‘Every day is an improvisation’ when caring for aging relatives

How many of us have seen problems with older relatives that we’ve looked away from, not wanting to acknowledge their seriousness or fully face the consequences?

There’s a word for this: denial. And there’s a good example of how it can affect family decision making in the current issue of the Journal of the American Medical Association. [Note: AHCJ members have free access to JAMA.]

It’s a personal story written by Carolyn Cannuscio, a social epidemiologist who studies aging, about her beloved 96-year-old grandmother, Nana.

After a nasty fall, Cannuscio and her mother move Nana from Florida to a Pennsylvania assisted-living facility that they had visited often and checked out with some degree of thoughtfulness.

“We grilled the staff about their services, the environment, and the nature, costs and limits of care my grandmother would receive there,” Cannuscio writes.  “We were assured by the credible marketing director on multiple occasions that this would be the last move Nana would ever have to make.”

What a reassuring promise.  If only it were true.

Cannuscio and her mom soon find that the facility is unprepared for Nana’s arrival, with “no clear plan for her daily care, no bedroom door, and – most importantly – no grab bars in the bathroom.”  What?  They didn’t make sure these plans were in place before Nana stepped on the airplane that took her away from Florida?

It gets worse – right from the start.

We quickly learned that the facility was so understaffed that Nana would be neglected on the standard care plan.  We saw residents stranded in wheelchairs in random spots in the hallway, hoping for a generous guest or a more able-bodied resident to guide them to dinner.  We then accompanied Nana to dinner ourselves and saw residents waiting unattended and unfed for long stretches, until they were addressed rudely by the harried wait staff.

Where were these alarming signs when Cannuscio and family members visited the facility in advance of her grandmother’s move?

As it turns out, they were hiding in plain sight.  Searching the Internet, Cannuscio had come across a report from the state health department that apparently showed problems with the facility’s sanitary practices.  And during a visit, she’d been taken to an apartment reeking of “cat excrement” that was home to a “disoriented, disheveled man who clearly needed more help than he was getting.”

Yet, hope prevailed:  hope that this squalid apartment was an aberration, that Nana would get the care she needed, that this difficult move would prove satisfactory in the end.

Hope such as this is entirely understandable.  But in this case, it led to denial:  a refusal to give adequate consideration to evidence that this assisted-living facility wasn’t what it was claiming to be.  After Cannuscio acknowledged that, she was distressed to discover that no federal standards govern assisted-living facilities.

In the end, however, she lays blame on “my fantasy that all of our elder care problems would be solved” with the move to assisted living.

Indeed. As older people become frail, like Nana, problems abound and there is no foolproof solution.  Not if the older person is cared for at home, not if they’re in assisted living, not if they’ve moved to a nursing home.   Daily challenges exist in all these settings and, as Cannuscio notes at the beginning of her piece, “every day is an improvisation.”

It’s our job as journalists to bring these challenges into the public realm, where they can be seen clearly and understood in context.  Our hope is that the material going up now and in the months ahead on AHCJ’s aging web resource – information about assisted living facilities and nursing homes, on long-term care and caregiving, on aging-in-place and home care – will help as you pursue these kinds of stories in your communities and make it harder to deny the very real problems that so many seniors face.

Lopez columns on ailing dad spark discussions about end-of-life decisions

From his friendship with a cellist to his adventures with medical marijuana, Los Angeles Times columnist Steve Lopez often draws on highly personal material in his work. His latest series, surrounding the end of his father’s life, mines that vein even more deeply.  Lopez has initiated a community-wide conversation about death and dying through his columns, his profiles of several people confronting life’s end, and reader contributions, which have snowballed since the series began this summer.

Dec. 28: Open the discussion on dying
What I’ve learned along the way is that we have to get past the fears and cultural taboos that prevent us from discussing death with loved ones. We need to make our wishes known in advance healthcare directives, sparing friends and family the psychological trauma of impossibly difficult decisions. We need more information on end-of-life choices and broad reforms of Medicare, which gladly pays for the tools of slow suffering in terminal patients — feeding tubes, hip replacements, etc.— but is stingier about paying for palliative care despite lower costs and higher patient satisfaction.

Dec. 18: Wishing for the right to make that final exit
Since I began writing about these issues in July, when my father took ill, I’ve had readers argue that how and when we die is not for us to decide, but is in the hands of a higher authority. I respect that view, but I’ve heard from far more readers who make a humane argument for options to avoid lingering and painful deaths. Many say that once they reach the point where they are simply being kept alive - as opposed to living - they want to have the choice of ending their suffering.

Dec. 14: Having to think about the unthinkable
Most people don’t like to plan for dying, but in our state of denial, we leave ourselves vulnerable to conditions we would never want. Arrangements for the end of life are essential.

Dec. 11: A terrible choice to ponder
Medical advances now keep people like my father alive in severely debilitated states, at ever-soaring costs to the public. Is that a humane, compassionate approach?

One doctor told me that our fragmented healthcare system has a built-in incentive to give my dad a feeding tube. The surgeon and hospital would get paid, the nursing home would benefit because Medicare would cover 100 more days and my family would be spared that cost. The only losers would be taxpayers, and maybe even my father, who has already been cut open, probed and filled with buckets of medication, only to become sicker, angrier and more depressed.

Dec. 4: Not ready to die, but prepared
The cancer that started 11 years ago has now ravaged the body of Freddie Ramos. It attacked a kidney first, then a lung, and the 57-year-old family man knows that death waits in the near distance.

He’s not ready to go, he says, but he’s prepared.

Nov. 27: Geriatric doctor doesn’t shy from tough talk
Gene Dorio, an old-school practitioner in Santa Clarita, insists families - and physicians - have honest discussions about end-of-life issues with those in failing health. Too often the difficult conversations are put off for too long.

Nov. 11: When death is certain, but dignity is not
For a senior, those two dreaded words - “broken hip” - are often the beginning of the end. Doctors said that without surgery, my father would probably die within three months. But surgery itself could kill him, given his weak heart.

Because of the morphine and dementia, it wasn’t clear that my father understood his options.

Aug. 13: Waiting calmly to die
The email from a reader in Westwood was short, to the point and disturbing.

“My life has been very full,” wrote Polly Berger. “But now it is getting very bad, and I want to go to that other world.”

Berger also said she wished there were more Dr. Jack Kevorkians around. I responded immediately, worried it was a cry for help.

July 17: Waiting in the dark with Dad
And so it goes, the slow, inexorable march to the place we all must visit. Watching, I find myself wondering why we’re so ill-equipped to accommodate, accept and talk about the fate we all are guaranteed.

We’re not very good at dying, or even aging. We dye our hair unnatural colors, pin back our faces and pretend nobody knows. We’ve got an obsession with youth and a phobia about death.

Ongoing: Matters of life & death
As part of the series, the Times invited readers to share their own experiences. Many have.

Lopez, author of The Soloist, was the keynote speaker at AHCJ’s 2008 Urban Health Journalism Workshop.

Aging in place becoming more popular, possible

In the latest installment in The Associated Press series on growing old in America, David Crary explores how the health care system is evolving to accommodate “aging in place” and seniors’ preference to remain in their private homes, even at points when their health care situation might seem to suggest relocation is in order. As the population ages, this preference is starting to play a role in policy decisions.

There’s no question that aging in place has broad appeal. According to an Associated Press-LifeGoesStrong.com poll conducted in October, 52 percent of baby boomers said they were unlikely to move someplace new in retirement. In a 2005 survey by AARP, 89 percent of people age 50 and older said they would prefer to remain in their home indefinitely as they age.

Communities have explored a number of programs to better serve this population, and Crary profiled some of the more notable efforts, including:

• The Naturally Occurring Retirement Community (NORC)
  

  … can be either a specific housing complex or a larger neighborhood in which many of the residents have aged in place over a long period of time and need a range of support services in order to continue living in their homes.

• “Village” organizations
  

  Members of these nonprofit entities can access specialized programs and services, such as transportation to stores, home health care, or help with household chores, as well as a network of social activities with other members.

  About 65 village organizations have formed in the U.S. in recent years, offering varying services and charging membership fees that generally range between $500 and $700 a year.

• Aging-friendly homes
  

  AARP has teamed up with the National Association of Home Builders to create a designation for certified aging in place specialists trained in designing and modifying residences for the elderly. Several thousand builders, contractors, remodelers and architects have been certified. Building or remodeling homes can include such details as touchless faucets, trim kitchen drawers instead of cupboards, grab bars and nonslip floors in the bathrooms.

  Arizona’s Pima County, along with a few other local governments, has gone a step further, passing an ordinance requiring that all new homes in the unincorporated areas around Tucson offer a basic level of accessibility. They must have at least one entrance with no steps. Minimum heights and widths are set so that light switches can be easily reached and doorways are passable in a wheelchair.

• Medicaid changes
  

  In several states, there’s debate about whether to promote aging in place by shifting more Medicaid dollars to community-based programs and away from traditional nursing facilities. But budget problems may complicate such efforts as some financially struggling states cut back on home health services that help keep some elderly people out of nursing homes.

Investigation finds chart falsification endemic in Calif. nursing homes

In a two-part series (one | two) in The Sacramento Bee, Marjie Lundstrom reveals the results into the widespread falsification of patient records in California nursing homes.

While regulators have dogged facilities for years over fraudulent Medicare documentation, the issue of bogus records is more than a money matter. In California and elsewhere, nursing homes have been caught altering entries and outright lying on residents’ medical charts – sometimes with disastrous human consequences, according to a Bee investigation.

Medications and treatments are documented as being given when they are not. Inaccurate entries have masked serious conditions in some patients, who ultimately died after not receiving proper care, The Bee found.

Lundstrom writes that while chart falsification is a misdemeanor, nursing home workers are rarely prosecuted, because it’s difficult to prove and time consuming to track down. Instead, she found, sources say its become a pervasive part of the culture in such workplaces. Based on a review of 150 incidents that occurred over the course of two decades, Lundstrom spells out the most common reasons for such mistakes – reasons that will be immediately familiar to anyone with experience in a checklist-driven workplace.

• Covering up bad outcomes. A patient dies or is injured, and the nursing home staff or administrators rewrite the records to minimize blame or liability.
• Fill-in-the-blank charting. Overworked or lazy staff members take massive shortcuts, filling out charts en masse, not knowing whether treatments took place or if the information is accurate.
• Missing medicines. Medications are checked off as being given, but investigators later find unopened boxes or discrepancies with pharmacy records.

She explores each of these bullet points and ideas in subsequent headings and, in the process, lays out a blueprint for other reporters interested in looking for similar issues in their neck of the woods. The first story includes a number of heavy-hitting anecdotes, but Lundstrom doesn’t fully dig into one of the most affecting cases until the second installment of the series.

In two key paragraphs, Lundstrom lays out all you need to know about the significance of the story, one that began with the falsification of medical records. The whole story is well worth a read, and you’ll emerge with a deeper understanding of what makes records falsifications such a unique and tricky subset of nursing home infractions.

Johnnie Esco’s death on March 7, 2008, led to a contentious civil lawsuit, investigations by California’s Department of Justice and Department of Public Health – and the exhumation of her body from Arlington National Cemetery.

Last week, amid inquiries from The Bee, the state Department of Justice reopened its criminal investigation into Johnnie Esco’s treatment at the facility.

In a response published in The Bee, an industry representative took issue with significance of Lundstrom’s findings, accusing her of sounding the alarm “on behalf of trial lawyers” and not putting the problem in perspective.

…in a single day in California there are 30 million entries made on medical charts. The Bee examined 20 years of charting history from 1990 to 2010 – or 219 trillion entries – and found that during that period, regulators issued 209 citations for willful material falsification.

Fla. system forces ventilator patients to stay in hospitals, incur multimillion-dollar bills

Richard Martin of the St. Petersburg Times reports that, because Florida has few nursing homes that can care for patients on ventilators, some patients are forced to stay in hospitals and rack up enormous bills.

The patients in question have been stabilized to the point where they no longer need hospital care, though they rely on ventilators, but the hospitals can’t discharge them without finding a facility that can take patients on a ventilator.

Martin reports that fewer than two dozen nursing homes, of about 700 in Florida, care for ventilator patients. Other states pay nursing homes more to care for ventilator patients.

So, in a state where uninsured people go without even basic care, millions of dollars go to ventilator care for people who don’t need to be in hospitals — and who might not even want to be there.

Martin says no one knows how many patients need long-term ventilator care, but one hospital administrator estimates his hospital has three or four patients who fall in this category. According to the Florida Hospital Association, there are about 300 hospitals in the state. The article cites cases in which ventilator patients racked up bills of $9.2 million and $1.7 million.

Hospitals often have no way to collect such bills, and have to write them off as charity care, Martin reports.

Minority population swells in nursing homes

In The Providence Journal, reporter and AHCJ board member Felice Freyer reports on the local effects of the national trend toward higher proportions of minority residents in nursing homes. In addition to the logistical concerns raised by this demographic shift, Freyer also explores what it says about health disparities and access to care in minority communities.

Freyer’s report is built on a Brown University study published in the July edition of Health Affairs. As you may know, free access to Health Affairs is one of the many benefits that come with your AHCJ membership.

… between 1999 and 2008, the number of Hispanics and Asians living in U.S. nursing homes grew by 54.9 percent and 54.1 percent, respectively, while the number of whites dropped 10.2 percent.

These numbers reflect the changing demographic profile of elderly people, whose ranks include growing numbers of blacks, Hispanics and Asians. But the researchers say their findings also raise questions about whether minority-group members have poorer access to assisted-living and community-based care. The question may be especially relevant as states such as Rhode Island strive to “rebalance” the long-term system to favor home-based care over institutional care.

Freyer’s story also includes data from Brown’s LTCfocus.org site, a handy tool for sorting and visualizing data related to long term care and nursing homes.

For Hawaii reporter, scarce nursing home inspections become the story

The Honolulu Star Advertiser’s Rob Perez reports that, thanks to cutbacks, Hawaii has failed to meet federal standards for “evaluating the severity” of nursing home complaints in four of the past five years. His two-part investigation (Part 1 | Part 2) is built in part on the back (or, in this case, “lack”) of documents that should be familiar to many AHCJ members: Nursing home inspection reports. For more on how to use these, and related documents, check out AHCJ’s slim guide, Covering the Health of Local Nursing Homes.

The Centers for Medicare and Medicaid Services, the federal agency that oversees most nursing homes nationally, imposed only one sanction against a Hawaii facility last year, the lowest number among the 50 states, according to CMS data. North Dakota also had just one sanction.

Over the past six years, the agency took enforcement actions against 4 percent of Hawaii institutions that were cited for a certain level of deficiencies, compared with a national average of 30 percent, the data show. Only North Dakota, at 3.5 percent, had a lower percentage. In 2006 and 2007, no Hawaii nursing homes were penalized.

In the first installment, “Hobbled oversight,” Perez shows how far behind the state has fallen when it comes to inspections. The story has already attracted nearly 150 comments. In the second piece, “Abuse goes unpunished at Hawaii’s care homes,” Perez takes a look at the real-world impact of these administrative failures.

Troubled Mont. nursing home illustrates special federal status

Reporters looking to implement the tricks they picked up at AHCJ 2011 or one of our workshops can look to Billings (Mont.) Gazette reporter Cindy Uken, whose story about a dangerously deficient local nursing home was carried by inspection reports and her understanding of federal programs and regulation.

The program in question, known as the Centers for Medicare and Medicaid Services Special Focus Facility Initiative, has singled out 49 of the nation’s 16,100 nursing homes based on what it calls “a history of serious quality issues.” In the case of the Montana nursing home, these problems included serious bed sore issues, possible abuse and a failure to get to the bottom of patient injuries of “unknown origin.” Homes in the federal initiative are treated to about two inspections a year – twice the regular rate.

The Centers for Medicare and Medicaid Services (CMS) selects facilities for the improvement program after receiving reports from state agencies. More nursing homes could be candidates for the improvement program, but a lack of funding restricts how many participate, said Mike Fierberg, public-affairs officer for the CMS Region 8 office in Denver.

After 18 to 24 months in the program, officials aim to have the problem facilities either improve their quality, lose Medicare and Medicaid funding or, if they’ve shown progress, to keep improving apace.

When CMS released the most recent list of homes in the SFFI, it released them in a PDF. AHCJ has converted and posted the list as Excel and HTML files to make searching the list easier for reporters. More information about nursing home quality is available from CMS and in AHCJ’s slim guide, “Covering the Health of Local Nursing Homes.”

House calls on the rise as their economic benefits become clear

In The Miami Herald, Ana Veciana-Suarez looks into why doctor house calls are on the rise, especially among the Medicare set. Through her reporting, it becomes apparent that it’s primarily a function of economics, all driven by the fact that, while a house call may appear expensive when compared to a typical primary care visit, in many cases the real alternative to a house call and some preventative medicine is an emergency room visit and/or an overnight hospitalization, both of which are in another cost bracket entirely.

Veciana-Suarez writes that while the latest home care boom may have started with the growth of concierge medicine, especially in South Florida, it’s now being driven by the big guns — Medicare and major insurers.

House calls, once thought to be too time-consuming and not very cost-effective, are making a comeback as healthcare providers recognize that they’re actually the answer to good care for patients who can’t make it to a doctor’s office. Medicare-paid house calls have been steadily increasing, according to government figures, and doctors report the same for non-Medicare patients, according to the American Academy for Home Care Physicians. What’s more, technology has made accessibility to patients’ records and other medical information available at any time and any place, a boon to physicians on the go.

Now a three-year federal government pilot program called Independence at Home is encouraging doctors to pick up those black medical bags of yore and pay a visit to their sickest patients. As part of the new healthcare reform law, the demonstration project will cover 10,000 Medicare patients described as medically fragile. It is set to begin in January in locations yet to be decided.

The main targets for both the government and private insurance programs are the so-called “frequent fliers,” and others with chronic conditions that need to be managed to prevent repeat visits to the emergency room. To that end, some programs also include social workers and home health educators. Most programs are still in the experimental phase, but Veciana-Suarez paints a clear picture of a sector that’s poised to assume a growing role in the coming decade.

Reporter checks records, hits facility with news
of looming closure

After picking up new tools and techniques at Health Journalism 2011, reporter Sarah Bruyn Jones returned to The Roanoke Times and lost no time in putting it to use. Her story, on the impending closure of a local assisted living facility, came as a direct result of checking nursing home inspections. It also, if home operators are to be believed, came as a surprise.

Edward Jones, president of Ashed Healthcare Systems, which owns Monticello, said he was unaware of the state’s intentions to close the facility.

“I had no clue of any of this until you mentioned this,” Jones said when contacted late Thursday about the impending closing.

Thanks to the inspection records, Jones’ story is loaded with details like “Moldy bathrooms, poor plumbing, water leaks, crumbling walls, broken lights and roaches,” and a solid chronology of events.

At one point an inspector found that residents had been without toilet paper for at least two days. In July the building’s water was turned off because the owners had failed to pay the bill.
…
Patients were being given prescription medication when there was no record of a diagnosis for those drugs. In some instances, drugs that were supposed to be given weren’t being dispensed. A diabetic wasn’t receiving insulin. Another patient was only getting half the prescribed dose of medicine.

Earlier this year two residents lost Medicaid coverage after the Monticello staff member assigned to file annual renewals for the residents failed to complete the work.

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