Dining decision brings discrimination issues in aging to forefront; lessons for reporters

Paula Span of The New York Times clearly struck a nerve with her recent story about an upscale retirement community’s decision to exclude certain residents from its country-club style dining room.

The residents in question lived in assisted living apartments or a nursing home that are part of the Norfolk, Va., continuing care retirement complex (CCRC).

For years, some had eaten in the main dining room, with its white-clothed tables, fancy food and nice views, without a fuss.

But last year, management at the complex decided that only people residing in independent living apartments could take their meals there.

Residents of assisted living would have to eat in their own dining room, as would nursing home residents, management declared.

Yes, it’s a form of segregation, based on older peoples’ relative health.

And yes, it speaks to a little-discussed hierarchy often found among the old, with those who are “well” – active, mobile, without significant impairments – on top and those who are sick or disabled on the bottom.

We might not like to acknowledge this aspect of aging, but it’s a reality in all kinds of settings, including nursing homes where more “with it” residents often look down on those with significant cognitive or physical problems.

More than 150 people wrote in to comment on Span’s article, which appeared in the paper and on the Times‘ New Old Age blog. Many said they had experiences of the same sort.

MJ of New York City wrote, “A similar issue came up in my mother’s CCRC. Some residents wanted people who used wheelchairs to be barred from sitting in the spacious front lobby because they thought it was ‘depressing’ to see fellow residents in wheelchairs.”

An East Coast reader using the pseudonym DemocracyNow noted:

“When my father was in assisted living, I saw this kind of discrimination practiced not by the facility, but by the residents themselves. Healthier patients would form cliques, like the cool kids in high school, and would sit at their own tables. Those who were perfectly healthy enough to engage in lively conversation, but were saddled with walkers or a wheelchair or an oxygen tank, would be banished to the outer reaches of the dining room, sometimes left to eat alone. It was a sad sight.”

Many readers called the practice of segregating CCRC residents at meals “appalling,” “disgusting,” “mean spirited” and noted that the practice appeared driven by fear.

Kate in Boston commented, “The residents in independent-living situations are looking at what can and very likely will happen to them over the next several years and it terrifies them.”

Curtis Selden Cone of Berkeley observed that the story spoke of “prejudice against the process of aging itself, which often involves physical frailty. The irony of the exclusion is that the individuals who are supporting this, may find themselves being excluded in the near future due to some disability.”

Others suggested that some kind of compromise was probably necessary.   When people are seriously disabled, unable to eat on their own, and require extra assistance, it’s probably appropriate for them to eat in a separate space, several said.  In this the case, dining rooms for more disabled residents should be similarly comfortable and inviting, they added.

Indeed, the CCRC that Span wrote about eventually let assisted living or nursing home residents eat in the main dining room if they passed a functional assessment.

This story holds important lessons for reporters writing about aging and health:

• Don’t assume that negative attitudes about being old and frail are held only by the young. Deeply ingrained cultural values favoring youth and vigor often remain with people through their own latter years.
• Don’t think of the elderly as being a monolithic population. They’re not. The kinds of divisions that characterize people throughout their lives – differences of wealth, health, education, temperament and more – remain as people age and shape their preferences and experiences.
• When you write about senior housing, be alert to the culture of senior housing facilities as well as health or safety concerns. Are these facilities inclusive? Or are healthier residents treated differently than more disabled residents? What do the people who live in these facilities say about their own situations?

Watch for a tip sheet with detailed information about senior housing on this site in the months to come.

Brutally honest accounts of caregiving yield insights

We’re all going to hear a lot more about the trials and tribulations of caregiving in the years ahead, as Baby Boomers struggle to care for increasingly frail, ill parents.

But I promise you none of the stories on this subject will be quite like Sandra Tsing Loh’s piece, “Daddy Issues,” in the March 2012 issue of The Atlantic.

It’s a rip-roaring, no-holds-barred look at the upside-down world of caregiving, where children become parents to their elderly moms or dads and emotions can run wild.

Loh is a writer and a performer who’s appeared regularly on NPR’s “Morning Edition” and Ira Glass’ “This American Life.”

She’s among the growing numbers of caregivers turning to blogs, websites, newspapers, magazines and books to tell the world “you won’t believe what I’ve been through – or what I’m going through – and how crazy it is.”

In Loh’s case, she lets it all hang out at the beginning of her piece, wailing to a radio station colleague “I WAAAAAAAANT MY FATHERRRRRR TO DIEEEEE!!!”

Yes, it’s shocking, an attention-grabbing stunt, but Loh follows through in spades after the first half of her article, which looks at recent books on caregiving by Jane Gross and Gail Sheehy.

Then, we get to Loh’s own story, told with a mordant sense of humor that feels manic at times.  It’s her contribution to a phenomenon that she dubs “Elderschandenfreude … the secret pleasure of hearing about aging parents that are even more impossible than yours.”

Here are the basics:   Loh’s father is a notoriously cheap, difficult man.  His second, younger, Chinese immigrant wife was supposed to take care of him in his dotage but she develops dementia.  He almost dies of dehydration but roars back full of life and unexpected needs.  As Loh puts it:

“Now I have a wheelchair-bound but extremely active 91-year-old who greatly enjoys getting bathed and diapered and fed ice cream and crashing UCLA science lectures and, oh, by the way – every day he calls me now;  he wants SEX.”

As resentment builds and caregiving bills for her father and his wife top $10,000 a month, Loh articulates what many caregivers might feel sometimes but never admit publicly:

“I rant to myself: He is taking everything! He is taking all the money. He’s taken years of my life (sitting in doctors’ offices, in pharmacies, in waiting rooms) … He’s taken the serenity I fought for – and won – in 1,000 hours of therapy centered on my family. In fact, he’s destroyed my belief in “family” as a thing that buoys one up. Quite the opposite: family is like the piano around Holly Hunter’s ankle, dragging me implacably down.“

Read the rest of this writer’s astonishingly frank story here.

For health care journalists, these kinds of personal narratives are a potential gold mine of insight about  the complexities of caregiving. They are also an important counter-point to the antiseptic  “10 steps to care for your loved one” advice that too often is  passed off as caregiving wisdom.

You can find similar stories, which can yield potential ideas, material and sources for your own work, all over the Internet, with just a bit of searching.

Look for a tip sheet on caregiving here, AHCJ’s aging site, in the months to come.

Poet’s piece on bias against elderly people serves as reminder to reporters

Anyone writing about older people with any seriousness will eventually confront the phenomenon known as “ageism.”

The great gerontologist Dr. Robert Butler, the first director of the National Institute on Aging, coined this term in 1968 to refer to prejudice against older people fueled by stereotypes about aging that often lead to discriminatory practices.

It’s a phenomenon that pervades medicine, as it does institutions across our society.

Think of a doctor who speaks to a middle-aged daughter who’s accompanied her elderly mother to a medical appointment, not to the older woman herself. It happens all the time.

Think of a hospital nurse who ignores an 80-something man’s increasing agitation and disorientation because of the assumption that it’s natural for older people to be irritable and confused. Talk to families and you’ll hear such stories.

Think of all the people 65 and above – the numbers are untold – who have been told over the years that their medical problems are to be expected because, after all, they’re old and there’s not much to be done about that.

I’ve found myself thinking about all this because of a four-page article by the great American poet Donald Hall in the Jan. 23 issue of The New Yorker.

It’s a lyrical piece about reaching the age of 83, coming to know the rhythms of this stage of life, and feeling connected with others who have traveled the journey of age before him.

Intermingled with Hall’s memories of his mother in her final years are his unsparing observations about himself:

“Each season, my balance gets worse, and sometimes I fall. I no longer cook for myself but microwave widower food, mostly Stouffer’s. My fingers are clumsy and slow with buttons. … For years, I drove slowly and cautiously, but when I was eighty I had two accidents. I stopped driving before I kill somebody … New poems no longer come to me, with their prodigies of metaphor and assonance. Prose endures. I feel the circles grow smaller, and old age is a ceremony of losses.”

Becoming advanced in years, Hall writes, involves a process of becoming an “alien” – another type of life form, different from everybody else. He doesn’t use the word “ageism” but describes its effect.

“When we turn eighty, we understand that we are extraterrestrial. If we forget for a moment that we are old, we are reminded when we try to stand up, or when we encounter someone young, who appears to observe green skin, extra heads, and protuberances.

“People’s response to our separateness can be callous, can be good-hearted, and is always condescending.”

Describing his reaction to a woman who has written to the local newspaper calling Hall a “nice old gentleman,” Hall says, “Old is true enough, and she lets us know that I am not a grumpy old fart, but ‘nice’ and ‘gentleman’ put me in a box where she can rub my head and hear me purr. Or maybe she would prefer me to wag my tail, lick her hand, and make ingratiating dog noises.”

Yes, there is a note of bitterness, as in several other incidents of being unconsciously ignored or put down that Hall relates. It’s the sharpness of his voice here – a contrast to the poetic sensibility that pervades the rest of his piece – that reached out and grabbed me and made me realize, yes, this slicing, grating, isolating sense of otherness is what ageism feels like.

As reporters, be aware of this potential for treading on feelings when you speak to older people. Don’t patronize, don’t be condescending. Try to understand their experiences from their point of view, not your own. Learn about what their lives are like by listening with respect and attentiveness. And watch out for ageism in the institutions and professionals you cover and in the words that you write.

Investigation delves into Wash.’s prescription drug problem

Everything time we think prescription drug abuse stories have peaked, something comes along to push the story further. This time, InvestigateWest’s Carol Smith sets herself apart by starting from square one and clearly explaining the origins and dimensions of Washington’s particularly nasty drug issues, tracing back each facet of the problem to its source and spotlighting what makes the Evergreen State unique.

Washington has been one of the hardest hit states in the country, in part because of aggressive prescribing practices. That, coupled with lack of oversight of doctors who over-prescribe, has led to the spectacular run-up in the number of deaths from prescription overdoses.

The backdrop for her work is an epidemic that shows no signs of abating, despite a recently implemented state law Smith calls “a bold attempt to reduce overdose deaths by launching the first-ever dosing limits for doctors and others who prescribe these medicines.”

Prescription drug abuse is at epidemic levels throughout the state, and elsewhere in the country, despite lawmakers’ attempts to get a grip on it. Washington now has one of the highest death rates in the nation. Deaths from prescription drug overdoses in this state have skyrocketed nearly twenty-fold since the mid-1990s, and now outstrip those from traffic accidents.

Why caused it to leap so quickly? Smith tracks down several key tipping points. “There’s plenty of blame to go around for what caused the epidemic,” she writes. “Aggressive marketing of opiates by drug companies, nonexistent tracking of overprescribing, lack of insurance coverage for alternative treatments for pain, and demand by patients for quick fixes, to name a few.”

She drills down into many of those causes, with my personal favorites being two key origin stories:

• How marketing by OxyContin maker Purdue Pharma led to relaxed guidelines for chronic pain treatment and a “1999 law specified ‘No disciplinary action will be taken against a practitioner based solely on the quantity and/or frequency of opiates prescribed,’” both of which helped cause a jump in prescriptions.
• How “the rise in the death rates of Medicaid patients tracks along with the state’s cost-saving decision to move many of its poorest residents to the cheapest, most potent pain reliever available: Methadone.”

See the upper right-hand sidebar for more stories from the six-month investigation.

On balance: Lazar explains a little-discussed fundamental fact of aging

It’s not easy to write well about the nitty-gritty details of aging – the wear and tear on bones and joints, the deterioration of seeing and hearing, the gradual onset of frailty in barely observable increments.

But everyone encounters this when they’ve lived long enough; physical decline is a fundamental part of the aging experience.

That’s why Kay Lazar of The Boston Globe deserves kudos for her story on balance problems in older adults, a common, seemingly mundane condition that hasn’t received much attention.

The consequences can be serious: when balance is compromised, seniors become at risk of losing their mobility or falling, potentially precipitating a cascade of other medical problems.

Lazar’s explanation of why older people become unsteady on their feet is graceful and easy to understand:

“A person’s sense of balance relies on an exquisite interplay of three regions, your vision, a maze-like structure in the inner ear which includes microscopic cells that resemble little hairs, and the muscles and joints running from your feet, up through your spine, that sense your body’s position.

All three areas send signals to your brain, which processes the information, and helps give you a sense of spatial orientation - your balance.

As we age, eyesight fades, as do our muscles’ ability to sense surroundings. Meanwhile, the hair cells in the inner ear die off and do not regenerate. These declines combine to throw off the signals to your brain about your balance.”

Her description of “four flavors of dizzy” - the feeling of blacking out, unsteadiness, spinning, or lightheadness - almost surely will help older adults and their families recognize symptoms that may require medical assistance.

That’s why a story like this is valuable. By talking openly about a problem that usually passes under the radar screen, it expands our sense of alertness to older people and difficulties they may experience. It makes seniors visible, not invisible as they so often seem to others.

Next time I see an older person hesitate at a curb before stepping down or stand stiffly in a crowd, nervous about moving in tight, confined spaces, I’ll think about Lazar’s article.

‘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.

Growth of for-profit hospices ripe for coverage

Given the recent spate – some good, some pretty muddy, and one I think pretty eye-opening – of articles about the growth of for-profit hospices, it’s probably worth taking a look at the issue, particularly for those of you who live in communities (such as the south and west) where the for-profits are most dominant. I think it’s also important to note some of the context that some of these articles omitted. And, yes, there’s a health reform angle. Several, in fact.

MedPAC started looking into the for-profits several years ago, as the sector started growing very rapidly. It became clear that the Medicare hospice “caps” and penalties meant to discourage too many long stays weren’t working.  MedPAC  has made a number of payment recommendations, including one that would revamp how all hospices are paid (which would make long stays less profitable) and another focusing more narrowly on creating a separate payment scale for hospice care in nursing homes.

MedPAC advises Congress but doesn’t set policy. And Congress has not acted on the recommendations to date – except that it did include in the 2010 health reform law a requirement that HHS review (and gives it a pathway to revamp) the hospice payment system in 2013. In addition, hospice faces about $7 billion of Medicare payment reductions over a decade under the Affordable Care Act. On top of that is the 2 percent Medicare provider cuts that will be “triggered” next year now that the supercommittee failed to agree on an alternative deficit-reduction steps.

All that being said, the recent Bloomberg piece by Peter Waldman on sales and marketing tactics by the for-profit chains was a hefty piece of reporting. It documents things like “Summer Sizzle” promotions, “Christmas Cash Blitz” and “Fall Frenzy” admission drives. The focus was pretty squarely on the business and sales practices. That is an important issue (and I haven’t seen it as well reported elsewhere ). But for those of you who may want to write about hospice, it’s not the only issue.

If you write about the growth of for-profit hospices – and some communities are now dominated by them – a few things to keep in mind.

• Don’t conflate quality and quantity. A flawed government payment system, and overly aggressive/inappropriate sales tactics (or even outright fraud) by some players isn’t always the same thing as a quality-of-care problem. A nursing home resident who ends up getting hospice care longer than he or she really should isn’t necessarily getting bad care – although they may well be getting care that Medicare shouldn’t be paying for.
• There’s a difference between large publicly-traded, investor-owned hospice chains and smaller, local for-profit hospices, which can be quite mission-driven (and low margin.) A hospice’s tax status doesn’t automatically define whether it provides good or bad patient care. (Remember the ongoing debate about which nonprofit hospitals are really “non” profit).
• Prognosis is really, really hard – particularly for the frail elderly nursing home population. It is hard to know whether a dementia patient is going to die within six months - even when there are some tell-tale danger signs of decline and deterioration. CMS did add some recertification and quality rules two or three years ago that are supposed refine the eligibility criteria - but they still aren’t a crystal ball.
• Long hospice stays may be a poor use of taxpayer/Medicare money but potentially so are very short stays. If people are only in hospice a couple of days, that often means that they got very aggressive care - which usually means very costly care  until close to the end. That’s one thing if such care was what the patient/family chose. It’s another if the doctors never explained to the patient/family the likely prognosis, the likely outcome, the relative burdens and benefits of such care (and by “burdens” I don’t mean purely financial burdens). If Medicare paid for all that and then there is a mad dash for hospice to try to get pain and symptoms (physical and emotional) under control in the last few days, it’s neither good for Medicare’s bottom line nor does it give hospice the optimal circumstances for providing really good end-of-life care. Those last few days of life can be intensive for the hospice and a hospice with only very short-stay patients would be hard pressed to survive financially.
• How would small community and rural hospitals survive under some of the new payment models being discussed? Would they close? Get swallowed up by big chains? Both - i.e., first get swallowed up and then be closed because they aren’t as profitable?
• There have been several studies suggesting that patients who receive hospice care may live longer than similar terminally ill patients who do not. There was a whole spate of articles on this phenomenon back when Art Buchwald was dying – or rather when he was not dying. Most of the research I’m familiar with was on hospice care for specific cancers and heart diseases, not necessarily dementia, and not necessarily in the context of for profit hospice care for nursing home patients. But seriously ill people who get expert, interdisciplinary end-of-life care may bounce back, temporarily, and no longer fall in that six-month life expectancy category. If they really rebound, they should leave hospice care, as Buchwald did, with the right to resume it when the time comes.
• When asking whether there’s “too much” hospice care in nursing homes - don’t forget to ask what happens when there is not enough. This is the one area where I thought the Bloomberg story was incomplete – or even slightly misleading – by quoting a physician in Kansas as saying there should “never” be hospice in nursing homes. There is a lot of data – in peer-reviewed journals and medical conferences produced by academics and palliative care experts and nonprofits, not by the “industry” – that pain is poorly controlled in nursing homes, that there is overtreatment (feeding tubes being a prime example) of late-stage dementia patients in nursing homes, and that nursing home patients who could benefit from hospice/palliative care are instead sent repeatedly – often via costly ambulance-to the hospital. I met one doctor who called this care model “Our Lady of Perpetual Hospitalization.” This is a piece of the readmission issue that the health care reform law aims to address. There’s no room here to go into the convoluted mismatched incentives regarding nursing home care, but suffice it to say the revolving door won’t stop without quality end-of-life care in nursing homes – and nursing homes are often surprisingly ill-equipped to provide quality end of life care. Accountable Care Organizations, advanced medical homes, home and community based alternatives to institutional care, all part of health reform, may play a role here in coming years but it’s not going to be an overnight change.
• Hospice was not designed to be a substitute for, or side door to, Medicare-financed long-term care and it’s not the right way to pay for long-term care. Unfortunately, we don’t have a good way of paying for long-term care, nor for helping family caregivers.
• I’ve heard some rumblings – and it’s not a story I’m in a position to chase right now but may be worth looking into locally – that some groups or individuals are starting small nonprofits, specifically to flip them fast in sales to the big chains and make a lot of money. The Bloomberg piece reported on the recent uptick in acquisition of nonprofits.
Joanne Kenen (@JoanneKenen) is AHCJ’s health reform topic leader. If you have questions or suggestions for future resources, please send them to joanne@healthjournalism.org.

Finally, for now at least, remember that most hospice care takes place at home, with family members as caregivers. But not all terminally ill people have family members alive, or living nearby, or hale and hearty enough themselves to provide that care at home. For them, at least for some of them, the nursing home IS “home,” and that’s where they will access hospice.

Update: Just after I finished writing this blog post, Bloomberg and Kaiser Health News wrote about a big fraud case against a hospice chain based in Arkansas, and updated the status of other investigations.

• Bloomberg: AseraCare Hospice Accused by U.S. of Defrauding Medicare
• KHN: Lawsuit Accuses Company Of Fraudulently Cycling Patients Through Nursing Homes, Hospice Care

Project looks at problems in how deaths are investigated

The results of a yearlong joint investigation of the American autopsy system by ProPublica, Frontline and NPR show that problems in the death investigation system throughout the country have led to innocent people being sent to prison, “allowed the guilty to go free and left some cases so muddled that prosecutors could do nothing.” When autopsies aren’t done, diagnostic errors go undetected and opportunities to learn more about medicine are lost.

One story of patient rights and legal wrangling sports the remarkable headline “Why Can’t Linda Carswell Get Her Husband’s Heart Back?” It hinges, among other things, on the simple fact that “Even though the Institute of Medicine has reported that medication errors affect an estimated 1.5 million patients per year, it is not typical to conduct toxicology tests as part of clinical autopsies. They are routine in forensic autopsies.”

Another piece takes a broader view, exploring the reasons behind and consequences of the fact that autopsies are performed on only about one in 20 patients who die in hospitals when, 50 years ago, the rate was one in two.

Hospitals aren’t required to perform autopsies – the Joint Commission hasn’t included autopsy rates in its accreditation process since 1971 – and neither Medicare nor private insurers reimburse hospitals for the procedures, which Allen found cost about $1,275 each. The implications of these financial disincentives, combined with related factors such as some physicians’ confidence that new diagnostic tools such as MRIs and CT scans provide such accurate results that they obviate the need for postmortem work, are far-reaching.

Diagnostic errors, which studies show are common, go undiscovered, allowing physicians to practice on other patients with a false sense of security. Opportunities are lost to learn about the effectiveness of medical treatments and the progression of diseases. Inaccurate information winds up on death certificates, undermining the reliability of crucial health statistics.

Furthermore…

A 2002 review of academic studies by the federal Agency for Healthcare Research and Quality found that when patients were autopsied, major errors related to the principle diagnosis or underlying cause of death were found in one of four cases. In one of 10 cases, the error appeared severe enough to have led to the patient’s death.

Other stories in the project report that suspicious deaths of the elderly are rarely investigated and that the deaths of children “pose special technical challenges for forensic pathologists.”

Watch the full episode. See more FRONTLINE.

Americans unprepared to pay for long-term care

In the Chicago Tribune, Deborah Shelton examines how unprepared Americans are to pay for their own long-term care needs as they age. Long-term care tends to slip under the radar because, as one of Shelton’s sources told her, “People buy insurance for their life because they know they are going to die, for their car because they know that can get in an accident and for their health because they know they can get sick, but people don’t tend to buy insurance because they think they are going to need someone to help them take a bath.”

Long-term care encompasses everything from nursing home fees to in-home assistance with everyday routines. It all comes with a price tag; Medicare only covers a limited amount and Medicaid programs apply only to those below certain economic thresholds. That leaves the middle class, who can’t afford the services but don’t really qualify for Medicaid, in the lurch, Shelton writes.

Most people assume Medicare will pay the bills, but the program covers long-term care only under certain conditions and for a limited time. While Medicaid covers long-term care, beneficiaries have to be poor or willing to “spend down” their assets to be eligible. Private insurance can be expensive and excludes applicants with serious medical problems.

As a result, many families pay out of pocket until they exhaust their resources and then turn to Medicaid.

The Affordable Care Act attempted to fill in the blanks, but long-term care provisions of that reform plan withered under intense cost pressure.

An initiative that would have incorporated long-term care into the Obama administration’s health reform plan was scrapped in October after actuaries determined that it would not be financially self-sustainable over the long haul. The Community Living Assistance Services and Supports Act would have created a voluntary, self-funded, employer-based insurance option to help people save for long-term care.

Related

• CLASS Act is gone but long-term care problem remains
• Long-term care insurance premiums jump

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