The 90-year-old woman in the San Diego-area nursing home was quite clear, said Dr. Karl Steinberg. She didn’t want aggressive measures to prolong her life. If her heart stopped, she didn’t want CPR.
But when Steinberg, a palliative care physician, relayed those wishes to the woman’s daughter, the younger woman would have none of it.
“She said, ‘I don’t agree with that. My mom is confused,’” Steinberg recalled. “I said, ‘Let’s talk about it.’”
Instead of arguing, Steinberg used an increasingly popular tool to resolve the impasse last month. He brought mother and daughter together for an advance-care planning session, an end-of-life consultation that’s now being paid for by Medicare.
In 2016, the first year health care providers were allowed to bill for the service, nearly 575,000 Medicare beneficiaries took part in the conversations, new federal data obtained by Kaiser Health News show.
Nearly 23,000 providers submitted about $93 million in charges, including more than $43 million covered by the federal program for seniors and the disabled.
Use was much higher than expected, nearly double the 300,000 people the American Medical Association projected would receive the service in the first year.
That’s good news to proponents of the sessions, which focus on understanding and documenting treatment preferences for people nearing the end of their lives. Patients and, often, their families discuss with a doctor or other provider what kind of care they want if they’re unable to make decisions themselves.
“I think it’s great that half a million people talked with their doctors last year. That’s a good thing,” said Paul Malley, president of Aging with Dignity, a Florida nonprofit that promotes end-of-life discussions. “Physician practices are learning. My guess is that it will increase each year.”
Still, only a fraction of eligible Medicare providers — and patients — have used the benefit, which pays about $86 for the first 30-minute office visit and about $75 for additional sessions.
Nationwide, slightly more than 1 percent of the more than 56 million Medicare beneficiaries enrolled at the end of 2016 received advance-care planning talks, according to calculations by health policy analysts at Duke University. But use varied widely among states, from 0.2 percent of Alaska Medicare recipients to 2.49 percent of those enrolled in the program in Hawaii.
“There’s tremendous variation by state. That’s the first thing that jumps out,” said Donald Taylor Jr., a Duke professor of public policy.
In part, that’s because many providers, especially primary care doctors, aren’t aware that the Medicare reimbursement agreement, approved in 2015, has taken effect.
“Some physicians don’t know that this is a service,” said Barbie Hays, a Medicare coding and compliance strategist for the American Academy of Family Physicians. “They don’t know how to get paid for it. One of the struggles here is we’re trying to get this message out to our members.”
There also may be lingering controversy over the sessions, which were famously decried as “death panels” during the 2009 debate about the Affordable Care Act. Earlier this year, the issue resurfaced in Congress, where Rep. Steve King (R-Iowa) introduced the Protecting Life Until Natural Death Act, which would halt Medicare reimbursement for advance-care planning appointments.
King said the move was financially motivated and not in the interest of Americans “who were promised life-sustaining care in their older years.”
Proponents like Steinberg, however, contend that informed decisions, not cost savings, are the point of the new policy.
“It’s really important to say the reason for this isn’t to save money, although that may be a side benefit, but it’s really about person-centered care,” he said. “It’s about taking the time when people are ill or even when they’re not ill to talk about what their values are. To talk about what constitutes an acceptable versus an unacceptable quality of life.”
That’s just the discussion that the San Diego nursing home resident was able to have with her daughter, Steinberg said. The 90-year-old was able to say why she didn’t want CPR or to be intubated if she became seriously ill.
“I believe it brought the two of them closer,” Steinberg said. Even though the daughter didn’t necessarily hear what she wanted to hear. It was like, ‘You may not agree with your mom, but she’s your mom, and if she doesn’t want somebody beating her chest or ramming a tube down her throat, that’s her decision.”
Medicare launched a website aimed at helping families choose a hospice — but experts say it doesn’t help very much.
The Centers for Medicare & Medicaid Services this week released Hospice Compare, a consumer-focused website that lets families compare up to three hospice agencies at a time, among 3,876 nationwide. Following similar websites for hospitals and nursing homes, the site aims to improve transparency and empower families to “take ownership of their health,” according to a press release.
Through the website, families can see how hospices performed in seven categories, including how many patients were screened for pain and breathing difficulties, and how many patients on opioids were offered treatment for constipation.
But the measurements of quality, which are self-reported by hospices, have limited utility, some experts say. Over three-quarters of hospices scored at least 91 percent out of 100 on six of the seven categories, a recent paper in Health Affairs found. Because so many hospices reported high marks, there is “little room” for using these metrics to measure hospice quality, argued the authors, led by Dr. Joan Teno at the University of Washington.
The Hospice Compare grades are based on hospices reporting whether they followed a specific process, such as screening for pain when the patient arrives. This type of metric may lead staff to just check a box to indicate they completed the desired process, resulting in high grades for everyone, which is not helpful for consumers or for quality improvement, the authors wrote.
Meanwhile, Teno’s other research has found troubling variation in hospice quality, measured by how often hospice staff visit a patient when death is imminent.
“It’s nice that they’re at least beginning to be concerned about hospice quality,” said Dr. Joanne Lynn of the Altarum Institute, a longtime hospice physician and researcher, of CMS’ new website. But “at the present time, it’s of pretty limited value.”
Lynn said people trying to choose a hospice would be better helped by other kinds of information, such as the average caseload for hospice staff; what percentage of patients are discharged alive; and whether the hospice predominantly serves nursing home patients or devotes significant resources to at-home care.
The Hospice Compare website also doesn’t say how often hospices run awry of federal regulations: Inspection reports, which contain verified consumer complaints as well as problems uncovered during routine inspections, are not part of the website, as they are for nursing homes.
Recent hospice inspection reports may be hard to find. Until a recent federal rule change, hospices could go as long as six years without being inspected. By 2018, CMS requires states to increase the frequency to once every three years.
Common quality measures for hospitals and nursing homes, such as mortality rates, don’t translate well to the hospice setting, where people are expected to die, Lynn noted.
Although Hospice Compare is “skeletal” at the moment, Lynn said, it does enable families to search which hospices are near them, and find the hospice’s phone number to start asking questions.
“I’m hoping that it continues to improve over time,” as CMS’ other consumer-focused websites have, she said.
Next year, CMS plans to add family ratings of hospices, including how timely hospice staff were when a patient needed help. CMS is also collecting data on the number of staff visits a patient received in the final week before death. That information should be made public in late 2018, a CMS spokesman said Wednesday.
Bill Harris is blunt: For more than a year, he has been trying to help his wife die.
The 75-year-old retired tech worker says it’s his duty to Nora Harris, his spouse of nearly four decades, who was diagnosed with early-onset Alzheimer’s disease in 2009.
“Let me be honest: Yes. It’s what she wanted,” he said. “I want her to pass. I want her to end her suffering.”
Nora Harris, 64, a former librarian, signed an advance directive after her diagnosis to prevent her life from being prolonged when her disease got worse. Now, her husband said, she’s being kept alive with assisted eating and drinking against her stated wishes.
The onetime Virginia Woolf scholar and world traveler can no longer communicate, recognize family members or feed herself. She’s being spoon-fed at Fern Gardens, an assisted living center in southern Oregon, after a local judge ruled against Bill Harris last summer, concluding that state law mandates that she continue to receive help.
“She did not want to be in a position where somebody had to totally take care of her,” Bill Harris said. “When nature, through the disease, basically said, ‘I can’t feed myself,’ Nora’s position was, that’s it. Let nature take its course.”
In recent weeks, Nora Harris has been gaining weight, climbing from less than 100 pounds to 102 or 103 — just enough to keep her stable. Bill Harris learned that, in addition to three state-required daily meals, staffers have been feeding Nora optional snacks, too.
Now he’s considering going back to court to try to stop the snacks in an effort to let Nora Harris lose enough weight to end her life. Twice before, in 2015 and 2016, she fell to 90 pounds and was enrolled in hospice, with six months or less to live, only to rebound, he said, when staffers coaxed her to eat.
“You’re denying Nora the right to die on her terms,” Bill Harris said. “It’s not a right-to-life issue, it’s a right-to-die issue.”
The southern Oregon case underscores the complexity surrounding the use of advance directives for people with Alzheimer’s disease and other dementias.
Advance directives are legal documents that spell out a person’s end-of-life wishes if they are unable to make their own decisions.
These directives generally allow named agents the power to withdraw artificial hydration and nutrition in the form of feeding tubes, for instance. But when that same nourishment is offered by hand, several states, including Oregon, draw a line, said Thaddeus Mason Pope, director of the Health Law Institute at Hamline University in St. Paul, Minn., and an expert on end-of-life law.
Across the U.S., the more than 5 million people living with dementia are typically encouraged to put their end-of-life wishes into writing early and to pick a trusted person to carry them out, said Beth Kallmyer, vice president of constituent services for the Alzheimer’s Association.
That’s no guarantee, however, that those requests can — or will — be honored. In Nora Harris’ court case, her advance directive and testimony from her husband, her daughter and two close friends all indicated that she wouldn’t want anything to prolong her life.
“That court decision basically condemned Nora to the full extent of the Alzheimer’s disease,” Bill Harris said. “They gave her no exit out of this situation.”
But Eric Foster, the court-appointed lawyer who represented Nora Harris, argued that her directive doesn’t specifically mention food and drink presented by hand. Because she now opens her mouth and swallows when food is offered, she has, in essence, changed her mind, he said in a court document.
Bill Harris said that opening her mouth is a reflex, an automatic response to six decades of habit.
Nora Harris signed an advance directive stipulating no care to prolong her life, but her husband says state law is forcing her to be spoon-fed against her stated wishes. (Jim Craven for KHN)
Kallmyer, with the Alzheimer’s Association, said it’s hard to tell whether someone with dementia is acting out of reflex or desire. The association recommends against tube-feeding for patients with dementia, while also advising what they call “careful hand-feeding.”
“If they’re eating and they’re opening their mouth, it’s difficult to say they didn’t want it,” she said.
Foster’s stance was backed by a judge who sympathized with Bill Harris’ plight, but sided with Fred Steele, Oregon’s ombudsman on long-term care. Steele said Nora Harris’ advance directive wasn’t specific enough to advise Fern Gardens staff to withhold food and water.
“Our concern was just focused on the administrative rule,” he said. “If the rule exists to prevent a facility from committing elder abuse, our focus was on what the rule required. The rule requires the resident be cued with food and they have the choice of eating or not eating.”
Lynn Rawlins, the center’s administrator, said her hands are tied.
“We have to feed them until they stop opening their mouths,” she said before a tour of the center last month. “Unless feeding them causes more harm from aspirational pneumonia or a choking factor. We still have to feed them, even if they choke.”
Nora Harris is a small woman with graying brown hair and dark, confused eyes. On a recent 88-degree summer afternoon, she wore a maroon fleece sweater, gray sweatpants and mismatched socks.
She spoke in urgent whispers, syllables spilling out, unlinked from words.
Bill Harris put an arm around her shoulders reassuringly.
“Absolutely,” he said. “Of course.”
But he added later: “It’s difficult visiting her, especially when you know what Nora was like before.”
That’s the thorny issue at the heart of advance directives for people who lose the capacity to make their own decisions, said Pope.
If Nora Harris were aware enough to refuse food, instead of passively accepting it, there would be no question.
“Do we listen to the previous Nora or to the current Nora?” Pope said. “That is, unfortunately, not legally or ethically answered well.”
Bill and Nora Harris met at the San Francisco War Memorial Opera House in the early 1970s and launched a four-decade marriage that included world travel. Nora Harris was a librarian and a Virginia Woolf scholar who told family and friends she never wanted to be utterly dependent on others for care. (Jim Craven for KHN)
A bill introduced in the Oregon Legislature last year would have allowed an appointed committee to amend the state’s advance directive form. Critics, including Oregon Right to Life, an advocacy group, opposed the effort, arguing that it paved the way for mistreatment of vulnerable people, including dementia patients like Nora Harris.
“OR legislators move to allow starving, dehydrating the mentally ill,” one headline read. The bill passed the state Senate, but failed to advance.
Nora Harris’ situation also raises issues surrounding a controversial method of hastening death for seriously ill people known as “voluntarily stopping eating and drinking,” or VSED. It causes death through dehydration, usually in seven to 14 days.
VSED is being used by a small but growing number of determined patients with the help of their families, Pope said.
In Washington state, board members at End of Life Washington, a nonprofit that supports medical aid-in-dying, created an advance directive focused on people with dementia. Soon the group plans to release a new form for people who want to leave instructions for stopping eating and drinking at the end of life.
Medical experts say VSED can be a relatively painless, peaceful death. In the absence of nutrition and hydration, the body produces opiate-like substances that blunt hunger and thirst. With additional painkillers, comfort can be ensured, they add.
An analysis of VSED research concluded that “terminally ill patients dying of dehydration or starvation do not suffer if adequate palliative care is provided.” A 2003 survey of nurses in Oregon who helped more than 100 patients with VSED deaths said they were “good” deaths, with a median score of 8 on a 9-point scale.
Unlike aid-in-dying laws or rulings now in place in six states, VSED doesn’t require a government mandate or doctor’s authorization.
But the question of whether people with dementia can authorize a VSED death in advance, to be enacted later, when they’ve lost the capacity to choose, remains legally uncertain, Pope said.
“We don’t have statutes, we don’t have regulations, we don’t have a court case,” Pope said. “We have this thing where you’re allowed to refuse medical care. But this is basic care. Are you allowed to refuse basic care?”
For now, the answer in the case of Nora Harris is no.
That’s frustrating for Bill Harris, who says the emotional — and financial — toll of her illness has been enormous.
“The person you know, the person you married, who you love, is basically going away, fading away before your eyes,” he said.
He had planned to retire from his job at Wells Fargo bank at age 67 but worked an extra eight years to pay for the costs of Nora’s care, which total more than $80,000 out-of-pocket each year. Because she fell ill at age 56, she didn’t qualify for Medicare or other government help.
Worse, though, is seeing his once “extremely bright” wife wandering the halls of the assisted living center, “like a zombie,” he said.
“Nora was quite enamored of Virginia Woolf,” Bill Harris said, referencing the British author who drowned herself after years of mental illness.
“If she had known this would happen, she would have put rocks in her pockets and jumped in the river. This is absolutely where she never wanted to be.”
Frederick Bannon Jr. was by his mother’s side in intensive care as she fought a rare form of muscle cancer in late 2014. She was heavily sedated, but he felt confident making medical decisions for her, thanks to his family’s advance care planning.
Bannon had difficult end-of-life-care conversations with his parents, both in their mid-80s, before his mother’s diagnosis. During those discussions, held at Bannon’s urging, his parents decided how far they wanted doctors to go to keep them alive should they become too sick to communicate. Bannon then documented their wishes.
“That helped so much, because you knew at least one thing was going to be taken care of,” said Bannon, 65, of San Francisco, whose mother survived and lives with Bannon’s father in Wethersfield, Conn.
Rebecca Sudore, a geriatrician at the University of California-San Francisco, created prepareforyourcare.org, which provides step-by-step instructions and video stories to help people navigate the care they want at the end of their lives. She built the site in 2013 for families unsure how to broach sensitive questions. In a study published in JAMA Internal Medicine in May, she and other researchers found that the website — combined with the use of an “advance directive” form — prompted participants to plan ahead.
The website is free, and Sudore makes no money from it. She said she created it as a public service with the idea of studying its effectiveness.
The site guides patients in drafting a “summary of wishes” to help families and other caregivers decide whether their loved ones should undergo life-sustaining medical interventions such as feeding tubes and ventilators.
For the study, Sudore approached 414 San Francisco-area military veterans — including Bannon — who were split into two groups: One received a simplified advance directive, a legal document allowing a patient to consent to or decline specific medical procedures well before they occur. The other group was given the directive but also was pointed to prepareforyourcare.org, which is publicly available in English and Spanish.
Almost none of the participants had documented their wishes in the six months before the study. But nine months after the study began, 35 percent of those who received access to the website and the directive had updated their medical record, while 25 percent who received just the directive had done so.
Sudore sees stark contrasts between “deer-in-headlights” families who arrive at the intensive care unit with outdated directives and no specified plans, and those who have had ongoing conversations.
Bannon, a Vietnam War veteran, X-ray technician and colon cancer survivor, praised the site’s simplicity and accessibility and said it persuaded him and his parents to document their wishes before his mother’s cancer treatment.
The website appears to be a useful tool, according to Dr. VJ Periyakoil, associate professor of medicine and director of Stanford University’s Palliative Care Education and Training Program. (Periyakoil is friends with the UCSF researchers but was not involved in the study.)
“Clinicians are so hard-pressed for time, so when the patients get activated by web-based tools, I think it’s a wonderful thing,” she said.
Family members who have not gone through this process sometimes choose life-sustaining options for their loved ones that may cause unnecessary suffering, Periyakoil said.
Children “might be more lured by, ‘I really love Mom. I can’t allow anything bad to happen to her and I want to keep doing whatever I can to extend her life,’” she said. “And by doing so, they might end up subjecting Mom or Dad to a lot of measures that are ineffective and burdensome.”
Periyakoil, who has studied barriers to end-of-life care among eight ethnic groups, does not believe there’s a single solution to encouraging end-of-life conversations, because different groups have different approaches to discussing death. She suggested the website might be one of many strategies to consider.
Prepareforyourcare.org has logged more than 1.7 million page views and 85,000 users in 115 countries since its 2013 launch.
For Bannon, the site worked. “Now [my parents are] even more relaxed, because when they do face their final exit, everything’s in place,” he said.
One year after her husband died, Janice Gentile received an unusual request from her daughter: make a legacy video about their marriage — and their lives.
At first, Gentile, who was 72 at the time, was turned off by the idea. The Holbrook, N.Y., resident was still hurting from the loss of her husband, Cesare, who was her high school sweetheart and to whom she was married for half a century. But her daughter, Laura, urged her to make the video that lovingly traced the lives of both parents.
“It’s about both of us — but since he couldn’t speak for himself, I had to speak for him,” recalled Gentile, who is now 80 and views this video as a central part of her legacy. All four children received a copy of the 23-minute video filmed in her home by a professional videographer — and she saved one of the Blu-ray discs for herself, which she pulls out on special occasions and shows to friends who inquire about it.
Just as early humans used primitive tools to carve storyboards of their lives on cave walls, today’s technology can leave a lasting trace — at least as long as the technology lasts.
“Everyone has a story to tell, but once you’re gone, your stories are gone,” said Diane Hirsch, the woman who filmed the video and president of MyVideoLifeStory.com. If you leave a video memory behind on a disc or memory stick, she said, “future generations will know your life.”
What exactly are we supposed to leave behind after death — besides a will — for those we love? That’s a complicated question that vexes many Americans. New technologies and yet-to-be-discovered technologies keep broadening the possibilities of both the medium and the message. Beyond companies that will film your video legacy, others, such as LegalZoom.com’s forthcoming Legacy division, are exploring innovative ways to let select loved ones continue to connect with you after you die as they face new milestones.
“It’s kind of like you’re saying: Don’t forget about me — whether someone wants to forget about you or not,” said Bart Astor, best-selling author of AARP’s “Roadmap for the Rest of Your Life.” “The concept is kind of weird to me.”
Indeed, most Americans do all they can to avoid thinking about their legacy.
Only 44 percent of Americans leave any kind of will behind, according to a 2016 Gallup poll. “Most Americans never act on the question: How do I want to be remembered?” said Astor.
But some who have been touched by the technological legacy say it’s wonderful, not weird at all. And there are those who only wish — usually too late — that they could be on the receiving end of digital-video memories of their deceased spouses, parents or grandparents.
“The only tangible recording that one young lady told me she had of her mother is a cellphone message,” said Craig Holt, global chief product officer of LegalZoom, who is overseeing the Legacy division that is in the testing stage in the United Kingdom, and which could expand into the U.S. market next year.
Legacy can do much better than old cellphone messages, said Holt. Think of one of its products as more like a time capsule that will dispense prerecorded messages at significant times or dates in the future — such as a grandchild’s 16th birthday.
“This is very different from leaving some photos on a phone or some sort of journal behind,” said Holt. “It shows you’ve done some thinking about the future.”
Holt, for example, has twin children who are nearly 5 years old. In the unlikely event that the 39-year-old executive dies early, he has digitally recorded personalized messages for each of them that will express his love around their 18th birthdays and their potential weddings.
“Easing the pain of loss is about more than financial issues,” said Holt. “There is an emotional legacy, too, and certain things I want to tell people I’m leaving behind.”
LegalZoom’s Legacy plan also includes a “dynamic” will structure that allows for changes to a person’s will to be easily made online instead of through an expensive trip to the lawyer’s office.
Holt declined to estimate what it might ultimately cost consumers to use the service.
Clients, of course, essentially would be betting that LegalZoom and its Legacy division will continue to be around and operational for years after they die.
“You have to hope the company still exists years from now,” said Astor. “It’s like buying an annuity. If the company is no longer there, it’s too bad.”
Meanwhile, the only real “risk” with digitized videos from MyVideoLifeStory.com is that the recipient doesn’t want to see them. That would be the exception, said Hirsch. Keeping a legacy going is really about keeping a family’s history from disappearing.
In the case of Janice Gentile, for example, until she made that video, her children never knew she had once performed a piano concert at Carnegie Hall, said Hirsch.
Janice Gentile spent nearly a half-century married to Cesare Gentile, who was her high school sweetheart. (Photo courtesy of Janice Gentile)
But quality doesn’t come cheap. Hirsch’s videos can cost up to $7,000. She spends hours with each subject — getting to know them before she starts filming. Hirsch faces tough competition with at least a dozen other video legacy biographers offering similar services from New York to Arizona to California. The best way to select a legacy videographer, she said, is via recommendations. Even then, she said, it’s critical to spend lots of time getting comfortable with the videographer before filming begins.
The idea for the business came to her shortly after her mother died. Realizing how unpredictable life is, Hirsch persuaded her 85-year-old father, Raymond, to sit and talk for three hours while she shot video and he talked about his past. Nine months later, he died. “I watch his video all the time, and it still makes me feel good,” she said.
Gentile treasures the fact that her four children and 10 grandchildren will always have her recording as a way to remember both her husband and herself. She said that she’d advise her best friend to do one, too. “Go for it,” Gentile said. “There’s nothing to lose.”
One of her sons has ribbed her about the video. “He says I spent more time talking about the dog than my kids,” she laughed. But her only regret is that she wishes she could have created it with her husband, when he was alive.
Astor said the legacy that he and his wife prefer to leave is more educational than sentimental. Both have established need-based college scholarships — in their own names — at their alma maters.
“To me, it’s all about leaving your values to future generations,” said Astor, who, like his wife, needed student aid to make it through college.
Instead of leaving behind a digital legacy, they’re giving back the old-fashioned way: cash.
Clyde Boyce has been hospitalized 14 times in the past four years.
Boyce, 61, survived two strokes and five operations to unblock arteries around his heart, including three procedures in which doctors propped open his blood vessels with stents. He takes 18 pills a day and gets injections every two weeks with a powerful drug to lower cholesterol.
Yet the disease that came closest to taking Boyce’s life wasn’t a heart condition. It was depression, which led him to attempt suicide twice in the year after his first surgery.
Heart disease patients who become depressed are twice as likely to die within the following decade as other patients, according to an unpublished study presented in March at the American College of Cardiology’s annual meeting.
Depression increased the risk of death more than any other risk factor in the study — even smoking, said lead author Heidi May, a cardiovascular epidemiologist at the Intermountain Medical Center Heart Institute in Salt Lake City.
Relatively few heart patients die from suicide.
Most often, depressed heart attack survivors die of physical causes, partly because they’re less motivated to take care of themselves and take medication as directed, said Dr. Martha Gulati, a spokeswoman for the American College of Cardiology.
People suffering from depression are also more likely to smoke but often less likely to exercise and follow a healthy diet than those who are not depressed, Gulati said.
“You may be told to change your diet, but if you’re depressed, you may think, ‘This is too overwhelming. I can’t even process this information right now,’ ” said Kim Smolderen, an assistant professor at the University of Missouri-Kansas City.
Although the American Heart Association strongly recommends cardiac rehab, doctors refer only 2 out of 3 heart attack survivors for the program, the study found.
A fraction of patients referred to the program — which involves three sessions a week for 12 weeks — actually show up. Due to cost and other barriers — such as long drives to hospital rehab centers — just 23 percent of patients attended one or more sessions, and 5 percent completed all 36 recommended sessions, the study found.
Cardiac rehab programs include stress management and teach relaxation techniques and coping skills similar to those used in some types of depression therapy. The programs can reduce the risks of heart attack more than standard rehab.
In a three-year study published in Circulation last year, which included heart patients ages 36 to 84, nearly half of patients who didn’t attend cardiac rehab died or had a heart attack, stroke or hospitalization due to chest pain, compared with 33 percent of those who attended rehab.
Among those whose rehab included stress management, only 18 percent suffered one of these heart-related complications, the study found.
Ignoring The Warning Signs
Boyce — who said depression sent him into rages that tested his marriage — said no one screened him for mental illness after his heart procedures, although he had suffered several debilitating depressions since adolescence.
He wasn’t prescribed antidepressants, Boyce said, until after his first suicide attempt.
“The system failed him,” said psychologist Barry Jacobs, a spokesman for the American Heart Association, when he heard Boyce’s story. “What you’re describing is not the way it’s supposed to work.”
After Boyce’s second heart procedure, he stopped taking his heart medications for five days — a move that his doctors viewed as a suicide attempt. His doctor committed him to a state psychiatric hospital for almost a week, prescribed medication and referred him to a psychiatrist.
Yet Boyce’s depression deepened as the bad health news piled up. Doctors diagnosed heart rhythm problems that required a pacemaker; congestive heart failure, caused when weakened heart muscle allows fluid to build up in the lungs; as well as asthmatic bronchitis, which affects the lungs. Boyce began to dread that he would suffer a fate similar to his mother, who died after six months in a coma, brought on by a long battle with heart disease.
A year after his first suicide attempt, Boyce tried to overdose on prescription medication. His wife found him and took him to the hospital, where doctors committed him to a psychiatric ward.
“Everything was happening so fast,” said Boyce, a former advertising executive from Murchison, Texas, who retired due to his health problems. “I was just convinced I was going to die. I thought to myself, ‘I’m going to end up on a ventilator, unconscious, just like my mother.’ ”
Boyce, 61, of Murchison, Texas, shows his smallest and largest pills — two of 18 he takes every day for various conditions. (Sarah A. Miller for KHN)
Exercise helped him feel stronger and less disabled, Boyce said.
“I do think the rehab raised my spirits … feeling like I could still do some things,” Boyce said.
What helped Boyce turn the corner, he said, was a conversation with God.
“It was the night before my third or fourth operation, and for some reason, I was sure I was not going to live through it,” Boyce said. “I said, ‘God, all I ask is that you give me one more day, and I will try to be a better man every day.’”
Boyce lost his fear of death. Although he occasionally still gets depressed, Boyce said, he’s able to manage his fears and anxieties better than in the past.
An Expensive Problem To Ignore
Cardiologists are divided about whether to screen heart patients for depression, but many primary care doctors have embraced the idea, said Dr. Ken Duckworth, medical director for the National Alliance on Mental Illness.
Successful approaches have involved “packages of care,” rather than individual services, said Dr. Bruce Rollman, a professor at the University of Pittsburgh School of Medicine.
The team approach is key.
In an approach called collaborative care, mental health nurses or social workers serve as care managers, who reach out directly to patients, often by phone, to educate them about their disease, suggest ways to manage their depression and make sure that treatments are working, said Dr. Mary Whooley, director of cardiac rehabilitation at the San Francisco VA Health Care System.
Care managers work with primary care doctors to quickly adjust patients’ medications or other treatments as needed. They consult with a psychiatrist, often over the phone, Whooley said.
“You can’t stay home and get depressed … they won’t let you,” said Dr. Anita Everett, president of the American Psychiatric Association. “They reach out to you.”
A 2014 study in JAMA Internal Medicine found that collaborative care could be delivered over the phone. Patients in the study had blocked arteries, heart rhythm problems or heart failure.
Even on the phone, care managers “develop a trusted relationship with our patients,” said study co-author Dr. Bruce Rollman, a professor at the University of Pittsburgh School of Medicine.
An earlier study of collaborative care, which focused on patients who had undergone bypass surgery, found that telephone care not only improved depression, quality of life and patients’ physical functioning, it saved over $2,000 a year per patient. Rollman is now studying ways to treat depression and heart failure together.
Keeping depression under control can save money if patients stay healthy and spend less time in the hospital, Rollman said.
Depression costs the U.S. more than $210 billion a year, with much of the cost coming from reduced productivity at work, according to a 2015 study.
“There are very, very few things in health care that save money,” Rollman said. “A mild decrease in depression led to a big decrease in cost.”
Officials at the University of Pittsburgh Medical Center Health Plan were impressed enough by the results to include depression screening as part of a checklist of care for patients who are sent home after a heart attack.
Medicare, the federal health insurance program for Americans age 65 and older, began paying doctors to deliver collaborative care in January. Medicare has covered depression screenings in primary care settings since 2012.
In that time, Medicare payments for depression screening have grown from $1.7 million a year to $9.5 million a year, according to a Kaiser Health News analysis. While those screenings make up a small fraction of Medicare’s annual budget of $646.2 billion, Duckworth called the services “a noteworthy trend in the right direction.”
Aidan Long is a 13-year-old from Montana who has suffered multiple daily seizures since he was 4. The seizures defy medical cure, and some of them continue for weeks, requiring Aidan to be airlifted to children’s hospitals in Denver or Seattle, said his father, Ben Long. The medical bills to Medicaid and his private insurance have been enormous.
“I kept track of these until about 2 million bucks, and then I said I can’t spend any more time worrying about it,” his father said.
As Senate Republicans seek to limit the amount Medicaid will spend on poor people’s health, they recognize that one group has complex medical issues warranting protection: severe special needs. But Aidan and several million other children would not meet the Senate’s highly restrictive definition of “blind and disabled” children whose health coverage would be excluded from the vast reductions Republicans are pushing.
With federal Medicaid spending predicted to drop 35 percent by 2036 under the GOP plan, states would have to shoulder the high medical costs of children with disabilities or else reduce or rescind health services Medicaid now pays for. Those include doctors and specialists; nurses in schools and at home; prescription drugs; and occupational, speech and physical therapy.
“It’s just a fraction of kids who we consider having special health needs who would qualify for the carve-out,” said Janis Guerney, co-public policy director at Family Voices, an organization of families of children with special needs. “The caps are going to put states under so much financial pressure that they are going to do away with the things they don’t have to cover.”
At risk not only are children living in poverty but also kids from working- and middle-class families who have been allowed to enroll in Medicaid because their medical problems are so extensive that most private insurance will not cover it all.
“Absent those supports paid for by Medicaid, the only option many families will have is institutionalization,” said Meg Comeau, a researcher at the Boston University School of Public Health’s Catalyst Center, which helps states improve insurance for children with special needs. “You’ll see kids going into pediatric nursing homes, kids not being able to be discharged from hospitals.”
States Are ‘Going To Be In A Pickle’
Of the 5 million to 6 million children with special needs estimated to be enrolled in Medicaid, 1.2 million would meet the Senate’s definition of “disabled,” which relies on strict criteria to qualify for federal Supplemental Security Income, or SSI, payments. Those children must come from impoverished families who can prove they are blind or have “marked and severe functional limitations” that are fatal or will last continuously for at least a year. Under the Senate bill, the federal government would continue to pay for a portion of their medical bills without setting a financial ceiling.
That would not be the case for the majority of other children with special needs on Medicaid. They qualify because their families have low incomes, so there has been no reason for states to keep track of them separately. Under the Senate plan, the federal government would give states the same amount of Medicaid funding for those children as they would for a child without disabilities, even though that child’s health costs would likely be much higher.
“The potential consequences could be devastating,” said Sara Bachman, another researcher at the Catalyst Center. “States on their own are quite variable on the ability to support the services kids need. The federal participation in the Medicaid program is in an essential underpinning. States are really going to be in a pickle.”
A Republican Senate aide, who was authorized to speak only on condition of anonymity, said Sen. Orrin Hatch (R-Utah), the chairman of the Senate Finance Committee, and several other Republicans wanted to exempt all children with disabilities from the per capita payment limits. But bill drafters ran into a problem: Lack of information about the broad population of children with special needs on Medicaid impeded them from crafting a more expansive definition, and the Congressional Budget Office, or CBO, could not estimate the costs, the aide said.
“We were trying to get as many of them, if not all of them, exempted from the cap,” the aide said. “But the problem is the only good definition and the only good numbers we had were for SSI.”
The Senate bill would require states to begin reporting details on children with special needs so that Congress could expand the exclusion. “Hopefully in a couple of years, when we have a better idea of who they are, we can get them in there,” the aide said.
Some Middle-Class Families Would Also Be Hit
Until then, the most severe repercussions from the Senate bill would fall on a third group, roughly 400,000 severely impaired children from families who are not in poverty but whose children have high health-related expenses. Over the years, states have received permission from the federal government to let these children go on Medicaid so they could be cared for at home. Otherwise they might need to live in an institutional setting such as a hospital or pediatric nursing home or have a parent quit work to stay with them.
Some of these families, including Aidan Long’s, have private health insurance through work. But even the best policies rarely pay for as much as Medicaid does.
Christy Judd’s 8-year-old son, Ethan, has a congenital neuromuscular disease and needs a ventilator to breathe at night. Every week he gets physical therapy to improve his balance and mobility, and Medicaid picks up the hefty copays for both equipment and care. Ethan is able to attend school in Inwood, W.Va., only because Medicaid pays for nurses and aides to watch him.
“His health care would exceed what we make in a year despite the fact that we have very high-quality health care insurance,” said Judd, a high school history teacher. “He requires eyeballs on him 24/7. My husband and I are human beings. We have to sleep. Without access to Medicaid, he could die.”
Medicaid paid for nurses, a feeding tube and special food for Cara Coleman’s 11-year-old daughter, Justice, until the girl’s death in March. Coleman is an attorney from Waterford, Va., and her husband is an executive, but their private insurance provided only $500 in nursing benefits a year. Justice required 12 to 16 hours of nursing a day, which Coleman said might have exceeded $80,000 a year. Medicaid also paid for a portion of her wheelchair and all of the palliative and hospice care that eased Justice’s pain in her final year of life.
“I wish she was still here and that we didn’t have to let her go so early, but if this darn Senate bill passes, I’m almost grateful she’s gone,” she said. “If she were still alive and we had to face the per capita caps in Medicaid, I’m sure we would be in medical bankruptcy and her life would go down the tubes. I’m glad she went on her terms.”
At Aidan Long’s school in Kalispell, Mont., nurses or aides paid by Medicaid must watch him to make sure a seizure doesn’t cause him to fall and strike his head, Ben Long said. He also gets physical, occupational and speech therapy at school, also paid by Medicaid.
“He has to be relearning basic things, how to walk, how to balance himself,” Long said. Occupational therapy helps Aidan use a pencil and put on his shoes. The school district charges Medicaid for those services, but the Senate plan could jeopardize the funding, potentially forcing superintendents to choose between reductions in special-education services or general programs.
Aidan Long, 13, who is covered by Medicaid because of his serious, nearly daily seizures, enjoys fishing with his father, Ben Long, near their home in Kalispell, Mont. (Family photo)
“We’re really grateful for the local support our school district has shown, but they’re kind of stuck like sandwich meat between the rights of the kids and the capacities of the local taxpayers,” Long said.
Aidan Long’s mother, Karen Nichols, put her photography career on hold to care for him. Still, the Longs need nurses to come to their home four or five times a week to relieve Aidan’s parents. Without that support, Ben Long said he would have to leave the communications nonprofit organization where he works.
On his good days, Aidan is active, kicking a soccer ball and fishing with his dad. When the seizures do not stop, the costs can be huge: $70,000 to fly him to a children’s hospital, where the room alone costs $10,000 a night, Ben Long said. “That’s not the care, that’s just the space,” he said.
As the GOP leadership pushes for the Senate measure’s passage, Long has been trying to rally advisers of Montana’s Democratic governor to raise concern, and he has repeatedly sought to reach Montana’s Republican senator, Steve Daines. He said that after he called, wrote and tweeted the senator, Daines responded with a form letter.
“You meet these parents of other kids with these severe disabilities, these parents are fighting to keep their families together and they’re fighting for their kids’ lives,” Long said. “Everybody’s so busy keeping things together, they don’t have the luxury to hire lobbyists.”
Featured image: Ben Long of Kalispell, Mont., worries that his son Aidan’s Medicaid coverage could be withdrawn if the Senate Republicans pass their proposal to replace the health law. (Family photo)
It’s time to stop side-stepping the obvious: In addition to affecting the lives of virtually all Americans in the coming years, Alzheimer’s disease will devastate communities of color. We must act with urgency and coordinated force today to prevent that from happening. According to new data from the Centers for Disease Control and Prevention, Alzheimer’s deaths… (more…)
Just before dusk on an evening in early March, Mimi Rosenkrance set to work on her spacious cattle ranch to vaccinate a calf. But the mother cow quickly decided that just wasn’t going to happen. She charged, all 1,000 pounds of her, knocking Rosenkrance over and repeatedly stomping on her. “That cow was trying to push me to China,” Rosenkrance recalls.
Dizzy and nauseated, with bruises spreading on both her legs and around her eye, Rosenkrance, 58, nearly passed out. Her son called 911 and an ambulance staffed by volunteers drove her to Lost Rivers Medical Center, a tiny, brick hospital nestled on the snowy hills above this remote town in central Idaho.
Lost Rivers has only one full-time doctor and its emergency room has just three beds — not much bigger than a summer camp infirmary. But here’s what happened to Rosenkrance in the first 90 minutes after she showed up: She got a CT scan to check for a brain injury, X-rays to look for broken bones, an IV to replenish her fluids and her ear sewn back together. The next morning, although the hospital has no pharmacist, she got a prescription for painkillers filled through a remote prescription service. It was the kind of full-service medical treatment that might be expected of a hospital in a much larger town.
Not so long ago, providing such high-level care seemed impossible at Lost Rivers. In fact, it looked as if there wouldn’t be a Lost Rivers at all. The 14-bed hospital serves all of Butte County, whose population of 2,501 (down from 2,893 in 2000) is spread over a territory half the size of Connecticut. Arco, the county’s largest town, has seen its population drop 16 percent since 2000, from 1,026 to 857 last year. “Bears outnumber people out here,” is how hospital CEO Brad Huerta puts it.
The medical center nearly shut its doors in 2013 due in large part to the declining population of the area it serves — almost becoming another statistic, another hospital to vanish from rural America. But then the hospital got a dramatic reboot with new management, led by Huerta, who secured financing to help pay for more advanced technology, upgraded facilities and expanded services. He also brought in more rotating specialists, started using telemedicine to connect the hospital to experts elsewhere and is now planning to open a surgery center and a long-term care rehabilitation wing. If Lost Rivers had closed, the alternative would have been hospitals in Idaho Falls or Pocatello, each more than an hour away across high-altitude prairie. Instead, “I don’t have to go across the desert for hardly anything,” said Rosenkrance, resting at the hospital the morning after the cow attack.
Rural hospitals are facing one of the great slow-moving crises in American health care. Across the U.S., they’ve been closing at a rate of about one per month since 2010 — a total of 78, or about 6 percent. About 14 percent of the U.S. population lives in rural counties, a proportion that has dropped as the number of urban dwellers grows. Declining populations mean a smaller base of patients and less revenue. And the hospitals are caught in a squeeze: Because many patients in the countryside are older and sicker, they require more intensive and often expensive care.
Faced with these dramatic economic and demographic pressures, however, some hospitals are surviving — even thriving — by taking advantage of some of the most cutting-edge trends in health care. They are experimenting with telemedicine, using remote monitors to track patients and purchasing high-tech equipment to perform scans and other types of exams. And because many face physician shortages, they are partnering with universities and increasingly relying on nurse practitioners, paramedics and others to deliver care. In parts of rural Oregon and Washington, veterans can get counseling through a tele-mental health program. Physicians in Iowa and North Dakota have access to virtual emergency room support.
At Lost Rivers — a dramatic rural health turnaround story — Huerta’s strategy was to use technology and innovation to offer the kind of high-quality medical care that would keep patients like Rosenkrance coming back. “Necessity is the mother of invention,” Huerta said. “Small hospitals like mine are always going to be under the gun. You have to get really creative.”
In the decades to come, America’s heartland and hinterlands will continue to be home to the people who run the country’s farms, forests and fisheries, and its wilder regions will continue to draw visitors who crave nature and recreation. And those people will need medical care. As a result, rural health researchers say hospitals like Lost Rivers are important test cases. They show that, despite daunting obstacles, rural America need not be left behind when it comes to health care. In fact, because they are being forced to innovate faster than their urban counterparts, they can provide a glimpse into the future of medicine.
“Being in a rural place does not preclude high-quality medicine,” said Tom Ricketts, senior policy fellow at the Sheps Center for Health Services Research at the University of North Carolina, Chapel Hill. “They are under a lot of pressure, but there are rural places you can point to as places you would say, ‘This is how things ought to be done.’”
Where Folks Wear ‘Multiple Hats’
It’s a Tuesday afternoon at Tara Parsons’ flower shop. She cleans up as she waits for customers — or for an emergency call. Parsons, a fourth-generation Arco resident, is not just the town florist; she is also the county coroner, a sheriff’s dispatcher and a volunteer emergency medical technician. This afternoon, she is on ambulance duty.
“We all wear multiple hats out here,” she said.
The town of Arco was founded in the 1870s as a junction for horse-drawn stagecoaches. Its quirky claim to fame is that in 1955, it became the first town in the world to be powered by nuclear energy, a credit to the Idaho National Laboratory down the road toward Idaho Falls. Every summer, to celebrate its history, the town puts on a celebration that features a rodeo and a softball tournament.
The streets are lined with shuttered and boarded-up storefronts, some with their signs still on display: the Galloping Goose, the Sawtooth Club. Residents talk nostalgically about the town’s heyday, when there were banks, a bowling alley and a movie theater, back when residents drove to Idaho Falls only twice a year, to get school supplies and do Christmas shopping.
Now, most of the businesses are gone. The town still has a lumber shop, a hardware store and a few auto garages. There’s also a bar, a gym and a dollar store. And around the corner there’s the local diner — Pickle’s Place — where people come day and night for fried pickles and biscuits and gravy.
Like so many other residents, Butte County clerk Shelly Shaffer has a personal connection to the hospital: Her mom worked there, her sister was born there, and she used to take her children there. Lost Rivers Medical Center — which also has two outpatient clinics — is one of the town’s biggest employers.
“It would be devastating if we didn’t have our hospital,” she said.
That was the direction they were headed. When Huerta, the CEO, arrived four years ago, he found the nearly 60-year-old hospital in disarray — dilapidated facilities, fearful employees, reluctant patients and a financial mess left behind by the former CEO. The hospital’s bank account held just $7,000 and morale was at an all-time low. “We were the poster child for everything that was wrong with rural health care,” he said. “It had been a slow, steady decline from neglect.”
Shannon Gamett, 28, a nurse at Lost Rivers, said paydays were nerve-wracking: “We would run as fast as we could to the bank to cash [a paycheck], or it might not clear.”
After borrowing money to pay his employees, Huerta campaigned to pass a $5.5 million bond for Lost Rivers. He asked locals if it was worth $5 a month — one six-pack of beer or two movie rentals — to keep the hospital running. They answered “yes” at the polls, and the hospital emerged from bankruptcy. Next, Huerta set his sights on overhauling the badly outmoded facilities. One of his top priorities was the laboratory, which he said looked like a high school science classroom from the 1950s.
He instituted a new philosophy: If it doesn’t happen at a “real” hospital, it doesn’t happen at Lost Rivers. That meant ending some local practices, nixing little things like letting staff members wear scrubs of any color they fancied, and big things, like allowing people to bring their horses in for X-rays. “I said, ‘I have no problem doing this, but you tell me what insurance the horse has,’” he recalled. “The practice stopped immediately.”
To bring in more revenue, he applied for grants and got the hospital a trauma center designation (the first level IV trauma center in Idaho) so it could get paid more for the care it was already providing. He saved money by inviting the town’s residents to help renovate clinic exam rooms and by moving the medical records to a cloud-based system that didn’t require more information technology employees.
Despite Huerta’s efforts, however, the long-term success of Lost Rivers is not guaranteed. “If you don’t have enough people to support a clinic or a hospital, it has no economic reason to be there,” said Ricketts, the Sheps Center fellow. “It just disappears.”
Arco and Butte County officials hope the local economy will get a boost from a planned expansion of Idaho National Laboratory, which conducts nuclear energy testing and research. Residents also are mounting a campaign to get the Craters of the Moon, a national monument in Butte County, designated as a national park.
“It would literally put us on the map,” county clerk Shaffer said.
But even if that happens, Huerta knows he can’t expect a big influx of new residents. Rural parts of the United States saw an absolute decline in population following the 2008 financial crisis, a trend that has since stabilized. But there is little or no growth. So Huerta has to concentrate on keeping the patients he has — and giving them a reason to keep coming. And it’s working: The hospital is now making a small profit and has some reserves on hand for future projects.
“If you are not offering the services, people are going to go somewhere else,” Huerta said. “And as medicine advances and reimbursement is still pegged to volume, you have to find ways to keep that existing population here.”
One big challenge for Lost Rivers and many other rural hospitals is that their patients tend to be older — and thus sicker and costlier to treat. People 65 and older account for about 18 percent of the rural population, compared with 12 percent in urban areas, according to the National Rural Health Association. An older patient base can strain hospitals because Medicare, the public insurance program for the elderly, doesn’t pay hospitals as well as private insurance does. Elderly patients also may need more intense care than small hospitals can provide.
Rural hospitals have a higher percentage of patients on Medicaid, the public insurance for poor people, which pays notoriously low rates to providers.
Some seniors move to Arco precisely because there is a hospital in town. But for others, what Lost Rivers offers simply isn’t enough.
Residents Ray Westfall, 82, and his wife, Winona, recently put their house on the market after deciding it was time to move to Utah, closer to family and more specialized health care. Westfall has neuropathy in his legs, which causes numbness most of the time. He gets around with a walker. Winona has dementia.
“We can get some care here at the local hospital, but mostly we have to travel to Idaho Falls,” he said.
Westfall is a regular at Parsons’ flower shop. On a recent Tuesday, he bought a bouquet for his wife — carnations, her favorite.
Parsons said many of the emergency calls she responds to are for older folks who’ve suffered strokes, fallen at home or are struggling to breathe. One 99-year-old woman she took to the hospital on this morning had fallen in her living room.
Parsons said she has known many of her patients for years, through her parents or grandparents. As they grow old and get sick, she picks them up in the ambulance and drives them to Lost Rivers.
“And before long, I’m doing their funeral flowers,” she said.
Telemedicine: A New Frontier
At first the Bengal Pharmacy, on the bottom floor of Lost Rivers Medical Center, looks like any other pharmacy, with racks of over-the-counter cold medications, bandages, reading glasses and medical supplies. Shelves of prescription medications sit behind the counter. But it has no pharmacist on site; instead, technicians and students from Idaho State University in Pocatello shuffle about, filling prescriptions.
Their supervisor is a pharmacist at the university, about 80 miles away, who checks their work remotely. Patients who want to talk to him go to a small private room with a phone and video link. The pharmacy is named for the university’s mascot.
For rural hospitals, telehealth can make otherwise faraway services accessible to people where they live, said Keith Mueller, director of the Center for Rural Health Policy Analysis at the University of Iowa. That can be critical, especially during the winter when snowstorms sometimes cut off access to rural towns.
“We can, in effect, bring the provider to the community without physically doing so,” Mueller said. “Even in urban areas, people want more and more convenience in how we receive our services. Here we are talking more about necessity.”
At Lost Rivers, patients can have telemedicine appointments with a psychiatrist. And doctors can get virtual guidance from specialists in trauma, emergency care and burns. But new technologies sometimes take getting used to. “When you lose that hometown community pharmacist, that human touch, when you turn it over to computers, that’s a concept that people have difficulty with,” said Martha Danz, who sits on the hospital’s board.
Leon Coon, 83, said the concept is a bit foreign to him. “I just don’t do that stuff,” said Coon, who works loading hay. “I’m a little old-fashioned.” Sipping coffee at the truck stop early on a Wednesday morning, Coon said he doesn’t even text, so he’s a bit wary of technology that puts him in touch with a pharmacist all the way in Pocatello. But then again, he said he doesn’t rely on the medical system much at all.
“Anytime you go to the doctor, it’s just like a mechanic,” he said. “They’re going to find something wrong. I feel good most of the time, so I just don’t go.”
Shane Rosenkrance, whose wife got trampled by the cow, said he remembers when there were five community drugstores in the valley. Now, he is grateful to have the one pharmacy — even if the pharmacist isn’t actually behind the counter. “To have health care, you have to have a pharmacy,” he said. “And through technology, they are able to do it.”
Telemedicine is hardly a panacea. The projects often depend on grants or government awards, because rural hospitals’ operating margins are slim. And some of the telemedicine and remote monitoring technologies require high-speed internet, which isn’t always reliable or cost-effective in rural areas.
“You can’t do home monitoring everywhere,” said Sally Buck, CEO of the National Rural Health Resource Center. “You can’t do telehealth everywhere.”
Telemedicine also may raise more questions than it answers for some patients, and even create a need for in-person follow-ups. Orie Browne, the medical director for Lost Rivers, said he tries to keep patients from having to travel. But if someone needs more advanced medical care — or a specialist that Lost Rivers doesn’t have — he will refer them to another hospital. The hospital has a helicopter pad, and patients with emergencies that can’t be handled at Lost Rivers can either be flown out by helicopter or transferred by ambulance.
“Ego is a dangerous thing,” he said. “If there is anyone who can do a better job, I’m going to get [my patients] there.”
Nevertheless, Huerta said, he hopes to expand telemedicine, including such services as oncology. Huerta recognizes that Lost Rivers doesn’t have the staff or the expertise to do it all. He believes the hospital should try to do more when it can, and refer out the rest.
“We aren’t trying to do brain surgery,” he said. “We’re not doing Level I trauma. But colonoscopies? Tele-oncology? People in rural areas get cancer too, and it’s demanding driving hours back from a chemotherapy session.”
Rounding Up Doctors
Browne started work at Lost Rivers one recent day in March, then drove 45 minutes to one of its outpatient clinics in Mackay, 26 miles away. One of his first patients was Elizabeth Galasso, 59, who was worried because her heart rate was racing.
“I was scared,” Galasso said, speaking with a hoarse voice as she sat hunched on the exam table. “I felt my heart pounding clear down into my stomach.”
An EKG showed her heart was beating normally. Browne told her it was likely a panic attack, but suggested a stress test just to make sure. He told her that her age, her smoking history and anxiety all put her at risk for heart disease.
“But I think things are going to be just fine,” he said. Galasso reached over and hugged him.
Browne, who took over as Lost Rivers’ medical director in 2015, said he was drawn to the outdoor activities in the area — and the variety of rural health care. He used to have a private practice in Idaho Falls and rotated into Lost Rivers for a week at a time. Now, he spends his days bouncing between the emergency room, the hospital inpatient beds and the primary care clinic. “That’s good for a person who gets bored easily,” he said.
Many doctors, however, don’t feel the same pull. Rural hospitals and clinics have long struggled to recruit doctors. In rural areas, there are roughly 13 physicians — of any kind — per 100,000 people, compared with 31 in urban areas, according to the National Rural Health Association.
Doctors and other medical providers can be enticed by programs that repay their school loans if they work in a rural area. Some medical schools have programs designed specifically for students who plan to practice in rural or underserved communities. Another way to make treatment more accessible in rural areas is to expand the responsibilities of nurse practitioners, physician assistants and even paramedics.
Lost Rivers relies on nurse practitioners and physician assistants to provide care for patients in the clinics and the hospital. In addition to Browne, the medical center has four part-time primary care physicians, some who live hours away and come in once a week. Various specialists, including a cardiologist and an orthopedist, also rotate into the medical center’s outpatient clinics about once a month. And an MRI machine gets driven to the hospital once a week.
Tim Tomlinson, a podiatrist who lives in Twin Falls and drives 100 miles to Arco once a week, spent a recent morning seeing a lineup of patients. One was a man who had to have a toe amputated after a horse stepped on his foot, another a diabetic who needed a skin graft checked on his foot.
Tomlinson said he’s gotten paid late before, and he has seen the hospital nearly shut down more than once. But he keeps coming because he has developed a practice — and he thinks its important patients have access to specialty care. Lost Rivers isn’t unique in its difficulties, he noted. “All those small towns are struggling as young people move out, leaving mostly old people,” he said. “That puts a drain on the hospitals.”
Patients are living longer with chronic diseases now, so the demand for elderly care is only going to increase. If not the rural clinics and hospitals, Tomlinson said, “who’s going to deliver it?”
Even with the decline in the nation’s rural population, many people are rooted in rural America because of family or because they like the outdoors and a slower pace of life. One of them is Gene Davies, who has lived in Arco more than 60 years, runs a mechanic shop straight out of a different era. Handwritten signs sit on a wooden chair next to the door: “Gone to Dr.” “Be back tomorrow.” “Hope to be back Monday.”
Davies said he appreciates the remoteness of the region. “I ain’t got no plans to go anywhere else,” he said. “I’ve seen enough of the other world. I don’t want it.”
Rosenkrance, the cattle farmer, said she’s not going anywhere, either. She’s been coming to the hospital since she was a child, when she ran through the halls while her father worked in the pharmacy. Now her husband teases her about having a standing reservation in the emergency room.
Just before discharging Rosenkrance, nurse Celeste Parson told her she needed to rest physically and mentally. The accident had left her with a concussion, a lacerated ear and a black eye. Then Parson issued her the most important instruction: Don’t do anything that could cause another blow to the head.
“We would really like you to rest up for at least a week,” Parson said. “But the doctor knows for you, two or three days is more realistic.”
As she grabbed an ice pack and her purse, Rosenkrance reflected on the importance of Lost Rivers for residents across the whole valley.
“This hospital is a big deal,” she said. “It’s saved a lot of lives.”
As a drug salesman, Mike Courtney worked hard to make health care expensive. He wined and dined doctors, golfed with them and bought lunch for their entire staffs — all to promote pills often costing thousands of dollars a year.
Now he’s on a different mission. When Courtney calls on doctors these days, he champions generic drugs that frequently cost pennies and work just as well as the kinds of pricey brands he used to push.
Instead of big pharma, he works for Capital District Physicians’ Health Plan (CDPHP), an Albany, N.Y., insurer. Instead of maximizing pill profits, his job is to save millions of dollars by educating doctors about expensive prescriptions and the stratagems used to sell them.
“Having come from big pharma, I do really feel my soul has been cleansed,” laughs Courtney, who formerly worked for Pfizer and Johnson & Johnson. “I do feel like I’m more in touch with the physicians” and plan members, he added.
Consumer groups and medical societies have tried to spread the word about expensive drugs. Startup GoodRx lets patients compare retail prices online.
CDPHP is one of the few insurers to have taken the battle against pricey pills a step further. It is recruiting across enemy lines, hiring former pharma representatives and staffing what may be a new job category: a sales force for cost-effective medicine.
“Insurers are taking matters into their own hands,” said Lea Prevel Katsanis, a marketing professor at Canada’s Concordia University who specializes in the pharmaceutical industry. “They’re saying, ‘We can’t really rely on drug companies to talk to doctors about what’s cost-efficient.’”
If insurance companies can curb drug costs, premiums paid by employers, taxpayers and consumers need not rise as fast.
Two years ago, when one company increased the cost of a common diabetes medicine to 20 times what it had been a few years earlier, Courtney and five other former pharma and medical-device reps working for CDPHP knew what to do.
Valeant Pharmaceuticals had cranked up the price of one common dosage of its Glumetza medicine for lowering blood sugar to an astonishing $81,270 a year, according to Truven Health Analytics, a data firm. Meanwhile a similar, generic version can be bought for as little as a penny a pill.
Because Glumetza was on CDPHP’s list of approved drugs, the insurer and its members had to pay for it when doctors prescribed it, resulting in millions in extra costs and stinging copayments for patients.
Dr. Eric Schnakenberg, an upstate New York family medicine doctor, was shocked when patients began complaining about what he assumed was an inexpensive prescription. Doctors are famously unaware about the cost of the care they order, a situation exploited by drug sellers and other vendors.
While physicians’ electronic prescribing programs and even pharmaceutical guides like the Physicians’ Desk Reference contain prescribing information — some are even peppered with ads — they contain no specific information about prices. Drug sales reps who visit their offices don’t highlight high prices as they drop off free samples, and drugmakers can quietly, but substantially, hike the price of a drug from one year to the next.
“As physicians, we’re blindsided by that,” Schnakenberg said. “We get patient complaints saying, ‘Hey, I can’t afford this,’ and we say: ‘It’s cheap!’”
After Courtney and his colleagues alerted doctors to what Valeant was up to, all but a handful of the 60 plan members who were taking Glumetza switched to metformin, the generic alternative. That saved about $5 million in a year.
Following an outcry over its practices, Valeant agreed last year to raise annual prices by no more than single-digit percentages, the company said through a spokesman. But such hikes could still outpace the inflation rate.
Using ‘Those Powers For Good’
Cardiologist John Bennett got the idea to hire pharma reps a few years ago, after he became CDPHP’s chief executive. He knew reps are smart, genial and motivated. Overhiring by pharma had put many back on the job market.
His sales pitch to them, he says half-jokingly, was: “You know everything they taught you in big pharma? How would you like to use those powers for good?”
Pharma companies spend billions on TV ads, doctor blandishments and expensive salespeople to keep prescriptions flowing.
Pfizer, Johnson & Johnson and other sellers responded to critics a few years ago by restricting gifts of entertainment, coffee mugs and some meals. But the industry’s ethics code still allows lavish consulting contracts for doctors and sponsorship of physician conferences as well as meals for doctors and their staffs who listen to an “informational presentation” from sales reps touting expensive pills.
“When those products go generic, nobody’s promoting them anymore,” Courtney said. Generics makers lack big marketing budgets. CDPHP’s remedy: The insurer promotes generics with its own reps.
“It’s a great idea,” said Alan Sorensen, an economist at the University of Wisconsin who has studied drug prices. “Even a small moving of the needle on their [doctors’] prescribing behavior can have a pretty big impact on costs.”
At first the team concentrated on educating doctors about cheaper alternatives to Lipitor, a widely prescribed cholesterol-lowering medicine, and Nexium, for stomach problems. That saved around $10 million the first year, much in the form of copayments that would have been owed by plan members.
Recently the plan has focused on Seroquel, a branded antipsychotic that costs far more than a similar generic. Switching to the generic saves $600 to $1,000 a month, estimates Eileen Wood, the insurer’s vice president of pharmacy and health quality.
CDPHP’s repurposed reps have helped keep the insurer’s annual drug-cost increases to single-digit percentages, whereas without them and other measures “we would certainly be well into double-digit” increases, she said.
Educating doctors about drug costs is part of a larger push for “transparency” in an industry where Princeton economist Uwe Reinhardt says consumers face the same experience as somebody shopping in Macy’s blindfolded.
Current research by the University of Wisconsin’s Sorensen finds physicians with access to data about drug prices and insurance coverage are more likely to prescribe generics.
That gives Courtney and his colleagues a fighting chance, even if, he said, “we don’t have the freewheeling, unlimited green Amex card like I did back in the day.”
Like many peers in their 70s, Lois and Richard Jones of Media, Pa., sold their home and downsized, opting for an apartment in a nearby senior living community they had come to know well. For 13 years, they have visited Lois’ mother, Madge Wertzberger, there.
Wertzberger, 95, is in assisted living at Granite Farms Estates. Lois, 73, and Richard, 76, who have been married 56 years, moved into an adjoining building in October.
“It wouldn’t take me more than three minutes to walk to where she is,” said Lois. “I don’t have to drive anywhere to help her or to meet with her [medical] team. I’m right here.”
The Joneses are great-grandparents. Yet they’re among a growing group of seniors with a living parent, which means these 21st-century post-retirement years might well include parental caretaking. Expectations are altered amid the new reality of longer life expectancy and growing numbers of aged Americans.
“I pop in when I need to take something to her or discuss things. We see each other minimally once a week, and it can be more,” Jones said. “My youngest sister normally takes her to the doctor, but I do some sharing on that. Just because I’m here doesn’t mean I have to take her to her doctor’s appointments.”
Caregiving for an older family member is not what it was when first studied and coined as the “sandwich generation,” those people squeezed between aging parents and young children, said Amy Horowitz, a professor of social work at Fordham University in New York City.
“Now it’s the children who are on the verge of retirement or who have retired and are still having responsibility of older parents,” she said. “In New York City, I know somebody whose almost-90-year-old mother is living in the same apartment building. It becomes, how do you balance your own life?”
Lois and Richard Jones walk with Lois’ mother, Madge Wertzberger, center, at Granite Farms Estates in Media, Pa. The Joneses are great-grandparents, yet they’re among a growing group of seniors with a living parent. (Eileen Blass for KHN)
Kathrin Boerner, an associate professor of gerontology at the University of Massachusetts, Boston, discovered a recurring theme in her research on centenarians and their adult children — that is, very old parents and their elderly children. Even if their children are not direct caregivers, they still must monitor their parents’ welfare.
“With the demographics we’re looking at, I refer to it as ‘aging together,’ — the parent-child constellation will be a lot more frequent,” Boerner said.
“For a lot of people, that is the time — if you’re in good enough health — you hope for a time of greater freedom. You’re past all the other caregiving tasks and, for most people, they can dedicate to their own needs,” Boerner said. “But for those with very old parents, it just doesn’t happen.”
In her 2015 presentation at the Gerontological Society of America, she noted, “The very old are the fastest-growing segment of the population in most developed countries, with an expected increase of 51% of elders age 80+ between 2010 and 2030.” And, two-thirds of these very old have advanced-aged children, who typically serve as their primary caregiver.
“We heard things from someone like an 80-year-old — ‘I don’t have a life.’ Imagine that. You’re 80 years old, and ‘I don’t have a life because I’m caring for my mother,’” Boerner said.
Sometimes, it’s the older adult child with more health issues than the parent.
Carol Pali, 71, moved into Fort Washington Estates in Fort Washington, Pa., in October 2014, prompted by a diagnosis of multiple myeloma, a blood cancer, around the same time she retired from full-time teaching.
“It got to a point where I was in and out of the hospital all the time,” she said. “I just decided I might as well move in here, too. It’s better than having to take care of the house.”
Pali had lived in a townhouse around the corner from the community, where her mother, Peg Henrys, who turned 97 Saturday, had moved three years earlier.
“My mom moved from New Jersey to be closer to me,” she said.
Mother and daughter are in the independent-living section of Fort Washington Estates, about 25 miles north of Philadelphia.
“We get to see each other every day at dinner time, but she’s got her life here and I’ve got mine. We’re not with each other all the time,” Pali said.
“She’s in better shape than I am,” Pali said. “I had non-Hodgkin’s lymphoma before. And my mom has nothing, except she can’t hear very well.”
Fort Washington Estates is part of Acts Retirement-Life Communities, a suburban Philadelphia-based company operating continuing-care senior living communities in eight states, serving nearly 9,000 residents. Costs vary by location, type of community, occupants and contract, according to Acts spokesman Michael Smith.
Fees at Fort Washington are lower than the company average of $245,000 for the entrance fee and $2,800 a month, he said. At Fort Washington, the entrance fee starts at $140,000 and the monthly fee is $2,486. Smith said monthly fees do not increase with higher levels of care.
Theresa Perry, Acts’ corporate director of wellness services, said such parent-child arrangements are on the rise at their communities.
“They can keep an eye on Mom or Dad and don’t have to travel from where they lived,” Perry said. “It makes a big difference to them knowing the family is so close, and they can just walk over to visit.”
Jones, of Media, said she and her two sisters (one lives 10 minutes away; the other, 40 minutes away) have a weekly knitting date with their mother.
“We all knit and spend a good portion of the day with her,” Jones said of the Thursday sessions.
She also stays busy with Bible study, church services and programs featuring professors from local colleges — all on-site.
“We have joined in so many of the activities here,” she said. “We have a whole new social group. There are a lot of activities we participate in here at Granite Farms, but we haven’t given up our outside friends or activities.”
Jones said she and her husband sought to escape from the worries associated with a larger home and assume control over their future while they could. Living near her mother lets them blend caregiving with a relatively carefree lifestyle.
“We were looking to exchange responsibility for fun,” she said.
Under a new federal law, hospitals across the country must now alert Medicare patients when they are getting observation care and why they were not admitted — even if they stay in the hospital a few nights. For years, seniors often found out only when they got surprise bills for the services Medicare doesn’t cover for observation patients, including some drugs and expensive nursing home care.
The notice may cushion the shock but probably not settle the issue.
When patients are too sick to go home but not sick enough to be admitted, observation care gives doctors time to figure out what’s wrong. It is considered an outpatient service, like a doctor’s visit. Unless their care falls under a new Medicare bundled-payment category, observation patients pay a share of the cost of each test, treatment or other services.
And if they need nursing home care to recover their strength, Medicare won’t pay for it because that coverage requires a prior hospital admission of at least three consecutive days. Observation time doesn’t count.
“Letting you know would help, that’s for sure,” said Suzanne Mitchell, of Walnut Creek, Calif. When her 94-year-old husband fell and was taken to a hospital last September, she was told he would be admitted. It was only after seven days of hospitalization that she learned he had been an observation patient. He was due to leave the next day and enter a nursing home, which Medicare would not cover. She still doesn’t know why.
“If I had known [he was in observation care], I would have been on it like a tiger because I knew the consequences by then, and I would have done everything I could to insist that they change that outpatient/inpatient,” said Mitchell, a retired respiratory therapist. “I have never, to this day, been able to have anybody give me the written policy the hospital goes by to decide.” Her husband was hospitalized two more times and died in December. His nursing home sent a bill for nearly $7,000 that she has not yet paid.
The notice is — as of last Wednesday — one of the conditions hospitals must meet in order to get paid for treating Medicare beneficiaries, who typically account for about 42 percent of hospital patients. But the most controversial aspect of observation care hasn’t changed.
“The observation care notice is a step in the right direction, but it doesn’t fix the conundrum some people find themselves in when they need nursing home care following an observation stay,” said Stacy Sanders, federal policy director at the Medicare Rights Center, a consumer advocacy group.
Medicare officials have wrestled for years with complaints about observation care from patients, members of Congress, doctors and hospitals. In 2013, officials issued the “two-midnight” rule. With some exceptions, when doctors expect patients to stay in the hospital for more than two-midnights, they should be admitted, although doctors can still opt for observation.
But the rule has not reduced observation visits, the Health and Human Services inspector general reported in December. “An increased number of beneficiaries in outpatient stays pay more and have limited access to [nursing home] services than they would as inpatients,” the IG found.
The new notice drafted by Medicare officials must be provided after the patient has received observation care for 24 hours and no later than 36 hours. Although there’s a space for patients or their representatives to sign it “to show you received and understand this notice,” the instructions for providers say signing is optional.
Some hospitals already notify observation patients, either voluntarily or in more than half a dozen states that require it, including California and New York.
Doctors and hospital representatives still have questions about how to fill out the new observation care form, including why the patient has not been admitted. During a conference call Feb. 28, they repeatedly asked Medicare officials if the reason must be a clinical one specific for each patient or a generic explanation, such as the individual did not meet admission criteria. The officials said it must be a specific clinical reason, according to hospital representatives who were on the call.
Atlanta’s Emory University hospital system added a list of reasons to the form that its doctors can check off, “to minimize confusion and improve clarity,” said Michael Ross, medical director of observation medicine and a professor of emergency medicine at Emory. Emory also set up a special help line for patients and their families who want more information, he said.
The form also explains that observation care is covered under Medicare’s Part B benefit, and patients “generally pay a copayment for each outpatient hospital service” and the amounts can vary. But Ross said “this wording may be antiquated.” Medicare revised some billing codes last year to combine several observation services into one category. That means beneficiaries are responsible for one copayment if the observation stay meets certain criteria.
The new payment package also includes coverage for some prescription drugs to treat the emergency condition that brought the observation patient to the hospital, said Debby Rogers, the California Hospital Association’s vice president of clinical performance and transformation. Other drugs for that condition will be billed under Part B with separate copayments, she said.
But patients will have to pay out-of-pocket for any medications the hospital provides for preexisting chronic conditions such as high cholesterol, and then seek some reimbursement from their Medicare Part D drug plans for any covered drugs.
Yet, Ross said, most observation visits are less expensive for beneficiaries than a hospital admission if they stay a short time, which the inspector general’s report also concluded. Doctors should “front load” tests and treatment so that the decision to admit or send the patient home can be made quickly. “If you get them out within a day, they are more likely to go back to independent living as opposed to needing nursing home care,” he said.
Last summer, Judy Ehnert’s 88-year-old mother had a bad fall and broke her wrist. Following surgery, and additional complications, hospital officials told the family she would be kept for observation but she would need to go to a nursing home to recover. When the family learned what observation care meant, said Ehnert, a retired bookkeeper who lives in West Fargo, N.D., “that’s when we blew a cork.”
Then, after a few days in observation, Ehnert’s mother contracted an infection and she was admitted to the hospital. “Her care was totally the same, in the same room, with the same doctor, the same nurse.” And Medicare covered her nursing home care.
“That’s what I expected at her age,” Ehnert said. “I always thought that’s what Medicare was for.”
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.
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.
Humor May Be Antidote For Pain Of Death For Patients, Survivors
Just weeks before Christmas some years ago, Shirley Rapp and her family faced the devastating news that she had what appeared to be a terminal illness.
But that didn’t stop Rapp from wanting to do one last round of Christmas shopping for her kids. Her daughter, Karyn Buxman, a self-described neurohumorist and RN, went along. When the mother-daughter duo stepped into a St. Louis-area stationery store, Rapp picked up a day planner that she admired, turned to her daughter and quipped: “If I make it past Jan. 1, will you buy this one for me?”
That’s when Mom and daughter burst into laughter that attracted every eye in the store.
For some folks, the process of dying comes with less stress when it’s something of a laughing matter. Not a yuk-yuk laughing matter. But, at its simplest, a willingness to occasionally make light of the peculiarities — if not absurdities — that often go hand-in-hand with end-of-life situations.
An aging generation of boomers, the oldest of whom are now 70, grew up to the background sounds of TV laugh tracks and are accustomed to laughing at things that might not always seem so funny. There’s even a non-profit organization funded by donors, conference revenue and membership dues, whose mission is simply reminding people that laughter is a core ingredient of all facets of life — even end of life.
Humor is particularly important when folks near end-of-life situations, says Morrison. Turning 70 hasn’t stopped her from engaging in activities specifically to make her laugh — like hopping on her pogo stick. “While death cannot be cured, your frame of mind is something that you can change.”
Her group has some loose guidelines for the use of humor among the dying. Most critically: Make certain that you know the ailing person very well before using humor with them.
On its website, the National Cancer Institute urges patients to build humor into their day-to-day lives, in ways as small as buying a funny desk calendar and watching comic films and TV shows.
Buxman, who earned a lifetime achievement award from the AATH, gives speeches on the importance of life’s comic moments. A former hospice nurse, she takes humor very seriously. She has studied the impact humor has on the brain and on the stress levels of patients in their final days. The right humor at the right time, she says, can infuse the brain with pleasurable hits of the stimulant Dopamine, decrease muscle tension and anxiety in the body’s nervous system, and momentarily diminish feelings of anger or sadness.
As it turns out, her mom survived her initial illness — only to later develop a fatal form of Alzheimer’s. Near the end, Buxman took her mom to the doctor’s office — at a time her mom had stopped responding to most external stimuli. While sitting in the waiting room, Buxman could hardly believe it when her mom uttered, “Make me laugh.”
Buxman knew this was the time to share a funny, family memory. She recounted to her mom the story about the time the two of them visited the kitchen section at a large department store and saw a display of frying pans cooking what appeared to be artificial eggs. “This food looks so real,” her Mom said, poking her finger into the fake food. But the egg was real, and when the yolk popped, it oozed all over Rapp and the display.
“As I recounted this story, Mom’s face moved and her eye’s sparkled — and the two of us just doubled-over with laughter,” says Buxman. “Even near death, we can still communicate to the most primitive part of the brain — with laughter.”
But family-related humor isn’t only acceptable in terminal situations — it’s often helpful.
Just ask Paula McCann, an elder attorney from Rutland, Vt., who writes the blog onthewaytodying.com. She recalls when her then 83-year-old father, John, who was diagnosed with Alzheimer’s, requested to die at home. His children and wife took turns caring for him. One evening, McCann sat with her mother at her father’s side, shortly after he had been administered his last rites. Mother and daughter started to discuss where his soul was at that moment. McCann suggested to her Mom that perhaps it was in a holding pattern, while God reviewed the right and wrong he’d done, before allowing him into heaven. That’s when her mother quipped, “He’ll be there forever.”
A sense of humor about all of the drugs patients deal with at life’s end, helped Ronald Berk, former assistant dean at John Hopkins University, through a rough patch. His wife, Marion Smith-Waison, a former OBGYN doctor, was very ill before her death 18 months ago. She had scheduled a meeting at their home with folks offering holistic medicines. When Berk entered the room, a drug counselor asked him, “Are you taking any medications?” Berk shot back, “Yes, I was taking crack — but I gave it up for lent.”
Berk insists humor at that stressful moment offered a critical “release valve.”
Chip Lutz, a professional speaker who retired from the Navy years ago, recalls the importance of shared humor before his father, Eugene, died last year. Trying to squeeze an extra hug out of visiting family members, Eugene often cajoled them with, “Well, this might be the last time you see me.”
But Eugene’s son, Chip, had the perfect response. “You can’t die yet — I don’t have your eulogy done,” he shot back.
Few people hear more morbid jokes than hospice workers. Several years ago, Allen Klein, an author and motivational speaker, volunteered at a hospice in the San Francisco Bay area. An elderly woman he was assisting told him that after she died, she wanted her husband’s bedroom repainted — with her cremated ashes mixed into the paint.
“Why would you want that?” inquired a confused Klein.
“So I can look down at my husband and see if there’s any hanky-panky going on.”
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.”
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.
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.
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.”
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.
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.
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.
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.
California officials have fined health care giant Kaiser Permanente $2.5 million for failing to turn over required data on patient care to the state’s Medicaid program.
The California Department of Health Care Services said this was the first fine imposed against one of its Medicaid managed care plans since at least 2000. The state relies on the data to help set rates, ensure adequate care is available and monitor how taxpayer dollars are being spent in the program, known as Medi-Cal in California.
Jennifer Kent, the department’s director, notified Kaiser of the sanctions in a Jan. 13 letterthat was obtained by California Healthline. The department later posted it online.
“This is the first time the department has sanctioned a health plan in recent history. The amount is significant,” said Sarah Brooks, deputy director of health care delivery systems at the Department of Health Care Services. “We do take it very seriously.”
Kaiser isn’t appealing the sanctions and the health plan said it’s “working toward compliance.” The company said the sanctions were in no way related to the quality of patient care or access to treatment. (Kaiser Health News, which produces California Healthline, is not affiliated with Kaiser Permanente.)
Brooks said her agency is in ongoing discussions with Kaiser and additional fines could be imposed depending on the company’s actions and whether Kaiser’s violations put the agency out of compliance with federal rules. That could force the state to repay money to the Centers for Medicare & Medicaid Services, which funds the Medi-Cal program jointly with the state.
Kaiser, the state’s dominant HMO, is among 22 health plans that participate in the Medi-Cal managed care program, which covers about 80 percent of Medi-Cal enrollees in the state.
The Oakland-based company failed to submit data on out-of-network care that Medi-Cal patients received from November 2014 to September 2016, according to the state. Kaiser also didn’t file data on “all physician-administered drugs” from March 2010 to March 2015, records show. That information is about infusions and other drugs given to patients in a doctor’s office or clinic.
The insurer missed a June 30 deadline to comply and a subsequent one Jan. 1, which triggered the current penalties. The fine related to medical claims was $742,500 and the drug data fine was $1.79 million, for a total of $2.5 million.
The reporting lapses are unusual since Kaiser pioneered use of electronic medical records and health data collection. But the company indicated in a statement that being an integrated health system that operates a health plan, its own hospitals and medical groups complicated matters.
Nathaniel Oubre, Kaiser Permanente’s vice president for Medi-Cal, said its systems and technology — including electronic health records — are focused on “quality, access and integration of care.”
But he said the systems were not designed or updated to collect information in the format required by the state.
“We are taking steps to change this,” he said. “We are making investments in technology that will facilitate compliance with the state’s data reporting requirements.”
Medi-Cal represents a small portion of Kaiser’s overall business, and some industry experts said the company may have been hesitant to alter its information technology systems to meet the state’s demands.
Kaiser said it serves about 700,000 Medi-Cal enrollees across the state. Rival Anthem Inc. serves more than 1 million Medi-Cal patients.
In Medi-Cal managed care, the state pays insurers a fixed amount per enrollee to provide comprehensive care. That’s different from the conventional fee-for-service system in which the state pays medical providers directly for services rendered.
In addition to being an insurer, Kaiser runs 38 hospitals across the country and hundreds of clinics. More than 18,000 salaried doctors work at its affiliated medical groups. Kaiser operates in eight states and the District of Columbia, but nearly 80 percent of its 10.6 million members are in California. For 2015, the company reported revenue of $60.7 billion and net income of $1.9 billion.
Kaiser has faced other stiff fines from California regulators. In 2013, the California Department of Managed Health Care fined the insurer $4 million for problems related to mental health treatment.
Two years later, the managed care agency criticized Kaiser again for failing to address the long delays in treatment for mental health patients.
Brooks said the state is rolling out a new ratings system for all Medi-Cal managed care plans next year that will track the quality of patient care, appeals processes, contract compliance and other performance measures.