Lopez columns on ailing dad spark discussions about end-of-life decisions
Filed under: Aging, Health policy, Hospitals, Hot Health Headline
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.
New journalists’ resource on aging debuts
AHCJ has rolled out another Core Curriculum topic on its website. “Aging” is the second in a series of core topic subject areas the organization believes today’s health journalists will need to master to cover the beat well.
Colorado-based writer Judith Graham is AHCJ’s topic leader on aging. She produces reporting guides, seeks out reliable resources, assigns stories and blogs regularly. She works with Pia Christensen, AHCJ’s managing editor/online services, to find the latest material, edit contributions and make the site as easy to navigate as possible.
If you have questions or suggestions for future resources on the topic, please send them to judith@healthjournalism.org.
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
Reporters spend 10 weeks immersed in end-of-life care
Filed under: Health journalism, Hospitals, Hot Health Headline, Nursing
Toronto Globe and Mail reporter Lisa Priest and photographer Moe Doiron spent two-and-a-half months embedded in a 20-bed critical care unit at a Toronto
Photo by quinn.anya via Flickr
hospital, following four patients and their families and chronicling life in an environment where, Priest writes, “death is a constant, almost routine event, claiming one in five patients who enter.”
Their assignment was to find out “How does one prepare for the end of life?” and explore the medical, ethical and economic challenges of that stage of life.
The result is a sprawling, intensive report on the state of end-of-life care in Canada, heavy on anecdotes. Priest’s centerpiece is subtitled “Spending 10 weeks with patients facing death“) but remains cognizant of big picture issues like cost and quality of life.
Where you are determines your end-of-life care
As you’ve likely noticed, the Dartmouth Atlas team has now focused its lens on end-of-life care and found, not surprisingly, what amounts to “more of the same.” Kaiser Health News’ Jordan Rau has the nuts and bolts, while Joanne Kenen, writing for Miller-McCune Magazine, takes a long view on the story, putting it into the context of popular Dartmouth Atlas pieces (think McAllen, Texas) and end-of-life outliers (La Crosse, Wis.). While you’ll have to check out her story for the in-depth version, here’s Kenen’s summary of the report:
Overall 1 in 3 of these patients died in the hospital, sometimes in the ICU and sometimes on life support, but there was significant variation from one region or even one hospital to another. Six percent of the patients received chemotherapy in the last two weeks of life, but in some regions and academic medical centers the rate went above 10 percent. Half got hospice but often for just a few days, too little for them and their families to fully benefit from the medical and psychosocial assistance and comfort hospice can offer.
If you’re looking for caveats, be sure to hit the second half of Rau’s story.
Residents not warned of nursing home foreclosures
Writing for The New York Times, Laurie Udesky reports that despite significant rates of foreclosures, California nursing homes are not required to notify residents – many of whom require constant care – that they’re being shuttered. She even found at least one home in which residents were caught by surprise when deputies showed up to force an eviction. Udesky also added a companion piece on the NYT’s Bay Area blog. Foreclosures, she found, are not uncommon among smaller nursing homes.
But a New York Times analysis of licensing and foreclosure data indicated that about 16 percent of the 1,600 Bay Area properties licensed as small residential-care homes has been in some stage of foreclosure since June 2006. According to RealtyTrac, a company that compiles foreclosure records, that includes more than 100 homes under foreclosure in the last six months.
It is impossible to tell from the data how many of these were operating as residential-care homes during the foreclosure proceedings or thereafter. But those properties housed as many as 700 elderly residents.
Fortunately, some in the state are working to close what Udesky referred to as a “loophole,” with a California senator introducing a bill that would “require people licensed to run such facilities to notify the licensing division of the Department of Social Services and the residents or their legal representative within 24 hours of notification of foreclosure, bankruptcy, missing a mortgage payment or the prospect of a utility cutoff.”
Grand Rounds points to end-of-life posts
AHCJ member Larry Beresford hosts the Palliative Care Grand Rounds this month and has compiled an impressive roundup of end-of-life blogs and related posts.
Highlighted sites include a blog from the American Academy of Hospices and Palliative Medicine, a blog that’s looking for hospice and palliative care professionals to become guest bloggers, one - irreverantly named “Death Club for Cuties” - for nurses who care for patients and families at the end of life, posts about do-not-resuscitate orders and more.
See Beresford’s post for all the links and details.
Palliative care piece launches embedded dispatches
Philadelphia Inquirer staff writer Michael Vitez has been embedded with Abington Memorial Hospital in suburban Montgomery County, Pa. Karl Stark, the Inquirer’s health and science editor, writes that “means he went there for an extended period and reported what he saw with almost no restrictions.”
Here’s how Vitez describes the series, which will be published over the next few months:
My goal is to spend a year at Abington, writing stories that show how one hospital deals with the biggest issues in health care today and also the changes that are coming fast and furious - regardless of what Congress and the President do - to hospitals and health care.
This first story looks at how the palliative care movement is medicine’s response to the dismal way people have died. I try to show, up close, how the team works, the agony that families feel, the immense costs involved.
In future stories, I’m going to look at how a hospital struggles to bring down infection rates, how it handles patients who have nowhere to go, the madness of one Medicare rule, the impact of the uninsured, and more. I hope in the end readers will get a bedside view of how things work, how things are changing, and I hope a great appreciation for our common humanity.
Vitez’s first report is a very readable and nuanced account of palliative care, something he looks at from the perspective of a patient’s family as well as that of the medical professionals.
Holiday reading: Hospitals sue patients; team helps people die with dignity
Filed under: Government, Health data, Health journalism, Hot Health Headline
Hopefully, readers of Covering Health will have some time off over the holidays. Here are two fairly extensive projects that we recommend for reading if you have some spare time.
Nonprofit hospitals sue patients
In an eight-month investigation, reporters Fred Schulte and James Drew of The (Baltimore) Sun found that over the past five years some of Maryland’s 46 nonprofit hospitals have received millions of surplus dollars from the state’s unique payment system “even as they sued tens of thousands of patients over unpaid bills. Many of these suits have been filed against patients in the poorest areas of the state.”
The reporters found that hospitals have won at least $100 million in the past five years in debt collection suits, have added interest rates at twice the rate allowed for other debts and have placed 8,000 liens on patients’ homes. They also found that Maryland doesn’t closely monitor hospitals’ debt collection practices and doesn’t have standards to determine who qualifies for free or reduced-price care.
The investigation has prompted statements from the University of Maryland’s Medical System and Johns Hopkins.
End-of-life care
Lee Hancock of The Dallas Morning News explores palliative care, which combines “traditional medicine with pain relief, spiritual counseling, and practical advice” for patients near the end of their lives and their families.
The Baylor University Medical Center’s palliative care team has cared for 2,000 patients since its creation in 2003. “Hancock and photographer Sonya N. Hebert spent almost a year at Baylor, documenting some of the most difficult and meaningful moments in the life of any nurse, doctor, patient or family member.”
The online presentation includes engaging and emotional video of patients and family members, as well as a nurse and doctor on the palliative team who discuss what they do and the limits of medicine and technology.
Other elements of the package include a timeline illustrating how technology has extended life, questions to help people plan their medical wishes, first-person pieces from Hancock and Hebert and many resources.
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