The handbook of hard-luck tales

Ever since Costs of Care announced a national essay contest for people’s personal stories about their health care bills, I’ve been eagerly checking the website to see how the contest is faring.

The wait is almost over: Winners will be announced next week. In the meantime, six finalists – three clinicians and three patients – have been chosen. Entries are being judged by a distinguished panel whose members include author and essayist Dr. Atul Gawande; Jeffrey Flier, dean of Harvard Medical School; Michael Leavitt, former U.S. Secretary of Health and Human Services; and Michael Dukakis, former Democratic nominee for president of the United States.

It would be hard to think of an organization better suited to something like this. Costs of Care is a nonprofit organization focused on creating greater awareness, especially among doctors, of how everyday clinical decisions can have an enormous financial impact on patients.

Of the stories that have been posted on the website so far, what mostly comes through is frustration, mixed with no small amount of sadness for everyone who’s caught up in a system that ought to be cost-conscious but seldom is.

There’s the story of a 41-year-old pregnant woman, an immigrant with a low-paying job who no longer has enough money to buy food. What tipped her over the edge? Three ultrasound bills, only one of which was covered by her insurance. Tarcia Edmunds-Jehu, a nurse midwife from Boston who submitted her story to the contest, writes that two of those ultrasounds probably weren’t even necessary and wouldn’t have made any difference on the outcome of the pregnancy – but because of the mother’s age, they were ordered as a routine precaution.

Edmunds-Jehu sums it up:

We almost never think about what a test costs or whether it is paid for. Trying to find out the cost of a test is sometimes almost impossible. We almost never stop to think if a test is really indicated, or if the results will change the course of their treatment.

As providers we order tests because they are there, or because it’s easy, or because everyone gets them, or because we are scared if we don’t we’ll be sued, or because of arbitrary protocols. Sometimes we order tests because it’s the best thing for a patient.

No one orders tests thinking we might be taking food out of the mouths of our patients and their families, but sometimes that is exactly what we are doing.

Another finalist entry comes from Brad Wright, a graduate student with a $3,000 deductible. When he developed a sinus infection, he was sent for a CT scan and a blood panel. What he didn’t know, until the bill arrived a month later, was that the laboratory was out of network – even though it was in the same building as the doctor’s office. The cost: $478. He writes that the experience “taught me a lot about our fragmented health care system, how little patients or providers know about the real cost of health care, and how hard it is for patients to make price-based decisions when the system isn’t designed with that in mind.”

To my mind, one of the most disturbing tales is this one, which comes from Dr. Steve Sanders, a primary care doctor in Tulsa, Okla. It’s the story of “Mike,” a 29-year-old unemployed, uninsured truck driver who wound up with a bill for $11,000 after going to the emergency room with chest pain. I’d urge you to follow the link and read the whole story to get all the details.

Many of these stories, especially Mike’s, have sparked some heated online discussion here, here and here.

How do clinicians balance between what’s necessary and what isn’t? When does reasonable care turn into defensive-medicine overkill? Should clinicians know the price for each service and recommend what the patient can afford, or should they recommend what’s best for the patient regardless of cost? Do patients need to be more assertive? Or should they just suck it up and pay the bill without complaining?

Clearly patients have to take some responsibility. Consider the case of Mike, who “forgot” to get on his wife’s health insurance plan after losing his job and ended up being uninsured, then told his doctor he would have to file for bankruptcy because he couldn’t pay his $11,000 ER and hospital bill. For one thing, forgetting to sign up for health insurance – especially if it’s available and affordable – is a pretty huge lapse of judgment. For another, why not first try to work out a payment plan with the hospital before filing for bankruptcy?

But the other side to this is that patients are often held hostage by a system that lacks transparency and gives them little control. The pregnant immigrant probably had no way of knowing whether additional ultrasounds were beneficial, one commenter wrote at The Health Care Blog: “She probably was too intimidated to even ask or question the doctor. A consumer-friendly health care system would have provided her the right information (in a manner she could understand) to help her make the right decision.”

Some commenters bashed Mike for going to the emergency room via ambulance for what turned out to be indigestion. Sure, it was expensive, but “the system delivered what was asked of it,” one online commenter wrote. “Health illiteracy at its finest” was the assessment of one of the commenters on the Costs of Care blog.

Others pointed out that the patient couldn’t have known the diagnosis ahead of time – and that when he wanted to leave the hospital, he was warned it would be against medical advice. “In most developed countries an ER doc would take responsibility for telling the guy to go home, but to come back if certain symptoms appeared/became worse,” wrote a commenter at Kevin MD. “This has little to do with tort reform and everything to do with being a physician.”

What’s the answer? I wish I knew. Unfortunately stories like this are common. I’m only surprised the Costs of Care essay contest received 115 entries rather than 1,150. Stay tuned for the announcement next Wednesday of the winner.

The cost of ordinary care

There’s a Russian proverb: It’s not the sea that drowns you; it’s the puddle.

The American concept of health insurance is shaped by the belief that people need the greatest protection from catastrophic, costly illnesses and conditions. Everything else – in other words, most routine care – is affordable and should be borne by the consumer.

At one time this might have been the case. But I’m not sure how well it continues to hold true. This study, which was published a couple of months ago in the Health Affairs journal, explains some of the cost trends that have been taking place. (Access to the article is by subscription only; a summary of the key points can be found here.)

Broadly speaking, almost 20 percent of working-age Americans now spend 10 percent or more of their pre-tax income on health insurance premiums and medical care. From 2001 to 2006, the number of people in this bracket grew by about 1 percentage point each year. If you estimate that the median household income in rural west-central Minnesota is around $40,000, on average that’s $4,000 worth of annual medical expenses and insurance premiums – and that’s before taxes are figured into the equation. Some individual families obviously are paying considerably less than this if they’re healthy (and lucky enough not to get hit with an expensive illness or injury); others are paying way more.

The study points out that the burden of out-of-pocket health care costs has been growing especially rapidly among middle- and upper-middle-class households with private insurance.

Data were collected from a sampling of 28,000 people under age 65 for each of the years included in the study. Since the survey was conducted before the recession, it’s probably safe to assume there was little change in 2007-2009 in the cost burden being shouldered by many of these households.

There seems to be multiple contributing factors to this trend, starting with household income, especially in the bottom half of the median. Have wages kept up with the cost of living and what it takes to feed, clothe and house a family? Probably not. The other issue, though, is that health insurance premiums and the cost of medical care have been rising faster than the rate of inflation. Put them together and what you have is a widening gap. Efforts to plug the gap have consisted mainly of increasing what people are being asked to pay out of pocket. It’s not at all clear whether this strategy can be sustainable over the long term.

There’s also something else going on: the growing prevalence of pre-existing conditions. Families USA, a national consumer advocacy group for affordable health care, is releasing a report tomorrow that attempts to quantify how many Americans have an identifiable health condition that might previously have precluded them from being able to obtain health insurance. Among the preliminary findings: 57.2 million working-age Americans have some kind of pre-existing condition that potentially affects their ability to be insured.

This is not a direct proxy, of course, for health care costs, nor is it a measure of health care affordability. The point is, millions of Americans have some kind of serious and/or ongoing health issue either in their past or that they’re dealing with currently, and it comes with a cost – not just to the overall system but to these people’s individual finances as well.

This isn’t an argument in favor of scrapping the entire structure and philosophy underpinning the U.S. health insurance system. Most of us, unless we’re millionaires, cannot afford the cost of something catastrophic. Coverage for the major medical bills is, after all, why most people need health insurance. Many Americans cling to the belief, however, that all the rest of it, the so-called routine stuff, is somehow more affordable – even though the evidence is mounting that for a sizeable portion of the population, the cost of routine, ordinary care is no longer routine or ordinary.

Should health insurance do better at covering basic services for which people are most likely to require medical care? Perhaps, although this comes with a hefty price tag of its own. Do we need to rethink the concept of deductibles and copayments and how they’re applied? Would some system of capitation help even out expenses so they’re more manageable for a broader swath of consumers? Or should we concentrate instead on curbing health care inflation or paying livable wages so the cost of ordinary care doesn’t get pushed out of reach?

The day-to-day costs of routine care might not seem like a big deal but they have an insidious way of adding up. In the public discussion about health care costs, we can’t afford to continue ignoring this fact.

Photo: Wikimedia Commons

Swamping the system?

Even before the Patient Protection and Affordable Care Act of 2010, aka the health reform bill, was signed into law last month, worries were being voiced about whether the health care system is prepared to handle an influx of millions of previously uninsured patients.

It’s a valid concern. The primary care system, defined here as family practice and general internal medicine, is stretched extremely thin these days. By one estimate, the U.S. will be short 35,000 to 44,000 primary care doctors by 2025. There are many factors contributing to this trend: early retirements, more physicians who are opting to work part time, and fewer physicians choosing primary care for their career. On top of this, an aging population is putting pressure on resources that are already strained. The situation is arguably worse in rural areas such as west-central Minnesota, where it has traditionally been harder to attract physicians in the first place.

So once more Americans are insured, who’s going to take care of them all? Kaiser Health News raised this question last month:

Look no further than Massachusetts, where insurance coverage is as close to universal as any place in the U.S., for a hint of the potential for trouble. Less than half of internists in the state (44 percent) are accepting new patients, according to data collected by the Massachusetts Medical Society last year. And the average wait time for new patients to get an appointment? Forty-four days.

Doctor-blogger Kevin Pho, who lives in New Hampshire, has seen the meltdown in neighboring Massachusetts up close:

When Amherst, Mass., family physician Kate Atkinson decided to accept newly insured patients, she was forced to close her doors six weeks later. She told the Boston Globe that "there were so many people waiting to get in, it was like opening the floodgates," saying that her office is getting "10 calls a day from patients crying and begging."

And this is in a state that, according to Pho, has the highest number of doctors per capita in the United States.

Pho delivers this parting shot:

At a time when primary care physicians are needed most, health reform does little to relieve these frustrated doctors of the unreasonable time pressures and onerous bureaucratic requirements that worsen their practice conditions and obstruct their patient relationships.

Providing affordable health care to an additional 32 million Americans is certainly worth celebrating. But whether our beleaguered primary care system can meet the challenges that lie ahead will be critical in determining health reform’s success or failure.

Another medblogger, Dr. Lucy Hornstein, predicts that when patients can’t find a primary care doctor who will see them, they’ll turn instead to expensive emergency-room or specialist care: "By the time they finally get into my office, multiple thousands of unnecessary dollars will have been spent to rule out everything I could have told them they didn’t have."

The primary care system began unraveling long before health care reform, and it was inevitable that, sooner or later, we’d pay the price. But for what it’s worth, I think we also need to dial down the fear-mongering a notch or two.

To be sure, there will be a fair amount of pent-up demand once the formerly uninsured have the security of health care coverage. It’s a fact that, as a group, the uninsured tend to be in poorer health than the rest of the population (although it should be noted here that it’s not clear which comes first: Are they in poor health because they’re uninsured and can’t afford needed care? Or did they become uninsured because they had poor health to begin with and lost their job and then couldn’t obtain coverage?).

I suspect it will take some time for these folks to catch up on needed health care services. I’m not sure it’s a given, however, that they’re going to consume vast quantities of care, or that they’re going to seek out the most expensive care they can get. Many of the uninsured, in fact, are young, healthy adults in their 20s and 30s. These folks might be uninsured because they can’t afford health insurance premiums. Or perhaps they work at jobs that don’t offer health insurance, or they have simply opted not to be covered. This segment of the uninsured might not swamp the system as much as we fear.

Nor am I convinced the situation in Massachusetts can reliably be extrapolated to all other states. When it comes to the structure and delivery of health care, the system ultimately is highly local. Data collected over many years by the Dartmouth Atlas project have made it clear there are big differences from one region of the U.S. to the next, and even from one city to the next. In Minnesota, for instance, health care tends to be integrated and lower-cost. All the hospitals here are not-for-profit. The rate of uninsurance has historically been one of the lowest in the U.S. (although this has begun to shift in recent years). Contrast this with other states in which health care is significantly more fragmented, or the landscape is dominated by for-profit health chains. When there’s this much variation, it gets difficult to make assumptions or accurately predict how things will play out once more of the population has access to health insurance.

If there’s a lesson here, it’s that the health care ecosystem is intensely intertwined. You can’t tinker in one area without having an impact – often unintended – somewhere else.

Would it have been better if we had shored up the primary care system first, before adding millions of previously uninsured patients to the rolls? Probably. It’s not an easy fix, however, and given the number of years it takes for new physicians to get through the training pipeline, it’s not an overnight fix either.

Here’s something to think about, though: At long last, a much-needed spotlight has been turned on primary care. Maybe it’s the push that primary care doctors and their patients have been waiting for.

Image: "The Shipwreck of the Minotaur," J.W. Turner, 1805

Lessons from the veterinary clinic

The patient

The world of human health care could learn a thing or two from veterinary medicine.

I’ve been a veterinary client for many years and can’t help noticing the many areas in which veterinary medicine is such an effective model.

There are the small things: For instance, I’ve never had to wonder when my cat’s vaccinations are due because a reminder postcard arrives in the mail every single year. It’s rarely difficult to get an appointment or to have the veterinarian return a phone call, and test results are reported promptly, often on the same day. Even the parking at veterinary clinics is usually easy – a real convenience when you’re trying to juggle a cat in a carrier or a dog on a leash.

In the bigger picture, veterinary medicine seems better at managing costs, perhaps because pet owners are footing most of the bill themselves. Dr. Patty Khuly, a Florida veterinarian who blogs at Dolittler, gave her perspective on the cost curve in a recent post:

… When vets and clients know how much everything costs, and when everyone’s a stakeholder in the cost conservation game, smarter decisions get made.

Add to this the fact that 17% of our hospitals’ costs don’t need to go to the billing department for arcane code translation and chronic insurance carrier disputes and you’ve got a recipe for an automatically slimmer, less wasteful system.

Nor does the veterinary insurance market operate the same way as health insurance for humans, Dr. Khuly points out:

I’ll also agree that giving consumers a choice in their election of insurance carriers and plans makes a big difference to the viability of the system. Unlike our human system, for which individuals are effectively forced into one company’s plan by their employers, pet health insurance offers multiple carriers with multiple plans any owner can choose based on its merits and their personal level of risk aversion.

There’s none of the cost-shifting that takes place in the human health care world. There’s also a higher degree of transparency about prices, making it easier for clients to shop and compare and to know how much they’re likely to pay, whether it’s for routine vaccination or a complicated surgery .

To be sure, the veterinary world has seen much of the same run-up in technology and specialized services as in human health care (but without the medical arms race that has left some communities with a cardiac catheterization lab on practically every corner). You can get CT, MRI or ultrasound imaging for your pet. There’s oncology for pets, orthopedic surgery for pets and physical therapy for pets. Some veterinary clinics even have adopted electronic health records with an online portal, as Josh Seidman of the Information Therapy Center describes in a blog post about his dog, Molly, and the canine-centered care she receives.

None of this is necessarily a bad thing. It means we now have options for treating diseases and injuries that previously would have been considered untreatable. The only limitations, in fact, are the size of the owner’s bank account and his or her perception of the risks vs. the benefits.

While the money Americans spend on veterinary care is growing at the same rate as our spending on our own health, it doesn’t match the cost of the human health care system, a blogger with the American Enterprise Institute points out:

… We spend hundreds of times more on ourselves than on our pets. The main reason for this is obvious: We value our own lives and those of our families more than we do our pets or other animals. At the same time, however, veterinary care is one of the few areas of health where we are directly confronted with difficult decisions regarding the costs and benefits of additional treatments.

I don’t think we’d want to apply such stark values to our own health care decision-making. After all, pets and people are not the same thing. But we’re often unaware of how much our health care costs, nor do we always make the connection between spending and outcomes- and perhaps we should.

I recently had the chance to see this whole system at work, up close and personal. My cat wasn’t feeling well so we made an appointment at our local veterinary clinic, the equivalent of my cat’s medical home for all her primary care needs. An ultrasound exam was recommended, which meant we’d need a referral to a larger facility.

I researched the options online and chose Metropolitan Veterinary Referral Services in Eden Prairie. I’m very glad I did. It’s a practice that specializes in internal medicine for dogs and cats, with advanced services such as oncology, cardiology, gastroenterology, surgery, and diagnostic imaging and evaluations. They have an intensive care unit staffed 24 hours a day; they also provide around-the-clock emergency care. It sounds high-tech and indeed it was high-tech, yet the place had the atmosphere of a neighborhood clinic. The care was patient- and family-centered, two hallmarks of quality in the world of people care.

When my cat’s ultrasound exam indicated we needed to do a biopsy, I promptly received an itemized estimate of what the whole package was likely to cost:

(The final bill, by the way, fell almost exactly in the middle of this estimate. Try getting cost information this accurate and straightforward from a medical clinic or hospital.) It was a real exercise in the true cost of care and the need to weigh that cost against the likely benefit to the patient.

These are some of the practical lessons to be learned from the veterinary clinic. Other lessons are harder to categorize.

How do we make health care decisions, especially when our decisions are on behalf of someone else? Are we able to separate our emotions from the patient’s best interests? Do we react in knee-jerk fashion or do we try to gather information and see the big picture?

What is the value of kindness and compassion? Providers can’t bill for it, and technically speaking, it has nothing to do with outcomes – yet it matters, especially when the patient is very sick or the prognosis is uncertain.

What do we want for the end of life? Do we want to exhaust all the options in search of a cure or do we believe it’s more important to focus on quality of life? Thinking about it ahead of time, before there’s a crisis, can give us a better chance of clarifying what’s important to us and making good decisions.

Finally, here’s the last lesson: Sometimes the story doesn’t turn out the way we want it to. Some diseases can’t be stopped, no matter how much money or how much treatment we throw at them. When that happens, we have to recognize it and let the patient go, knowing that life is something that’s only borrowed and one day we have to give it back.

Photos by Anne Polta

Uninsured and out of options

For the past couple of years I’ve been following the story of Jeannine. We belong to the same online discussion group. Jeannine is in her late 30s, lives in Los Angeles and works as a medical records transcriptionist. Five years ago she was diagnosed with marginal zone lymphoma in one of her salivary glands. It’s slow-growing and was treated in 2004 with radiation.

A few months ago, problems started to develop with her other salivary gland. For most people, this would mean a visit to the doctor, a referral to an oncologist and some diagnostic work such as a PET/CT scan and a biopsy.

Not for Jeannine, because she’s been uninsured for the past four years. 

It has truly been eye-opening to watch her perspective unfold. When I read her posts (she doesn’t post often, perhaps only once or twice a month, and there’s no reason to think she’s a fake or an Internet troll), the strongest impression I get is of someone trapped in a corner with no way out. Here’s something she posted earlier this year, worrying about whether she’d be able to pay out of pocket for a PET/CT scan:

My CT/PET in 2005 while I had insurance was about $5,000. Now I don’t have enough on my credit cards to pay that, will they allow me to make a deposit of say $100 or so and bill me for the rest? Or will they demand full payment up front before they’ll even do the scan?

She ended up putting the cost, around $2,500, on her mother’s credit card. And she had to make the full payment up front.

More recently she’s been having problems with her teeth, at least partially due to the radiation to her neck and jaw. She writes, "I consulted with 3 dentists here in LA and none will see me pro bono and they had no connections or solutions… I am completely tapped as far as credit."

There’s sometimes an assumption that the uninsured either aren’t trying hard enough to find coverage or just don’t want to pay for it. What I’ve been learning from Jeannine’s story is that even when help is available, it often comes with eligibility guidelines and many people simply don’t qualify. Jeannine writes that she’s single and child-free and earns about $20,000 a year. "I apparently do not qualify for anything at all," she writes. "I am stuck in the middle. The poverty level in CA is $14,500 a year."

If she lived in Minnesota, she might be a candidate for MinnesotaCare, the state’s subsidized program for the uninsured. But she wouldn’t automatically be eligible; she would have to live in Minnesota for a minimum of six months and be uninsured for at least four months, and she couldn’t work for an employer who offered health insurance and covered 50 percent or more of the premium. She might also be a candidate for the Minnesota Comprehensive Health Association, the state’s high-risk pool for people who are otherwise uninsurable. Here again, however, she’d have to qualify. And state laws allow MCHA to charge a higher premium than the rest of the marketplace – a premium that many people might not be able to afford.

Even these types of programs for the hard-to-insure are not a sure bet. Many of them in fact are under fire, often because of runaway costs. TennCare, for instance, was at one time lauded for helping Tennessee achieve nearly universal coverage, but the state eventually had to rein in the program and cut people from the rolls, leaving them uninsured once more.

Jeannine has tried to buy health insurance on her own, but because of her health history she’s either turned down or quoted a price there’s no way she can afford. She’s looked into the possibility of joining a clinical trial but there’s nothing at this point for which she’s eligible. Someone pointed her in the direction of a nonprofit cancer organization that offered financial support in the form of a one-time check for… $150. No, there is not a missing zero or two in that figure.

Although we’d like to think that nonprofits and charity organizations are helping to meet some of the needs of the uninsured, the reality is that they’re overwhelmed with demand. A couple of months ago Jeannine attempted to get into a free eight-day clinic being held in Los Angeles for the uninsured. She reports:

I waited in line for many hours before being told they had reached their max amount of people that they could help and was turned away – I only had one day off that week to do this, yet the demand was so great that I was too late, and this was only on day 2 of the event. They had already reached their full capacity, they came out and told everyone they could wait, but the likelihood of someone not showing up was probably zero, so don’t waste your time.

There’s a belief that the uninsured are clogging up emergency rooms across the United States because ERs are one of the few places where they won’t be turned away. In reality, they’re not among the majority of emergency-room users; the most recent estimate puts those without insurance at about 20 percent of all emergency-room patients. Most of the time they aren’t using the emergency room as a substitute for regular medical care; usually they’re there because a chronic or non-urgent problem has gone unattended and has mushroomed into something acute.

I think the biggest lesson I’ve learned from Jeannine is how it feels to be uninsured:

… I am holding off far too long for medical care because of not just the fear of large bills but the absolutely unbelievable feeling of shame that comes attached to it. The looks and reactions I get are that somehow it is my fault, that I must have been irresponsible and somehow I deserve to be uninsured.

She has been MIA from the discussion group for a couple of weeks so I don’t know right now how she’s faring. She seems smart and savvy, and I can’t help wondering how someone could fall so completely through the safety net. One of these days her cancer will likely progress to the point of needing treatment, and I have no idea how she’ll be able to manage it.

The view from the trenches

Most doctors want to provide good care for their patients, but they’re up against a reality that often undermines their best efforts and makes it hard to live up to the dictum "first do no harm."

What do you do if the patient really needs to be on medication but can’t afford to pay for it? What about the patient who’s struggling with a medical issue and is behind on paying his or her doctor bills? Why do so many patients lack a medical home and a primary care doctor who is responsible for their care?

One of the things I like about physician-bloggers is the perspective they bring. They see these issues from a point of view that most of us don’t have – and from time to time they give us a peek of their world and some of the struggles with which they’re confronted every day.

For Dr. Timothy Malia recently, it was three patients and their three e-mails, and the disheartening prospects for any kind of health insurance reform. One of the patients had a high deductible and wanted to skip an X-ray so she wouldn’t have to pay the cost out of pocket. Another patient decided to skip refilling two prescriptions and postpone an appointment -again, to save money. And the last patient was uninsured, struggling to attend school and cope with mental health issues, unable to afford an office visit and owing the doctor for three or four previous visits.

"I was disheartened," Dr. Malia writes:

As a physician I feel a moral obligation to care for them, a feeling that goes beyond the business of health care. But, in the end, society has made health care a business, and there is only one way to keep the doors open in the American marketplace. I used time to try to help these three patients, but my soul’s bruising made me less effective the rest of that evening, and each time I thought of the three of them since then.

He wonders how we can finance health care so patients can receive necessary treatment and doctors aren’t hampered in providing basic services. And he asks the question: "Is it too much that I, as a family physician, can hope my patients did not struggle with the costs of only the most basic and reasonable services?"

Over at Musings of a Distractible Mind, Dr. Rob Lamberts ponders the implications of medical homelessness and concludes it is one of the main problems with the current health care system:

Given the nature of care in the U.S., most patients are required to be their own homes. They serve as the conduit where medical information from one provider goes to another. They are the prime decision-makers in their care – often making these decisions without understanding or assistance from those who do understand. They are the only ones with the "big picture" of their health, yet they don’t really know enough to say if that picture is good or bad. They are helpless and vulnerable to sales pitches from drug companies, device manufacturers, insurance companies and unfamiliar doctors.

I am not talking about every patient in our system, but I am talking about a large portion (perhaps the majority). Some may spin this as patient empowerment, but unfortunately much of it is a case of patient abandonment. People are left to fend for themselves in a confusing, complex, and hostile system, and unfortunately many of their lives depend on their ability to manage this.

The primary care doctor’s office would be the logical place for patients to have a medical home, Dr. Lamberts writes. But this would take time, access to information and an adequate supply of primary care doctors, none of which the current system is able to meet.

Dr. Lamberts doesn’t have an answer to medical homelessness. He believes, however, that "one of the first steps is for people to be aware there is a problem in the first place."

How much, exactly, should Americans be expected to pay out of pocket for their health care? It’s one of the questions raised by Dr. Malia; Kaiser Health News takes a closer look here at this complicated issue and the divisions it has created among Washington lawmakers.

For another take on patient empowerment, and some interesting discussion, check out Dr. Lucy Hornstein’s recent post, "The Dirty Little Secret about Patients as Partners in Health Care," at her blog, Musings of a Dinosaur.

Illustration: trench warfare, World War I. Photo courtesy of the U.S. government.

Health care spending: What matters most?

If society can’t pay for all the health care that people need or want, what should the priorities be? Where should preventive care be ranked? What about care that’s costly but has a high probability of success? What about services that might not be as essential? What should matter most?

The Center for Healthcare Decisions, a health care policy think tank based in California, decided last year to seek the public’s views on these questions. The result is "What Matters Most," an illuminating look at how Americans prioritize the health care benefits that are most important to them.

The findings, which were recently released (the executive summary is here and the full report here), suggest that Americans are more willing to make tradeoffs than they’re often given credit for, and they support the concept of care that has been shown to be effective.

Among the highlights from "What Matters Most":

– There is strong agreement among Californians that insurance coverage is most important for saving lives, preventing illness and restoring or maintaining basic activities of living.

– When medical problems do not have a major impact on an individual’s functioning or life span, or when treatments are not likely to work well, Californians consider them a lower priority for coverage.

– Certain situations – such as those regarding obesity and substance abuse – elicit intense debate, reflecting differing views about illness and the obligations of health insurance.

The project involved phone surveys with 1,019 respondents and 15 discussion groups with 176 participants across the state of California.

People placed the highest priority on two things: medical issues that would result in illness, disability or death if not prevented or treated, and medical issues that interfere with daily functioning. Furthermore, they supported coverage for treatment options that were both available and effective, and they wanted to see less expensive treatment tried first.

Occupying the middle ground were problems that caused discomfort but didn’t interfere with daily living, and non-medical services that help people become or remain healthy and fit.

Among the items that ranked the lowest: medical treatment requested by patients chiefly for convenience or reassurance (MRI scans for minor problems, for instance) and problems that aren’t medically significant and would resolve over time without treatment.

What does this mean to policymakers and ultimately to the public? The report suggests that if the goal is to reduce health care costs and increase access, a basic plan could be developed that gives people some assurance of coverage for the most essential care. "Foregoing ‘inconsequential’ care is no bargain unless patients can obtain and afford the care that matters most," the report notes.

For services at the middle priority level, options might be developed that help balance resources and benefits, the report’s authors suggest. And for care deemed lowest in priority or least effective, a tiered cost-sharing model is a possible solution, they said.

While the findings of the report don’t reveal the perfect answer to designing a health benefits plan, they do provide "the starting point for coverage based on meaningful, valued care for individuals and communities," the authors wrote.

The public needs to be actively involved in these kinds of discussions, the report said. "Their participation can help policymakers design coverage standards that are most likely to be accepted by individuals in their roles as patients, as taxpayers and as concerned citizens desiring a system that is fair and affordable."