discuss money in a stressful time leads to more stress, arguments, saying things you regret, hurt feelings and broken relationships. Have the money talk now, before it’s too late.
Phyllis Krantzman knows what she should do, but like many of her peers, the 71-year-old doesn’t know how to approach a casual acquaintance to ask who will take care of her when she needs it most.
Krantzman, of Austin, Texas, is among a growing number of seniors who find themselves alone just when aging and end-of-life care becomes real.
Unmarried, with no children, her younger sister, by seven years, died in 2014. Krantzman’s social network is limited to a handful of work colleagues and a few acquaintances.
“I’m very fearful of when I reach that place in my life when I really need help and maybe can’t take care of myself anymore,” she said. “I have nobody to turn to.”
Krantzman represents a universe that’s come to be known among geriatric specialists as “elder orphans” — seniors with no relatives to help them deal with physical and mental health challenges. Their rising numbers prompted the American Geriatrics Society this week to unveil guidelines for a segment of these older adults who can no longer make their own medical decisions and have no designated surrogates. The nonprofit dubbed them “unbefriended” and called for a national effort to help prevent a surge among incapacitated seniors who don’t have a decision maker and face a health crisis.
Single seniors have always existed, but demographic and social changes have slowly transformed aging America. In 1900, average life expectancy was 47. Now, the combination of increased longevity, the large and graying baby boom generation, the decline in marriage, the rise in divorce, increased childlessness and family mobility has upended the traditional caregiving support system.
Among the indicators:
— A Centers for Disease Control and Prevention report this year shows the number of Americans older than 100 years old increased almost 44 percent between 2000 to 2014.
— Twenty-two percent of people over age 65 are — or risk becoming — elder orphans, according to a 2015 study by New York geriatrician Maria Torroella Carney.
— A U.S. Census report from 2014 projected by 2050 the 65 and older population to be 83.7 million — almost double the 2012 estimate of 43.1 million.
— The nonprofit Population Reference Bureau in Washington, D.C., reported earlier this year that family provides more than 95 percent of informal care for older adults who aren’t in nursing homes.
“Americans are spending less time than ever in the married state,” said Susan Brown of the National Center for Family & Marriage Research at Bowling Green State University in Ohio, which “raises questions about who’s going to care for these people as they age and experience health declines.”
Reference Bureau demographer Mark Mather said the combination of aging boomers and family dislocation is creating “a potential caregiving crisis or at least major challenges down the road.”
The oldest boomers are now 70. With more on the horizon, the impact of smaller family size will become more pronounced: Baby boomers had fewer children than previous generations and significant numbers are childless, said demographer Jonathan Vespa, of the U.S. Census.
“As people have fewer children, there are fewer people in that next generation to help take care of that older generation,” he said.
New 2015 U.S. Census data also reflects more elders who live alone — 42.8 percent of those 65 and older. Yet new twists have emerged, such as cohousing, in which people live independently in housing clusters with a common building for meals and socializing. Such thinking, said gerontologist Jan Mutchler, of the University of Massachusetts Gerontology Institute in Boston, suggests a “shift [in] the way people are thinking about who can I rely on and who’s going to be there for me.”
Katie McGrail, 77, spent much of her working life in San Antonio or New York, finally retiring to Texas five years ago. McGrail and her friends daydream about “having these little houses around the spoke of a wheel and at center have a nurse and a good cook.”
Mary Gleason, 85, is an unmarried only child with no children. She’s lived on St. Thomas in the Virgin Islands for 51 years, where she developed a close group of “extremely supportive friends.” Most, she said, are five to 15 years younger, which proved important in January when Gleason had open heart surgery.
“That was it,” she said, noting she never talked about future care. “Now that I’m feeling so much better, I try to keep away from discussing that kind of stuff.”
It’s a mindset Mutchler knows well.
“People in general avoid planning for unpleasant things,” she said. “A lot of people don’t have wills or think about long-term care or what they would do if they needed it.”
Timothy Farrell, a physician and associate professor at the University of Utah School of Medicine in Salt Lake City who worked on the new policies, said he would “regularly encounter patients with no clear surrogate decision maker.”
The guidelines include “identifying ‘non-traditional’ surrogates — such as close friends, neighbors, or others who know a person well.”
Boosting social ties among elders is part of a national campaign launched last week by the AARP Foundation and the National Association of Area Agencies on Aging, a nonprofit. The aim is to combat loneliness.
Krantzman says insomnia, which has plagued her for decades, has deepened her isolation.
“I had to give up having close friends and that is one of the reasons why I find myself so alone,” she said.
Although she works part-time and lives in a government complex for low-income seniors, Krantzman said the computer she bought at age 62 has expanded her reach to connect with others.
“The computer is so important to me because I have so few people in my life,” she said. “Having the computer thoroughly altered my entire life.”
Five years ago, Dr. Ira Kirschenbaum, an orthopedic surgeon in the Bronx who replaces more than 200 knees each year, would have considered it crazy to send a patient home the same day as a knee replacement operation.
And yet there he was this year, as the patient, home after a few hours. A physician friend pierced his skin at 8 a.m. at a Seattle-area surgery center. By lunch, Kirschenbaum was resting at his friend’s home, with no pain and a new knee.
“I’m amazed at how well I’m doing,” Kirschenbaum, 59, said recently in a phone interview, nine weeks after the operation.
What felt to Kirschenbaum like a bold experiment may soon become far more standard. Medicare, which spends several billions of dollars a year on knee replacements for its beneficiaries — generally Americans 65 and over — is contemplating whether it will help pay for knee replacement surgeries outside the hospital, either in free-standing surgery centers or outpatient facilities.
The issue is sowing deep discord in the medical world, and the debate is as much about money as medicine. Some physicians are concerned that moving the surgeries out of hospitals will land vulnerable patients in the emergency room with uncontrolled pain, blood clots or other complications.
But proponents of the change say it can give patients more choice and potentially better care, as well as save Medicare hundreds of millions of dollars. Already, an “overwhelming majority” of commenters said they want to allow the surgeries out of hospitals, according to recent rule-making documents.
The final decision, which could come within a year, would also act as a test of sorts for Donald Trump and his new administration. They will weigh whether to limit government controls, as Trump has often suggested, or to bend to pressure from hospitals and doctors, many of whom oppose the change.
“I think the question will come down to two things,” said David Muhlestein, senior director for research at Leavitt Partners, a leading health consulting firm. “It’s the balance of trying to reduce regulations and let the market function — and the competing interest of vested parties.”
Demand for total knee replacements is growing — 660,000 are performed each year in the United States. That number is likely to jump to two million annually by 2030, making this complex and expensive operation one of surgery’s biggest potential growth markets.
Even if the policy change is made, Medicare would still pay for patients to get traditional inpatient surgery. But with the agency also paying for the bulk of outpatient procedures, there would be a huge shift in money — out of hospitals and into surgery centers. Medicare could save hundreds of millions of dollars if it no longer needed to pay for multiple-day stays at the hospital. Investors at the outpatient centers could profit greatly, as could some surgeons, because doctors often have an ownership stake in the outpatient centers where they operate.
Whether the shift is beneficial for patients remains an open question. Medicare patients tend to spend nearly three days in a hospital, data shows. Forty percent of Medicare patients also spend time in a rehabilitation facility for further recovery. The data, which reflects knee replacement operations from 2014, suggests that Medicare patients are taking advantage of the post-operation support at hospitals and aftercare centers. Given that, it is unclear the percentage of eligible patients who would choose outpatient care.
But improvements in surgery — from new medicines to control bleeding to better pain management techniques — mean that, for some patients, the days of close medical supervision are no longer necessary.
Kirschenbaum, who is in favor of the change, acknowledged that outpatient surgery would be the right move for only a small subset of his Medicare patients — perhaps 10 to 15 percent — who have good caretaking at home and few chronic health issues. But it would not be for the people who are frail, live alone or in a dwelling with stairs, he said. The decision about whether an outpatient surgery should be done instead of an inpatient one tends to be made by the physician and patient.
“We want to make sure patients — when they go home, they’re safe, no question,” said Kirschenbaum, the chairman of orthopedics at Bronx-Lebanon Hospital Center and a founder of SwiftPath, a company that offers technical support to outpatient joint replacement centers.
Perhaps of equal concern to patients are the financial consequences, because even though less care is given, outpatient procedures require higher out-of-pocket costs for patients. Medicare covers inpatient hospital stays, aside from a $1,288 deductible. While Medicare rules stipulate that the outpatient would pay no more than this amount for the procedure itself, he could face additional fees for items like medicines, and Medicare would not cover aftercare at a skilled nursing facility.
The battle lines over outpatient knee replacements began forming in 2012, when Medicare first considered removing the surgeries from its “inpatient only” list of invasive and complicated medical procedures. Many orthopedic doctors and hospitals rose up in protest, calling the proposal “ludicrous” and “dangerous” and prompting Medicare to abandon the idea.
Dr. Charles Moon, who has performed knee replacement surgeries at Cedars-Sinai Medical Center in Los Angeles, fired off a letter at the time saying that knee replacement patients stayed at his hospital for 2.5 days on average, and that that was “considered borderline safe” given the need to monitor patients’ response to clot-busting medications.
Other objectors cited research showing that patients who received knee replacements as outpatients were twice as likely to die shortly afterward, and that even one-day-stay hospital patients were twice as likely to need a follow-up surgery, compared with those who remained inpatients longer.
“While we realize this can be good for some patients, it’s not for all patients and all locations,” said Dr. Thomas C. Barber, the chairman for the American Academy of Orthopaedic Surgeons’ advocacy council.
Yet the proposal has gained renewed momentum, backed aggressively by some surgeons and surgery center investors who say that their accumulating experience justifies the change. In recent months, Medicare has signaled a strong interest in outpatient knee replacements, noting the potential for “overall improved outcomes” as well as the potential savings for the government program.
The final decision is made by Medicare officials in the annual course of proposing changes, seeking public input and announcing a final rule. If Medicare does decide to make a change, it would probably not be put into effect until a year or so later.
In an interview, Thomas Wilson, the chief executive of the for-profit Monterey Peninsula Surgery Centers, an outpatient clinic, said his doctors have replaced knees of hundreds of adults — 59 years old on average, but up to 82 — with low complication rates and sky-high satisfaction rates. He said advances in surgical technique, anesthetics and patient education make it possible.
Presented with such evidence, a panel that recommends hospital outpatient payment policies to Medicare officials unanimously recommended in August that Medicare remove the procedure from the “inpatient only” payment list.
Wilson said that as a first step, doctors should use strict criteria for choosing which patients are good candidates, like a low to moderate body mass index and a healthy heart and lungs.
Patients who meet the criteria are teamed with a friend or family member who works as a coach. The patient and coach attend an educational session before the operation, and the coach is also there to help after.
The patient is typically discharged after 23 hours in the outpatient center, and a home health service or private nurse follows up. Patients also go on to physical therapy.
“Our mix is like our regular mix of patients,” said Wilson, whose center advertises a knee replacement surgery for $17,030. “It’s not what we call unicorns, not 49-year-old marathon runners. These are average folks who need to have a knee or hip replaced and they’re generally not sick.”
But Barber and others worry that moving the procedure outside the hospital could become a norm or an expectation, even though some patients, especially those with complicating conditions like diabetes and heart disease, need the added support of a hospital team. Patient safety could be compromised, they warned.
Kirschenbaum said undergoing surgery has changed the way he approaches patients. Now he can roll up his pant leg, show a scar and tell them: “You can do this, too.”
In the operating room, “with a knife in my hand, nothing has changed,” he said. “But what has changed is how we treat them before and after. The education, support and being available — it’s very important.”
This story has been corrected. An earlier version of this article misstated Medicare’s policy on certain outpatient surgeries. For surgeries that can be done either as an inpatient or an outpatient, outpatients can be charged no more than the inpatient deductible for the procedure itself; the usual 20 percent outpatient copay doesn’t apply.
At age 88, Elizabeth Fee looked pregnant, her belly swollen after days of intestinal ailments and nausea. A nurse heard a scream from Fee’s room in a nursing home, and found her retching “like a faucet” before she passed out.
The facility where she died in 2012 was affiliated with a respected San Francisco hospital, California Pacific Medical Center, and shared its name. Fee had just undergone hip surgery at the hospital, and her family, pleased with her care, said they chose the nursing home with the hospital’s encouragement.
Laura Rees, Fee’s elder daughter, said she was never told that the nursing home had received Medicare’s worst rating for quality — one star. Nor, she said, was she told that state inspectors had repeatedly cited the facility for substandard care, including delayed responses to calls for aid, disrespectful behavior toward patients and displaying insufficient interest in patients’ pain.
“They handed me a piece of paper with a list of the different facilities on it, and theirs were at top of the page,” Rees said in an interview. “They kept pointing to their facility, and I was relying on their expertise and, of course, the reputation of the hospital.”
Fee had an obstructed bowel, and state investigators faulted the home for several lapses in her care related to her death, including giving her inappropriate medications. In court papers defending a lawsuit by Fee’s family, the medical center said the nursing home’s care was diligent. The center declined to discuss the case for this story.
The selection of a nursing home can be critical: 39 percent of facilities have been cited by health inspectors over the past three years for harming a patient or operating in such a way that injuries are likely, government records show.
Yet many case managers at hospitals do not share objective information or their own knowledge about nursing home quality. Some even push their own facilities over comparable or better alternatives.
“Generally hospitals don’t tell patients or their families much about any kind of patterns of neglect or abuse,” said Michael Connors, who works at California Advocates for Nursing Home Reform, a nonprofit in San Francisco. “Even the worst nursing homes are nearly full because hospitals keep sending patients to them.”
Hospitals say their recalcitrance is due to fear about violating a government decree that hospitals may not “specify or otherwise limit” a patient’s choice of facilities. But that rule does not prohibit hospitals from sharing information about quality, and a handful of health systems, such as Partners HealthCare in Massachusetts, have created networks of preferred, higher-quality nursing homes while still giving patients all alternatives.
Such efforts to help patients are rare, said Vincent Mor, a professor of health services, policy and practice at the Brown University School of Public Health in Providence, R.I. He said that when his researchers visited 16 hospitals around the country last year, they found that only four gave any quality information to patients selecting a nursing home.
“They’re giving them a laminated piece of paper” with the names of nearby nursing facilities, Mor said. For quality information, he said, “they will say, ‘Well, maybe you can go to a website,’” such as Nursing Home Compare, where Medicare publishes its quality assessments.
The federal government may change this hands-off approach by requiring hospitals to provide guidance and quality data to patients while still respecting a patient’s preferences. The rule would apply to information not only about nursing homes but also about home health agencies, rehabilitation hospitals and other facilities and services that patients may need after a hospital stay.
“It has a substantial opportunity to make a difference for patients,” said Nancy Foster, a vice president at the American Hospital Association.
Even the worst nursing homes are nearly full because hospitals keep sending patients to them.
But the rule does not spell out what information the hospitals must share, and it has yet to be finalized — more than a year after Medicare proposed it. The rule faces resistance in Congress: The chairman of the House Freedom Caucus, Rep. Mark Meadows, R-N.C., has included it on a list of regulations Republicans should block early next year.
The government has created other incentives for hospitals to make sure their patient placements are good. For instance, Medicare cuts payments to hospitals when too many discharged patients return within a month.
“Hospitals didn’t use to care that much,” said David Grabowski, a professor of health care policy at Harvard Medical School. “They just wanted to get patients out. Now there’s a whole set of payment systems that reward hospitals for good discharges.”
But sometimes hospitals go too far in pushing patients toward their own nursing homes. In 2013, for instance, regulators faulted a Wisconsin hospital for not disclosing its ties when it referred patients to its own nursing home, which Medicare rated below average. In 2014, a family member told inspectors that a Massachusetts hospital had “steered and railroaded” her into sending a relative to a nursing home owned by the same health system.
Researchers have found that hospital-owned homes are often superior to independent ones. Still, a third of nursing homes owned by hospitals in cities with multiple facilities had lower federal quality ratings than at least one competitor, according to a Kaiser Health News analysis.
The Lowest Rating
Medicare’s Nursing Home Compare gave the nursing home where Elizabeth Fee died one star out of five, meaning it was rated “much below average.” The hospital’s case managers told Fee’s family that the nursing home was merely an extension of the hospital and that “my mother would receive the same excellent quality of care and attention,” said Rees, her daughter.
But state inspectors found shortcomings in seven visits to the nursing home between August 2009 and October 2011, records show. Inspectors found expired medications during two visits and, at another, observed a nurse washing only her fingertips after putting an IV in a patient with a communicable infection.
Just four months before Fee arrived, inspectors cited the nursing home for not treating patients with dignity and respect and for failing to provide the best care. One patient told inspectors that her pain was so excruciating that she couldn’t sleep but that nurses and the doctor did not check to see whether her pain medications were working.
“Nobody listens to me,” the patient said. “I was born Catholic, and I know it’s not right to ask to die, but I want to die just to get rid of the pain.”
Fee ate little and had few bowel movements, according to the state health investigation. Fee’s family had hired a private nurse, Angela Cullen, to sit with her. Cullen became increasingly worried about Fee’s distended belly, according to Cullen’s affidavit taken as part of the lawsuit. She said her concerns were brushed off, with one nurse declining to check Fee’s abdomen by saying, “I do not have a stethoscope.”
On the morning of her death, an X-ray indicated Fee might have a bowel obstruction or other problem expelling stool, the inspectors’ report said. That evening, after throwing up a large quantity of matter that smelled of feces, she lost consciousness. She died of too much fluid and inhaled fecal matter in her lungs, the report said.
Bills Of More Than $150,000
In a court ruling, Judge Ernest Goldsmith of the San Francisco Superior Court wrote that Elizabeth Fee’s younger daughter, Nancy, “observed her mother drown in what appeared to be her own excrement.” Kathryn Meadows, the family’s attorney, said in a court filing that the nursing home’s bills exceeded $150,000 for the three-week stay.
Sutter Health, the nonprofit that owns the medical center and the nursing home, emphasized in court papers that Elizabeth Fee arrived at the facility with a low count of platelets that clot blood. Sutter’s expert witness argued that the near-daily visits from a physician that Fee received “far exceeds” what is expected in nursing home care.
The physician and his medical group have settled their part of the case and declined to comment or discuss the terms; the case against Sutter is pending. California’s public health department fined Sutter $2,000 for the violations, including for delaying 16 hours in telling the physician about Fee’s nausea, vomiting and swollen abdomen. Last year, Sutter closed the nursing home.
A week or so after Fee died, a letter addressed to her from California Pacific Medical Center arrived at her house. It read: “We would appreciate hearing about your level of satisfaction with the care you received on our Skilled Nursing Rehabilitation Unit, the unit from which you were just discharged.”
As President Donald Trump and Republicans in Congress devise a plan to replace the 2010 health law, new research suggests a key component of the law helped people with chronic disease get access to health care — though, the paper notes, it still fell short in meeting their medical needs.
Research published Monday in the Annals of Internal Medicine found that the number of chronically ill Americans with insurance increased by about 5 percentage points — around 4 million people — in 2014, the first year the law required Americans to have coverage, set up marketplaces for people to buy coverage and allowed for states to expand eligibility for Medicaid, the federal-state insurance plan for low-income people. If states opted into the Medicaid expansion, people with chronic illnesses such as heart disease, diabetes, depression and asthma were more likely to see those gains.
Still, the study suggests, the law fell short in terms of guaranteeing those people could get medical treatment, see a doctor and afford medications.
The study is the first to examine how the health law affected people with these long-term diseases, which require careful and continuous management, and whose treatment drives a vast majority of the nation’s health care costs. If these people don’t get regular treatment they are especially likely to wind up needing emergency care.
“This homes in on the patients that are most dependent on having coverage and access,” said Danny McCormick, an associate professor at Harvard Medical School and senior author on the study. “Most chronic conditions require ongoing treatment. And if you don’t get it, often it results in more expensive care downstream.”
As the GOP crafts its replacement plan, those findings could indicate what elements of the law are worth keeping, and what needs to be addressed. The Medicaid expansion in particular has come under heightened scrutiny from the GOP. This past weekend, a senior aide to President Donald Trump also said the administration wants to turn controlof the program over to states, which experts say could result in less funding.
The researchers say their findings suggest reversing the Medicaid expansion would pose significant problems for people with long-term illness.
They used data from the Behavioral Risk Factor Surveillance System — an annual survey jointly run by state health departments and the Centers for Disease Control and Prevention — to examine records for more than 600,000 adults with at least one chronic condition. Diseases included coronary artery disease, stroke, asthma, pulmonary disease, diabetes, depression and arthritis. They compared insurance rates in the three years and examined whether people used that insurance to see a doctor.
“There’s a clear difference between what happened for [chronically ill] individuals in states, based on how states implemented Medicaid. The Medicaid expansion was one of the strongest parts of the law,” McCormick said.
If policymakers are serious about using health dollars more efficiently, and getting better health outcomes, he added, the findings support including such an expansion in any new policy platform.
The paper builds on research suggesting people generally were more likely to get insurance if they lived in states that expanded Medicaid. States such as West Virginia, Illinois and Kentucky — which opted into the expansion — saw double-digit gains in coverage of chronically ill people.
“Medicaid expansion is one of the tools you would think of to help people with chronic conditions – and we are seeing more evidence this is the case,” said Benjamin Sommers, an associate professor of health policy and economics at Harvard’s public health school, who was not involved with this study. “The question of whether this informs [the policy] debate — it clearly should. It clearly should be relevant.”
That said, Obamacare was hardly a panacea, the researchers argue. Even after the law’s insurance changes, about 15 percent of people with chronic disease didn’t have coverage. More than one in four didn’t have a check-up in 2014. About 23 percent of people with chronic disease still had to go without doctors’ visits because of factors like cost. And those gaps were more pronounced for blacks and Hispanics. They were more likely on average to remain uninsured even after the health law took effect and to face obstacles in using new health insurance if they had it.
The paper suggests some possible causes: People didn’t understand how to use their insurance, or they had plans that required them to pay out of pocket large copays or deductibles — flat spending fees consumers have to front before coverage kicks in. Many marketplace plans were categorized as “high-deductible plans.”
“You’ve got hypertension or diabetes, and you have a very low income. It’s really hard to take your medications” without coverage and minimal cost-sharing, McCormick said. “Someone who’s insulin dependent who doesn’t get insulin? it’s going to result in an emergency room visit, or a hospital visit. There’s a large potential for downstream complications.”
But those gaps in coverage and access to care probably got smaller in the years following 2014, Sommers suggested. Other research has shown that with time, more people got insurance and learned how to use it.
“This is likely the tip of the iceberg in terms of what the Affordable Care Act was doing,” Sommers said. “It’s useful and part of a larger body of evidence making it clear access to care has improved among a range of populations.”
But, he noted, the findings do emphasize an important issue: The health law by itself did not expand health care to all Americans, or even all Americans with chronic conditions.
“The Affordable Care Act is not a universal coverage law. It’s a huge expansion for coverage but still left 20 to 30 million uninsured,” he said. “Even for those with coverage, some are still experiencing challenges.”
Trump has not yet offered his plan but said universal coverage will be part of his health care plan — although aides have since walked back on that claim. Meanwhile, an analysis this month by the nonpartisan Congressional Budget Office suggested that the repeal plan offered last year by Republicans eventually would increase the uninsured population by as many as 32 million.