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?

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!

By Jessie Gruman. “Buck up. You are going to feel bad for a year.”

This was my chemotherapy nurse a year ago, returning a call I made to my oncologist. I had left a message asking whether there was something he could do to help me. Should I feel this horrible following three action-packed months that included stomach cancer surgery and aggressive chemotherapy? 

The answer, at least as far as my nurse was concerned, was “Yes.” 

And she was right. It did take a year to regain my energy and feel well again.

The new year set me reflecting about what I’ve learned about being sick over the past 12 months that only the experience itself could teach me:

You know that old Supremes song, “You Can’t Hurry Love”? I learned that you can’t necessarily hurry healing either, even if you work hard at it. A week after that call to my oncologist – still feeling rocky – I joined a local gym’s “$30 for 30 days” New Year’s special to try to revive my cardiovascular fitness. For each of the next 30 days, I trudged down there, got on that Nordic Track machine and forced myself to flail about for 40 laborious minutes. On most days last year, I made myself walk at least a mile and practice yoga. I did my level best to choke down a tiny healthy snack almost every waking hour. Often, doing these simple tasks took all the energy and will I possessed. But I was committed, convinced that if I did them, I would get better faster.

And it still took a year before I felt normal again. How frustrating was that?

I have absorbed the very American notion that success results from hard work. By extension, health should be achievable if we comply with the admonitions of our employers, the media and health promotion advocates to exercise and eat right. I knew that my behavior didn’t cause my cancer and wasn’t going to cure it. But surely, I thought, I can speed up my recovery from the assault of chemotherapy and surgery if I really try. I had great expectations. So did those around me: “Why is she still so frail?” “Why isn’t she better yet?”

I might still be feeling pokey if I hadn’t worked so hard at recovering. But this experience slammed me up against the reality of physical illness and the limits of behavior in changing its course. It reminded me how a deep belief in our own efficacy makes it easy to slip into blaming ourselves (or the sick person) for not getting better. And it reminded me of how unruly, unpredictable and often uncontrollable the effects of disease and its treatment are on our bodies.

Another lesson: I expected that Health Information Technology (HIT) advances and opportunities to connect with other patients using social media would dramatically change my experience of treatment in contrast to my previous three experiences with cancer.

I was dazzled by the ease with which I was able to collect the information and evidence I needed to make good decisions about my treatment plan. And I am grateful for online access to friends and colleagues all over the world that allowed me to feel less isolated over this past year than I have during previous illnesses.

But once I started treatment, feeling ill extinguished my curiosity about my disease. It dampened all interest in second-guessing treatment decisions or seeking innovative approaches or learning about new technologies to aid my recovery. And only occasionally could I summon the energy to reach out even to close friends and family, much less to seek out people like me online for advice and support.

I see embedded in the enthusiasm about patient portals, decision aids and smart phones an attitude that being actively engaged with new technologies can somehow provide happy relief from the pain and discomfort of illness. Bright health information Websites, fun games designed to inspire adherence and smart medication reminder apps are presented as having the potential to turn the experience of illness into a series of problems that are easily solved through the acquisition of the technologies.

It’s true that HIT can help with scheduling appointments, refilling prescriptions and coordinating the disposition of test results to different clinicians, for example. (My clinicians mostly don’t use electronic health records with patient portals, so I had no respite from those tasks). And remote patient monitoring and assistive devices already make some caregiving chores easier. These are welcome contributions, especially as more responsibilities for care are shifted to patients and their families. But I return to the world of the healthy with the impression that the value of HIT is tactical, not transformative, at least for the sick person: the suffering remains.

My third insight from the past year is that most of the time I believed I was thinking clearly but in hindsight, I see that my judgment and thought processes were often clouded. Through my experience with serious illnesses, I’ve developed strategies for getting through the days. For example, regardless of how I feel, I always bathe, dress, eat breakfast and put my shoes on. The shoes were important: they serve as an optimistic signal to myself that I’m well enough to get up and go outside just like anyone else. Between the shoes and my exercise/diet routine, I could sometimes convince myself that I had returned to my former healthy state (conveniently forgetting my need to lie on the couch for hours).

But I had not recovered, and the clarity of my thinking was often – although not consistently – compromised. I scheduled events and travel that were unrealistic, given my stamina, and when I couldn’t be dissuaded from following through, I’d spend days recuperating. Again and again I disappointed myself (and others) by setting ambitious goals for commitments I couldn’t meet.

I know I am not unique in this. I watch friends and colleagues whose judgment is impaired by illness make similar, often higher-stakes errors. They make weird self-care choices, abruptly change treatment decisions, fire their physicians and refuse to seek advice about clearly serious conditions. We all believe that we are making rational choices when we do these things. But we aren’t, and the impact on our health and recovery can be serious.

I wanted to write about these three insights while they are still vivid for me. Standing for the past couple months on the shifting border between illness and health, I’ve experienced how (fortunately) easy it is to forget how illness eats away at the balance of one’s mind, body and spirit. As a mostly ill person glancing into the world of the healthy over the past year, I’ve marveled at the insensitivity and indifference to this imbalance by even those with the greatest love, or best intentions, training and experience.

The tools, technologies and services that constitute health care will never completely eliminate the suffering caused by illness, even if they are perfectly delivered. But that suffering might take a more modest toll if all of us – patients, professionals, caregivers, family, friends and colleagues – have clearer expectations about the arc of illness and how it affects and can be affected by each of us.

In the end, that curt directive by my chemotherapy nurse to “Buck up. You are going to feel bad for a year,” was the most helpful advice I received.

The following is a guest post by Ms. Nasreen Sulaiman a Senior Instructor at Aga Khan University School of Nursing. She  has worked with palliative patients.

By Nasreen Sulaiman. Palliative care is an urgent humanitarian need for people worldwide with cancer and other chronic fatal diseases as it provide comfort and ease suffering. Nearly 80 % of the cancer patients in Pakistan present late in stages 3 & 4 with terminal disease.  In Pakistan, the concept of palliative care is in its infancy stage and need to be strengthened. In Karachi, one of the mega cities of Pakistan, only two hospices each of 20-25beds provides palliative care services where the health care professionals’ main focus is on providing the physical aspects of care. Pain management, a crucial aspect in the palliative care still remains partially addresses due to lack of narcotic supplies and other medications.  Furthermore, I strongly feel that other than providing pain and symptom relief measures, the social, emotional, and spiritual needs of the patient should also be given prime importance in order to provide holistic care to the patients. Nurses need to learn to utilize various non-pharmacologic measures such as therapeutic communication techniques, use of humor, guided imagery, therapeutic touch, relaxation exercises, religious songs and other diversional activities in order to ease the suffering, emotional distress and provide optimal comfort and support to the patients including their caregivers. Moreover, in palliative care settings, caregivers hold a great importance as they are the ones who are providing the total care and most of the time with the patients. Caregiver role strain is an essential area to be looked at. Caregiver support is another area to be looked upon. We need to establish caregiver self-help groups or other avenues to support the caregivers as they go through lot of emotional pain and need immense help and affection which may assist them to perform their roles effectively with the patient suffering from the disease.

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!

I have a number of friends who are battling MS, one of whom, Amy Gurowitz, shared a link on Facebook the other day to Jim Sweeney’s online empire of improv humor and chronic disease. Jim’s MS journey started with vision problems in 1985, he was officially diagnosed in 1990, and has been dealing with the disease – finding the funny most of the time – ever since.

Jim’s body of work includes decades of live improv, his one-man show “My MS & Me,” which you can hear on the BBC Radio 1 site. His MS has progressed to the point that he’s now in a wheelchair, and his public presence is mostly limited to Twitter, where his profile describes him as a housebound hedonist (hey, it made ME laugh) and YouTube.

How much courage does it take to laugh out loud, in public, at an incurable disease? Jim certainly has courage at the level required.

Other examples of funny-or-die in managing chronic disease include Mark S. King’s fabulously funny My Fabulous Disease blog (Mark is HIV-positive). The aforementioned Amy Gurowitz laughs out loud about her MS in a number of places, including MS Soft Serve and MS-LOL (life of learning OR laugh out loud, you pick).

On the provider side, there are a number of docs who are breaking up the waiting rooms and wards.

Dr. Patricia Raymond is a gastroenterologist whose mission in life is to take the “ick” out of colonoscopies. She bills herself as The Fabulous Butt Meddler. Since she looks like Bette Midler, the joke works on every level.

Dr. Zubin Damania, a/k/a ZDoggMD (“Slightly Funnier Than Placebo”), is a hospital medicine specialist in Palo Alto as well as a veritable buffet of medical humor, some G-rated and some most definitely NSFW. His videos alone guarantee hours of laughter.

There’s an entire site dedicated to clinician humor called GiggleMed.com – both ZDoggMD and Dr. Butt Meddler are featured there, along with a host of other find-the-funny MDs and RNs.

I even found a scholarly article entitled The Use of Humor to Promote Patient Centered Care – be warned, though, that (1) it’s a “scholarly article,” meaning that it’s probably had all the laughs surgically removed and (2) they want $34.00 for it. You have been warned.

What’s my point here? I actually have two:

1. Laughter really is the best medicine. Humor keeps us in touch with our humanity, and – unless it’s insult comedy, which I do not recommend in the health care arena, unless it’s insulting bad health care – it helps to comfort others in the same situation.
2. Patients and providers need to work together to help each other find the funny. If you’re a doctor, don’t just say “you’ve got [insert dread diagnosis here], here’s the treatment plan, call if you have any questions, … NEXT!” Look your patients in the eye, and channel your inner comedian whenever it’s appropriate. If you’re a patient, connect with other people in your situation and see how they’re finding the funny. And help your doctors find their funny. If they can’t find it, you should find another doctor.

We all need to work together to break each other up. Laughter can comfort, can calm, it can even heal.

That’s real disruptive health care, no prescription required.

It’s a tough conversation to have with oneself, since most of us don’t want to admit our mortality, let alone with family who cannot imagine a world without us. Yet it’s necessary that our opinions are clear and in writing to ensure our wishes are honored when the time inevitably comes, and the holiday season offers a unique opportunity to have these difficult discussions with family and friends gathering together.

According to a Pew Research Center survey conducted in 2006, only 29 percent of people had a living will; and in 2007, a Harris Interactive study (PDF) put the proportion with advance directives at two in five. With the aging population growing, these statistics need to be improved upon, and that’s where Disruptive Women comes in.

Last year, around this time, we featured a post from Disruptive Woman Alexandra Drane, who launched the Engage with Grace movement to make sure all of us understand, communicate, and have honored our end of life wishes. This year, to remind people to ask their loved ones Alexandra’s five questions (for a reminder on what the questions are, check out this post from Disruptive Women’s archives) and provide people with the resources they need to plan for the future, we’re dedicating a whole month to end of life care issues. We’re planning to feature discussions about where to start when making an advanced care directive, how clinicians are having these types of conversations with their patients, and what end of life care is like around the world.

We’re excited to share new content from Alexandra, as well as posts from our newest Disruptive Woman, Janice Lynch Shuster, PhD, author of a number of books on end of life care including the recently re-released Handbook for Mortals, which she co-wrote with Drs. Joanne Lynn and Joan Harrold. Our man of the month, Peter Ditto, PhD, Department Chair and Professor of Psychology & Social Behavior at the University of California, Irvine, will also share his expertise in end of life care in an interview with his daughter, Hope, a member of the Disruptive Women team.

Please feel free to contact the Disruptive Women team if you’re interested in writing a post about end of life care, or if there is anyone whom you think we should approach about guest blogging on the topic.

Stay tuned!

“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.

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.

The challenge is designed for fast learning, so that innovators can create the needed service solutions for people living with diabetes. It brings together the richness of open data sets made available on healthdata.gov, the values of human-centered design, and the leading edge methodology of the top innovation accelerators.

Until July 31^st, innovators can submit their concepts on www.datadesigndiabetes.com.  In early August, an independent panel of expert judges (listed below) will review the submissions and five semi-finalists will be awarded $20,000 and professional mentoring to turn the concept into a prototype. In early September, the five teams will present at a demo day.  An open panel and our judges will select two finalists to receive an additional $10,000 to pilot their prototype in a real life diabetes community.  The findings and learnings from this exercise will inform the selection of a final winner who will receive an award of $100,000, along with a one- month stay at the RockHealth incubator in San Francisco to turn their prototype into a full, real solution for people living with diabetes.

Judges include:

• Jeff Hammerbacher – Founder and Chief Scientist, Cloudera
• Manny Hernandez – Founder, TuDiabetes
• Hilary Mason – Chief Scientist, Bit.ly
• Todd Park – CTO, U.S. Department of Health and Human Services
• Sue Siegel – General Partner, MDV-Mohr Davidow Ventures
• Ida Sim – Director, UCSF Center for Clinical and Translational Informatics
• Dennis Urbaniak – VP U.S. Diabetes, sanofi-aventis

Diabetes is a chronic, progressive disease that has reached epidemic proportion, with 100 million people in the U.S. currently living with diabetes.  At this rate, the CDC estimates that by the year 2050 1 in 3 Americans will have diabetes. 

Visit www.datadesigndiabetes.com for more information, including criteria, official rules and deadlines.  For more updates, follow Data Design Diabetes on Twitter and Facebook.

On the Quality Front: New Approaches in Improving Patient Safety

Thursday, July 28, 2011
1:30 – 2:45 pm ET

A key part of improving quality is in reducing medical errors and improving patient safety. Providers and payers are redoubling their efforts to address such problems, ranging from hospital acquired infections and preventable injuries to avoidable complications and adverse drug reactions.

The need is clear. A recent study published in the journal Health Affairs found that, on average, one third of hospital inpatients suffer an adverse event or medical error. That is nearly 10 times greater than shown by previous studies. As for Medicare, about 1 in 7 beneficiaries experience adverse events, costing the government some $4.4 billion each year.

Join Philips on July 28th, when their latest “Reimbursement Simplified” webinar explores some of the new approaches to improve patient safety including:

• A program by a Chicago hospital to remotely monitor ICU patients
• A JCAHO initiative with top health systems to design and disseminate new safety solutions
• A private payer’s perspective on identifying and managing serious adverse events

Speakers:

• Carolyn S. Langer, MD, JD, MPH
  Medical Director, Medical Management and Quality, Harvard Pilgrim Health Care
• Klaus Nether
  Black Belt, Joint Commission Center for Transforming Healthcare
• Becky Rufo, DNSc, RN, CCRN
  Resurrection Health Care eICU® Program Operations Director, Resurrection Health Care
• Laurel Sweeney (moderator)
  Senior Director Global Reimbursement Policy, Philips Healthcare

To Register: Go to www.philips.com/reimbursement or call 202-263-2900. There is no fee to participate.

By Jessie Gruman.“The most important thing I learned was that different doctors know different things: I need to ask my internist different questions than I do my oncologist.”

This was not some sweet ingénue recounting the early lessons she learned from a recent encounter with health care.  Nope.  It was a 62-year-old woman whose husband has been struggling with multiple myeloma for the last eight years and who herself has chronic back pain, high blood pressure and high cholesterol and was at the time well into treatment for breast cancer.

Part of me says “Ahem.  Have you been paying attention here?” and another part says “Well of course!  How were you supposed to know this?  Have any of your physicians ever described their scope of expertise or practice to you?”

I can see clinicians rolling their eyes at the very thought of having such a discussion with every patient.  And I can imagine some of us on the receiving end thinking that when raised by a clinician, these topics are disclaimers, an avoidance of accountability and liability.

But all of us – particularly those receive care from more than one doctor – need to have a rudimentary idea of what each clinician we consult knows and does. Why is this clinician referring me to someone else? How will she communicate with that clinician going forward? How and about what does she hope I will communicate with her in the future?

Why does our clinician need to address these questions?

Because in the absence of real guidance we will guess.  Some of us will make informed guesses and be mostly right. Others of us will leave our primary care provider in the dust and seek care for routine health matters from our specialist, whom we see more frequently and who seems to know us better. Some of us, like my friend above, will ask for help from whichever physician is handy and will call back, regardless of the problem.  And some of us will throw up our hands in frustration and head for the local emergency department when we find we can’t breathe and don’t know which of our doctors to consult about those damn allergies.

These ad hoc solutions are a waste of our time and surely contribute to a poor use of clinician and institutional resources.

Fragmentation of health care and lack of coordination of services are widely recognized as problems.  Considerable efforts now aim to improve communication among providers when a person leaves the hospital, for example, and great stock is placed in the potential of the new patient-centered medical homes to “coordinate” our care (although the parameters of such coordination have yet to be defined).

There has been little or no recognition, however, of the fact that we patients and our families and loved ones are the main coordinators of all care: We decide when a threshold of discomfort has been crossed and we need professional help.  We decide from whom and in what setting to seek such help.  And for the foreseeable future, unfortunately, we choose to share the test results and treatment plans from one of our clinicians with another – or not.  And we are doing this without guidance.

What would guidance look like?

Well, it doesn’t look like a website.  More likely it has clinicians taking these small steps:

Clearly introducing their expertise, their experience and their role relative to other clinicians caring for us.  This needn’t be highly technical or take a lot of time but it does need to differentiate one clinician’s role from other specialists’ or primary care provider’s, anticipating that I and my caregivers may be confused about which problem is best addressed by which doctor.  Connie Davis, a geriatric nurse practitioner in British Columbia, says, “When I introduce myself to the patients I serve, I say, ‘I’m a geriatric nurse practitioner. Have you ever worked with a nurse practitioner before?’ If they haven’t, I tell them that I am a nurse with additional training, so I am somewhere between a nurse and a doctor and that I work with older adults to address common health concerns and make sure everything is working as well as possible.”

Giving simple but full explanations about referrals: why, to whom, for what, expectations about ongoing care and future communication, both between physicians and between the referring clinician and the patient.  Such an explanation lays out a template for us to more easily find the right solution to the current problem.  Further, many of us assume that because the receptionist uses a computer, our records are automatically electronically (and magically) transmitted to every other physician to whom we are referred.  We can’t do our part to support inter-physician communication if we believe it is being done for us already.

Saying “That’s not my area of expertise.” As someone who is “doctored up” with about 15 physicians treating me right now, I sometimes guess wrong about what any one of them considers within their expertise.  I get a little frustrated but am ultimately reassured when one of them responds to my question with “Not my body part,” or “You need to talk to your primary care provider about that.”  A survey released this week by the National Alliance on Mental Illness found that patients and family members are concerned when their doctors don’t tell them they lack expertise about a condition: 75 percent of parents of kids with mental illness who were surveyed doubt their primary care providers’ abilities to treat their kids effectively.  It’s difficult to establish a “continuous healing relationship,” as the Institute of Medicine report Crossing the Quality Chasm encourages, when questions about clinician competencies are not directly addressed.

Don’t get me wrong. System-level fixes such as  tailored online information, interoperable electronic health records with good patient portals and enhanced primary care will ease some of the redundancy and fill some of the gaps that now by default (and often without our recognition) fall to us to patch together.  But at the end of the day, it’s my mom deciding whether to call the cardiologist, the neurologist, the geriatrician or 911 about my disabled dad’s sudden dizziness.  She’s the one who coordinates his care.

She also needs help from her clinicians to fulfill this responsibility.  As do we all.

Written with reporters in mind, “Covering Health Issues” is useful for anyone looking for concise information on health policy issues, and experts from across the political spectrum. Chapters contain fast facts, background, tips for reporters, story ideas and experts with contact information. The book also includes an extensive glossary, ideas and examples for TV and radio reporters, and links to polls on health issues. Supported by a grant from the Robert Wood Johnson Foundation.

To see a video demonstration of the book by Julie Rovner of NPR, click here. To see individual chapters, click on any of the chapter titles below. To download the entire sourcebook as a PDF, click here.

For all chapters, links are available to local news stories on the chapter topic. For many chapters, there is also a short video featuring one of the nation’s top health policy experts.

Table on contents:

• Introduction and Acknowledgments
• Health Reform
• Cost of Health Care
• Quality of Care
• Employer-Sponsored Health Coverage
• Individual Health Coverage
• Children’s Health Coverage
• Medicare
• Medicaid
• Long-Term Care
• Disparities
• Mental Health and Substance Abuse
• Public Health
• Polls on Health Care Issues
• Covering Health Issues for TV and Radio
• Acronyms and Glossary
• Experts
• Websites

The Alliance for Health Reform is a nonpartisan, not-for-profit health policy education group. We are committed to helping journalists, elected officials and other shapers of public opinion understand the roots of the nation’s health care problems and the trade-offs posed by various proposals for change. Our aim is quality, affordable health coverage for all in the U.S., although we do not lobby or take positions on legislation. Sen. Jay Rockefeller (D-W.Va.) is our founder and honorary chairman; Robert Graham, MD, of the University of Cincinnati is our board chairman.

We won’t pound a single nail into the walls to hold the art.  This shall be The Walking Gallery.  That night dozens of people will walk into the space wearing business jackets or doctor’s lab coats.  That alone is not unusual.  It would be a daily occurrence in this dual-use space.  But these jackets will be works of art.  Each one shall be painted with the story of a patient or an element of medical advocacy by me or another artist.  These masterpieces will be worn on the backs of government employees, technology gurus, medical professionals, social media activists, CEO’s of companies and artists.  It shall be a great meeting of the minds.

The Walking Gallery will happen because Jen McCabe followed me on Twitter on May 30th 2009.    That was the day before I placed the Medical Facts Mural in Pumpernickels Deli on Connecticut Ave.  That was a day when my Fred was still alive and could speak and eat again because of the wonderful care he was receiving in Washington Home Hospice.  Jen was one of my first followers on Twitter and is such a glorious spark of life.  

On August 20th she emailed me after I had posted a comment on her blog and asked me if I would paint a series of paintings on the back of her blazers to wear to upcoming health meetings.  I told her I would be honored to paint jackets for her.  Jen responded, “Symbols and talismans mean quite a bit to me, and having things constructed by friends is one way to remind myself why I do the work I do and forego so many of the other things I enjoy.  I’m so happy to have a wearable badge of courage – just wrote an index card for myself to remind me of the importance of patient advocacy by “any means necessary.”  Art is another one of those means.”

I finished the second mural “73 Cents” on September 30th 2009.  It was my feverish obsession in the weeks after Fred’s death.  “73 Cents” was a thing that I had to do.  It soothed my soul; it spoke to me and calmed my aching heart.  It gave me a reason to leave the solitary confines of my mind and my widowhood.  It gave me permission to stand on the street and talk with complete strangers about the grief roaring within me.  I often go to social justice events and hear about the chronically homeless on the street.  I hear workers complain that they find small single apartments for these folks to live in, but instead many return to the street.

I think I know the reason why. 

It is hard to be alone when sadness is engulfing the mind.  The street is alive, and there the broken congregate and help each other.  Each day I painted I made many new friends, but those who came back and spoke to eye to eye were often the most dispossessed and the homeless. 

Without Jen’s suggestion that I paint jackets, I would have gone home, my Magnum Opus done, to loneliness and grief.  Yes, I was still blogging, but that was not enough.  I had to paint.  I had to spread the word through art.  Jen had provided a new “wall,” and that wall could walk into the Mayo clinic or the National Board of Medical Examiners and remind everyone of those patients who suffer in a system without real time data access.

I would paint and post images of three jackets for Jen:  “Data Prison” on October 5th 2009,

“Titanic” on December 14th 2009

“First Responder” on January 12th 2010.

As Jen and I began to tweet about the jackets, Elizabeth Cohen from Empowered Patient on CNN would see our twitter stream.  She said she would write a piece about the jackets on CNN health as they captured the zeitgeist of the patient data access movement that @ePatientDave had so apply entitled: “Give Us Our Damned Data.” 

Due to Jen’s very public appearances wearing patient advocacy jackets, two other thought leaders would contact me to obtain images they too could wear.  Chiara Bell from Enurgi, later to become part of Univita Health, would ask to have a jacket of her own.  She wanted to show the importance of the caregiver in patient care.  I made for her the “Caregiver’s Clock” a painting that depicts both the family member as caregiver and the professional caregiver caring soothing the terminal patient.

Finally, Roni  Zeiger from Google Health would contact me.  He wanted a jacket that depicted the passionate need for data access felt by the patient/caregiver.  I painted for him “Data Cloud” that recreated my desperate feelings to find out the truth via the Internet.  Roni Zeiger then wore that jacket at the Community Health Data Initiative event on June 3rd 2010 before a crowd of hundreds including Secretary of HHS Kathleen Sebelius.  Roni would finish his presentation about the Combining of HHS Hospital Compare with Google’s Fusion Tables Cloud Database App, by turning his back on the audience and saying, “The last thing I would like to mention is that, let’s not forget all of these data points tie back to individual people and their stories.  And many of you probably know of the work of Regina Holliday.  She is an incredible woman I met recently.  An artist. She made- I am not a fashion guy, but she made this jacket for me.  Feel free to come up after to get a closer look.  We made a deal.  She would make this jacket for me, if I would wear it at important conferences.   This is the first time I am wearing it.   And it is about the importance of data and the importance of talking about data and the importance of technology in the future if health care.”

So, that is the story of five jackets that I painted to spread awareness.  Five jackets. They bring the “patient” into the room and onto the panel, when no patient was invited to attend.  They remind me of the encaustic mummy paintings from 1st century CE found in Egypt.  These amazingly real and poignant faces stare out above dried sinew, wrappings and bone.  Their eyes sear our souls and remind us, I was once one of you who lived and played, who laughed and loved before I met this fate.   They transcend the dust and the darkness of the ages, and make the lives lost long ago so very real.  The jackets worn by these brave few do the same for data, and pie charts and graphs. 

When you sit in an audience listening to a power point presentation, and the faces on these jackets stare back at you; it changes things.  It adds an edgy sense reality to dry recitation of data.  It wakes you up.

Perhaps you will have the honor to wear one of these creations.  It can be quite unsettling.  People will stop and stare.  You can now enter a conference and feel like an outsider.  Ostracized.  You can be given the gift of experiencing the disconnected feelings of the ignored patient in the room.   People will point and talk about your back like you are not even there.  You are a “case,” an object, you exist to be described and critiqued.   And after being at a conference all day, you can take that jacket off, and be normal again.  Or not.  You can “come out.”  You can let go of that other title, be it, Techie, Doctor, CEO or founder of a non-profit.  You can cease to be defined as the cog you appear to be in the machine called medicine.   You can be simply patient.  You can tell your personal story and reach your inner center as a patient.

Perhaps my painting will help you.  Perhaps it will be the icebreaker you need to let go of the ubiquitous black suit that blends in at a medical conference.  Perhaps it will be way to open up about why we are doing all of this important work.  We are doing this to help patients heal.  We are doing this so we can all live happier lives.

So… CALLING ALL JACKETS!  CALLING All ARTISTS! I need your jackets, I need your stories.  I need other artists who would like to join a movement.  Never let anyone tell you, that you do not have a voice.  Step up and Speak out.  We get great change by doing great things.  I need you to show up at The Walking Gallery At Kaiser Permanente Center For Total Health between 6:00 to 9:00pm on June 7th.  That night you will be surrounded and loved by others just like you.  It shall be a great fellowship of those deeply invested in patient empowerment.   

And then you shall go forth and wear your jacket at other conferences spreading the word about the importance of patient data access and truly patient centered care.  And sometimes you will be the only “patient” in the room.

But you will be brave and you will be proud, for you are a member of The Walking Gallery.

Rainy days and Saturdays get me down. (Sounds like a good song lyric.) Rainy days force a quiet among the constant buzz of activity. Saturdays are the closest thing to a once a week siesta. Nearly ten years ago, on a Saturday morning I had to to reflect on the beliefs I had held dear all my life as I was holding my newborn son who had just died. It took more than five years before I could wake up on a Saturday without feeling a desire to go back to sleep.

Today the rains came and brought with them memories of a Saturday past. Tears and frustration and disappointment rallied. Those feelings don’t make me feel very peaceful. Taking the analytical approach learned in grad school, I identified five causes for a peace builder in health care to have anger, frustration and the occasional tears.

Poor communication. This is a well-documented root cause for most every medical error. Earlier this week Kathleen Sebelius of the Dept of Health and Human Services and Don Berwick, MD of the Centers for Medicaid and Medicare announced the creation of a $500 billion initiative to encourage more collaboration between hospitals, health care providers, community organizations, and employers, etc to improve care and lower costs. James’s Project was among the first ten organizations to make the public pledge for the Partnership for Patients: Better Care, Lower Costs in the greater Philadelphia area. Through this website consumer and clinical organizations can seek out others with similar values for collaboration. When a cancer patient called me this week sharing she had left the hospital without discharge instructions together we took a look at this website. The large teaching hospital had not yet pledged. By the end of the week, the institution had taken the pledge but the patient is still waiting for her discharge instructions. This is new resource where patients can grab the wheels and drive change by asking their hospital, health care system, insurer and or doctor if they have signed the pledge. Also ask – what community or patients group are you collaborating with?

Gag Clauses. As a rule, people love to hate the plaintiff in a medmal case. If you actually disagree with me, think of before you knew a loved one who died from medical errors. Americans love to love the whitecoats. Anyone associated with a trial lawyer automatically becomes a blackhat.
I believe in the judicial system our forefathers created. Everything breaks down at times. As a teacher, I hope that learning happens from mistakes. With James’s case, it was clear the physicians had as much of a right to a fair trial as my son did. It could have all been spared if open communication between us had been allowed. I was offered $750K to not go to trial and to not speak of my son’s whole life. All I wanted was to cover my attorney’s fees (about 45K at that point) and a 5 minute conversation with one of the defendants. It was not an acceptable counter offer evidently.
I can reflect now that I did get that conversation (and much more than 5 minutes) with two doctors (not just the one) and I did that all on my own.
Despite the tremendous pain of our shared trauma we have been able to heal by restoring a relationship. Our story and how we did it is how money in health care conflicts can be saved. More importantly, it teaches so many what not to do when they may find themselves in a similarly shared event. I have spent years and dollars investing in formal education to share this.
Patients and their parents are still only offered money and a gag clause to “settle” the conflict. Those two offerings do not settle anything. The parents that reach out to me continue to say, “It’s not about the money.” But, are patient safety leaders only interested in transparency when the negligence found in a case is accompanied by a large financial award for the patient? These parents want to give meaning to their child’s life. Not more flowers to blanket a grave.

Dishonesty. James’s lawyer is a smart and quick-witted guy. Some of what he said in court and elsewhere I call “Jim-isms”. One of my favorites – not for its humor but for its truth, was part of trial argument, “Just because someone says something is true, does not make it so.” Another lawyer pointed out more recently that docs and lawyers are just the same as plumbers, roofers, and other professionals. The point was well made that regardless of the profession some people are just not ethical in their pursuits. The difference is that doctors (and less as much lawyers) are bestowed an immense amount of respect, influence, access, and admiration that is not always warranted. For the few who have been dishonest in medicine, the impact is far-reaching even if it is only once. I think the 114 year old man that died this week had it right. His advice – “Tell the truth from the go” (it works out better and doesn’t kill you).

Exploitation. An international patient safety leader asked for permission to borrow James’s image for a speech to be given during a large gathering. This leader does great work. Emails were kind and appreciative for the work of parents and family members of iatrogenic victims. There are alot of us out here in the world. Perhaps that is why the leader has more recently declined to engage, or even has worked against me in trying to create a space for transparency and collaboration for the next generation of parents with sick children in my area.

I, and many others like me, continue to answer the calls and requests from leaders in this patient safety industry – like taking multiple unpaid days off from work to attend conferences when they need a representation of patients (or consumers). Despite the variety and multiples of patient safety advocates, patient safety industry leaders engage with a handful of patient activists on a regular basis. Do they like our traumatic stories but not our knowledge and work?

Pictures. Hospitals spends many a health care dollar on marketing. Babies and young children are a common theme in hospital and health care advertising. The ads are in newspapers, magazines, television and anywhere you might find young families. For parents who have lost a baby in one of these hospital but not offered post-trauma conversations with its physicians or employees these pictures cause sadness and more questioning. All they continue to ask is “Why won’t someone tell me what happened?”

Grieving parents become very adept at modifying their routine to ease the unexpected waves of grief. Some take a different way to work to not pass the doctor’s office. Some change what grocery store they use. Others will simply never look to their right (or left) when passing said hospital. The only guarantee in this approach is that they cannot avoid the reminders. The hospital will have an ad on a bus, or in the newspaper they read, or even on television showing a beautiful healthy new baby.

James’s hospital did that too. These ads remind me of the handful of pictures we have of him and the one that I asked the nurse not to take.

That was nearly ten years ago. Earlier this week, another mom told me a similar story. Her baby’s nurse photographed her baby after death. She told the clinician she did not want that picture taken.

On rainy days and Saturdays when I hear a parent share a story so similar to mine except it happened last week, last month, or last year I have to handle my anger and frustration. Tears fill my eyes. Now that I have identified the cause, I can find the tools to necessary to quell them.

Do the patient safety leaders hear me? Have I been too transparent? Or not transparent enough? Or, is transparency in American medicine a privilege reserved the privileged?

Abstract: Participation in clinical trials is dismally low. In this age of electronic sharing of information of all sorts, trial participants can easily share clinical trial data. The benefits of participant ownership and sharing of trial data appear to outweigh the risks. Thus, the time has come to crowd-source data for diagnostic and therapy development.

To download full article click here.

By Joanna Fief. About two years ago in the wee hours of the morning, I found myself in a local emergency room with severe stomach pain, incessant vomiting and dehydration.  It wasn’t pretty, and I was desperate for something – anything – to ease my pain and stop my vomiting. 

Gratefully, within minutes of receiving an IV with medications for pain and nausea, my symptoms subsided.  After a couple of blood tests that all came back normal, I was discharged.  The ER doctor said I probably just had a virus.  I wish …

Over the next six months, I lost 20 pounds, and had repeated bouts of stomach pain and vomiting.  After another ER visit, countless doctor visits, an ultrasound, an x-ray, a CT scan, an endoscopy and a gastric emptying study, I was diagnosed with gastroparesis.  Gastroparesis is a disorder where food moves slowly – or sometimes not at all – through the stomach and digestive tract.

Thankfully, today my condition is well-managed, and I feel pretty good.  However, it took me until last month to finish paying my medical bills – and that’s with good insurance.  Although I definitely don’t mind paying for the care that I received, I do wish medical pricing was more straightforward and transparent.

My mother is a nurse and I work for a health insurance company. Until I got sick, I considered myself pretty savvy about the health care system.  Over the course of my medical journey, though, I realized even with “insider’s knowledge” it can be extremely difficult to navigate the system, know the right questions to ask, and make informed decisions about cost and quality of care.

Not until after I got my first emergency room bill did I find out that while the hospital was in-network, the doctor was out-of-network.  Only when I was lying on the gurney getting ready to be sedated for my endoscopy did it occur to me to ask the doctor how many of these procedures she had done (thankfully, more than 5,000).  And, not until a few months ago, did I even consider that I might have shopped around for the best price on a CT scan.  I always felt like I was one step behind. 

The new health reform law promises to change the health care experience and stem rising health care costs, but based on my experience, we shouldn’t underestimate the power each of us holds to drive that change.  If I had it to do over again, I would ask more questions about the cost and reason for each procedure – while there was still an opportunity to influence the outcome.  The questions might make others uncomfortable, or as I found, the answers might not be readily available, but it’s the best way to be your own advocate.

Learn from my experience.  When your doctor suggests going to the ER for a non-emergency x-ray just because it’s faster, you might think twice before going along with it.  Below are five simple questions from www.WhatsTheRealCost.com, a website dedicated to helping people make more informed health care cost decisions, you can ask to create options and protect your pocketbook.

1. How much does that cost? 
2. Is that really necessary? 
3. Is there a cheaper option? 
4. Is there a generic for that? 
5. Has anybody out there had this before?