Health Care in America – The Experience of People with Serious Illness

http://features.commonwealthfund.org/health-care-in-america?_ga=2.69920404.568922675.1539785477-833267550.1532293701

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Listening to People with Serious Illness

These are just a few of the many voices of people with serious illness. They express the bewilderment and the loss of control. They convey fear that the system is indifferent to their needs and that the cost of care is beyond their reach. They reflect the joy of feeling well enough to get back to the familiar parts of life.

Most Americans expect the health care system will deliver effective treatment and support them through trying times when they get sick. But in reality, health care in America sometimes hurts even as it helps. Appointments can be difficult to get. Clinics and emergency rooms are often overcrowded. Doctors’ recommendations can be confusing and difficult to follow. And when the bills arrive, the costs can be unexpected and devastating. More than 40 million adults in the United States experienced serious illness in the past three years. More than 41 million provided unpaid care to elderly adults during the past year.

Health Care in America: The Experience of People with Serious Illness, a project of the Harvard T.H. Chan School of Public Health, the New York Times, and the Commonwealth Fund, is examining the experiences of Americans with serious illness — the sickest of the sick — and those who help care for them. Our goal is to understand whether our health care system is doing all it can do not just to treat illness but to help people cope with illness. Where is the system failing to meet people’s needs? How is it adding to already heavy burdens? Can the most seriously ill Americans afford the care our health system delivers?

To help answer these and other questions, we surveyed nearly 1,500 Americans with serious illness and the friends or family members caring for them. We considered someone to have serious illness if, within the past three years, they had two or more hospital stays and visits with three or more doctors. Below we discuss what we found. We then point to opportunities to help ensure that American health care not only saves people but also supports them in their time of need.

Serious Illness: A Life-Altering Journey

People going through serious illness often experience profound loss: loss of control, loss of independence, loss of time, and the loss of capabilities that most of us take for granted. The physical, emotional, and financial toll can be life-altering. It can mean an end to the activities that give life pleasure; growing isolation from friends, family, and familiar places; and an inability to work or support others. And there is the worry of being a burden on family and friends.

People with serious illness experience distress over and above the physical symptoms of their specific condition. And our new survey reveals that many are distressed. Sixty-two percent feel anxious, confused, or helpless at some point. Nearly half have emotional or psychological problems. Social isolation, a known risk factor for worse health outcomes, is common, with one-third of respondents reporting feeling left out, lacking in companionship, or isolated from others.

Many people with serious illness want to continue working or continue to provide care for family and friends who need their help, but they face high hurdles. Nearly three of four have had problems related to work or their ability to care for others (Appendix 1). Half reported being unable to do their job as well as they could before. Twenty-nine percent lost a job or had to change jobs. Half reported wanting to work but being unable to do so.

Our Health Care System Often Adds to the Burden of Illness

It’s fair to say that several consequences of serious illness — the distress, isolation, confusion, and lost earnings — are simply part of being sick. In some cases, they are probably inevitable. But being sick in America also means carrying some burdens that our health care system foists upon us.

Americans have high expectations for their health care. Most believe that when serious illness strikes, their health professionals will be fully prepared to make a diagnosis and provide appropriate treatment. This belief is not wholly unwarranted, of course. News stories brim with pioneering medical advances. For people with what were once fatal and untreatable diseases, there are now cures. Once harrowing chemotherapy regimens have been replaced by pills taken once a day. New technologies are improving the quality of life for many people with serious disabilities.

A health care system that promises so much would seem capable of minimizing the burdens of illness and care, of helping people cope. But for too many, American health care does the opposite: it places unexpected and unnecessary burdens on the sick. People struggle to obtain effective treatments and services. Pervasive fragmentation and lack of coordination across the health system make obtaining services heavy labor for people with advanced illnesses or frailty.

How common are such problems for this vulnerable group? In our survey, six of 10 people with serious illness reported at least one problem receiving care (Appendix 2). The difficulties people reported are symptomatic of the confusing patchwork that is health care in the United States. Nearly a third of those with serious illness spoke of trouble understanding what their health insurance covered. Twenty-nine percent reported being sent for duplicate tests or diagnostic procedures by different doctors, nurses, or other health care workers. Twenty-three percent of respondents said they experienced a problem with conflicting recommendations from the health professionals that saw them. One of five had difficulty understanding a doctor’s bill — a confusion not just about the costs of care but about what services were provided.

Unnecessary tests and procedures are not only redundant and costly. They carry their own risks to health. Safety in health care is, in fact, an ongoing challenge, especially for patients requiring complex care plans. Nearly one of four adults in our survey reported a serious medical error in their care. We know from other studies that people with serious illness are especially prone to diagnostic errors, prescribing errors, and communication mishaps. Every doctor and many patients can recall missed abnormal lab results, failure to account for allergies, and lost information that led to terrible side effects, or even death.

Paying for Care: Teetering on the Edge of Financial Ruin

Health care can be extraordinarily expensive for anyone, but especially so for people with serious illness. Millions of Americans are ruined financially by the costs of their treatment. Although most survey respondents reported having insurance coverage, nearly one in 10 were uninsured. Even with coverage, many are not adequately protected from health care costs. More than half of people with serious illness in our survey (representing more than 21 million people) experienced one or more dire financial consequences related to their care (Appendix 3).

Apart from its sometimes lasting health consequences, serious illness also appears to cause long-term financial problems for many. More than one-third of survey respondents used up most or all of their savings. Nearly one-quarter were unable to pay for basic necessities like food, heat, or housing. Nearly a third were contacted by a collection agency for unpaid bills. And the financial consequences are not felt by patients alone. More than one in four survey respondents reported that the costs of care placed a major burden on their family.

What Can Be Done to Improve the Experience of the Seriously Ill?

The burdens described above are not an inevitable companion to serious illness. They are a consequence — at times inadvertent, but no less real — of how our health system operates today. But things could be different. It is fully within our means as a nation to improve the experience of the millions of Americans living with serious illness and the millions more who help care for them.

In fact, strategies for delivering a better health care experience — one that ensures comprehensive, holistic care while always respecting the dignity of the individual — already exist. They just need to be adopted on a much wider scale.

  1. Build the capacity to identify and manage the behavioral health needs of patients and their caregivers. Integrating behavioral health services into medical care requires more than simply improving communication among siloed professionals. Multidisciplinary care teams that include behaviorists, social workers, and patients working together can ease the sense of helplessness, the loss, and the social isolation that seriously ill people commonly experience.
  2. Assess and address social service needs. Our findings illustrate that the impact of serious illness extends well beyond the medical realm. Many people cannot work while dealing with a life-threatening condition. This means fewer resources at a time when expenses can increase dramatically. Access to and support for reliable transportation, supportive housing, nutritious meals, and other services are critical to helping the seriously ill maintain a level of well-being.

  3. Make it easier for patients, caregivers, and professionals to work in close coordination with one another. Patients want their clinicians and other providers to talk to each other — and they want in on the conversation, too. Providers can improve communication with each other, with patients, and with caregiving family members and friends by taking full advantage of advances in consumer-friendly digital tools like secure texting, email, telehealth, and social media platforms. Coordination could be further enhanced by care managers or community health workers who check in on patients and caregivers between appointments and connect them to needed services.
  4. Make care more affordable. Universal health insurance coverage is a fundamental protection against the cost of unexpected illness. It not only guards against the threat of financial ruin but minimizes the costs incurred by everyone else when sick people who are uninsured (or underinsured) show up in emergency rooms or hospitals, which by law must treat everyone in need of care. Guaranteed coverage of preexisting conditions is especially important to those who have experienced serious illness and would otherwise be denied coverage by insurers. Keeping out-of-pocket costs like copayments and coinsurance reasonable not only prevents bills from going unpaid but makes it easier for patients to stick with their preventive care regimen, avoid repeated emergency room visits and hospitalizations, and maintain progress in their treatment.

Conclusion

Americans have high expectations for their health system. They spend more than the citizens of any other country with the hope that the right care will be there for them when serious illness strikes. But along with the treatments and services that can improve life for the seriously ill come an unwanted and unnecessary set of physical, emotional, and financial burdens. These burdens result from the choices made by policymakers, practitioners, payers, and others. Listening to the voices of people with serious illness, reckoning with the human costs of our current system, and lifting the burdens that health care places on us when we become sick may be the most important work health care can undertake.

 

10 thoughts on the state of healthcare from Scott Becker

https://www.beckershospitalreview.com/hospital-management-administration/10-thoughts-on-the-state-of-healthcare-from-scott-becker.html

1. Healthcare, given that we have 325 million-plus people in the U.S. with an aging and growing population that is living longer, is a very complex problem.

2. When I hear any executive, technology person or sales person look at an audience and say, “If everyone would just use this type of coaching app for diabetes or behavioral health, we would cut billions of dollars in costs,” I cringe, scoff, laugh and tend to get angry. I recently heard this in a speech I listened to.

3. Healthcare at its core is really taking care of individual patients. I see the theories behind population health and preventive health but I’m skeptical that it’s a fix-all.

4. When people say there should be no fee for service, I tend to think they’re representing some constituency. I assume at some level someone will still need to get paid to do something.

5. Hospitals and physicians and many providers will struggle as they become more reliant on governmental pay and as commercial patients are siphoned off. Government reimbursements will soften.

6. I’m not so dumb as to not see the irony in the campaign signs that said “get the government’s hands off my Medicare.”

7. Notwithstanding No. 6, whenever the government does place fingers on the scale, they are often wrong, and it often has massive unintended consequences.

8. The system costs with 325 million-plus people in the U.S. are crazy and insurance costs per family are insane.

9. Both parties are tone deaf as to the needs of the American people. Simply stated people that are poor need healthcare, and people that aren’t poor need affordable healthcare. These people are both Republicans and Democrats.

10. Given the quasi-monopolies of insurance companies in certain areas and the lack of insurance options, it’s likely we will need some sort of public option at some point.

 

GOP defeats bid to cancel expansion of Obamacare-evading plans

https://www.washingtontimes.com/news/2018/oct/10/gop-defeats-bid-cancel-expansion-obamacare-evading/

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Senate Republicans turned back a Democratic bid Wednesday to kill President Trump’s plan to expand the sale of health plans that fall short of Obamacare’s rules, saying Americans who buy insurance on their own need more options, not fewer.

Sen. Susan Collins, Maine Republican, sided with Democrats in the 50-50 vote, though the resolution needed a majority to advance.

Its defeat was never in doubt, really, though the vote allowed Democrats to paint Republicans as “junk plan” peddlers who don’t care about people with preexisting conditions who might pay more for robust coverage, as healthier people who cross-subsidize their costs ditch Obamacare for skimpier options.

This administration wants to let these junk insurance plans run rampant and let people be duped into thinking they’re having insurance when it covers almost nothing,” Senate Minority Leader Charles E. Schumer said. “They are a massive risk to any family who purchases them, and worse, they cause rates to go up for everyone else.”

Democrats are elevating their defense of health coverage for sicker Americans this mid-term season, citing polling that shows GOP threats to undo Obamacare’s protections for preexisting conditions are unpopular.

Sen. Tammy Baldwin, Wisconsin Democrat facing re-election, pushed Wednesday’s resolution under the Congressional Review Act, which gives Capitol Hill a chance to veto new rules and regulations.

She targeted a Trump rule, finalized in August, that would allow companies to sell “short-term” health plans that fall short of Obamacare’s full coverage menu, and to allow Americans to hold the plans for up to a year.

President Barack Obama himself allowed consumers to hold short-term insurance for a full year until 2016, when he capped short-term plans at three months.

Republicans were quick to point that out, although Mr. Trump’s regulation would let consumers renew for an additional two years.

The administration and its GOP allies say Americans have been priced out of Obamacare’s market, so invalidating Mr. Trump’s attempt to extend a lifeline would be cruel.

“Surely, they must have a better answer than snatching away one of the remaining options that some Americans still prefer,” Senate Majority Leader Mitch McConnell said.

“Our constituents deserve more options, not fewer,” he said. “The last thing we should do is destroy one of the options that still is actually working for American families.”

 

High-Deductible Health Plans Fall From Grace In Employer-Based Coverage

https://www.thefiscaltimes.com/2018/10/03/High-Deductible-Health-Plans-Fall-Grace-Employer-Based-Coverage

With workers harder to find and Obamacare’s tax on generous coverage postponed, employers are hitting pause on a feature of job-based medical insurance much hated by employees: the high-deductible health plan.

Companies have slowed enrollment in such coverage and, in some cases, reinstated more traditional plans as a strong job market gives workers bargaining power over pay and benefits, according to research from three organizations.

This year, 39 percent of large, corporate employers surveyed by the National Business Group on Health (NBGH) offer high-deductible plans, also called “consumer-directed” coverage, as workers’ only choice. For next year, that figure is set to drop to 30 percent.

“That was a surprise, that we saw that big of a retraction,” said Brian Marcotte, the group’s CEO. “We had a lot of companies add choice back in.”

Few if any employers will return to the much more generous coverage of a decade or more ago, benefits experts said. But they’re reassessing how much pain workers can take and whether high-deductible plans control costs as advertised.

“It got to the point where employers were worried about the affordability of health care for their employees, especially their lower-paid people,” said Beth Umland, director of research for health and benefits at Mercer, a benefits consultancy that also conducted a survey.

The portion of workers in high-deductible, job-based plans peaked at 29 percent two years ago and was unchanged this year, according to new data from the Kaiser Family Foundation. (Kaiser Health News is an editorially independent program of the foundation.)

Deductibleswhat consumers pay for health care before insurance kicks in — have increased far faster than wages, even as paycheck deductions for premiums have also soared.

One in 4 covered employees now have a single-person deductible of $2,000 or more, KFF found.

Employers and consultants once claimed patients would become smarter medical consumers if they bore greater expense at the point of care. Those arguments aren’t heard much anymore.

Because lots of medical treatment is unplanned, hospitals and doctors proved to be much less “shoppable” than experts predicted. Workers found price-comparison tools hard to use.

High-deductible plans “didn’t really do what employers hoped they would do, which is create more sophisticated consumers of health care,” Marcotte said. “The health care system is just way too complex.”

At the same time, companies have less incentive to pare coverage as Congress has repeatedly postponed the Affordable Care Act’s “Cadillac tax” on higher-value plans.

Although deductibles are treading water, total spending on job-based health plans continues to rise much faster than the overall cost of living. That eats into workers’ pay in other ways by boosting what they contribute in premiums.

Employer-sponsored group health plans, which insure 150 million Americans — nearly half the country — tend to get less attention than politically charged coverage created by the ACA.

For these employer plans, the cost of family coverage went up 5 percent this year and is expected to rise by a similar amount next year, the research shows.

Insuring one family in a job-based plan now costs on average $19,616 in total premiums, the KFF data show. The American worker pays $5,547 of that in a country where the median household income is more than $61,000.

The KFF survey was published Tuesday; the NBGH data, in August. Mercer has released preliminary results showing similar trends.

The recent cost upticks, driven by specialty drug costs and expensive treatment for diseases such as cancer and kidney failure, are an improvement over the early 2000s, when family-coverage costs were rising by an average 7 percent a year. But they’re still nearly double recent rates of inflation and increases in worker pay.

Such growth “is unsustainable for the companies I have been working with,” said Brian Ford, a benefits consultant with Lockton Companies, echoing comments made over the decades by experts as health spending has vacuumed up more and more economic resources.

For now at least, many large employers can well afford rising health costs. Earnings for corporations in the S&P 500 have increased by double-digit percentages, driven by federal tax cuts and economic growth. Profit margins are near all-time highs.

But for workers and many smaller businesses, health costs are a heavier burden.

Premiums for family plans have gone up 55 percent in the past decade, twice as fast as worker pay, according to KFF.

Employers’ latest cost-control efforts include managing expenses for the most expensive diseases; getting workers to use nurse video-chat services and other types of “telemedicine”; and paying for primary care clinics at work or nearby.

At the “top of the list” for many companies are attempts to manage the most expensive medical claims — cases of hemophilia, terrible accidents, prematurely born infants and other diseases — that increasingly cost as much as $1 million each, Umland said.

Employers point such patients to the highest-quality doctors and hospitals and furnish guides to steer them through the system. Such steps promise to improve results, reduce complications and save money, she said.

On-site clinics cut absenteeism by eliminating the need for employees to drive across town and sit in a waiting room for two hours to get a rash or a sniffle checked or get a vaccine, consultants say.

Almost all large employers offer telemedicine, but hardly any workers use it. Thirty-nine percent of the larger companies covering telemedicine now make it comparatively less expensive for workers to consult doctors and nurses virtually, the KFF survey shows.

 

 

 

Cost of Family Health Insurance Now Nearly $20,000 a Year

https://www.thefiscaltimes.com/2018/10/03/Cost-Family-Health-Insurance-Now-Nearly-20000-Year

 

Annual premiums for employer-provided health insurance hit an average of $19,616 for a family this year, a rise of 5 percent over 2017, according to a new survey by the Kaiser Family Foundation. Employees paid an average of $5,547 for their coverage, with employers covering the rest.

The average premium for family coverage has risen 55 percent since 2008 — about twice as fast as wages, which are up 26 percent, and three times as fast as inflation, up 17 percent over a decade.

Faced with relentlessly rising health care costs, many companies have required employees to pay for more of their care before insurance kicks in, and the Kaiser survey found that deductibles are rising even faster than premiums. Among workers who have a deductible — about 85 percent of insured workers — the average deductible amount has risen to $1,573, a 212 percent increase since 2008. Deductibles have risen eight times faster than wages over the last 10 years, the survey said (see the chart below).

Kaiser President and CEO Drew Altman said that he expects health care costs to be an important political issue for the foreseeable future. “As long as out-of-pocket costs for deductibles, drugs, surprise bills and more continue to outpace wage growth, people will be frustrated by their medical bills and see health costs as huge pocketbook and political issues,” Altman said.

Read a summary of the Kaiser Family Foundation’s 2018 Employer Health Benefits Survey here, and the .

 

4 Key Fact Checks on Trump and Medicare for All

https://www.thefiscaltimes.com/2018/10/10/4-Key-Fact-Checks-Trump-and-Medicare-All

President Trump published an op-ed in Wednesday’s USA Today, warning in dire language of the consequences of Democrats’ Medicare-for-all proposals. “Democrats would gut Medicare with their planned government takeover of American health care,” Trump says.

The problem: Nearly every line of Trump’s piece “contained a misleading statement or a falsehood,” writes Washington Post fact-checker Glenn Kessler.

We’ll provide a few examples below, but for a more complete analysis of Trump’s problematic, misleading or outright false claims, read Kessler’s piece or this Associated Press fact-check of claims the president has made in recent speeches at campaign rallies.

Why it matters: Trump’s op-ed and other recent criticisms of Democratic health-care proposals echo other GOP attacks claiming that Medicare for all would destroy traditional Medicare. Combined, they read less like a serious policy critique and more like cynical scare tactics — a ploy to muddy the waters around an idea that’s growing in popularity but still poorly defined in voters’ minds.

“There definitely are serious questions about ‘Medicare for All,’ including the massive tax increases that would be needed to pay for it and longstanding differences in society about the proper function of government,” the AP piece notes. Trump’s attacks skirt those serious questions, and differences of opinions among Democrats on Medicare for all, in favor of false or misleading campaign-style attacks.

Will it work? It very well might, at least in the short run. But at the Washington Examiner, Philip Klein critiques Trump’s line of attack from the right, arguing that it will backfire on conservatives in the long run and actually make socialized healthcare more likely. … By perpetuating the idea that Medicare is a great program that needs to be protected at all costs (rather than an unsustainable entitlement) it only makes it easier for liberals to make the case for socialized medicine. It also makes it harder to make the case for overhauling entitlement programs to avert the looming debt crisis.”

The four key fact checks:

* “Dishonestly called ‘Medicare for All,’ the Democratic proposal would establish a government-run, single-payer health care system that eliminates all private and employer-based health care plans and would cost an astonishing $32.6 trillion during its first 10 years.”

The facts: There are numerous “Medicare for all” proposals. Some would eliminate private and employer-based plans in favor of a single federally run health insurance program, but others would introduce a public plan option alongside existing private coverage choices. A new Kaiser Family Foundation report provides a useful overview of eight different legislative proposals introduced in the current session of Congress.

Trump is right that studies, like the one he links to by the libertarian Mercatus Center, have estimated that Bernie Sanders’ plan would add more than $30 trillion to federal health care costs. Proponents of a single-payer system argue that those price tags simply represent a shift in spending from the private to the public sector — a change, they say, that will wring costs out of the system overall while also providing for universal coverage.

* “As a candidate, I promised that we would protect coverage for patients with pre-existing conditions and create new health care insurance options that would lower premiums. I have kept that promise, and we are now seeing health insurance premiums coming down.”

The facts: Trump’s Justice Department argued in an ongoing Texas court case that Obamacare’s protections for patients with pre-existing conditions should be invalidated, and his administration has pushed insurance options that could weaken such protections. Trump’s claim about premiums coming down applies only to benchmark Obamacare plans, and is based on recent comments by HHS Secretary Alex Azar. Experts say that Obamacare premiums are stabilizing in 2019, but would have fallen if not for Trump administration policies. Meanwhile, premiums for employer-provided insurance, by far the most common type in the U.S., are still rising.

* “I also made a solemn promise to our great seniors to protect Medicare. That is why I am fighting so hard against the Democrats’ plan that would eviscerate Medicare.”

The facts: “Under Trump, the date for when the Medicare Hospital Insurance (Part A) Trust fund will be depleted keeps advancing,” Kessler notes. “If the trust fund is depleted, that means the government would not be able to cover 100 percent of estimated expenses. Yet because of Trump’s tax cut, the budget deficit is soaring even as the economy is booming, in contrast to previous periods of under-4-percent unemployment. That leaves the government less prepared to deal with the consequences of baby-boom retirements.”

* “The Democrats’ plan means that after a life of hard work and sacrifice, seniors would no longer be able to depend on the benefits they were promised.”

The facts: Not true. None of the plans would cut benefits for seniors, and the most frequently cited promises to be more generous. “The Sanders plan would be a fundamental change, expanding Medicare to cover almost everyone in the country,” the Associated Press notes. “But current Medicare recipients would get improved benefits. Sanders would eliminate Medicare deductibles, limit copays, and provide coverage for dental and vision care, as well as hearing aids. A House single-payer bill calls for covering long-term care.”

 

 

 

US hospitals pay up to 6 times more for medical devices, study finds

https://www.beckershospitalreview.com/supply-chain/us-hospitals-pay-up-to-6-times-more-for-medical-devices-study-finds.html

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U.S. hospitals spend more on prescription drugs than their peers in European countries, and the same is true for medical devices, a new study published in Health Affairs suggests. In some cases, hospitals in the U.S. paid six times more for a medical device than their European counterparts.

The study was conducted by two researchers from the London School of Economics and Political Science who looked at what hospitals in the U.S., U.K., France, Italy and Germany paid for various heart implants, such as stents and pacemakers. They used data from 2006 to 2014 from a large hospital panel survey consisting of 30,000 unique price points.

The researchers found that depending on the type of stent or pacemaker, U.S. hospitals paid anywhere from two to six times more than the country that paid the lowest prices. The country that often paid the lowest price was Germany.

One example provided was drug-eluting stent prices. The price of the device in the U.S. consistently exceeded the price in Germany by $1,000.
Prices between countries differed for various reasons, including the market power of medical device manufacturers and each country’s tech-based regulations.
The findings suggest “that manufacturers exploit varying levels of willingness to pay and bargaining power between buyers to charge different prices across hospitals and increase profits,” the researchers wrote.