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.
Judith Graham (@judith_graham), AHCJ’s topic leader on aging, is writing blog posts, editing tip sheets and articles and gathering resources to help our members cover the many issues around our aging society.
If you have questions or suggestions for future resources on the topic, please send them to judith@healthjournalism.org.
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.
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.
Judith Graham (@judith_graham), AHCJ’s topic leader on aging, is writing blog posts, editing tip sheets and articles and gathering resources to help our members cover the many issues around our aging society.
If you have questions or suggestions for future resources on the topic, please send them to judith@healthjournalism.org.
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.]
Judith Graham (@judith_graham), AHCJ’s topic leader on aging, is writing blog posts, editing tip sheets and articles and gathering resources to help our members cover the many issues around our aging society.
If you have questions or suggestions for future resources on the topic, please send them to judith@healthjournalism.org.
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.
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
Americans unprepared to pay for long-term care
Filed under: Aging, Government, Health care reform
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
Long-term care insurance premiums jump
Filed under: Aging, Government, Health care reform, Hot Health Headline, Public health
As the population ages and costs continue rising, paying for long-term care is a big issue for middle class families. Some say long-term care insurance can be a solution, but there are significant issues associated with these products.
In the Minneapolis Star Tribune, Jackie Crosby reports that, “Trapped between fast-rising costs for care and weak returns on their investments, insurers have been raising long-term care premiums by double-digit percentages in Minnesota and nationwide.”
Long-term care coverage has been around since the 1970s, and gained popularity in the ’90s, when the government started offering tax incentives. According to Crosby, it’s getting more expensive now because of what one expert called “the perfect storm.”
Insurers set their rates on assumptions that some people would let their policies lapse. But people held on to policies longer than expected. And their claims are bigger because they’re living longer.
Low interest rates have had perhaps the biggest impact, because insurers planned to cover claims based on reserves they invested. When those investments fell short of expectations, insurers turned to policyholders to make up the difference.
State and federal officials see long-term care insurance as key to limiting the strain placed upon government health programs by America’s aging popular, Crosby writes, and they have thus “spent considerable energy trying to encourage the middle class to plan ahead with long-term care insurance, without much luck.”
The Obama administration last month scrapped the CLASS Act, a long-term care insurance program and major piece of federal health care reform. Minnesota launched a program in 2008 that allows median-income households that buy long-term care policies to shelter some assets if they apply for Medicaid. Still, only about 11 percent of people in the state have the insurance.
Even though the Medicaid program was designed as a safety net for people in poverty, middle-class seniors routinely deplete their assets and turn to the state.
In Minnesota, Medicaid pays about 40 percent of elderly long-term care. Costs could rise fivefold by 2035 to an “unsustainable burden” of $5 billion, according to a report last year from the Citizens League.
Aging in place becoming more popular, possible
Filed under: Aging, Health care reform, Health policy, Hot Health Headline
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.
Graham to lead AHCJ’s resources on aging
Veteran health care journalist Judith Graham will be AHCJ’s topic leader in building new resources for journalists covering aging.
Judith Graham
Graham, who was at the Chicago Tribune for 14 years, will write tip sheets and background briefs, recognize important reporting on the issue, ask other journalists to share their experience on the topic and she will curate lists of resources for journalists.
She will encourage and review suggestions from AHCJ members on what resources they need to cover this increasingly important beat.
We’ve asked Graham to introduce herself:
I’m a long-time journalist who started writing about health care finance and policy in the mid-1980s when this was a new beat, with only a handful of reporters tracking it closely across the country. Over dozens of years, I’ve reported on Medicare, Medicaid, long-term care, chronic care, patient safety, public health, efforts to improve health care quality, end of life care, and the business of health care, among other topics.
Understanding aging is both a personal and professional passion of mine. On the personal front, my mother had multiple sclerosis for 63 years and very early in life, I came to understand how the health care system fails people with long-term chronic illnesses. As a caregiver, I dealt for years with problems that frail, older people experience – finding transportation to medical appointments, uncoordinated medical care, securing reliable home health assistance, debilitating isolation, dealing with insurance hassles, and more.
For the past year, I’ve authored a monthly column on aging for the Tribune Co. newspapers, which was distributed widely across the country. Also, I’ve hosted more than half a dozen hour-long Web chats on aging issues and written extensively about these topics on my blog, Triage (now discontinued), and in the news pages of the Chicago Tribune, where I was a senior health and medicine reporter until recently.
Please feel free to contact me via email (judith@healthjournalism.org) with questions or suggestions about how to improve this site. I’m eager to make it as useful to you as possible.
Author sees need for more drug safety info for elderly
Writing a guest blog item for Scientific American, AHCJ member Laura Newman profiled the case of her mother to argue that health regulators and Congress should “back drug safety initiatives in the elderly,” noting that “people over age 75 are under-represented in clinical trials, leaving physicians in the dark as to safety.”
The particular case involved an often-prescribed drug to treat high cholesterol:
Even as my mother was in crisis, doctors told me that they were astounded that such a high-dose statin was given to a low-risk, frail, elderly women. By low-risk, she had no history of cardiovascular disease and she met the widely used and time-tested Framingham Risk Factor criteria. She did not smoke, had low-level, well-controlled hypertension, but a high cholesterol. I sensed deterioration months before she was diagnosed with rhabdomyolysis.
Her mother died within eight weeks after doctors diagnosed her with rhabdomyolysis, a life-threatening condition, and acute kidney failure.
Apply to lead AHCJ’s resources for covering aging
The Association of Health Care Journalists seeks freelance assistance in building helpful and dynamic web pages for fellow journalists covering issues surrounding aging.
This year-to-year commitment would include writing tip sheets for journalists, summarizing key issues, webcasting short interviews with top experts, and identifying good story examples and important dates for journalists. This writer would work with AHCJ’s Web editor to encourage reader interaction and should be willing to share knowledge at AHCJ events. Experience in covering aging a must. Multimedia experience a plus. Read more …
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Join us in Atlanta
for Health Journalism 2012
Fellowship applications
due Feb. 27
New at HealthJournalism.org
- Data gives depth to investigation of patient safety
- What reporters should know about Alzheimer’s and related dementias
- Apply for fellowships to attend Health Journalism 2012
- AHCJ asks Supreme Court to permit broadcast of arguments in health reform case
- Tips for print, online journalists to embrace broadcast opportunities
- Numbers reveal how often, or how rarely, states check doctors’ disciplinary records
- How I did it: Falsified charts in nursing homes linked to patient care
- Access Denied: Looking at a lack of health care availability
- Transparency & medical errors: Public reporting of patient harm is a potent force
