Even though he’s a match, past mistakes prevent a dad from donating a kidney to his son

Even though he’s a match, past mistakes prevent a dad from donating a kidney to his son

Kidney donation A Georgia man’s criminal history is currently being used to prevent him from donating a kidney to his son, a life-saving treatment for the toddler. Anthony Dickerson’s 2-year-old son, AJ Burgess, was born prematurely without a functioning kidney. He currently weighs 25 pounds, is in and out of the hospital, and even suffered a… (more…)

Absent Federal Action, States Take The Lead On Curbing Drug Costs

Absent Federal Action, States Take The Lead On Curbing Drug Costs

Lawmakers in Maryland are daring to legislate where their federal counterparts have not: As of Oct. 1, the state will be able to say “no” to some pharmaceutical price spikes.

A new law, which focuses on generic and off-patent drugs, empowers the state’s attorney general to step in if a drug’s price climbs 50 percent or more in a single year. The company must justify the hike. If the attorney general still finds the increase unwarranted, he or she can file suit in state court. Manufacturers face a fine of up to $10,000 for price gouging.

As Congress stalls on what voters say is a top health concern — high pharmaceutical costs — states increasingly are tackling the issue. Despite often-fierce industry opposition, a variety of bills are working their way through state governments. California, Nevada and New York are among those joining Maryland in passing legislation meant to undercut skyrocketing drug prices.

Maryland, though, is the first to penalize drugmakers for price hikes. Its law passed May 26 without the governor’s signature.

The state-level momentum raises the possibility that — as happened with hot-button issues such as gay marriage and smoke-free buildings — a patchwork of bills across the country could pave the way for more comprehensive national action. States feel the squeeze of these steep price tags in Medicaid and state employee benefit programs, and that applies pressure to find solutions.

“There is a noticeable uptick among state legislatures and state governments in terms of what kind of role states can play in addressing the cost of prescription drugs and access,” said Richard Cauchi, health program director at the National Conference of State Legislatures.

Many experts frame Maryland’s law as a test case that could help define what powers states have and what limits they face in doing battle with the pharmaceutical industry.

The generic-drug industry filed a lawsuit to block the law from taking effect, arguing it’s unconstitutionally vague and an overreach of state powers. A federal court judge on Friday denied their request for an injunction.

The state-level actions focus on a variety of tactics:

“Transparency bills” would require pharmaceutical companies to detail a drug’s production and advertising costs when they raise prices over certain thresholds.
Cost-limit measures would cap drug prices charged by drugmakers to Medicaid or other state-run programs, or limit what the state will pay for drugs.
Supply-chain restrictions include regulating the roles of pharmacy benefit managers or limiting a consumer’s out-of-pocket costs.

A New York law on the books since spring allows officials to cap what its Medicaid program will pay for medications. If companies don’t sufficiently discount a drug, a state review will assess whether the price is out of step with medical value.

Maryland’s measure goes further — treating price gouging as a civil offense and taking alleged violators to court.

“It’s a really innovative approach. States are looking at how to replicate it, and how to expand on it,” said Ellen Albritton, a senior policy analyst at the left-leaning Families USA, which has consulted with states including Maryland on such policies.

Lawmakers have introduced similar legislation in states such as Massachusetts, Rhode Island, Tennessee and Montana. And in Ohio voters are weighing a ballot initiative in November that would limit what the state pays for prescription drugs in its Medicaid program and other state health plans.

Meanwhile, the California legislature passed a bill earlier in September that would require drugmakers to disclose when they are about to raise a price more than 16 percent over two years and justify the hike. It awaits Democratic Gov. Jerry Brown’s signature.

In June, Nevada lawmakers approved a law similar to California’s but limited to insulin prices. Vermont passed a transparency law in 2016 that would scrutinize up to 15 drugs for which the state spends “significant health care dollars” and prices had climbed by set amounts in recent years.

(Story continues below.)

But states face a steep uphill climb in passing pricing legislation given the deep-pocketed pharmaceutical industry, which can finance strong opposition, whether through lobbying, legal action or advertising campaigns.

Last fall, voters rejected a California initiative that would have capped what the state pays for drugs — much like the Ohio measure under consideration. Industry groups spent more than $100 million to defeat it, putting it among California’s all-time most expensive ballot fights. Ohio’s measure is attracting similar heat, with drug companies outspending opponents about 5-to-1.

States also face policy challenges and limits to their statutory authority, which is why several have focused their efforts on specific parts of the drug-pricing pipeline.

Critics see these tailored initiatives as falling short or opening other loopholes. Requiring companies to report prices past a certain threshold, for example, might encourage them to consistently set prices just below that level.

Maryland’s law is noteworthy because it includes a fine for drugmakers if price increases are deemed excessive — though in the industry that $10,000 fine is likely nominal, suggested Rachel Sachs, an associate law professor at Washington University in St. Louis who researches drug regulations.

This law also doesn’t address the trickier policy question: a drug’s initial price tag, noted Rena Conti, an assistant professor in the University of Chicago who studies pharmaceutical economics.

And its focus on generics means that branded drugs, such as Mylan’s Epi-Pen or Kaleo’s overdose-reversing Evzio, wouldn’t be affected.

Yet there’s a good reason for this, noted Jeremy Greene, a professor of medicine and the history of medicine at Johns Hopkins University who is in favor of Maryland’s law.

Current interpretation of federal patent law suggests that the issues related to the development and affordability of on-patent drugs are under federal jurisdiction, outside the purview of states, he explained.

In Maryland, “the law was drafted narrowly to address specifically a problem we’ve only become aware of in recent years,” he said. That’s the high cost of older, off-patent drugs that face little market competition. “Here’s where the state of Maryland is trying to do something,” he said.

KHN’s coverage of prescription drug development, costs and pricing is supported in part by the Laura and John Arnold Foundation.

Older cancer patients rate own physical abilities as better than their caregivers do

Older cancer patients rate own physical abilities as better than their caregivers do

Older cancer patients and their caregivers often differ in their assessment of the patient’s physical abilities, with caregivers generally rating the patient’s physical function as poorer, according to a new study published in The Oncologist. The study also found that differences in assessment of physical abilities between patients and caregivers were associated with greater caregiver burden.

For as long as possible, older cancer patients are generally cared for in their own homes by family or friends, with spouses being the most common caregivers. This care can include everything from ensuring patients take their medication to transporting them to hospital appointments to bathing and dressing them, and can impose emotional, financial and physical burdens on caregivers.

“Caregivers are such an important part of our healthcare system, particularly for older adults with cancer,” says corresponding author Arti Hurria at City of Hope National Medical Center, CA. “We wanted to further understand the factors that are associated with caregiver burden.”

Based on their experiences treating older cancer patients, one factor Hurria and her colleagues at City of Hope thought might be important is differences in assessments of patient health and physical abilities between patients and their caregivers. “In daily practice we sometimes see a disconnect between what the patient perceives their general health and abilities to be in comparison to what the caregiver thinks. We wanted to see whether this disconnect impacted caregiver burden.”

To do this, Hurria and her colleagues questioned 100 older cancer patients being treated at City of Hope, together with their caregivers, about the patient’s general health and physical function, meaning their ability to perform everyday activities. They then compared the answers given by the patients and their respective caregivers. They also assessed the level of caregiver burden experienced by the caregivers, defined as a subjective feeling of stress caused by being overwhelmed by the demands of caring, by conducting a standard questionnaire on topics such as sleep disturbance, physical effort and patient behavior.

The 100 cancer patients, aged from 65 to 91, were suffering from a variety of different types of cancer, with the most common being lymphoma, breast cancer and gastrointestinal cancers. The ages of the caregivers ranged from 28 to 85 and the majority were female (73%), mainly either the spouse of the patient (68%) or an adult child (18%).

Hurria and her colleagues found that caregivers consistently rated patients as having poorer physical function and mental health and requiring more social support than the patients themselves did. However, only the disparity in the assessment of physical function was associated with greater caregiver burden. What is still unclear is the cause of this disparity.

“I think there are two possible explanations,” says first author Tina Hsu. “One is that older adults with cancer either don’t appreciate how much help they require or, more likely, they are able preserve their sense of independence and dignity through a perception that they feel they can do more than they really can. Alternatively, it is possible that caregivers who are more stressed out perceive their loved one to require more help than they actually do need. Most likely, the truth of how much help the patient actually needs lies somewhere between what patients and caregivers report.”

Based on their findings, Hsu, Hurria and their colleagues advise that clinicians should consider assessing caregiver burden in those caregivers who report the patient as being more dependent than the patient does themselves.

“Caregivers play an essential role in supporting older adults with cancer,” says Hsu. “We plan to further explore factors associated with caregiver burden in this population, particularly in those who are frailer and thus require even more hands-on support. We also hope to explore what resources caregivers of older adults with cancer feel they need to better help them with their role.”

Bruce A. Chabner, MD, Editor-in-Chief of The Oncologist, commented, “This report emphasizes the importance of direct communication between the health care team and the patient.  Among older patients, the reports of local caregivers may not accurately reflect the patient’s sense of well-being and symptoms.  The message is:  talk to the patient first!”


Article citation: “Are Disagreements in Caregiver and Patient Assessment of Patient Health Associated with Increased Caregiver Burden in Caregivers of Older Adults with Cancer?” Tina Hsu, Matthew Loscalzo, Rupal Ramani, Stephen Forman, Leslie Popplewell, Karen Clark, Vani Katheria, Rex Strowbridge, Redmond Rinehart, Dan Smith, Keith Matthews, Jeff Dillehunt, Tao Feng, David Smith, Canlan Sun, Arti Hurria. The Oncologist. Published Online: August 14, 2017; DOI: 10.1634/theoncologist.2017-0085. http://dx.doi.org/10.1634/theoncologist.2017-0085

About The Oncologist
Now celebrating its 22nd edition, this internationally peer-reviewed journal focuses on clear and concise interpretation addressing the multimodality diagnosis, treatment and quality of life of the cancer patient. Each issue is meant to impact the practice of oncology and to facilitate significant communication in the introduction of new medical treatments and technologies. The Oncologist is the official journal of the Society for Translational Oncology (STO).

About AlphaMed Press
Established in 1983, AlphaMed Press, which has offices in Durham, NC, San Francisco, CA, and Belfast, Northern Ireland, is the publisher of three internationally renowned peer-reviewed journals. The Oncologist® (www.TheOncologist.com), which is entering its 20th year, is devoted to community and hospital-based oncologists and physicians entrusted with cancer patient care. STEM CELLS® (www.StemCells.com), celebrating its 35th year, is the world’s first journal devoted to this fast paced field of research. STEM CELLS Translational Medicine® (www.StemCellsTM.com), currently in its sixth year, is dedicated to significantly advancing the clinical utilization of stem cell molecular and cellular biology.

About Wiley
Wiley, a global company, helps people and organizations develop the skills and knowledge they need to succeed. Our online scientific, technical, medical and scholarly journals, combined with our digital learning, assessment and certification solutions, help universities, learned societies, businesses, governments and individuals increase the academic and professional impact of their work. For more than 200 years, we have delivered consistent performance to our stakeholders. The company’s website can be accessed at www.wiley.com.

Nursing Home Disaster Plans Often Faulted As ‘Paper Tigers’

Nursing Home Disaster Plans Often Faulted As ‘Paper Tigers’

It does not take a hurricane to put nursing home residents at risk when disaster strikes.

Around the country, facilities have been caught unprepared for far more mundane emergencies than the hurricanes that recently struck Florida and Houston, according to an examination of federal inspection records. Those homes rarely face severe reprimands, records show, even when inspectors identify repeated lapses.

In some cases, nursing homes failed to prepare for basic contingencies.

In one visit last May, inspectors found that an El Paso, Texas, nursing home had no plan for how to bring wheelchair-dependent people down the stairs in case of an evacuation. Inspectors in Colorado found a nursing home’s courtyard gate was locked and employees did not know the combination, inspection records show. During a fire at a Chicago facility, residents were evacuated in the wrong order, starting with the people farthest from the blaze.

Nursing home inspectors issued 2,300 violations of emergency-planning rules during the past four years. But they labeled only 20 so serious as to place residents in danger, the records show.

In addition, a third of U.S. nursing homes have been cited for another type of violation: failing to inspect their generators each week or to test them monthly. None of those violations was categorized as a major deficiency, even at 1,373 nursing facilities that were cited more than once for neglecting generator upkeep, the records show.

“That’s the essential problem with the regulatory system: It misses many issues, and even when it identifies them, it doesn’t treat them seriously enough,” said Toby Edelman, a senior policy attorney at the Center for Medicare Advocacy. “It’s always the same story: We have some pretty good standards and we don’t enforce them.”

In the wake of eight deaths at Rehabilitation Center at Hollywood Hills, Fla., following Hurricane Irma, heightened attention has focused on new federal disaster-planning rules, with which nursing homes must comply by mid-November. Those were prompted by nursing home and hospital deaths during Hurricane Katrina in Louisiana in 2005.

Dr. David Gifford, senior vice president for quality and regulatory affairs at the American Health Care Association, a nursing home industry group, said facilities have gotten better at handling disasters after each one. Most evacuations go smoothly, he said.

“After each one of these emergencies we’ve learned and gotten better,” Gifford said.

But advocates for the elderly say enforcement of rules is as great a concern, if not greater.

Dr. David Marcozzi, a former director of the federal emergency preparedness program for health care, said that inspectors — also known as surveyors —  should observe nursing home staff demonstrating their emergency plans, rather than just checking that they have been written down.

“If you have not implemented and exercised plans, they are paper tigers,” said Marcozzi, now an associate professor at the University of Maryland School of Medicine. “The emphasis from the surveyor has to be ‘Show me how you do this.’ ”

Gifford said pre-planning and drills, which are important, only go so far in chaotic events such as hurricanes.

“No matter what planning you might have, what we have learned from these emergencies is these plans don’t always work,” he said. Nursing homes take surveys seriously and face closure if they do not fix flaws inspectors identify, he added.

Inspection results vary widely by state, influenced sometimes by lax nursing homes or more assertive surveyors, or a combination, according to an analysis of two types of emergency-planning deficiencies. In California, 53 percent of nursing facilities have been cited for at least one of two types of emergency-planning deficiencies, and a quarter have been cited in Texas. No nursing home in Indiana, Mississippi or Oregon was issued violations for those two emergency-planning violations during the past four years.

Asked to explain the rarity of severe citations in emergency preparation, the federal Centers for Medicare & Medicaid Services, which oversees inspections, referred a reporter to its emergency-preparedness mission statement on its website.

The danger of high temperatures for elderly residents, which the Hollywood Hills case shows can be disastrous, has been well known. In a heat wave in 2000, two nursing home residents in a Burlingame, Calif., facility died and six others suffered severe dehydration, heat stroke or exhaustion.

During the past four years, inspectors have cited 536 nursing homes for failing to maintain comfortable and safe temperature levels for residents. Inspectors deemed 15 as serious, including two where patients were harmed, records show.

“There is undoubtedly little, if any, enforcement of the laws since we see the same tragedies repeated time and again,” said Patricia McGinnis, executive director of California Advocates for Nursing Home Reform.

Clarification: This story was updated on Sept. 19 clarify to make clear that 53 percent of nursing facilities in California and a quarter of them in Texas were cited for at least one of two types of emergency-planning deficiencies — not both types of deficiencies.

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation. Coverage of aging and long-term care issues is supported by The SCAN Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Elder Abuse: ERs Learn How To Protect A Vulnerable Population

Elder Abuse: ERs Learn How To Protect A Vulnerable Population

Abuse often leads to depression and medical problems in older patients — even death within a year of an abusive incident.

Yet, those subjected to emotional, physical or financial abuse too often remain silent. Identifying victims and intervening poses challenges for doctors and nurses.

Because visits to the emergency room may be the only time an older adult leaves the house, staff in the ER can be a first line of defense, said Tony Rosen, founder and lead investigator of the Vulnerable Elder Protection Team (VEPT), a program launched in April at the New York-Presbyterian Hospital/Weill Cornell Medical Center ER.

The most common kinds of elder abuse are emotional and financial, Rosen said, and usually when one form of abuse exists, so do others. According to a New York study, as few as 1 in 24 cases of abuse against residents age 60 and older were reported to authorities.

The VEPT program — initially funded by a small grant from The John A. Hartford Foundation (a Kaiser Health News funder) and now fully funded by the Fan Fox and Leslie R. Samuels Foundation — includes Presbyterian Hospital emergency physicians Tony Rosen, Mary Mulcare and Michael Stern. These three doctors and two social workers take turns being on call to respond to signs of elder abuse. Also available when needed are psychiatrists, legal and ethical advisers, radiologists, geriatricians and security and patient-services personnel.

“We work at making awareness of elder abuse part of the culture in our emergency room by training the entire staff in how to recognize it,” said Rosen. It’s easy for the ER staff to alert the VEPT team and begin an investigation, he said.

A doctor interviews the patient and conducts a head-to-toe physical exam looking for bruises, lacerations, abrasions, areas of pain and tenderness. Additional testing is ordered if the doctor suspects abuse.

“Unlike with child abuse victims, where there is a standard protocol in place for screening, there is no equivalent for the elderly, but we have designed and are evaluating one,” said Rosen.

The team looks for specific injuries. For example, radiographic images show old and new fractures, which suggest a pattern of multiple traumatic events. Specific types of fractures may indicate abuse, such as midshaft fractures in the ulna, a forearm bone that can break when an older adult holds his arm in front of his face to protect himself.

When signs of abuse are found but the elder is not interested in cooperating with finding a safe place or getting help, a psychiatrist is asked to determine if that elder has decision-making capacity. The team offers resources but can do little more if the patient isn’t interested. They would have to allow the patient to return to the potentially unsafe situation.

Patients who are in immediate danger and want help or are found not to have capacity may be admitted to the hospital and placed in the care of a geriatrician until a solution can be found. Unlike with children and Child Protective Services, Adult Protective Services won’t become involved until a patient has been discharged, so hospitalization can play an important role in keeping older adults safe.

During the first three months of the program, more than 35 elders showed signs of abuse, and a large percentage of them were later confirmed to be victims. Changes in housing or living situations were made for several of them.

“It’s difficult to identify and measure appropriate outcomes for elder abuse victims, because each patient may have different care goals,” said Rosen, “but we are working on making a case that detection of elder abuse and intervention in the ER will improve the patients’ lives. We also hope to show that it will save money, because when an elder is in a safe place, expensive, frequent trips to the ER may no longer be needed.”

The team’s ultimate goal is to optimize acute care for these vulnerable victims and ensure their safety. They plan to work at continually tweaking VEPT to improve the program and to connect to emergency medical, law enforcement and criminal justice services. Eventually, they hope to help other emergency departments set up similar programs.

KHN’s coverage related to aging & improving care of older adults is supported by The John A. Hartford Foundation.

Over 500k Americans discuss end of life care through Medicare

Over 500k Americans discuss end of life care through Medicare

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.”

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.

Medicare Unveils ‘Skeletal’ Site For Hospice Comparison Shopping

Medicare Unveils ‘Skeletal’ Site For Hospice Comparison Shopping

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.

KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Vets bill to keep veterans choice program afloat is signed

Vets bill to keep veterans choice program afloat is signed

Donald Trump signs vets bill to keep veterans choice program afloat

President Trump on Saturday signed a bill that will pump funds into the Veterans choice program to keep it up and running, while Washington continues to fight over how best to give veterans the care they earned – but which the government has sometimes failed to deliver. Approved in the wake of the wait-list scandal that… (more…)

Cancer survivors are more likely to use opioids

Cancer survivors are more likely to use opioids

A new study found that opioid prescription use is more common in cancer survivors than in individuals without a history of cancer. This was true even among survivors who were ten or more years past their cancer diagnosis. Published early online in CANCER, a peer-reviewed journal of the American Cancer Society, the findings come at a time of rising rates of opioid overdose and addiction that experts have categorized as an epidemic.

Little is known about prescribing opioids to relieve pain in individuals who have survived cancer. To investigate, Rinku Sutradhar, PhD, a senior scientist at the Institute for Clinical Evaluative Sciences in Toronto and an associate professor with the University of Toronto in Canada, and her colleagues analyzed information dating back to 2010 on 8601 adults at least five years past a cancer diagnosis who were matched with 8601 individuals without a prior cancer diagnosis based on sex and calendar year of birth. Follow-up was stopped at any indication of cancer recurrence, second malignancy, or new cancer diagnosis. The researchers looked for opioid prescriptions filled at a pharmacy during the observation period for each individual.

The rate of opioid prescribing was 1.22 times higher among survivors than corresponding matched controls. Over a 36-month period, the average number of opioid prescriptions filled by survivors was 7.7, compared with 6.3 for controls. This increased rate of opioid prescribing was also seen among survivors who were 10 or more years past their cancer diagnosis. Individuals with lower income, and those who were younger, from rural neighborhoods, and with more comorbidities had significantly higher prescribing rates. Sex was not associated with prescribing rates.

“Our research findings raise concerns about the diagnosis and management of chronic pain problems among survivors stemming from their cancer diagnosis or treatment,” said Dr. Sutradhar. “Physicians providing primary care to cancer survivors should consider close examination of reasons for continued opioid use to differentiate chronic pain from dependency.”


Full Citation: “Cancer survivorship and opioid prescribing rates: a population-based matched cohort study among individuals with and without a prior history of cancer.” Rinku Sutradhar, Armend Lokku, and Lisa Barbera. CANCER; Published Online: August 7, 2017 (DOI: 10.1002/cncr.30839).

 

URL Upon Publicationhttp://doi.wiley.com/10.1002/cncr.30839

About the Journal
CANCER is a peer-reviewed publication of the American Cancer Society integrating scientific information from worldwide sources for all oncologic specialties. The objective of CANCER is to provide an interdisciplinary forum for the exchange of information among oncologic disciplines concerned with the etiology, course, and treatment of human cancer. CANCER is published on behalf of the American Cancer Society by Wiley and can be accessed online at http://wileyonlinelibrary.com/journal/cancer.

Follow us on Twitter @JournalCancer and Facebook https://www.facebook.com/ACSJournals

About Wiley
Wiley, a global company, helps people and organizations develop the skills and knowledge they need to succeed. Our online scientific, technical, medical, and scholarly journals, combined with our digital learning, assessment and certification solutions help universities, learned societies, businesses, governments and individuals increase the academic and professional impact of their work. For more than 200 years, we have delivered consistent performance to our stakeholders. The company’s website can be accessed at www.wiley.com.

Is it Alzheimer’s or another dementia form? Why doctors need to distinguish

Is it Alzheimer’s or another dementia form? Why doctors need to distinguish

Alzheimer’s disease now affects an estimated 5.5 million Americans, and after decades of feverish work, researchers have so far failed to find a treatment that halts or reverses the inexorable loss of memory, function and thinking ability that characterize this feared illness. But researchers have been quite successful at devising ways to diagnose Alzheimer’s earlier and… (more…)

Physicians need to openly discuss medical mistakes and near misses

Physicians need to openly discuss medical mistakes and near misses

Like many surgical problems, compartment syndrome must be recognized rapidly. Failing to do so may lead to a patient’s losing function in a limb, losing the limb altogether, and, in extreme cases, dying. A physician-in-training I work with missed it. Her error made me realize that medicine is suffering from its own largely unrecognized compartment syndrome.… (more…)

Terminal Cancer Patients can be Unwilling to Face Prognosis

Terminal Cancer Patients can be Unwilling to Face Prognosis

In a recent study, published in The Oncologist, just under 10% of patients diagnosed with terminal cancer did not know their prognosis and had no interest in finding out. This unwillingness to face a poor prognosis can lead to unnecessary treatments and prevent patients from making appropriate end of life (EOL) plans, causing their remaining time to be more stressful and traumatic that it need be.

“Healthcare professionals should appropriately assess patients’ readiness for prognostic information, and respect patients’ reluctance to confront their poor prognosis if they are not ready to know, but sensitively coach them to cultivate their accurate prognostic awareness,” says Siew Tzuh Tang, professor at Chang Gung University School of Nursing in Taiwan.

Tang led a team of researchers from Chang Gung University and Soochow University in Taiwan who questioned 247 terminal cancer patients on their knowledge of their condition and prognosis. They did this several times over the last six months of the patients’ lives, allowing them to track how the patients’ prognostic understanding progressed over time.

Based on the answers, they classified the patients’ awareness of their prognosis into one of four categories: unknown and not wanting to know; unknown but wanting to know; inaccurate awareness; and accurate awareness. Using a mathematical model, they also calculated how likely patients were to move between these categories.

At the start of the study, almost 60% of patients already had an accurate awareness of their prognosis, with 15% categorized as having inaccurate awareness, 17% as unknown but wanting to know and 8% as unknown and not wanting to know. Over the course of the study, patients’ awareness of their prognosis generally didn’t change, but what change there was tended to proceed in the direction of more understanding.

More troublingly, patients categorized as unknown and not wanting to know were least likely to progress to other awareness categories. As a consequence, while 82% of patients had progressed to an accurate awareness of their prognosis just before death, this meant 18% still did not have a complete understanding, of which 3.6% were in complete denial. These patients were thus unable to make sufficient preparations for their death.

According to Tang, their findings suggest that healthcare professionals should discuss prognosis with terminal cancer patients as soon as possible, to give them the maximum amount of time to come to terms with it. “Since terminally ill cancer patients need time to develop an accurate awareness of their prognosis, clinicians should begin early in the disease trajectory to cultivate patients’ accurate prognostic awareness by specific interventions tailored to their readiness for prognostic information in each distinct state of prognostic awareness,” she says

The study only questioned cancer patients in Taiwan, where the custom is to disclose the prognosis to family members rather than the patient and then allow the family members to choose how much to reveal. Nevertheless, Tang is confident that these findings will have relevance to cancer patients in many other countries.

“Physicians around the world commonly wait to discuss prognosis with terminally ill patients until they or their family members bring up the issue or when curative treatments are no longer available. Therefore, it is applicable to healthcare professionals around the world to follow the US national guidelines that physicians discuss prognostic information closer to patients’ diagnosis of advanced cancer, when they are cognitively competent to make informed and value-consistent decisions regarding their EOL care.”

Still, Tang says that similar studies should be conducted in other countries with different approaches to relaying prognosis information. She and her team are also planning to extend this research by evaluating the timing, depth and quality of actual patient-physician communication of prognostic information on EOL care.

“The study conducted by Tang et al provides quantitative evidence of variations in willingness to receive prognostic information,” commented Eduardo Bruera at MD Anderson Cancer Center in Houston, US, who is a section editor of The Oncologist and was not involved in the research. “This study highlights the complexity and the need to personalize communication with patients and families with cancer. More research is badly needed in this area.”


Courtesy of Wiley

About The Oncologist
Now celebrating its 22nd edition, this internationally peer-reviewed journal focuses on clear and concise interpretation addressing the multimodality diagnosis, treatment and quality of life of the cancer patient. Each issue is meant to impact the practice of oncology and to facilitate significant communication in the introduction of new medical treatments and technologies. The Oncologist is the official journal of the Society for Translational Oncology (STO).

About AlphaMed Press
Established in 1983, AlphaMed Press, which has offices in Durham, NC, San Francisco, CA, and Belfast, Northern Ireland, is the publisher of three internationally renowned peer-reviewed journals. The Oncologist® (www.TheOncologist.com), which is entering its 20th year, is devoted to community and hospital-based oncologists and physicians entrusted with cancer patient care. STEM CELLS® (www.StemCells.com), celebrating its 35th year, is the world’s first journal devoted to this fast paced field of research. STEM CELLS Translational Medicine® (www.StemCellsTM.com), currently in its sixth year, is dedicated to significantly advancing the clinical utilization of stem cell molecular and cellular biology.

About Wiley
Wiley, a global company, helps people and organizations develop the skills and knowledge they need to succeed. Our online scientific, technical, medical and scholarly journals, combined with our digital learning, assessment and certification solutions, help universities, learned societies, businesses, governments and individuals increase the academic and professional impact of their work. For more than 200 years, we have delivered consistent performance to our stakeholders. The company’s website can be accessed at www.wiley.com.

Full citation: “Transitions in Prognostic Awareness Among Terminally Ill Cancer Patients in Their Last 6 Months of Life Examined by multi-state Markov Modeling.” Chen Hsiu Chen, Fur-Hsing Wen, Ming-Mo Hou, Chia-Hsun Hsieh, Wen-Chi Chou, Jen-Shi Chou, Wen-Cheng Chang and Siew Tzuh Tang. The Oncologist. Published Online: July 06, 2017, DOI: 10.1634/theoncologist.2017-0068.
Younger generations step up to Alzheimer’s care

Younger generations step up to Alzheimer’s care

The number of people with Alzheimer’s disease in the U.S. is expected to nearly triple over the next 30 years according to the Alzheimer’s Association. As the need for caregivers grows, younger family members are finding themselves in a role for which they often are ill-prepared to handle. So experts at UCLA Health developed the Alzheimer’s Caregiver Boot camp to prepare them for the challenges of the progressive disease.

“Alzheimer’s caregiving is a full-time job because there are always risks present at any time of the day or night. They have to be vigilant to prevent things like wandering or falling, while helping with everyday tasks like dressing a patient and preparing meals,” said Dr. Zaldy Tan, Medical Director of the UCLA Alzheimer’s and Dementia Care Program. “This responsibility can be emotionally and physically taxing, so the goal of the boot camp is to give them the best tools to manage their role.”

Dr. Tan says participants in the boot camp are becoming more diverse as more families share the burden of caregiving. One in four caregivers is now under the age of 34, and the number of male caregivers rose six percent in just six years. The boot camp can help ensure that everyone who contributes is confident in their ability to keep their loved one safe and comfortable. “We are all potential caregivers,” said Tan. “Therefore, we should all be prepared to step into that role if and when we’re called upon to do so.”

To reinforce what they’ve learned, boot camp participants finish their day working with professional actors who are trained to react as someone with advanced Alzheimer’s disease. They role-play common scenarios and use different techniques to deal with difficult situations, such as a patient becoming confused or agitated.

“A lot of caregivers are unsure about the skills that they have acquired throughout the day. But once they are able to act out these scenarios, they find that they have not only learned these techniques, but they’re actually able to apply them,” said Tan. “Interacting with an actor who behaves as a dementia patient allows them put their skills into practice before they are faced with having to use them at home.”


Featured image: Bucky Schmidt (left) and Cyndi Ramirez (right) share the task of caring for their wife and mother, who suffers with dementia. Both are more confident in their ability to care for her after attending UCLA Health’s Alzheimer’s Caregiver Boot Camp.

Text and images courtesy of UCLA Health.

Millions Of Kids Fall Outside Senate Plan To Shield Disabled From Medicaid Cuts

Millions Of Kids Fall Outside Senate Plan To Shield Disabled From Medicaid Cuts

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)

Minority communities will be hit hardest by soaring rates of Alzheimer’s disease

Minority communities will be hit hardest by soaring rates of Alzheimer’s disease

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…)

Saving the Caregiver System

Saving the Caregiver System

More families are relying on caregivers to care for a sick relative or friend. This could be a professional certified caregiver or simply another family member taking on the responsibility. However, the caregiver system needs an overhaul to support the growing number of seniors and those with dementia in the coming years.

With a system teetering on the brink of extinction within an industry expecting explosive growth, what can businesses and the public do to recruit and retain certified caregivers?

The Dangers Facing the Caregiver System

Qualified nursing homes, assisted living facilities and other caregiving businesses are competing with one another to find and keep new caregivers. Due to low pay and inconsistent hours, caregiving is facing a high turnover. With a profession that relies on long-term care, many certified caregivers move from one facility to the next for better quality conditions or pay.

It’s estimated that one in five people in the United States will be age 65 or over by the year 2030. This brings the issue of the caregiving crisis into focus as family members take on the unpaid responsibility of caring for sick relatives as well as caring for their own children. Aging parents unable to care for themselves may rely on their adult children for care, especially daughters.

JAMA Neurology points out that more women tend to assume the caregiver role compared to men. This can leave the female head of household having to cut back from a full time position to part time while caregiving.

If the family member suffers from dementia, which as many as 8.5 million of Americans will by 2030, the stress of giving round-the-clock care may be too much without an additional caregiver.

Many state Medicaid programs continue to offer the same flat rate to caregivers that has not changed for years, leaving caregivers looking for better-paying jobs. In some states, the unions that support caregivers are demanding dues from the Medicaid reimbursement, leaving even less in the caregiver’s pocket.

How Caregiver Employers Can Help

Although most caregiving facilities have their hands tied when it comes to raises, employers should consider offering their certified caregiving employees bonuses and/or more paid days off. Some nursing home owners provide their caregiving staff with special lunches or promise not to cut their hours due to the census.

Nursing home owners and caregiving business managers should stress the importance of long-term care with prospective caregivers. Dementia patients require the same caregiver every day as seeing a familiar face will make them feel safe and secure in their environment.

How the Community Can Help

High schools can also get involved in saving the caregiver system by promoting certified caregiving as a profession. Caregiving as a trade now involves training courses consisting of more than 100 hours of training as well as a standardized test in some states. In Arizona, students seeking certification need to train for 104 hours before testing.

The State of Washington requires 75 hours of training before a caregiver can work for a licensed agency, and those seeking the Certified Nursing Assistant (CNA) will need 85 hours. New Jersey requires 76 hours of training, and Nebraska wants 16 out of the mandatory 75 training hours supervised.

Employers of individuals faced with caring for a sick family member or friend should consider offering paid leave to the caregiver. Although it is only a temporary solution, given enough time away, the caregiver may be able to make long-term care plans. One company, Deloitte LLP, has taken this approach, offering employees 16 weeks of paid leave to care for a loved one.

In states with stagnant Medicaid reimbursement rates for caregivers, the public can speak with their Representatives about the possibility of increases.

In Illinois, a bill raising the pay wage from $12 an hour to $15 an hour for caregivers made its rounds through the Senate and the House. If more individuals bring this concern to their state’s legislation, caregivers may receive the much-needed increased pay rate and caregiving agencies may retain their best employees.

Image by Pixabay

In Remote Idaho, A Tiny Facility Lights The Way For Stressed Rural Hospitals

In Remote Idaho, A Tiny Facility Lights The Way For Stressed Rural Hospitals

By Anna Gorman

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.

Prognosis Unclear

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.”


KHN’s coverage in California is funded in part by Blue Shield of California Foundation.

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation.

Former Pharma Reps’ New Mission: To School Docs On High Drug Costs

Former Pharma Reps’ New Mission: To School Docs On High Drug Costs

By Jay Hancock

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.

Costs for prescription drugs have been rising faster than those for any other health segment, marked by high-profile cases such as the reported 400 percent increase for Mylan’s EpiPen and 5,000 percent spike for Turing Pharmaceuticals’ Daraprim.

Health plans and others paying those costs are fighting back. Many have tried to give doctors academic research on pill effectiveness or simply removed high-cost drugs from coverage lists.

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.”

KHN’s coverage of prescription drug development, costs and pricing is supported in part by the Laura and John Arnold Foundation.

Boomerang Seniors: Aging Adults Move To Be Near Mom Or Dad

Boomerang Seniors: Aging Adults Move To Be Near Mom Or Dad

By Sharon Jayson

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.


KHN’s coverage of end-of-life and serious illness issues is supported by The Gordon and Betty Moore Foundation and its coverage of aging and long-term care issues is supported by The SCAN Foundation.

‘Everybody knows somebody’: This state is a laboratory for the future of Alzheimer’s in America

‘Everybody knows somebody’: This state is a laboratory for the future of Alzheimer’s in America

North Dakota’s sparse geography has long made it a natural frontier: Pioneers here pushed the boundaries of westward expansion, then agriculture, and recently domestic oil drilling. Now the state finds itself on the leading edge of a new boom that it never would have chosen: Alzheimer’s disease. Cases are climbing across the United States, and especially… (more…)