Carol Schechter

The following is a guest post by Carol Schechter, a leader in the field of health communication and social marketing. You can follow Carol on twitter @carol_schechter.

Last week was a bad week for the Susan G. Komen Foundation. On Monday, they were still an iconic charity; the group that successfully put women’s health issues in the public eye and the group that forever changed our associations with the color pink from babies to breast cancer survivors.

On Tuesday, their world changed. On January 31, AP broke the story that Komen decided  to stop funding Planned Parenthood, allegedly because Planned Parenthood was under Congressional investigation.   Social networks erupted with the news, and the world started to learn a lot about the workings of the Foundation: that the Komen VP behind the defunding decision was  tea party Republican who had long been opposed to Planned Parenthood; that Komen also opposed stem cell research; that a significant amount of Komen funds went to law suits against other charities that dared to use the phrase “for the cure” in their campaigns; that the decision to defund Planned Parenthood wasn’t shared with Komen grass roots chapters until after the announcement; and that many of these chapters opposed the decision when they learned of it. Komen started back pedaling quickly, first stating the real reason for the decision was not the Congressional investigation, but was because Planned Parenthood didn’t offer mammograms as a direct service. Excuses kept coming, but the damage was done. By the end of the week Komen reversed its decision and said Planned Parenthood was once again eligible to apply for grants. Then they engaged their PR firm.

This is not a PR issue, however. I respect good PR, but PR can’t fix a flawed organization.  Komen is a huge corporation. Since 1982, they have spent more than 1.9 billion dollars on breast cancer research.  An organization of this size needs leadership, vision, values and good management. 

My message to Komen- please go back to basics. Who is in charge? What do you stand for? What is your mission and what are your values?  You have done so much good for women – please don’t insult us by hiding behind PR.  You can gain back the respect you once had, but only by honesty, self reflection and hard work. Women’s health needs a trusted organization. Please give breast cancer survivors the organization they deserve.

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 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!

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.

But there was another line in the blockbuster movie that moved me even more. I heard it and the heavens seemed to open. The light bulb came on.

Hilly Holbrook’s new maid is $75 short on one of the college tuitions for her twin sons and asks Hilly and her husband for a loan so she doesn’t have to choose which son should go to college. Doing the ‘Christian thing,’ Hilly refuses, “God does not give charity to those who are well and able.”

Twelve simple words from a fictional 1960’s character summed up our nation’s current political will regarding the poor. And allow me to condense this into just one word: selfishness.

We movie-goers were quick to see the bigotry in Hilly’s statement. The maid and her husband had been saving money from their meager wages for a long time and she wasn’t seeking a hand-out, but a loan she would pay off with her thankless labor. But I was also quick to see the hipocracy in those of us who identify ourselves as Christians regarding the poor–many like this maid are in temporarily tight spots by no fault of their own. I was convicted by the thought that a selfish Christian is just as much of an oxymoron as a Christian murderer.

We use the word Christian so loosely nowadays, especially in politics. Calling ourselves Christians is not just the politically sexy thing to do. It is bearing the responsibility to personify the totality of God’s word and value every stage of every life, even the poor. Perhaps our selfishness is rooted in fear, more specifically, fear of shortage. We are so afraid that assistance to the poor robs us, but the Bible is clear that it is better to give than to receive (Acts 20:35) and we will never lack giving to the poor (Proverbs 28:27). Now I’m not suggesting that Christians are obligated to give to any and everybody. We must be good stewards over what we’ve been blessed with and use wisdom, but we must never forget we have been blessed with what we are stewards over. None of it truly belongs to us.

What makes giving complicated is when the poor is undeserving for reasons we determine in our own minds. With the issue of Medicaid, for example, we are quick to point to the rare cases of system defrauders. But for every story of fraud, there are at least nine stories of genuine need.

The Institute of Medicine, the trusted, non-political council advising the nation on ways to improve health, recently released “The Healthcare Imperative Report” on how to lower health care costs and improve outcomes. The Institute thoroughly studied excess costs in our health care system and identified six domains of excess spending: unnecessary services, inefficiently delivered services, excess administrative costs, prices that are too high, missed prevention opportunities and fraud. Want to guess how much waste is due to fraud? Less than you think. Only 10 percent. And that figure includes fraud at the hands of payers, clinicians and patients, so patient fraud represents only a fraction of health care waste.

I got ticked off… Oh, pardon me… I was greatly disturbed this week while speaking with a cousin who attends one of Columbia, SC’s most prominent churches. After the August 5-6, SC Mission 2011: Midlands event that served more than 2,000 uninsured from around and outside the state, a water cooler conversation at the church included appalling accounts of some people in line for services using iPhones. The nerve of those beggars!

Thankfully, my cousin was quick and correct to point out that many of those in line were among the working poor. SC Mission 2010 in Greenville, SC, for example, drew 1,200 of the state’s underserved to the Carolina First Center. Forty-four percent were employed, tax-paying citizens. My co-worker even received a call from an area city councilman inquiring if his uninsured family of four (wife, two teenagers and himself) could come for services at the Midlands event at the Carolina Coliseum.

These are realities, but we citizens have made it too easy for our elected officials to turn a blind eye and deaf ear. In an attempt to heighten awareness of these realities to policy-makers, the South Carolina Hospital Association sent personal invitations to Mission 2011 to more than 400 elected officials in federal, state and local government. Guess how many showed up? Two. Republican SC House Representative Todd Atwater who also serves as President of the South Carolina Medical Association and volunteered at Mission, and Democratic SC House Representative Leon Howard. Two, I said! One Republican. One Democrat. Zero from the Tea Party. Zero Independents. Zero from local government. Zero from the federal government. Raise your index finger, then your middle finger. Two. They could have at least followed the lead of Columbia, SC Mayor Steve Benjamin who knew he’d be out of town. Mayor Benjamin marketed the event through e-mail and social media.

Maybe if more of our officials had seen the lines of men, women and children forming as early as 10 am the day before the Midlands event began, those camping on the concrete outside the Carolina Coliseum, and the countless people who were turned away due to maxed capacity, these and other social ills would not plague our community as much because policy-makers would be more prone to do the true ‘Christian thing’ and care.

“There is a better way – structural reforms that empower patients with greater choices and increase the role of competition in the health-care marketplace.” Rep. Paul Ryan (R-WI)August 3, 2011

The highly charged political debates about reforming American health care have provided tempting opportunities to rename the people who receive health services.  But because the impetus for this change has been prompted by cost and quality concerns of health care payers, researchers and policy experts rather than emanating from us out of our own needs, some odd words have been called into service.  Two phrases commonly used to describe us convey meanings that mischaracterize our experiences and undervalue our needs: “empowered patient” and “health care consumer.”

As one who has done serious time as a patient and who spends serious time listening to talks and reading the literature that use these words to describe us, I ask you to reconsider their use.

“Empowered patient” The fabrication of the verb “to empower” from the noun “power” was used in the civil rights and community development movements to describe a benevolent bestowal of influence on disenfranchised individuals and groups by those who had previously excluded them.  When used in relation to health care, the word perpetuates the idea that we are passive entities, waiting to be gratefully endowed by our clinician or a new policy with the right and ability to act on our own behalf.  Our “empowerment” takes place not as a result of our own will or preference, but rather because we have been given permission to act in a different way by some external agent.

This word is often deployed as an egalitarian euphemism that cleverly disguises cost- and responsibility-shifting from professionals and institutions onto us, for whom fulfilling those responsibilities can be a heavy burden.  For example, because the American health care system lacks a functioning electronic medical record system, we have become “empowered” by HIPAA to carry our own health records and tests results from doctor to doctor when we are ill.  Similarly, we are “empowered” to be cost conscious and shop for less-expensive providers and services when we are laboring under the weight of our $5,000 deductible.  We are “empowered” by the note on the name badge to ask every employee who walks into our hospital rooms whether he or she has washed his or her hands.

Used to describe patients, this word does not connote new power – rather, it signifies new responsibilities.  I may not like these new responsibilities and I may struggle to fulfill them, but I would rather know that I must do so if I am going to benefit from my care than to be lead to believe these new responsibilities are a choice or a gift that I have an option to claim.

How about if you call me an active patient, or an informed or engaged or knowledgeable one?

“Health Care Consumer” In focus group after focus group, we have said we don’t want to be called health care “consumers.”  There is a long tradition of explaining why health care is not a market commodity.  In their 2008 article “The Patient Life: Can Consumers Direct Health Care?,” Carl Schneider and Mark Hall provide a data-filled analysis of how current conditions in American health care simply do not support the standard characteristics of consumerism.  For example, good choices – indeed any choices of health plan or primary care clinician — do not exist for many of us.  Comparative cost and quality information is not available on almost any of our relevant choices.  And many doctors resist discussing issues of quality and cost with us: They often have limited knowledge about the wild variation in health care pricing and little meaningful information about the quality of the care they, their own clinic or their hospital delivers.

Calling us “consumers” perpetuates the notion that by the mere act of giving us some information – however spotty –  we will be transformed into making objective, informed judgments about our care when it is simply impossible to do so right now.  It allows those who use this term to convince themselves that because this is a role we easily fill when purchasing lettuce and flat-screen TVs, finding the right health care should be no different.  And it fuels the underlying belief that we will naturally seek out high-value care and thus influence the health care marketplace … and in doing so exert demand that solves the problems of cost and quality that have long proved resistant to the efforts of powerful actors like the government, private payers and health professional groups.

How about dropping the commercial language and calling us oh, say, “people” or “employees?”  Or if some descriptor is needed, how about taking a clue from the Whole Person effort of the 80’s, which brought us “people with AIDs” instead of AIDS victims.  “People with Medicaid” or “people without insurance” would work.

The words “empowered patient” and “health care consumer” are currently being used as subterfuge to mask an agenda that shifts risk, costs and responsibilities to patients and families.  Their use diminishes our individuality, our autonomy and our dignity.  And the underlying assumption those words share is that performing the often complex, unfamiliar tasks of finding and benefitting from our health care is a matter of having enough will and sturdy bootstraps – and that it is our own fault if we don’t succeed.

Don’t get me wrong here: I am pleased with the growing recognition that we have a vital role to play in improving the effectiveness of our health care.  Some new resources are now available to help us act on our own behalf to find safe, high quality care and make the most of it. And I support the well-intentioned efforts of those working to ensure that care will become more responsive to our needs over time.

The glib use of these words and phrases by those in powerful positions in health care signals underlying attitudes and beliefs about us that are inconsistent with what is known about the difficulty of changing health-related behavior and a true disregard for the complexity and magnitude of the challenges we face in finding good care and making the most of it.  These are not simple tasks, and the help we need to do them is neither simple nor cheap.  Throwing a few bits of information and big hunks of risk in our direction and describing us with shiny new words will not do the trick.

Health care spending will be a target of efforts to cut the federal deficit. The best way to reduce unnecessary spending, Dr. Davis says, is to make sure everyone gets the right care, using new provider payment mechanisms such as bundled payment and value-based purchasing. In this video, Dr. Davis describes some of these payment reforms and lays out the case for greater use of comparative effectiveness research to learn “what really works.”

This video is part of a series produced by the Alliance and supported by the Robert Wood Johnson Foundation.

A bit of Hollywood silly escapism?  No doubt.  But, you can say this for President Dave and his fictional cabinet.  At least they approached the budget process with a constructive purpose and vision.

We can only hope that the same holds true for the supercommittee, the panel of 12 Senators and Representatives created as part of the cobbled-together solution to the debt ceiling debacle.  By Thanksgiving, the supercommittee must come up with $1.5 trillion in deficit reduction that must then be ratified by the full Congress no later than December 23.

There’s no question that health care will play a key role in those calculations.  When it comes to finding ways to reduce federal deficits, health spending is the rapidly growing elephant in the room. 

And that leads to genuine concerns about this process.  Already, policymakers are bouncing around ideas to extract more money from the healthcare system and tighten belts further.  Medicare provider payment cuts.  New home health care co-pays and budget reductions.  Mandated Medicare Part D prescription drug rebates.  The upshot of each of these steps will be a health care system that’s more expensive, less accessible, but not necessarily better.

It’s important to note, though, that the supercommittee isn’t limited to only using the subtract key on the calculator.  The panel has essentially been given carte blanche to recommend any steps it deems necessary to reach that $1.5 trillion target.  That means that, in addition to budget cuts, the committee can venture into areas like entitlement reform, tax reform and a host of wide-ranging policy changes.

Thus, a supercommittee born out of political necessity and the fear of financial default could also present a rare opportunity.  In the weeks between now and Thanksgiving, these 12 lawmakers have a window of time in which to gather input and develop concepts to improve health care quality and cost-effectiveness.  The Affordable Care Act started a process to implement health system delivery and payment reforms.  It could be said that this supercommittee has an opportunity and even a mandate to accelerate that evolution.

There are important choices to be made this fall.  This new legislative entity could very easily take steps that will prompt more doctors to turn away Medicare patients, make prescription drugs more expensive for consumers and make home health care less accessible for seniors and the disabled.  Or, they can go a step beyond and generate savings through better, more innovative care.

Perhaps the supercommittee should begin its work with a screening of Dave.

This weekend, I was among those following the cable news shows to see if Congress would finally reach agreement on a debt ceiling package.  It appears now that, even though it may be a “sugar-coated Satan sandwich” to some, a legislative approach has been crafted that will raise the debt ceiling and establish a process for achieving approximately $2.5 trillion in budget cuts over 10 years. 

In this process, a congressional super-committee will be charged with identifying $1.5 trillion in deficit reductions by Thanksgiving.  If they fail to do so, automatic cuts will occur and fall most heavily on the defense budget and Medicare.

As I was watching the news analysis, though, I saw a continued misunderstanding of what it means to cut Medicare provider payments.  One commentator praised the deal for protecting the most vulnerable in society, pointing out that Social Security and Medicaid were exempt from cuts, and Medicare cuts “would only affect providers.’  We’ve seen the same type of analysis several times today in print reports.

This kind of verbage creates the impression that an acceptable way to reduce Medicare spending, in a way that doesn’t do harm to patients, is to ratchet down payments for physicians, hospitals, medical devices, pharmaceuticals and medical supplies.

What is seldom acknowledged is that, for every percentage point shaved off of Medicare provider payments, seniors lose a little more access to quality healthcare.  We’ve already learned, thanks to a survey by the American Medical Association, that approximately one in every three primary care physicians is limiting the number of Medicare patients in their practice.  That’s the consequence of payment levels that are significantly below private insurance levels.  Given the rising number of baby boomers entering the Medicare program, the last policy change we need is one that will reduce the number of physicians available for this population.

That’s the consequence, though, of budget reductions that “only affect providers.”

Originally posted on Prognosis Blog on August 1st.

I never forgot that. It’s the reason I eventually left government work. Not because of the politics, which I recall could be tough (at least in public).

But about five years into my time as an appointee, I did a speaking tour across the Midwest. I opted to drive between close-by cities and, as I did, saw that everything ‘looked strange.’ I realized then that I’d lost touch; my eyes had surely been opened in those years and, as predicted, they’d now closed. I could no longer ‘hear’ what the public wanted and ‘translate’ it into good public policy without great effort. I knew then it was time to leave.

Today’s New York Times ‘above the fold’ story headlined “After a Protracted Fight, Both Sides Emerge Bruised:  A full victory lap was not expected — or, perhaps, deserved — by those on either side of the debate, which has consumed the capital, unnerved the financial markets and infuriated Americans.”

The article addresses the political challenges to those involved in the coming months as they approach campaigns and reelections. As tough as I remember the politics being, it’s apparently tougher these days of debt ceiling maneuverings. But it’s hard to feel sorry for politicians these days, tough as it might yet get. Not from where I sit. My eyes are open by the fears and struggles of those I know – and my own, too.

• Friends – talented business people, scientists, researchers, problem solvers – have joined the ranks of the unemployed. Some are teetering on the brink of being among the long-term unemployed;
• Companies in the innovative health sectors continue to downsize and at precisely the time they should be investing more in research to solve some of today’s intractable problems, they’re cutting back on R&D as well;
• Physicians say they are uncertain about their futures and whether they can remain in business;
• My city is struggling to stay afloat; everyone has lost faith that its public schools will prepare the next generation for the challenges they will face;
• For the first time, I’m beginning to think that those on Medicare who fear the future of the services they receive are right to worry;
• I’m about to sell my house (gratefully so) and suffer a real estate loss of close to 30%;
• My hard-earned savings are at the mercy of forces I can’t control and may yet see another dramatic dip in their value as the country enters what some pundits say is the start of America’s lost decade; and
• My niece’s husband, who’s just become a new Dad for the second time, is about to go to some warzone for the third time.

I could go on.

I’m an optimist by nature and something of a Promethean, pretty much believing that anything is possible when good, hardworking people come together and apply their talent.

I’m beginning to believe that optimism and hard work are not enough; certainly not in the face of a fractious group of political players who have so much power to do so much harm on so many issues and to so many near- and far-term futures.

One pundit I know says that politics is ‘sport and entertainment’ and that quip can be funny on stage. It’s no joke in real life and I, for one, am not laughing as it plays out in real life.

The summary also includes brief descriptions of Medicare proposals in other deficit reduction proposals from American Enterprise Institute; Cato Institute; Center for American Progress, Sen. Tom Coburn; Congressional Progressive Caucus; Dr. Bill Galston and Ms. Maya MacGuineas; Heritage Foundation; Institute for America’s Future; Sen. Joseph Lieberman and Sen. Coburn; Our Fiscal Security; Dr. Alice Rivlin and Chairman Paul Ryan; Republican Study Committee; Roosevelt Institute Campus Network; and Chairman Ryan.

The side-by-side summary is part of the Foundation’s Project on Medicare’s Future, which focuses on producing timely analysis of leading Medicare reforms affecting people on Medicare.  .The Kaiser Family Foundation is a non-profit private operating foundation dedicated to producing and communicating the best possible analysis and information on health issues.

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/

The truth, though, as spelled out in forceful detail by McKesson Corporation CEO John Hammergren (a Healthcare Leadership Council member) in a Forbes blog post this week, is that genuine, system-changing reform is taking place up and down the healthcare spectrum outside of the Washington Beltway.

His sound advice to his counterparts in the healthcare industry is simple and compelling:  Don’t wait for Washington to enact change.  Make it happen yourselves.

Mr. Hammergren cites hospitals and insurers that have reduced costs and improve the quality of patient care through sound use of information technology, adherence to evidence-based medicine and innovative delivery approaches and management techniques.  As he writes, “Disciplined leadership and visionary planning turn intractable problems into exciting opportunities.”

Actually, the Healthcare Leadership Council is bringing that argument to government policymakers.  Our HLC Value Compendium cites numerous examples, with the metrics to back them up, of private sector healthcare companies and organizations taking steps to improve the value of healthcare and improving patient outcomes.  We believe these success stories can be a springboard for the Center for Medicare and Medicaid Innovation’s efforts to develop successful payment and delivery reform demonstration projects. 

In the meantime, the next time we get caught up in the latest health policy political spat that has everyone inside the Beltway talking, we should remember the message in Mr. Hammergren’s Forbes post.  What’s happening everyday in healthcare venues throughout the country, he writes, “is the kind of reform that no one will want to repeal.”

Originally posted on the Prognosis Blog on June 9th.