The Disruptive Women in Health Care blog continually aims to encourage discussion and debate among readers about emerging issues and topics in the health care world. Historically, one of the ways that we have done that is through our weekly round-ups – that is, posts containing summaries and links to some of the big stories in health care news for the given week, with some original commentary and content sprinkled in as well. The way we see it, there is just too much happening in this burgeoning industry; it’s hard to keep up, especially when you’re busy disrupting and making headlines in the health care world yourselves. We know the weekly round-ups have been on hiatus for a while, but are happy to report that they’re finally making a comeback. Each week, we’ll be gathering some of the biggest health care news you can use from at home and abroad for posting on Wednesdays. Feel free to comment on what’s included and send us some links to articles to be considered for next week!

Has your week been too disruptive for you to keep up with the news?  Disruptive Women are on the case!  Here is this week’s round up of some of the most pressing issues here in America and around the world.

Here at Home:

Thanks to a provision of the Affordable Care Act (ACA), women are now able to receive free birth control, but only if it’s prescribed.  The New York Times explains how Catholic Colleges are using this loophole to combat contraception.

And, speaking of the Catholic Church and the ACA, USA Today says that Obama’s decision on Friday not to expand the conscience exemption to include religious institutions has been met with outrage from Church leaders and parishioners.

Remember that moment of panic you had when the swine flu epidemic came to the United States?  CBS News reports that swine flu numbers are rising again in Mexico. Will the US be next?

Susan G. Komen for the Cure, the nation’s leading breast cancer charity, announced Tuesday that it is halting its partnership with Planned Parenthood (per NPR) – a controversial decision that ignited a backlash from some of its supporters.

Here’s one perspective on Komen’s decision. What do you think? Will this impact your decision in giving donating to Komen, or another breast cancer non-profit in the future?

Sick? Took a sick day?  Is that enough of a reason for you to wind up unemployed?  HuffPo explains how an issue as simple as recovery from the flu has reached the Supreme Court.

With nearly two million women lacking health insurance and a quarter of a million unplanned pregnancies per year, Florida has a lot of challenges in terms of women’s healthcare.  Here’s what the state is doing to try and move ahead.

Around the World:

Brazil is calling for a registration of all pregnant women.  What does this mean for a woman’s right to choose within Brazil?

Japan’s population is shrinking. As more women choose a career over family, Japan faces declining birth rates. Could the United States be next?  ABC News takes a look.

Check back each week for the latest health care news!

There is, however, one area we don’t touch (in fact, we avoid it at all costs): partisan support for a candidate. While certainly all of our individual bloggers have opinions and perspectives, points of view and inherent biases, we will never run posts that are blatantly promoting one candidate for elected office over another.

I say this as a caveat to this post, the purpose of which is to announce a new series we’ll be running this year on the Disruptive Women in Health Care blog in which we explore the presidential candidates’ positions on health care and health policy, where they stand on particular aspect or aspects, what they envision to be an ideal health care system for this country and what role they envision the federal government playing in it.

This series is about more than just the Sustainable Growth Rate (SGR), the Affordable Care Act (ACA) or Medicare and Medicaid; it is about delving into each candidate’s philosophies, beliefs and stances towards health care and health policy, and trying to determine what specific policies and reforms each might undertake.

Image courtesy of the Mobile Press-Register.

The editorial team and I are very excited to be launching this series, as we feel it will provide us the opportunity to address important issues during a significant year from a much different perspective and in much greater detail than the mainstream media is likely to discuss.

You can expect to see a lot of substantive political and policy analysis being put forth via the series in the coming weeks and months, but like I said earlier — one thing you definitely won’t see is bias towards one particular candidate (though our posts will certainly contain links to articles from other outlets that may or may not be biased, because we feel it is important to provide a survey of what others are saying on the topic). Help us make the series even better by letting us know what topics or specific policy areas you would like to see explored – we’ll do our best to incorporate your feedback into upcoming installments.

We’ll be back with our first full installment of the series in the next few weeks, but in the meantime, we’ve rounded up some related articles we think are worth reading:

• CNN takes a look at claims of Medicare fraud being made against Mitt Romney by a pro-Newt Gingrich super PAC
• NPR explores “Romney’s unlikely and persuasive defense of the ‘Individual Mandate’”
• WaPo discusses Rick Santorum’s position on abortion in the context of his personal experiences

CMS Administrator Marilyn Tavenner addressing Care Innovations Summit attendees. Image courtesy of Kaiser Health News.

“I think we would all agree that these are not ordinary times, that this is not an ordinary conference, nor is it an ordinary time in health care,” commented Centers for Medicare & Medicaid Services (CMS) Administrator Marilyn Tavenner, in her address at the first ever Care Innovations Summit Thursday. In saying so, Tavenner captured not only the essence of the problems facing our nation’s health care system and the reason that over a thousand national thought leaders, senior government officials and industry experts had gathered, but also inspiring attendees with the idea that, by being there, they had the opportunity to be a part of the solution.

Driving the day at the Care Innovations Summit, which was hosted by the Center for Medicare and Medicaid Innovation (CMMI), Health Affairs and the West Wireless Health Institute, was the notion that American innovation could solve any problem, and the thousand-plus attendees were the innovators to solve this one. Emphasizing CMMI’s founding mission of better health, better care and lower costs, speakers across sectors, industries and areas of expertise continued to echo each other’s cries that it was all possible, if people began collaborating and innovating across fields.

Even before HHS Chief Technology Officer Todd Park compared data to rocket fuel, the Summit was beginning to sound like President Kennedy’s speech to Congress announcing the Space Race. In fact, the addresses and panels were broken up by “Ignite Talks” — wherein private-sector stakeholders presented problems and issued challenges to attendees and to entrepreneurs across the country, offering not only prizes, but implementation funding for the best solutions (you can see a list with links to descriptions of the various challenges issued here).

Park best captured the sentiment of the Summit, saying, “There is no problem that Americans can’t invent themselves out of…Transformation driven by a tide of grassroots innovation mojo has already begun.”

While this sentiment and attitude towards repairing and revitalizing our nation’s health care system certainly drove the day, it is not new, nor is it exclusive to CMMI. In fact, it echoes many of the themes that motivated us to launch the Health in Place™ (HIP) initiative last month. The concept of HIP is built around the idea that, thanks to wireless communications and emerging technologies, our homes are more than ju

st houses, our offices are more than just workplaces, our schools are more than just places of learning and our cars are more than just modes of transportation — and that, for this facet of 21st century health care to achieve its full potential, a number of public policy issues are involved, cutting across multiple disciplines from health care regulations and benefit structures to tax policy and technology incentives. HIP aims to connect the dots between industries, inspire innovation and drive policy changes that accomplish CMMI’s goals of better health, better care and lower costs while simplifying things in the process.

With all of this collaboration and innovative thinking, there is no doubt that this is an exciting time in health care, but as Don Casey expressed in his closing remarks at the Summit, there are some significant obstacles to overcome to get the rockets to the moon. “I think a lot of people are skeptical about two things,” Casey said, “the American economy and do we have the ingenuity to get this stuff done, and can we actually engineer a jailbreak for health care.”

Are you planning to take part in any of the innovation challenges issued? Do you think cross-industry collaboration is really possible? And, what do you think we need to do in order to break down the barriers Casey and others at the Summit alluded to?

The following is a guest post by Wendy Lynch, PhD the Director of the Altarum Center for Consumer Choice in Health Care. It was originally posted on the Altarum Institute’s Health Policy Forum.

By Wendy Lynch. There is a massive untapped resource in health care: consumers. Like a sleeping giant, unaware of its size and power, consumers have yet to realize what effect they could have on the system simply by asking questions or making choices. It’s not certain when, or if, consumers will awaken.

Consider this finding from our recent online survey of consumer opinions (1). The survey asked a national sample of about 3,000 employed individuals about where they get health information and how they use it. Only half of all respondents ever remember a doctor offering them multiple treatment options from which they could choose. Let’s remember the evidence: individuals who participate in medical decisions have better outcomes, better recovery, lower costs and higher satisfaction than those who don’t (2). Against this backdrop combined with national agencies promoting shared decision making with their “Questions are the Answer” campaign (3), and the new Physician Ethics Manual (4) insisting that the patient should be the primary decision maker about options, this answer is disturbing. But not surprising.

The subtle distinction is this: consumers remain recipients of care rather than participants in care. Sitting in an examination room, waiting for a doctor, possibly half-naked, not feeling well, patients are more inclined to say “ok, whatever you say” than “tell me what my options are.”

Despite huge advances, the environment is still not conducive to active participation. For most consumers, the information revolution in health care has not yet arrived. By and large, most consumers still get their recommendations from friends and family and don’t spend much time or energy making comparisons. We surveyed and interviewed consumers about where they get their information, how much they know about price and quality, and what would make them choose a different provider. What we learned tells us a lot about the ways consumers are and—perhaps more importantly—are not actively involved in care decisions and what factors get them more involved.

Our observations do confirm the obvious: there is no such thing as a “typical” consumer. Opinions vary dramatically on everything from desired control over decisions, satisfaction with care, use of information, and loyalty to a specific provider. Consumers’ level of health literacy also varies. We conducted random interviews of “people on the street” about health care topics to hear what typical responses sound like. One look at these video interviews asking about price (5) or what quality means (6) reminds us just how unique each person’s perceptions and preferences can be. Their feedback also reveals how much our own experiences shape our views and our decisions about care.

The results also expose gaps between what consumers suggest they want and what actually happens. They tell us that the health care landscape is full of contradictions. Here are some examples:

• Most consumers want to play an active role in their health care decisions, but few are confident they can find information to select better quality or lower prices.
• Most say they would be comfortable asking about the price of care, but fewer than half have actually done so.
• Consumers agree that the quality of care varies across providers, but a minority have actually compared quality.
• When asked if they would switch providers to save money, the vast majority of consumers say they would, but, once again, very few have actually switched for that reason.
• Three-in-ten have experienced a medical error, but most still report they are satisfied with the care they get.

To the extent that we can generalize, these findings describe a population that often has interest in playing an active role in care and are willing to consider changing providers to save money and get better care. However, few take action to get information or make a choice based on what they learn. It is as though we are poised for a shift toward greater consumer involvement, but have not reached the tipping point.

Adding to the possibility that such a shift may occur in the future, the demographic attribute that was most associated with active information-seeking and choice making was age. More than one’s gender, marital status, region, or education, being younger made a person more likely to report higher use of online comparisons, greater desire to play an active role in care, and a greater interest in choosing different or better care options.

Besides the energy and curiosity of youth, there appears to be several contributing factors to why consumers often don’t take action:

• lack of confidence (few felt confident they could find better or less expensive care if they tried);
• discomfort with the role of a consumer (some were not comfortable asking their doctor about price);
• lack of experience (fewer than one-in-five had ever looked online for information); and 
• lack of motivation.

In the motivation category, financial incentives do matter. One of most striking findings was how much the amount of a consumer’s deductible influenced his or her likelihood of asking about the price of a service. For those with little or no deductible, about 35 percent had ever asked about the price of care; of those with a high deductible, over 60 percent had asked. When we combined all these factors in a model, we could predict who would ask about the price of care. For an older, lower-income person with a low deductible who feels uncomfortable asking the doctor about price, 15 percent would ask. For a young, highly paid person with a high deductible who feels comfortable asking, 75 percent would ask.

Still, the general rule seems to be a hypothetical desire to participate in one’s care, but limited actions to actually make that happen.

It’s difficult to predict which factors and messages are most likely to prompt widespread participation in care, or shift the norm from expecting answers to expecting options. Will it slowly occur in parallel to the observed generational difference in using mobile technology? Will it happen sooner as the wave of baby boomers demand better service in the face of declining health? Or will there come a point where care is sufficiently expensive for consumers and information sufficiently accessible that individuals realize they can choose a better, safer, or less expensive option right now, and do so?  We don’t know.

But, whether it happens sooner or later, slowly or quickly, it does seem to be the direction we’re headed.
 

References

1. Lynch, W. D., & Smith, B. (2011, fall). Altarum Institute survey of consumer health care opinions. Retrieved from http://www.altarum.org/files/imce/CCCHC_Survey_Extended_Report_123011.pdf.
2. Lynch, W. D. (2011, September 27).  Why advocate for consumer choice in health care? Retrieved from http://healthpolicyforum.org/post/why-advocate-consumer-choice-health-care.
3. Agency for Healthcare Research and Quality. Questions are the answer: Your health depends on good communication. Retrieved from http://www.ahrq.gov/questions/.
4. Emanuel, E. J. (2012, January 3). Review of the American College of Physicians ethics manual, 6th ed. Annals of Internal Medicine, 156(1 Pt 1), 56–57. Retrieved from http://www.annals.org/content/156/1_Part_1/56.extract.
5. Altarum Institute Center for Consumer Choice in Health Care. (2011, December 13). Care is costly. Retrieved from http://www.youtube.com/watch?v=c4E-SifFrh0.
6. Altarum Institute Center for Consumer Choice in Health Care. (2011, December 13). Considering care. Retrieved from http://www.youtube.com/user/AltarumInstitute?feature=mhee#p/c/4/2gARz-BUAso.

All postings to the Health Policy Forum (whether from employees or those outside the Institute) represent the views of the individual authors and/or organizations and do not necessarily represent the position, interests, strategy, or opinions of Altarum Institute. Altarum is a nonprofit, nonpartisan organization. No posting should be considered an endorsement by Altarum of individual candidates, political parties, opinions, or policy positions.

If you chose to partake in what HuffPo referred to yesterday as “ your country’s empty displays of patriotic kitsch” — aka a State of the Union Drinking Game — last night, I certainly hope health care wasn’t one of your buzzwords.

President Obama delivered his 4^th State of the Union (SOTU) address to Congress last night, outlining his goals and his priorities for the nation in the coming year, and – as Sarah Kliff from the Washington Post’s WonkBlog put it  – “For health policy wonks, Tuesday night’s State of the Union speech wasn’t a thriller.”

In fact, in his nearly 70-minute, 7,000 word address, “President Obama mentioned Medicare and Medicaid… once. ‘Health care’ got two shout-outs. The Affordable Care Act? Not even a name-check,” (per Kliff).

To think of it another way, consider how Daily Briefing editor Dan Diamond broke it down — the president spent 44 words on health reform, accounting for 0.6% of the total speech.

As Politico pointed out, “Obama spent so little time on the [health reform] law that he didn’t even acknowledge an audience member the White House had brought to the speech — a cancer survivor who could have been an example of someone with a pre-existing condition who was helped by the law.”

The White House had announced earlier Tuesday that this young man, Adam Rapp, would be sitting in the first lady’s box. Rapp was diagnosed with testicular cancer on his 23^rd birthday, the same day that he would have lost health insurance coverage were it not for the Affordable Care Act (per CBS) – a potentially powerful testament touting the impact of ACA, and yet one that went unmentioned.

All of this is more staggering when you consider what a departure it represents from years past.

Medscape Medical News reports that, “Obama mentioned either “healthcare” or “health insurance” only 3 times, compared to 6 references in 2011 and 10 in 2010.”

The California Healthline blog lays it out a bit differently, explaining that, “Two years ago, the president spoke for several minutes — a total of 570 words — in urging Congress to pass the Affordable Care Act. Last night, Obama devoted just 44 words to his health reforms — never once touting the law’s actual impact, like 2.5 million young Americans gaining coverage through the ACA. In comparison, the president spent more than 130 words on his renewed cause of streamlining the government.”

And for you visual learners and/or infographics enthusiasts like myself out there, Dan Diamond tweeted this graphic a few hours ago, which I think best serves to drive the point home.

Wondering what Obama spent 70 commercial-free minutes talking about, then? According to the Washington Post, the economy mostly. Check out WaPo’s interactive infographic breaking down the speech by time spent/mentions per subject, and how this year’s spread compares to his previous SOTUs, here.

Meanwhile, the GOP rebuttal, delivered by Indiana Gov. Mitch Daniels, was only marginally better to us health wonks – at least for our interest’s sake. While it steered clear of “repeal and replace,” it did echo Rep. Paul Ryan’s pitch for an overhaul of entitlement programs.

“Medicare and Social Security have served us well, and that must continue. But after half and three-quarters of a century respectively, it’s not surprising that they need some repairs,” Daniels said. “We can preserve them unchanged and untouched for those now in or near retirement, but we must fashion a new, affordable safety net so future Americans are protected, too.”

No one would deny that the SOTU, above all, is an act of political theater. But were there even more theatrics occurring last night than usual? Many Beltway insiders have seemed to indicate this, saying that the SOTU was not only a list of goals for the year, but also, as Kliff put it, “an opening campaign gambit.”

If that is the case, it raises some interesting questions about what we can expect to hear in the fall. After all, as The Hill’s Healthwatch blog pointed out, “Although Democrats insist that Obama will be able to campaign on the healthcare law, it was almost entirely absent from a speech that helped establish the themes and frames of his reelection campaign.”

Just because the president seems to be steering the narrative away from health care so far doesn’t mean it won’t be issue in the upcoming presidential election. Odds are that the Republican nominee – whoever it turns out he (or she… hey, you never know!) may be – will want to discuss health reform, as it has certainly been a hot topic on the campaign trail.

How important of an issue do you think health reform will be in the upcoming election? Will a candidate’s position on health reform and the Affordable Care Act impact your decision to support him or her? Tell us your thoughts in the Comments section below!

Millions of Americans disapprove of the Affordable Care Act without understanding what the act aims to accomplish or how it works.  Dr. Jonathan Gruber’s book “Health Care Reform:  What It Is, Why It’s Necessary, How It Works” breaks down the individual components of the act in order to give Americans a greater understanding of what all it includes and how its provisions will affect their daily lives.  Gruber discussed the book, ACA and the future of health care reform in the United States with an audience at Disruptive Women in Washington, DC last night.

Continue reading here…

For more information on the event click here. We have reached capacity, but will be tweeting from the event so follow disruptivewomen for all the latest. Also, check back tomorrow for a post summarizing the night’s event.

The event will feature his new book: Health Care Reform: What It Is, Why It’s Necessary, How It Works.

By Michelle Andrews. Health care reform is no laughing matter, but MIT economist Jonathan Gruber’s new comic book on the subject aims to communicate some pretty complicated policy details in a way that, if not exactly side-splitting, is at least engaging.

In Health Care Reform: What It Is, Why It’s Necessary, How It Works, Gruber steps into the pages of a comic book to guide readers through many of the major elements of the law, including the individual mandate to buy insurance, the health insurance exchanges where people will be able to buy coverage starting in 2014 and how the law tackles controlling health care costs.

He ought to know. Gruber helped develop the Massachusetts health overhaul law and advised the Obama administration on the federal version.

Gruber says he was eager to write a book on the federal law because he believes people don’t like the concept of the overhaul because they don’t understand what’s in it. He points to polling that shows the public endorsing individual aspects of the law.

But the decision to do this in a comic-book style was his publisher’s. “At first, I wasn’t enthusiastic,” Gruber says. “I didn’t think it would be that effective. But the publisher said they had done a graphic novel about the 9/11 report. My son likes graphic novels, he’s 17. He said it’s a great opportunity, it’s a great medium. When you’re on a plane and they want to teach you what to do in case of accident, they hand you a graphic. I think it was the right call.”

Although the book is chockablock with optimistic predictions about what will happen under the new law, the chapter on cost control takes a decidedly more cautious tone. Noting that it was politically impossible for the new law to include provisions that could be guaranteed to “bend the cost curve” and control health care costs, Gruber’s character says the law took the best ideas out there about what might work and wrote them all into the bill.

He’s referring, for example, to provisions under which pricey health insurance plans, often called Cadillac health plans, will begin to be taxed in 2018, and to comparative effectiveness research to evaluate whether expensive health care treatments are actually more effective than cheaper ones.

As the title of his book suggests, Gruber is clearly an advocate for the law. But, he says, “I wanted to be intellectually honest. I believe that cost control is too hard for us to know what to do right now.” He cites two hurdles that must be overcome related to cost control: scientific, meaning we don’t know what works, and political, meaning we can’t always predict what will fly.

“I want to explain to that set of voters and readers who are really critical of this bill because it doesn’t do enough on cost contol that that is really an unfair criticism,” says Gruber. “We’re not really at a place where we could address that problem.”

“If we are going to prevent the projected escalation in chronic illness, which threatens to overwhelm our health care system, we need to develop new and better ways to elevate the health of our fellow citizens. The good news is that the next frontier in consumer health and well-being is right on our doorstep – literally,” said Robin Strongin, Creator of the Disruptive Women in Health Care blog and HIP. “We crafted this new initiative to advance the next wave in consumer health and well-being, bringing the best of health care to the places where we spend virtually every hour of every day.”

This project will be unique, not only in its vision of 21st century health and wellness, but also in its scope and composition of experts supporting this new direction. It will involve leaders from health care, technology, telecommunications, housing, travel and other sectors that will have a stake in the success of this exciting endeavor.

The concept of Health In Place™ is built around the idea that our homes are more than just houses, our offices are more than just workplaces, our schools are more than just places of learning, and even our cars are more than just modes of transportation. Thanks to wireless communications and emerging technologies, each of these venues has become potential health and wellness centers. No matter where we are or what we’re doing, we can protect and enhance our well-being.

For this facet of 21st century health care to achieve its full potential – for more Americans to have the tools to link to their caregivers, to protect against illness and monitor their well-being – a number of public policy issues are involved, cutting across multiple disciplines from health care regulations and benefit structures to tax policy to technology incentives.

HIP aims to connect the dots between industries, inspire innovation and drive policy changes that improve health outside of the Affordable Care Act.

Large, industry leaders like Philips Healthcare and UnitedHealthcare have gotten behind the idea of HIP.

“Philips is on the forefront of health care delivery—that’s why participating in a concept like Health in Place is a natural fit,” states Deb Citrin, Senior Director of Strategy and Business Development, Home Monitoring, for Philips Healthcare. “With experience in both the hospital and home settings, Philips understands that health care is evolving and we need to evolve with it by expanding care whenever, and wherever, people need it.”

For more on Health In Place™, read mHimss’ Editor Eric Wicklund’s piece, ‘Health in Place’ initiative seeks mHealth ideas from…everyone.

The Disruptive Women in Health Care Blog
Proudly Presents

A Health Reform Discussion
By
MIT Health Economist Dr. Jonathan Gruber

Featuring his new book:
Health Care Reform:
What It Is, Why It’s Necessary, How It Works

Please join us for a discussion, Q&A session, and book signing

There is no cost to attend.  All guests will receive a copy of Dr. Gruber’s book

RSVP by Friday, January 13, 2012

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For me, November’s Man of the Month needs no introduction (… because he is my father). For the rest of you for whom he is not a genetic relation, here goes…

The Disruptive Women in Health Care team is pleased to introduce our November Man of the Month — Dr. Peter Ditto, Department Chair and Professor of Psychology and Social Behavior at University of California, Irvine and a leading authority on the psychology of advance medical directives and end of life decision making.

Dr. Ditto is best known for the series of studies he conducted examining key psychological assumptions underlying the effective use of advance medical directives, so much so that he was one of the few psychologists invited to participate in the 1993 Squam Lake conference convened to establish a national agenda for research on advance care planning. He is also a member of the Advisory Panel for the American Psychological Association’s Ad Hoc Committee on End-of-Life Issues.

I sat down with Dr. Ditto (who I more commonly refer to as Dad) to learn more about the psychological aspects of end of life decision making, his research on the subject and more.

You often use the Terri Schiavo case  as an example of the decision making challenges families who must make choices about the use of life-sustaining medical treatment for an incapacitated loved one face. In what ways does the Schiavo case encompass your “traditional” case? In what ways does it diverge?

In many ways, the Terri Schiavo case is not at all typical.  She was a young woman who was struck down unexpectedly in her 20’s. Most end-of-life decision making occurs with elderly people, often with a lot of advance warning that a situation is approaching where the person is going to lose decision making capacity. It is actually interesting that the cases that have most captured the public’s attention and most shaped law and policy on end-of-life decision making have involved these quite rare and unusual cases of young people left in persistent vegetative states (Schiavo, Karen Ann Quinlan, Nancy Cruzan). This is likely because these are cases where the issues are displayed most poignantly – a person who has lost the ability to speak for themselves, about whom everyone is uncertain what the incapacitated person would want done if they could speak, and where family members (and public opinion more broadly) have strong and differing opinions about what is the morally appropriate course of action.

But it is important to point out that these are exactly the problems that occur writ small – in less dramatic and less poignant forms – in homes, hospitals and hospices every day in the US. It is typically older people who have become too sick to speak for themselves, have not completed a little will or conveyed their wishes in any way to their loved ones, and this uncertainty can easily lead to family conflict because people have differing beliefs about the person’s likelihood of recovery, and bring different moral views and emotional vulnerabilities to the situation.

You say that, while many think the presence of a living will would have negated what quickly disintegrated into an ugly situation for the Schiavo and Schindler families, it is not always that simple. What steps can people take to avoid (to the extent it is possible) leaving their loved ones in a similar situation?

In many ways, my scientific work on end-of-life decision making can be seen as a psychological critique of living wills. The problem with living wills isn’t the idea – it is a wonderful and noble concept to try to honor people’s wishes near the end of life by having them record those wishes while they are still able – it is the execution. Quite simply, it is just a really difficult situation to find oneself in, and there are no simple band aids that are going to fix it all up.

I remember during the height of the Terri Schiavo controversy watching an attorney on the Today Show saying that spending 15 minutes filling out a living will would have solved the whole thing. Nothing could be further from the truth. Our research identified a whole host of problems with this idea – people often complete living wills that are very vague (“no heroic measures”), people’s preferences of life-sustaining intervention change over time as people’s health waxes and wanes, and even a quality living will doesn’t necessarily communicate wishes in a way that helps your loved ones (what we refer to as surrogate decision makers) predict your wishes any more accurate than they can without having seen that living will (could give you a paper site if you want one).

The best advice I can give is to talk to your family about your end of life medical wishes. This is especially crucial if you develop a medical condition where one possible trajectory is that it might leave you unable to communicate. I really don’t believe it is cost-effective to try to develop policy and law to encourage every 20-year-old to write a living will or take other elaborate measures like that. It is so unlikely that a Schiavo-like incident will happen to them, and even if it does, the situation they are trying to make decisions about is so inconceivably different from their current situation as a healthy 20-something, that it just isn’t worth a major societal investment to encourage that level of planning [editorial note: forget 20-year-olds -- an AP article published this week suggests that 64% of baby boomers also feel this way]. But as one gets older, and especially if future incapacitation is one possible outcome, that is the time when talking with your loved ones and your physician about your wishes for end-of-life treatment make sense, and it is a time when it all becomes psychological “real” enough to allow someone to really make reasonable wishes.

Let me also say though that completing a living will is not sufficient all by itself, but it helpful to think of it as a means rather than an end. The key is to make completing a living will the process that stimulates you to think about what you would really want – for both yourself and your loved ones – if you lost the ability to speak for yourself. And, most importantly, to make this an opportunity to talk to your loved ones – your spouse, children, whoever – and try to convey to them the core values and feelings that motivate your wishes.

Do you have any advice for families who find themselves in this situation but whose loved one did not leave a living will? Is there a precedent that should be used to guide decision-making in that case?

The advice I always give people is to simply try your best to take your own feelings out of the situation, and try to make the decision for your loved one that they would make for themselves if they were able. This is both something that I think makes good common sense, and if precisely consistent with the fundamental ethical principles that have always been held to guide end-of-life decision making.

That is, the goal of living wills and other forms of advance directives has always been to maintain an incapacitated person’s personal autonomy, their right to self-determination that is enshrined in the Constitution. But how can a person in a coma make decisions for themselves? They can’t directly, but if you make the decisions for them that they would have made for themselves, they your judgment can be substituted for theirs (hence the technical term substituted judgment) and it is as if they are making the decision for themselves.

It is a beautiful, elegant idea – especially if your substituted judgments are informed by documents or discussions completed prior to the person losing their decision making capacity – and as I said before it is terribly difficult to actually bring to fruition in real life. We are often not very good at predicting our loved ones wishes – think about the last time you totally miscalculated on a birthday or anniversary gift for your spouse – and complicated medical situations flooded with emotion are not likely to maximize the accuracy of your predictions.

But another finding from our research is that many, perhaps most people are more concerned with who makes judgments for them than in trying to micromanage the judgments that will be made. Many people say that the most important factor for them is that they want someone they trust to make judgments for them. They are happy in fact to let those people make judgments in real time, with all of the information available to them, and thus are more interested in appointing a trusted loved one as a designated surrogate rather than completing a detailed living will where they feel like they are ill-equipped to address specific and inherently probabilistic medical decisions.

This is why I think policy should be focused on encouraging opening up dialogue between physicians, patients and their loved ones – and encouraging the completion of durable powers of attorney for health care (legally appointing a surrogate/proxy) rather than long, complicated advance directive documents.  The focus should be on discussion not documents, and documents are most useful as a stimulus to dialogue.

Obviously the cost of care is a factor in any medical situation no one wants their family to become destitute as a result of paying for their care. How do you think changes to Medicare/Medicaid and long-term care [i.e. the repeal of the CLASS Act] might affect the public’s end-of-life wishes?

I will say upfront that I don’t know a lot about specific policy details, but regardless, here is what I do know.  No one wants to mix up end-of-life decisions with financial considerations. It is not about saving money, it is about allowing people to make their own decisions about prolonging their own lives versus letting go and not prolonging the process of dying. And versus someone else making that decision for them – whether it is ending their life prematurely, or the problem that most people really care about – which is continuing treatment past the point that it makes sense and leaves people suffering or losing their essential dignity. That is why end-of-life decision making works best in the context of a situation where medical care costs are irrelevant. It is only when people know they can get all the care they need, that they will be comfortable making decisions to forgo that care. It is important the people are provided the ability to get the care they need at the end-of-life, and that physicians are incentivized to discuss end-of-life concerns issues with their patients – not to counsel them to check out early, but to help that make the end-of-life as dignified and free of unnecessary suffering as it can be.

The ironic thing about all this is that virtually every analysis shows that the key problem in end-of-life care is overly aggressive treatment that has little chance of success and that the patients likely would not want if we could ask them. So if people are allowed to make their own decisions, and we invest resources in helping them do that in the most effective possible way, it actually would cut the exorbitant costs of end-of-life care in a natural, humane way that honors every American’s right to make their own choices about their own lives.

Thank you Dr. Ditto, we appreciate you taking the time to discuss this important element of the End of Life with us.

What do you think about living wills and advance directives? Do you and/or your loved ones have them? Do you know what your loved ones would want, should they [heaven forbid] be unable to speak for themselves? Tell us in the comment section below!

Most people are dissatisfied with the U.S. health system overall, with 27% of U.S. adults rating the system as “poor” and 29% giving a rating of “fair.”

High costs may be at the root of peoples’ dissatisfaction with the U.S. health system. Only 18% of people are satisfied with the cost of health insurance; only 15% satisfied with the cost of health services not covered by insurance.

EBRI looked into peoples’ health-consumer behaviors, detailed in the chart. Most people who have visited doctors ask them to explain why a test is needed, as well as inquire about risks of treatments and medications and their success rates. Nearly one-half of people ask about less costly treatment options often or always.

Consumers also adjust their health care utilization when facing higher health care costs:

• 74% of U.S. adults try to take better care of themselves
• 69% choose generic drugs when available
• 64% talk to the doctor more carefully about treatment options and costs
• 59% go to the doctor only for more serious conditions or symptoms
• 44% delay going to the doctor
• 36% switch to over-the-counter (OTC) drugs
• 34% look for cheaper health insurance
• 31% look for cheaper health providers
• 25% skip medication doses or don’t fill prescriptions.

Health care costs are eating into peoples’ savings contributions: 56% of people say they have decreased contributions to other savings due to health cost increases, and 33% have difficulty paying for other bills beyond health care.

The Health Confidence Survey interviewed 1,001 U.S. adults over age 21 in May and June 2011 via telephone.

Health Populi’s Hot Points: The future of health care in the U.S. feels very uncertain to the nation’s health citizens: “confidence about the health care system decreases as Americans look to the future,” EBRI found. 57% of Americans say they’re confident about their ability to get treatment they need today. However, only 30% of people are confident they’ll be able to get needed treatment over the next 10 years. Only 20% are confident they’ll get necessary treatment when they’re eligible for Medicare.

In the immediate term, with health consumers concerned about costs, they’re responding by seeking information about their providers, treatments and costs, shown in the second chart. While “all” of the information people seek about health care isn’t available for any of the types of information sought, most people are finding “some” of the information they seek. The most popular kind of information sought is comparing treatments’ disadvantages and advantages, sought by 54% of U.S. adult. However, only 1 in 4 people found all of the information they sought on comparisons. 31% of people look for the full costs of different treatments: only 23% of people found all of this information.

Consumer empowerment requires information transparency. As health citizens in the U.S. continue to take on more financial responsibility for health, they appear to be trying to take that role of health “consumer” seriously. To do that requires information that’s available in accessible, understandable forms via media channels and platforms people want to use. While there’s a proliferation of these services emerging – Castlight Health, Change:healthcare, and QuickenHealth, among them — most health consumers aren’t aware of or accessing these services yet.

It’s a long, winding and bumpy ride on the road to consumers’ empowerment in health. It will get bumpier without health plan sponsors’ linking their enrollees to services that will truly empower them to make sound decisions on how to use the health system.

Originally posted on Health Populi on October 10th.

The newspaper listed five ways to “squeeze” Medicare spending and then discussed the political arguments for and against each.  Some, such as gradually raising the Medicare eligibility age from 65 to 67 and requiring higher-income beneficiaries to pay full premiums for their Medicare Part B (physician services) and Part D (prescription drug) coverage are recommendations that the Healthcare Leadership Council has made to the congressional deficit reduction “super committee.”

But, in a number of ways, the USA Today article missed the mark:

In discussing cutbacks to Medicare providers, including physicians, hospitals and pharmaceutical companies, the newspaper expanded on the likelihood that those health sectors would strenuously argue against any cuts, but there was no reporting on the impact those reductions would have upon beneficiaries.

This is a pet peeve of mine, as I’ve noted previously.  Too often, both politicians and commentators speak of the value of cutting providers instead of patients, obscuring the fact that reduced payments to providers has an impact on both the accessibility and quality of healthcare.  If, as the Obama Administration has proposed, pharmaceutical companies are required to send over $100 billion in rebates back to the government, can there be any other outcome besides higher prices for consumers and less money available for research and development of new innovative medicines?

Relating to another sector, there was an interesting discussion on the KevinMD blog yesterday that raised legitimate questions over whether cutting physicians’ incomes will make a dent in overall healthcare spending.

• Aside from a quick reference to the controversy over Congressman Paul Ryan’s (R-WI), USA Today quickly dismissed the idea of giving Medicare beneficiaries greater consumer choice among competing health plans, citing one study that showed it would increase out-of-pocket costs.

The concept deserves more consideration than that.  If, as the Healthcare Leadership Council and experts like former Clinton budget director Alice Rivlin has proposed, you give beneficiaries the choice of staying in conventional fee-for-service Medicare or moving into a new competitive Medicare Exchange, both health plans and providers would be compelled to find innovative ways to reduce costs while maintaining high quality and value.  This is a pro-consumer direction that deserved more than a couple of sentences in a major story on Medicare costs.

• Where was any reference in the USA Today story to medical liability reform?  Fixing our nation’s broken medical malpractice system won’t, by itself, fix Medicare’s long-term fiscal problems, but reducing the practice of defensive medicine to protect against exposure to litigation will certainly generate meaningful savings.Or

Originally posted on Prognosis Blog on October 4th.

I know, I know it’s October…but hey, we are disruptive so celebrating on the exact day seems so well, ordinary.  And the past three years have been anything but ordinary.  We all had something to say about the new health reform debate and ultimate passage.  We still have much to say about the new law, as well as a multitude of other topics.

One area that I have been thinking a lot about is the exploding area of mhealth (mobile health), remote monitoring, and telehealth.  Technology alone is not the answer of course.  But technology, coupled with innovative care delivery models (think health reform), and patients, caregivers and clinicians more comfortable with smartphones, apps, data sharing and online connectivity have all contributed to a new framework of health and wellness.  Aging in Place, staying connected, eICUs, PHRs and EHRs.  Exciting stuff.

But, like most solutions in health care, success must look beyond the health sector.  Here’s what I mean by that: staying healthy can’t just take place in a health setting or even in your home.  Maintaining your health and wellness or managing your chronic disease or disability requires a connection where ever you are — in other words, Health In Place.  Young people with epilepsy and diabetes still attend school, go on vacation and use public transportation.  Elderly individuals aging in place still travel to visit gradnchildren. And, adults maintaining exercise and nutrition regimens who travel for work need to stay connected to maintain wellness.  The Health In Place concept takes this broad view and will be bringing together thought leaders from not only the health field, but the telecom, travel, automobile and real estate sectors as well. 

The organizers of the 2011 mHealth Summit were so taken with this idea that they invited Disruptive Women to launch the Health In Place or HIP initiative with a reception on December 6th–we couldn’t be more thrilled or more flattered. So SAVE THE DATE:

Health In Place (HIP)™ — Disruptive Women in Health Care is Launching a New Initiative

Tuesday, December 6, 2011, 5:00–7:00 PM
Location: Pose Ultra Lounge & Nightclub–at the Gaylord Hotel in National Harbor (Washington DC)

Overview: The concept of Health In Place™ is built around the idea that our homes are more than just homes, our offices are more than just workplaces, our schools are more than just places of learning, and even our cars are more than just modes of transportation. Thanks to wireless communications and emerging technologies, each of these venues has become potential health and wellness centers or HIP. No matter where we are or what we’re doing, we can be protecting and enhancing our well-being. For this facet of 21st century health care to achieve its full potential — for more Americans to have the tools to link to their caregivers, to protect against and manage illness, while monitoring their well-being — a number of public policy issues are involved, cutting across multiple disciplines from health care regulations and benefit structures to tax policy to technology incentives. That’s why Amplify Public Affairs and the Disruptive Women in Health Care® blog (along with our media partenr, The Hill) have formed the Health In Place™ Initiative — to bring together policymakers and change agents from multiple industries.

 Please join us as we unveil this new initiative.

 Speakers:

• Robin Strongin, President & CEO, Amplify Public Affairs & Creator, Disruptive Women in Health Care — Moderator
• John Marttila, President, Marttila Strategies (a national polling expert)
• John C. (Jack) Lewin, MD, Chief Executive Officer, American College of Cardiology
• Pamela Cipriano, PhD, RN, NEA-BC, FAAN, Professor, University of Virginia School of Nursing, Editor-in-Chief, American Nurse Today, 2010-11 Institute of Medicine Nurse Scholar-In-Residence (and a Disruptive Woman blogger)
• Halle Tecco, Founder & Managing Director of Rock Health (and a Disruptive Woman blogger)

Stay tuned for more information.  And by all means, please come out on December 6th and celebrate with us.

At three years of age, we are not only Disruptive, we are also HIP.

In Is the Foreclosure Crisis Making Us Sick? published by the National Bureau of Economic Research in August 2011, Janet Currie and Erdal Tekin find that the number of foreclosures in a community is associated with increases in medical visits for mental health (anxiety and suicide attempts), preventable conditions such as hypertension, and a long list of stress-related diseases.

Furthermore, more foreclosures in an area are most harmful on people age 20 to 64, and disproportionately impact African-Americans and Hispanics compared to whites.

The map shows the “heat index” for areas with the most home foreclosures: the redder, the higher the foreclosure rates in the state. Currie and Tekin focused on four of the hardest-hit foreclosure states: Arizona, California, Florida and New Jersey. They combined foreclosure data from 2005 to 2009 with data on ER visits and hospital discharges at the zip code level.

Health Populi’s Hot Points: Previous research has looked at the link between health and the house mortgage crisis, finding that unhealthful behaviors are often used to cope with stressful life events. Such negative coping behaviors include tobacco use, alcohol consumption, sleep dysregulation, and weight gain perhaps via decreased physical activity. For more on these impacts, see the 2009 essay in PLOS Medicine by Gary Bennett et. al. called, Will the Public’s Health Fall Victim to the Home Foreclosure Epidemic?

The health of a nation’s macroeconomy clearly impacts the health of the household’s microeconomy – not just of a parent but on children’s health, as well, according to Currie and Tekin.

This study connects the dots between personal finances and health, which is a connection that people make for themselves. The first Edelman Health Engagement Barometer identified that people define their health and wellness across several dimensions: physical health, mental health, appearance, and financial health.

This study raises many points for both health and economic policy which are inextricably linked. First is the rationale for universal health insurance coverage provides a health safety net for all health citizens, can help stem the negative impacts of unemployment in a community and the longer term downstream health costs that increase when conditions aren’t prevented and managed. Second is the importance of COBRA and unemployment insurance payments, the latter of which often can’t cover the former (see this post describing that financial disequilibrium).

Finally, the relationship between economic development and population health has been long documented. As the U.S. economy continues to lag — and the “recovery-less recovery” continues to continue — the public’s health will be in jeopardy, particularly in minority communities.

This scenario also reminds us of the connections between people that Christakis talks about…Health is Contagious, and vice versa.

Originally posted on Health Populi.

As with April’s narrowly-avoided government shutdown, pundits are all atwitter (figuratively and literally, as many seem to get special joy in posting their doomsday provocations in 140 characters or less) posting increasingly ugly “what if” scenarios and rumors. No doubt one day, a researcher will be reading the tweets of July 2011 (since all tweets are part of the official public record and documented in the Library of Congress) and come to the not-completely-unsubstantiated conclusion that mankind only narrowly averted total annihilation at the hands of some sort of Armageddon-like natural disaster (only to be corrected by a wiser researcher that there was a far greater threat to mankind in 2011 than natural disasters and that was Congress).

All joking aside, all the chatter led me to wonder – how would the various outcomes of the debt ceiling debate (yes, including defaulting) impact health care? Amongst all the speculating and posturing, despite the usual inclination of political reporters to relate everything back to the Affordable Care Act, I could find nary a mention of how a debt ceiling deal or even defaulting might impact health care [and the yet-to-be-implemented ACA provisions]. Until yesterday, that is, when Kaiser Health News first reported a document summarizing areas discussed by House and Senate negotiators at a debt ceiling meeting with Vice President Biden Monday had been leaked. As it turned out, this document was a spreadsheet identifying potential Medicare and Medicaid savings that could be included in a debt ceiling deal. In total, the list adds up to between $334 billion and $353 billion in savings over the next decade – including $100 billion in Medicaid cuts.

Want all the details? A PDF of the leaked spreadsheet can be viewed here: http://capsules.kaiserhealthnews.org/index.php/2011/07/list-of-potential-medicare-and-medicaid-cuts-stirs-washington/

With the tagline, “D-Think Your Way to Success,” The Disney Institute offers programs that help organizations apply Disney’s lessons in customer service, creativity and leadership to their own situations. In the case of the Healthcare Excellence program, Disney is looking to re-focus health care delivery beyond clinical outcomes toward the overall patient experience.

Health Populi’s Hot Points:   The book The Experience Economy, published in 1998, talked about the value of transformation for a consumer encounter with a business. In the case of health care, what could be more relevant than a transformational experience, either for people who are sick seeking treatment to get well, or for people who want to improve their health status?

I’ve often asked the question of medical device, IT and health providers, “What would Steve Jobs do? What would Disney do? What would Procter & Gamble do?” when it comes to developing user-focused health products and services. Now Disney believes it has the answer to that question.

Originally posted on Health Populi on July 5th.

The greatest regional variances by service type are for MRI scans of the brain, varying 747% between a low price of $425 in the Southwest to a high of $3,600 in the Southeast, based on an analysis from change: healthcare‘s Q2 2011 Healthcare Transparency Index.

USA Today reported on this study on June 30, 2011. Christopher Parks, founder of change:healthcare, pointed out that it’s not uncommon to find inter-regional differences of health prices. However, this is happening ”within a 20-mile radius in your own town,” Parks points out based on his firm’s research.

change:healthcare launched the Healthcare Transparency Index (HCTI) in Q4 2010 to analyze health claims data for various health care services and provide health care buyers with data about cost trends. The tool helps people identify savings opportunities for various health care products and services such as prescription drugs, dentistry, physician office visits, physical therapy, and imaging.

The methodology of the Index looked at 12 months of de-personalized demographics and claims information generated by 82,000 employees representing 152,000 lives from over 200 companies that change: healthcare serves.

Heath Populi’s Hot Points: The argument of whether people who get health care in the U.S. are “consumers” or not rages on, from Paul Krugman in the New York Times to a column in Fast Company published this week which talks about the demise of Google health.

change:healthcare’s data demonstrates that there are cost savings to be accrued to health citizens who shop around for digital imaging services. Whether we call these people ‘consumers’ or not, we as patients or caregivers are taking on more financial responsibility for our health care in the forms of premium sharing, co-payments and coinsurance; have more influence on clinical decision making with our physicians when it comes to prescription drug alternatives, therapies and procedures; and must care for aging parents and growing children. Having access to transparent, high-quality, current information on health care costs, quality, and availability — such as that offered by the Healthcare Transparency Index — will inform and aid us in better managing our own health and health care. A just-launched example of this is Robert Wood Johnson’s National Directory for Comparing Health Care Providers, which provides users with details of physician and hospital quality, costs and patient experience survey data.

Originially posted on Health Populi on June 30th.