The Empowered Patient

When you or a loved one enters a hospital, it is easy to feel powerless. The hospital has its own protocols and procedures. It is a “system” and now you find yourself part of that system.

The people around you want to help, but they are busy—extraordinarily busy. Nurses are multi-tasking. Residents are doing their best to learn on the job. Doctors are trying to supervise residents, care for patients, follow up on lab results, enter notes in patients’ medical records and consult with a dozen other doctors.

Whether you are the patient or a patient advocate trying to help a loved one through the process, you are likely to feel intimated—and scared.

Hospitals can be dangerous places, in part because doctors and  nurses are fallible human beings, but largely because the “systems” in our hospitals just aren’t very efficient.  In the vast majority of this nation’s  hospitals, a hectic workplace undermines the productivity of  nurses and doctors who dearlly want to provide coordinated patient-centered care.

At this point, many hospitals understand  that they must streamline and redesign how care is delivered and how information is shared so that doctors and nurses can work together as teams. But this  will take time. In the meantime, patients and their advocates can help improve patient safety.

Julia Hallisy’s Story

Julia Hallisy learned about patient safety the hard way. Hallisy’s daughter, Kate, was diagnosed with an aggressive eye cancer when she was five months old. Over the next decade, she went through radiation, chemo, reconstructive surgery, an operation to remove her right eye, a hospital-acquired infection that led to toxic-shock syndrome and an above-the-knee amputation.

“My husband and I spent years of our lives in hospital hallways, waiting rooms, and emergency rooms,” Hallisy recalls. “We became savvier and more educated the longer my daughter’s illness went on. . . .

“We slowly came to realize that the quality of healthcare she was receiving, as mediocre as it sometimes was, was actually far superior to the care other families around us in the hospital were receiving. They began to notice this discrepancy as well, and they wanted to know how we knew the things we did and who had given us such valuable ‘inside’ information. We had to explain to them that we had come across everything we knew . . . by watching our daughter suffer through medical errors, misdiagnoses and inexperienced medical providers, and investigating the mistakes and taking steps to make sure they didn’t occur again.”

Kate was treated at some of the finest hospitals in the San Francisco area.

She died in 2000. Kate was eleven years old

                             Empowering a Patient,  an Advocate, or a  Survivor

How could a mother handle such unspeakable grief? Hallisdecided to write a book that might help others. In 2008,  I reviewed it on HealthBeat.

At the time I wrote: “Remarkably, The Empowered Patient is not an angry book. It is not maudlin. To her great credit, Hallisy manages to keep her tone matter-of-fact as she tells her reader what every patient and every patient’s advocate needs to know about how to stay safe in a hospital.”

Recently, Hallisy emailed to tell me know that the book has now become a non-profit foundation: The Empowered Patient Coalition.

Go to their website and you will find fact sheets, checklists, and publications including, A Hospital Guide for Patients and Families that you can download at no charge. I found the Hospital Guide eye-opening. I have read and written a fair amount about patient safety in hospitals, but it told me many things that I did not  know.

For instance, did you realize that it is perfectly appropriate to ask your surgeon how many times he has performed this particular operation?

Are you aware that you (or your advocate) can—and should—read your medical records while you are in the hospital? (This may be the only way you will find out that your doctors disagree with each other about your treatment.)

Do you know what to do if you if you request a consultation with a more experienced physician because you have serious questions about the decisions made by residents –and hospital staff don’t agree that you need to talk to someone higher up on the ladder?

Continue reading


Obama Wins Round One of Budget Negotiations

CNN is reporting that the “Fiscal cliff deal is down to wrangling over the details.” While others in the media continue to say that talks are stalled, everything I know about both the economics and the politics of the situation tells me that CNN is right.

At 4:30 this afternoon, CNN updated its story: “Both sides agree the wealthy will pay more, so now fiscal cliff  talks come down to how much Republicans can wring out of the White House in return for giving in on taxes.

“To President Barack Obama, it’s all about first locking in additional revenue from raising taxes on high-income owners, an outcome the GOP has long rejected.”

President Obama had made it clear that negotiations over government spending on safety nets such as Medicare wouldn’t begin until Republicans accepted a higher marginal tax rate for individuals earning over $200,000 and couples earning over $250,000.

The president dug in, and, according to CNN, he has won round one.

“Retiring Republican Rep. Steve LaTourette of Ohio told CNN on Thursday that he sensed a shift in the House GOP approach during a conference meeting the day before.

“A GOP source told CNN that talks between staff members on both sides resumed Thursday for the first time this week, after Obama and Boehner spoke by phone the day before.”

A Two-Step Approach

It is not clear whether negotiations over so-called “entitlements” will be concluded before the end of the year. But CNN, reports

“All signs point toward a two-step approach sought by newly re-elected Obama — an initial agreement that would extend lower tax rates for income up to $250,000 for families, while letting rates return to higher levels from the Clinton era on income above that threshold.”  That agreement on taxes will be signed and sealed before the end of the year.

“Even conservatives such as Oklahoma Sen. Tom Coburn and Louisiana Gov. Bobby Jindal acknowledge the obvious — taxes on the wealthy are going up despite opposition by Republicans.

“‘Whatever deal is reached is going to contain elements that are detrimental to our economy,’ Jindal wrote Thursday in an opinion piece published by Politico. ‘Elections have consequences, and the country is going to feel those consequences soon.’”

Continue reading


The Future of Health Reform May Turn on Senate Races

Below, the introduction to a post that I published earlier today on

While all eyes focus on the presidential race, the ultimate fate of the Affordable Care Act (ACA) could depend on the Senate contests in the states.

Even if Mitt Romney were elected, he alone could not overturn major provisions of healthcare reform. Only Congress can pass the legislation needed to change the ACA.

Republicans are expected to maintain control of the House, but if Democrats hold the Senate, they will be able to block House bills aimed at eviscerating “Obamacare.”

Republicans are expected to maintain control of the House, but if Democrats hold the Senate, they will be able to block House bills aimed at eviscerating “Obamacare.”

What is At Stake

If Republicans take the Senate, the two chambers could pass legislation that would:

  • eliminate the premium subsidies designed to make health insurance affordable for middle-income and low-income families
  • bring an end to Medicaid expansion, and
  • rescind the individual mandate that everyone buy insurance or pay a tax.

Under “budget reconciliation,” Republicans would need only a simple majority to pass such legislation. In the Senate, 51 votes would do it. Today, Republicans hold 47 seats.

Razor-sharp margins in many states make it impossible to predict outcomes. Polls only give us a blurry snapshot of one moment in time – and in states like Arizona, candidates have been trading leads from week to week.

Much will depend on the demographics of who turns out to vote.

What Could Happen: Three Scenarios . . .

To read the rest of this post please go to


Medicare, Medicaid, Global Warming and Gun Control– Can Liberals and Conservatives Find Middle Ground? Should They? Part 1

 In a nation divided, “compromise” has become an extraordinarily appealing idea. Weary of the acrimony and endless wrangling, more and more Americans are asking: Why can’t conservative and liberal politicians come together and forge bipartisan solutions to the problems this nation faces?

Keep in mind that it is not only our elected representatives who are having trouble finding common ground. The Pew Research Center’s latest survey of “American Values” reveals that as voters head to the polls this November, their basic beliefs are more polarized than at any point in the past 25 years. In particular, when it comes to the question of government regulation and involvement in our lives, the average Republican has gravitated to the right. In 1987, 62% of Republicans agreed that “the government should take care of people who can’t take care of themselves.” Now just 40% support this proposition. Democrats haven’t changed their views on this issue: most continue to believe “there, but for fortune . . .”

In Congress, where polarization has led to paralysis, some argue that Republican leaders are responsible for creating gridlock by insisting on “party discipline.” But liberals in Washington also are accused of “dividing the nation.” Even President Obama, who set out to unite the country, has been described as “the most polarizing president ever.” During his third year in office, Gallup reports, “an average of 80 percent of Democrats approved of the job he was doing, as compared to 12 percent of Republicans who felt the same way. That’s a 68-point partisan gap, the highest for any president’s third year”–though this may say more about the temper of the times than the man himself. Nevertheless, many commentators believe that progressives, like conservatives, need to cede ground. The debate has become too contentious, too “political,” they say. I disagree. There are times when we cannot “split the difference.” Too much is at stake. We must weigh what would be won against what would be lost.

But reporters who have been taught that they must be “fair” and “balanced” often write as if all points of view are equally true. After all, they don’t want to be accused of “bias.” Thus they fall into the trap of what veteran Supreme Court reporter Linda Greenhouse calls “he said, she said” journalism. To them, the “middle ground” seems a safe place– a fair place– to position a story.

This may help explain why so many bloggers and newspaper reporters are calling for “bi-partisan consensus” as they comment on some of the most important issues of the day.

Global Warming

Writing about global warming, Huffington Post senior writer Tom Zeller Jr. recently declared: “Compromise is the necessary first step to tackling the problem. What ordinary Americans really want is for honest brokers on all sides to detoxify and depoliticize the global warming conversation, and then get on with the business of addressing it. That business will necessarily recognize that we all bring different values and interests to the table; that we perceive risks and rewards, costs and benefits differently; and it will identify solutions through thoughtful discussion and that crazy thing called compromise.” [ my emphasis] (Hat tip to David Roberts (Twitter’s “Dr. Grist”) for calling my attention to this post.)

  Continue reading


Breaking the Curve of Health Care Inflation

The evidence is building:  As we move toward making the Affordable Care Act a reality,  Medicare spending in slowing, and even in the private sector, for the first time in more than a decade, insurers are focusing on reining in health care costs .  

The passage of reform legislation two years ago prompted a change in how both health care providers and payers think about care.  The ACA told insurers that they would no longer be able to shun the sick by refusing to cover those suffering from pre-existing conditions. They also won’t be allowed to cap how much ithey will pay out to an desperately ill patient over the course of a year –or a lifetime.  Perhaps most importantly,  going forward, insurance companies selling policies to individuals and small companies will have to reimburse for all of the “essential benefits” outlined in the ACA–benefits  that are not now covered by most policies.  This means that, if they hope to stay in business, they will have to find a way to “manage” the cost of care–but they won’t be able to do it by denying needed care.

As for providers, they, too, will be under pressure. A growing number will no longer be paid “fee for service” that rewards them for “volume”–i.e. “doing more.” Bonuses will depend on better outcomes, and keeping patients out of the hospital–which means doing a better job of managing chronic illnesses.  Meanwhile, Medicare will be shaving 1% a year from annual increases in payments to hospitals. If medical centers want to stay in the black, they, too, will have to provide greater “value” for health care dollars– better outcomes at a lower cost.

This summer the Supreme Court’s decision sealed the deal. The ACA is constitutional. Health care reform is here to stay.

(Granted, if Mitt Romney wins the White House in November, all bets are off. But the Five Thirty Eight f’orecast, which has an impressive track record, suggests that Obama has a 70 percent chance of winning.  That said, liberals  should not be smug. The economy remains the greatest threat to President Obama’s re-election.)

Medicare Spending

The Obama administration should be broadcasting the news: Medicare spending is no longer growing at an unsustainable rate. Wednesday, Bloomberg columnist Peter Orszag commented on the “sharp deceleration” in Medicare’s outlays. A common way to evaluate the growth in spending for Medicare is to compare the increase per beneficiary to income per capita,” the former director of the Office of Management and Budget (OMB) wrote.  “Over the past 30 years, this excess cost growth for Medicare has averaged about 2 percent a year. The goal of many policy proposals, including provisions in the 2010 Affordable Care Act, is to reduce the future excess cost growth to about 1 percent annually.”

What is astonishing is that Medicare is now exceeding that goal. Over the past year, “excess cost growth has been much less than the target of 1 percent,” Orszag reports. “According to the most recent figures from the Congressional Budget Office, total Medicare spending this year through June rose 4 percent from the previous year. Meanwhile, the number of Medicare beneficiaries rose by almost 4 percent, too, and income per capita rose by about 3 percent. So excess cost growth has been significantly below zero let alone below the target of 1 percent a year.” 

This suggests that the nation’s Medicare bill does not have to pose a threat to the economy, even as the  number of Americans on Medicare’s rolls grows. Widely accepted reserach reveals that at least one-third of Medicare dollars are wasted on over-priced products and unnecessary reatments. Cut that fat, and we can accommodate an aging population.

Sweden faced the problem of a greying population years ago, and has managed to avoid what many who would like to slash “entitlement programs”  insist is an “inevitable” explosion in medical spending as a nation grows older. Healh care spending in Sweden has remained remarkably stable since the 1980s, costing roughly 9% of GDP, and when it comes to quality of care–and patient satisfaction– Sweden’s health care system is rated as one of the best in the developed world. Continue reading


Highlights from the Reconciliation Bill, and Maggie’s Comments on the Changes

Overall, the changes in the reconciliation bill will make the Senate
bill more progressive—and fairer.

My prediction: the bill will
. Those who oppose universal coverage are becoming
angrier, louder, more abusive, and more frantic. This is because they realize
that they are losing
, and now they are just flailing about.

evening (Thursday) I heard Bart Stupak acknowledge, on “Hardball
with Chris Matthews”, that while the Democrats may not have the
votes today, by Sunday, they could well have them.
On this, I agree
with Stupak.

Below, the details of the new bill, and my comments
in red.

Under the new reconciliation bill:

  • Low-income and middle-income families will have an easier time
    affording premiums.
    The tax credits for health insurance premiums
    are more generous for individuals and families with incomes between 250%
    and 400% of the federal poverty level (FPL)—i.e.  individuals earning
    less than $41,500,  or a family of three earning less than $70,400. When
    compared to the Senate bill, the legislation also cuts cost-sharing for
    individuals and families with incomes between 100% and 250% FPL.

Comment:  Research shows  that when a low-income
family of four (for instance a family earning less than $22,000) is
required to share in health care costs, too often they delay needed
care.  For these families, even a $15 co-pay can be a barrier. Fifteen
dollars will buy groceries for two dinners for a family of four (e.g.
spaghetti with tomato sauce and bread).  Middle-income families who
don’t have help from an employer also need the higher subsidies that the
new bill provides.

  • Six months after the bill is enacted, all existing health
    insurance plans are prohibited from imposing life-time limits on payouts
    or refusing to cover children suffering from pre-existing conditions.
    Excessive waiting periods before insurance kicks in also will be
    banned, and insurers will be required to provide coverage for
    non-dependent children up to age 26 on their parent’s polices.  (Parents
    will pay extra for the coverage, but adult children will get better
    deals than many would on their own.) Beginning in 2014, group health
    plans will no longer be able to exclude adults based on pre-existing
    conditions. Annual limits on how much an insurer will pay out will be
    restricted beginning six months after enactment, and prohibited starting
    in 2014.

Comment: Limits on how much insurers will pay out
annually or over a lifetime can condemn individuals to death. If you
have the bad luck to be diagnosed with a very expensive disease that
might require years of pricey treatments (MS for example, or childhood
cancers) your insurance can easily “max out”—even though treatment that
might cure you (in the case of some childhood cancers where we have been
making great progress)– or at least give you many additional years of

  • The “Cadillac Tax” on expensive health insurance plans has been
    pushed back five years and won’t go into effect until 2018.
    thresholds also have been raised: the tax will apply only to individual
    plans that cost $10,200 or more (up from $8,500) or family plans that
    fetch $25,500 (up from $23,000). Dental and vision plans would not be
    included.  Under the new bill, there is no special deal for unions.

Comment:  In my view, this is a positive change.
As I have argued in the past, the Cadillac tax could hit middle-income

  • While the Cadillac tax is rolled back, the Medicare tax for
    wealthy individuals earning over $200,000 and married couples who earn
    over $250,000 rises.
      Today, they pay a 1.45% payroll tax on wages.
    The Senate bill would raise that tax to 2.35%. The reconciliation bill
    expands the tax to include investment income (dividends, capital gains,
    etc.) as well as earned income. It still applies only to individuals who
    show income over $200,000 and couples who report income over $250,000.

Comment:  This tax makes up for the cut-back and
push-back on the Cadillac tax. In contrast to the Cadillac tax , this
tax is limited to those at the very top of the income ladder. Unlike the
middle-class, those earning over $200,000  have  enjoyed significant
tax breaks and income hikes in recent years. They are in a much better
position to afford the increase. It’s worth noting that other countries
tax investment income to help fund healthcare.

Continue reading


Taxes: Weight Watchers for the Health Care System

A few days ago San Francisco Mayor Gavin Newsom proposed adding a surcharge on soft drinks with high-fructose corn syrup as part of a campaign to combat obesity.

Newsom’s “soda tax” is just the latest development in a series of metropolitan initiatives aimed at promoting healthier living. New York, which pioneered smoking and trans fat bans, has been the most gung-ho city and similar bans now have been passed, or are being considered, by cities across the nation—and the world

Efforts like the soda tax are often derided as unnecessary big government intrusions, especially for something like corn syrup (or trans fat) that doesn’t hurt bystanders the way second-hand smoke does. Those who eat or drink poorly only hurt themselves; and the right to self-destruct is a right the government should respect (or at least this is what some say).

But here’s the problem: the cumulative effect of saying that obesity isn’t my problem is to make it everyone’s problem. Newsom’s spokesman, Nathan Ballard told the New York Times that “there’s a well-established nexus between obesity, which is caused by high-fructose corn syrup, and the increased health care costs for the city.” According to a 2004 study in the Annual Review of Public Health, obesity is responsible for between 5 percent and 7 percent of total annual medical expenditures in the United States. Every year excess weight costs our health care system more than $90 billion. Even employers shoulder the burden of obesity: overweight workers require as much a $2,500 extra in health care costs, adding up to almost $300,000 in medical expenses for a 1,000 person firm.

The reason why obesity costs so much is obvious. Individuals who are carrying too much weight are at an increased risk of hypertension, osteoarthritis, high cholesterol, type 2 diabetes, heart disease, stroke, gallbladder disease, respiratory problems, and cancer. And it’s only getting worse. A RAND study from earlier this year found that from 2000 to 2005 the obesity rate in the U.S. (, i.e. the number of people with a body mass index of 30 or above,) increased by 24 percent. Meanwhile the number of people with a BMI over 40 grew by 50 percent, and the number of people with a BMI over 50 grew 75 percent.

Continue reading


The Drug War versus Health Care

Yesterday President Bush gave a speech on the success of his drug policies in celebration of a new report showing that teen drug use has continued a decline that began in 1997. But it is not entirely clear that there is much cause for celebration: use of some of the most hardcore stuff—such as cocaine, crack, LSD, and heroin—has held steady over the past five years or so. True, recently the use of marijuana, amphetamines, and methamphetamines has dropped, but that’s hardly reason to declare victory in the war on drugs.

Like any good president, Bush wants to take credit for good news. But as the lack of progress in the battle against heroin and crack suggests, the U.S. is on the wrong track when it comes to drugs. Our institutional bias is still to see drug use and drug control as criminal justice issues when we should really be thinking about them as public health concerns.

Just take a look at history. According to a Health Affairs article from earlier this year, since 1987 public and private investment in substance abuse (SA) treatment has not kept pace with other health spending. From 1987 to 2003, the average annual total growth rate for SA treatment was 4.8 percent, while U.S. health care spending grew by 8.0 percent each year. Because of this mismatched growth rate, SA spending fell as a share of all health spending from 2.1 percent in 1986 to 1.3 percent in 2003.

Compare this drop in treatment spending to the increase in drug arrests: according to the Bureau of Justice Statistics, in 1987 drug arrests were 7.4 percent of all arrests reported to the FBI; by 2005, drug arrests had risen to 13.1 percent of all arrests. Our spending on SA treatment and the volume of drug arrests are moving in opposite directions. And for all the political pageantry surrounding yesterday’s report, President Bush’s FY 2008 budget calls for cutting $158.7 million from the Substance Abuse and Mental Health Services Administration (SAMHSA) budget and $278.9 million from the Safe and Drug-Free Schools and Communities (SDFS) program. 

Continue reading


Immigrants Exploit Our Health Care System…Right?

There’s no easier punching bag in politics today than undocumented immigrants. They can be blamed for any number of problems—including high health care costs. The Federation for American Immigration Reform (FAIR), for example, insists that “the costs of medical care for immigrants are staggering.”

But a handful of hot-off-the-press reports tell a different story. A just released Congressional Budget Office (CBO) study concludes that while immigrants are indeed “more likely [than American citizens] to rely on emergency rooms or public clinics for health care” the cost of caring for immigrants is much less than alarmists would have you believe.

This conclusion clashes with the widespread conception that emergency rooms around the nation are filled to the brim with Mexicans—all on the dime of the American taxpayer. In fact, a November UCLA study showed that “undocumented immigrants from Mexico and other Latin American countries are 50 percent less likely than U.S.-born Latinos to use hospital emergency rooms in California,” the state that incurs the most undocumented immigration-related costs. (The lower rate of hospital use is due to the fact that undocumented immigrants tend to be young and healthy. After all, border-crossing is a rough experience).

Of course, it’s not the rate of health care use that has people worried—it’s the cost of use. But a 2006 RAND study concluded that in 2000, health care for undocumented immigrants between 18 and 64 years old cost taxpayers about $11 per household—roughly the price of a cheeseburger in Manhattan.

Part of the reason the price tag is so low is that our health care
system does only the bare minimum for undocumented immigrants. The CBO
reports that 1986 Medicaid reforms stipulated that immigrants could
receive emergency Medicaid for must-have-care situations like
childbirth. But “emergency Medicaid covers only those services that are
necessary to stabilize a patient; any other services delivered after a
patient is stabilized are not covered.” Undocumented immigrants are
only assured enough health care to make sure they don’t die; so the
costs of emergency Medicaid are very low.

Continue reading


The Academic Buzz around Health Care

Being a young whippersnapper, it never occurred to me that health care policy was a relatively new field of study within our universities. But when Health Beat reader Bradley Flansbaum passed along the  Reuters story below to Maggie (original here)  and she passed it on to me, I gained a new perspective on the issue. It turns out that until very recently, health care used to just mean medicine. But today, thinking about health care demands thinking about  a lot of different things, like public policy, public administration, economics, politics, and even sociology.

This mixed bag is reflected in the diverse academic offerings at colleges and universities—as well as the swell of students interested in them. The Reuters story below suggests that there are three main motivations for the increased student interest: fascination, idealism, and profit. That sounds about right. You can either be genuinely interested in the complexities of health care or the politics surrounding it; want to fix the system for the greater good; or want to learn as much as you can about the system to better navigate it for GlaxoSmithKline.

There’s obviously a lot of good to be had from generations growing up understanding more about our insanely complex and counter-productive health care system. Teaching college students about the system now might instill a long-term openness to reform and improvement that wasn’t present in generations who never knew about health care until they got sick.

But I can’t help but wonder about the faddishness of it all. After all, health care isn’t the only broken system that could use some attention. Consider the criminal justice system. Back in the day, law and order meant being a lawyer or a cop. But today there are criminology and criminal justice programs around the world that focus on issues like incarceration, community policing, cost, risk management, and more. Yet the buzz surrounding these issues hasn’t been comparable to the much louder debate about health care—even though one out of 32 Americans is currently in the corrections system and a black male is more likely to have served time in jail than have a college degree. This too is a crisis.

Continue reading