“I don’t think the medic ever saw anybody so messed up and still living. Doc was trying to give a shot of morphine. I looked over at him, and that needle in his hand looked to me like a runaway sewing machine. I actually had to hold on to his arm to steady him so he could give me a shot.”
Those are the words of Dennis Joyner, a Vietnam War veteran who, while patrolling the Mekong Delta, lost both legs and an arm in a mine explosion. Joyner’s story, and millions of others like it, is now honored by the American Veterans Disabled for Life Memorial, the newest monument on the National Mall in Washington, D.C.
The fact that the memorial opened just last year is itself a blunt statement about the complex and sometimes shameful relationship our nation has had with its “wounded warriors.” At the memorial’s dedication, President Obama shared the story of a Continental Army soldier who lost the use of one of his hands in the American Revolution. That wound made him officially “unfit for labor,” but also unable to receive any kind of disability pension. He wrote the White House in frustration that “many of those who aided in conquering the enemy are suffering under the most distressing poverty.”
Sadly, those words written more than 200 years ago still carry truth today, as the nation’s health care system still struggles to help veterans heal and manage their health. That struggle persists despite more than $150 billion being spent annually by the U.S. Department of Veterans Affairs.
While that amount may seem like more than enough to care for some 9.1 million VA-enrolled veterans, it’s important to bear in mind the complexity of these cases in terms of not only physical health and disability, but mental health and socioeconomic factors (these are, after all, young people, barely into their lives as workers and earners, who often come from low-income, low-education backgrounds where support simply cannot be sustained). In many ways, disabled veterans are textbook examples of the highly-complex, high-risk cases that challenge virtually all providers to coordinate care, manage resources and control costs.
So it is with more than a little sympathy that community hospital leaders should view the struggles of the VA. Community hospitals know all too well the impediments that come with caring for complex, chronically ill patients within the financial and regulatory constraints of government-paid health coverage. At the same time, it re-affirms that those in charge of these programs – from Congress and the Iowa Legislature to agency and department heads – have an obligation to properly fund and manage them so that innovation is encouraged.
That is where IHA comes in, supporting and representing the interests of Iowa’s community hospitals and ensuing access for the patients they serve. It is also fundamentally why IHA has called into question the state’s plan and timeline for implementing Medicaid managed care, a plan that not only lacks innovation, but presents a real threat to the accumulated progress made by Iowa providers.
It is all too easy to forget people who live on society’s margins, including those who are disabled, chronically ill and poor. For disabled veterans like Dennis Joyner, the new memorial — at last — speaks to that marginalization and serves to remind a nation, in the heart of its capital city, that there is an obligation to care.
But there will never be a memorial for Medicaid enrollees. Let’s do everything possible to ensure one will never be needed.
It’s a town like hundreds of others scattered across the nation’s midsection. The county seat with about 9,000 people, tiny by coastal urban standards, but not quite “small” by local standards. An economic base in manufacturing and agriculture. Ninety minutes to the nearest city of 50,000. An attractive Main Street and a Walmart bring regional shoppers. A state park with a good-sized lake brings in regional tourists.
There’s also a hospital and its stats are also familiar. Forty beds and 170 employees. About 1,000 annual admissions and an average census of 10. Fifty thousand outpatient visits and 200 births a year. But it’s not enough – this hospital is dying.
In fact, it’s slated to close in October. The reasons are familiar: a shrinking population that is leaving behind the old, the poor, the uninsured and the under-insured. And shrinking reimbursements from Medicare and Medicaid that are failing to be offset by other revenue streams. All made worse by a state government that refuses to expand Medicaid – even while hospital leaders have issued countless warnings about the consequences and even as this hospital has foundered in financial straits.
There are those who will shrug away this hospital’s demise. “It was just one hospital,” they will say, even though it is also hundreds of jobs (both in and out of the hospital) and millions of dollars and the only hospital in an entire county and beyond. “It was just one hospital,” they will say, even though there will be no replacing its community benefits, its community support or its community leadership – ever.
Some will say this is the natural evolution of the marketplace, as if the marketplace was as pure, organic and free from manipulation as the Serengeti (well, the Serengeti of 300 or more years ago). But that’s not how health care works and there’s no going back.
For better or worse, this nation has chosen to treat the business of health care differently as a matter of priority and policy. A commitment has been made to accessible care. Through public policy, generations have worked to safeguard that access, particularly for vulnerable populations, most recently with the Affordable Care Act (ACA) and Medicaid expansion. When a hospital closes, it is a failure to uphold that commitment.
Advocates in the state where this hospital is slipping away are continuing to fight for Medicaid expansion, just as IHA successfully did three years ago. That “win” was a big one for Iowa hospitals, but other threats are still out there and the financial straits hospitals are sailing today are as perilous as ever.
Right now, charting a course through the state’s rollout of Medicaid managed care tops the IHA agenda. IHA continues to monitor, analyze, respond, provide resources and gain allies on this enormous and complex issue. It isn’t going away anytime soon, no more than Medicaid, Medicare or ACA are going away.
Just like hospitals, these policy behemoths are not only a major part of the U.S. health care system, they are at the foundation of the nation’s economic and social infrastructure. They are like tectonic plates, constantly in motion as they are pushed and pulled in all directions by the forces of Congress, state and local governments, regulators, courts and countless others whose lives and livelihoods are inextricably connected to that infrastructure.
When those plates move, it can rock a hospital’s world. That’s why IHA exists. There is much at stake, many stakeholders, many challenges – and many opportunities. That is why hospital-focused advocacy and advocates are so important, to tell the hospital story again and again – as many times as it takes.
Because that story should never be allowed to end with, “It was just one hospital.”
Editorial boards at three of Iowa’s major daily newspapers have joined IHA in calling on the state to reconsider its implementation of Medicaid managed care. Last week, both the Cedar Rapids Gazette and the Dubuque Telegraph-Herald published editorials supporting IHA’s position. Meanwhile, the Des Moines Register has published multiple editorials demanding that the Branstad administration put the brakes on its plan.
“We agree with critics such as the Iowa Hospital Association, which argues that private managed care likely will result in higher administrative costs in the pockets of private firms while access to care is reduced and payments to providers are squeezed,” wrote the Gazette. “The good news is the Federal Centers for Medicare & Medicaid Services (CMS) must still sign off on Branstad’s plan. We urge the CMS to reject this ill-conceived, poorly-executed privatization push.”
“Privatizing Medicaid in Iowa is an attempt to fix what isn’t really broken,” wrote the Telegraph-Herald, adding that “it’s hard to imagine that the four companies chosen will handle this new piece of business with the best interests of the clients foremost in their corporate minds” and “it’s ludicrous to believe this transition can take place less than four months from now and be effective.”
The Register noted that a poll showed only 22 percent of Iowans support Medicaid managed care and that health care providers and advocates for the poor are also concerned. “The state has provided no evidence privatization will improve health care quality and access — likely because it cannot find any. Iowans have no assurances these private companies will be transparent or held accountable for problems.” The Register also called on citizens to contact CMS directly to oppose the plan.
An earlier Register editorial stated, “Privatizing Medicaid will make the cost of the program more predictable, as the state will pay fixed monthly fees to companies that assume responsibility for Iowans’ care. But will the number of visits to providers be limited? Will records remain available to the public? How much money will be shifted from covering care to paying administrative costs? Will fewer physicians accept Medicaid patients?
“All health-care providers should be concerned. So should anyone who relies on Medicaid. So should anyone who cares about vulnerable Iowans.”
So, have you heard the news about Medicaid managed care? Well, let’s do a little flyover and see what’s making headlines around the nation. Better tighten that seat belt – it’s definitely going to be a bumpy ride.
First stop, the Sunshine State: “Florida health officials said Wednesday they would give insurers a 7.7 percent rate increase in the fledgling Medicaid managed care program, in what has been a contentious battle between Gov. Rick Scott, the insurers and hospitals.
“The Republican governor lobbied hard to get federal approval for the statewide managed care program, which launched last year. He promised it would save money and improve health care for more than 3 million poor and disabled Floridians. But now that the program seems in desperate need of more money, Scott has been blaming the insurance companies and hospitals.
“Health insurers have lost $542 million through 2014 and said they can’t afford further losses. They asked for a $400 million raise and a 12 percent rate increase from the state. Scott’s administration warned that any increase could negate the roughly 5 percent savings the program has generated and had previously countered with a 6.4 percent increase.” Ouch.
Maybe things are going better up north: “A two-year, $1.6 billion contract will keep alive a fledgling system in which private companies administer New Hampshire’s health insurance program for low-income people but a dispute between those companies and mental health care providers remains unresolved.
“The stand-off between the state’s 10 community mental health centers and the two insurance companies that now hand out Medicaid payments could undermine recent reforms, state Health and Human Services Commission Nick Toumpas on Thursday warned a commission overseeing a Medicaid makeover that was mandated by a 2011 law and began 21 months ago. ‘Without the ability to provide mental health services, the entire program would unravel,’ he said.” Uh-oh.
Next stop, Bluegrass Country: “Kentucky’s Medicaid Managed Care system has experienced profound growing pains since its implementation four years ago, but Cabinet for Health and Family Services officials assured a legislative panel Thursday that the state is taking steps to resolve disputes between medical providers and managed care organizations (MCOs).
“Providers like Sen. Danny Carroll, chief executive officer of Easter Seals West Kentucky, which provides care for disabled adults and youths, have complained of delayed or denied Medicaid payments and a morass of bureaucratic hurdles to clear for each MCO.”
Meanwhile, in Massachusetts: “A first-in-the-nation program aimed at controlling costs and improving health care for some of Massachusetts’ poorest and sickest residents has sustained deep financial losses since its launch in 2013, dealing a setback to the state’s efforts to control rising medical spending through more coordinated care.
“The three insurers in the pilot program lost a combined $54 million in 18 months, according to a recent report from the Executive Office of Health and Human Services. And as losses mount, insurers and state officials say it is too early to tell whether the program is improving the health of its members.”
All of these stories were published in the last six weeks, indicating that Medicaid managed care is a bottomless fount of controversy for state governments, bad news for beneficiaries and anti-innovation for providers. And yet Iowa managed care proponents continue to insist that this is the arrow that will hit the Triple Aim bulls eye of lower cost, higher quality and better outcomes.
Based on other states’ well-documented experiences, it appears more likely Iowa will be shooting itself in the foot.
When Congress debated the Affordable Care Act in 2009, the legislation originally included a provision that would have allowed Medicare to reimburse doctors when they meet with patients to talk about end-of-life care.
But then Sarah Palin argued that such payments would lead to care being withheld from the elderly and disabled. Her comment ignited a firestorm among conservatives and helped fuel the opposition to the legislation.
Her assertions greatly distressed Dr. Pamelyn Close, a palliative care specialist in Los Angeles.
“It did terrible damage to the concept of having this conversation,” she said.
Amid the ensuing political uproar, Congress deleted the provision. And the lack of payments and concerns about the controversy further discouraged doctors from initiating these talks, according to Close.
“We just are not having these conversations often enough and soon enough,” Close said. “Loved ones who are trying to do always the right thing, end up being weighed with tremendous guilt and tremendous uncertainty without having had that conversation.”
When done right, according to Close, these counseling sessions often delve into end-of-life treatment options and legal documents, such as advance directives and living wills. The issues to be covered are complex and typically require a series of discussions.
Right now, Medicare only pays doctors for this sort of advanced care planning if it happens during the first visit for new Medicare enrollees. But the government recently has again proposed that Medicare reimburse doctors for including these conversations in their practice, whenever they occur.
Already, some private insurance companies are starting to do just that.
Meanwhile, the Alliance Defending Freedom, a conservative Christian organization, has formally opposed Medicare’s proposal.
“By paying doctors for these conversations, what we’re doing is opening the door to directive counseling and coercion,” said Catherine Glenn Foster, an attorney with the group. Foster says her organization supports end-of-life counseling and planning, but not in a doctor’s office.
“A doctor is not really the person you’d want to be having it with – particularly not a general practitioner who would not be able to advise on the nuances of end-of-life care in the first place,” she says.
But patients seem to want these talks. A 2012 study by the California HealthCare Foundation found that 80 percent of Californians would like to have an end-of-life conversation with their physician, but fewer than one in 10 has done so.
Many doctors who initiate the discussions often do so on their own dime. More often, they don’t have them at all, said Dr. Daniel Stone, an internist with Cedars-Sinai Medical Center in Los Angeles.
“When a doctor has patients scheduled every 15 minutes, it’s difficult to have a face-to-face conversation about values and goals related to the end of life, which is one of the most sensitive topics that you can possibly discuss with a patient,” Stone said.
Dr. Susan Tolle, an internist with the Center for Ethics in Health Care at the Oregon Health and Science University in Portland, says the informality with which such conversations are held now means that family members may not be included. Having the discussion as part of a formal doctor’s appointment can change that, she said.
“What it does is, it gives this really important conversation dignity and standing,” she said.
In Oregon, doctors have been squeezing end-of-life discussions into regular medical appointments for decades, under less-than-ideal circumstances. Over the last five years a quarter of a million Oregonians filed their wishes with a state registry. They use what’s known as a POLST form, which stands for Physician Orders for Life Sustaining Treatment. A version of it has been adopted by some other states, including New York and West Virginia.
Jo Ann Farwell, a retired Portland social worker who was recently diagnosed with a brain tumor, completed the form after talking to her doctor.
“I had surgery and had a prognosis of four to six months to live,” she said, after she was diagnosed with a brain tumor.
She did it, she said, to make sure her last hours are as comfortable as possible.
“I wouldn’t want to be on tube-feeding,” she said. “I wouldn’t want to be resuscitated, or have mechanical ventilation, because that would probably prolong my dying, rather than giving me quality of life.”
In the 1990s, health care workers all over Oregon recognized that the wishes of patients weren’t being consistently followed. So the health care establishment worked with the state and with ethicists to prioritize end-of-life talks; the result was the POLST form.
Rep. Earl Blumenauer, a Democrat from Portland, has introduced the Medicare reimbursement legislation every session since 2009. Until now, he says, the federal government hasn’t placed any value on helping people prepare for death, and he finds that ironic.
“The Medicare program will pay for literally thousands of medical procedures, many of them very expensive and complex, even if the person is at the latest stage of life and it may not do any good,” Blumenauer says.
From a purely financial point of view, the change could save money. But Blumenauer says that’s not what’s driving him.
“I don’t care what people decide,” he says. “If they want to die in an ICU with tubes up their nose, that’s their choice. What we want is that people know what their choices are.”
Farwell, the brain tumor patient, well remembers when her sister was dying from cancer.
“She never talked about death or dying,” Farwell said, “never talked about what she wanted at the end. It was very, very difficult for me to try to plan and give her care.”
Farwell wants her sons to be in a better position when it comes to carrying out her wishes.
The federal government is now accepting public comment on the Medicare reimbursement proposal. It’s expected to make a decision in November.
This story is part of a partnership that includes with KPCC, Oregon Public Broadcasting, NPR and Kaiser Health News.