Medical ethicists have made amazing contributions to health care.

They’re heroic in their fearless pursuit of better care for beings – especially the human ones. They seem never to forget that is what they do. They work on the edges of what we know and are usually ahead of what we believe. They poke and prod us to do better. God bless ‘em.

Bob Veatch – one of my very favorites – has written a brilliant new book¹ on the subject and I recommend it highly. It is a product of decades of deep thinking; he’s produced yet another gem.

Unfortunately, the title does not reflect the depth of his thinking; it’s far shallower than that.

The text pushes the edges of what we know and is ahead of what we can produce in health care today, but the title pushes it over the edge. I suspect some editor or publisher picked it. The Bob I read, have heard speak and have once met is better than that.

I recommend it as required reading for anyone – legislator, regulator, staff, advocate, clinician, institution, payer or reporter – involved in health reform. It is brilliant, thoughtfully constructed and engagingly-read.

So, why do I dislike the title? For two reasons:

First, I don’t see Bob arguing that the patient heals themselves – or even can. Rather, I hear him addressing the myriad of uncertainties that accompany any clinician-patient interaction, the complexity of the health care system we have produced and the lack of any one, clear culprit in the mess we face today. It is full of cautionary tales for those who think another set of regulations, EMRs and financial incentives will “fix” it all.

Second, my review of the history of healing says that no culture has ever believed that patients are healed ‘on their own.’ My read of today’s health care crisis agrees.

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Women should not die giving life. I’m pretty sure most of us in the U.S. and around the world are in agreement on that. And yet, tragically, more than half a million of the world’s women lose their lives during childbirth – a statistic that has held steady for over seven years. Here’s the shocker: We have the technology and the knowledge to save most of those women. So why aren’t we?

This week Pathfinder International and the John D. and Catherine T. MacArthur Foundation will discuss a new initiative that could reduce maternal mortality rates by more than 25%. They will be highlighting an innovative, low-cost, reusable technology to address postpartum hemorrhage – the leading cause of maternal deaths. The non-pneumatic anti-shock garment or “Life Wrap” can easily be used by health workers in the developing world (see the new technology in use here.) Pathfinder is focusing their initial efforts in India and Nigeria – two countries that account for more than one-third of all maternal deaths worldwide.

But technology – innovative or not – is only one part of the puzzle. Without adequate family planning programs in the developing world – and here in the U.S. – women will always be at unacceptably high risk of death, illness and disability. For elected officials to say that they are pro-life but to also say that women should not receive the very best reproductive health care information and services is hypocritical and deadly. Pregnancy, childbirth and children are among the very best experiences a woman can have…anywhere in the world. But she must have the knowledge and ability to choose when and how many children to have. Investing in family planning programs and in new technologies such as the anti-shock garment will finally begin to reduce the rate of maternal mortality in the developing world.

Once and for all, let’s eliminate the ideological labels we’ve each donned as armor and that create barriers to effective action. Let’s all just agree: Women should not have to die giving life.

This piece is cross-posted at The Huffington Post.

As the health care reform dialog speeds up and the possibility of a single payer system wanes, I find myself more fascinated by the subtle back-story than the predictable dialog. History informs. The last forty years or so, with the center piece of the end of the Cold War, we relegated the communist threat to pockets about the globe while the triumph of capitalism flourished. We had a great need to show that the free enterprise system, both politically and economically, was triumphant. We in the United States often called this democracy.

One expression of that process was the insistence that health care could be a commodity, a product one could market and sell, a service that would enter the hurly burly of competition and that this would make it a better product. Somewhat like lemmings to the sea, we in health care complied, introducing corporate refinements to our system of operations and governance, calling patients consumers and ourselves providers. We attempted to create appropriate metrics to demonstrate our engagement in the models of industrialized businesses. We got aboard.

Every few years I have an opportunity to seek health care services, happily for nothing life threatening, nonetheless experiences that take me into the “consumer” role of health care agencies, one who is purchasing a “product”. My most recent one was instructive. I was scheduled for an MRI and an MRA at a brand new community-sited imaging center.

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Heart disease is the number one killer of women. The problem is, women have different symptoms then men — so they often don’t realize they’re having a heart attack. The Queen of Hearts Foundation is co-hosting a women’s wellness seminar in Atlanta June 2 and 3 at the Crowne Plaza Hotel Atlanta Perimeter At Ravinia – (Address is: 4355 Ashford Dunwoody Rd NE, Atlanta – (888) 444-0401)

If you’re in Atlanta, the cost is only $10 — and it could save your life.

Queen of Hearts co-founders, Katy Atterbery and Carmen Perez, talked to Disruptive Women’s Wendy Grossman.

DW: Did you know each other before you started the foundation?

KA: We met while volunteering on a project regarding women and heart here in Atlanta in 2004. We formed the foundation in May 2005, and got our 501C3 status in July 2008. Carmen is the daughter of a man who has had open-heart surgery. And I, of course, am a multiple heart attack survivor.

DW: I read that you had several heart attacks in a week.

K.A.: I had three heart attacks in a five-day period.

DW: And you didn’t know you were having a heart attack?

K.A.: I had no idea. I had symptoms for six to eight months and ignored them. I was busy doing other things. I had a burning sensation in the pit of my stomach, a pain in the side of my neck, and a pain in the shoulder blade. Women symptomize differently than men (visit qohf.org and click on symptoms).

I never had a pain in my chest; I never had a numb left arm. I felt lousy, my skin tone was gray, I saw dots in front of my eyes. When I had the first heart attack, on Nov. 13, 1997 (a week after my 54th birthday) I was misdiagnosed as having an anxiety attack in the ER and they sent me home.

DW: Wow.

KA: I drove myself — which was a really stupid thing to do — but I didn’t know what was wrong. The second heart attack I had while co-chairing a fundraiser at my son’s school that Sunday night (Nov. 16.)

I wouldn’t let my husband take me back to the hospital because they told me nothing was wrong. I saw my internist that Monday who told me that I was over 50 and probably had acid reflux. He gave me a prescription for an upper GI series and said he’d call in a couple days. That night, I suffered a major myocardial infarction — which is a heart attack. I was throwing up and in excruciating pain.

My husband carried me back to the ER. Our son, Christopher, was a senior in high school and he had the flu. He was sick in bed and my husband — who traveled for business every week, by God’s gift was home that Monday. If he hadn’t been home, my son would have come upstairs that morning and found me dead. Because I never would have got to a phone, and he never would have heard a cry for help.

At the hospital, I lost consciousness and lay for over four hours with them insisting it was my gallbladder, before they called a cardiologist.

It wasn’t until the cardiologist did the cardiac blood enzyme test they knew I had a heart attack. (That is a blood test that detects the presents of certain enzymes your heart produces when under attack.) I was unconscious. They did a heart catheterization and a angioplasty and put a stent in my lower and anterior descending artery. The interesting thing is, 11 years ago when this happened, stents were brand new. So I have a surgical steel coil that is now embedded in the wall of my artery. (more…)

The following guest post is written by Melinna Giannini, President, CEO, and Founder of ABC Coding Solutions (formerly Alternative Link), who has worked in the health insurance industry since the 1980s. She is one of the nation’s leading experts on contracting, billing, and practice management for nursing and other forms of integrative healthcare. Melinna designed ABC codes to fill gaps in national code sets used for managing healthcare reimbursement and outcomes analysis.

The U.S. healthcare system can no longer rely on medicine as its primary form of healthcare. Our U.S. medical schools cannot increase the physician workforce fast enough to keep pace with population growth and the needs of baby boomers.

The physician workforce decreased from 772,000 doctors to 633,000 doctors since 2000. Significantly, the U.S. population grew by 50 million people since 2000. Care shortages, dramatic cost escalations and more people without insurance require immediate action.

Our nation can immediately increase care and reduce costs by maximizing direct patient access to the 2+ million healthcare professionals who are authorized and available to manage non-acute patient care. Rather than routing patients to physicians for non-acute care, we can route them to non-physicians who are legally authorized to manage care without oversight. This minor change in policy will free physicians to better manage acute care, provide patients with timely care and reduce physician oversight charges.

To make this change in our healthcare delivery model, certain government healthcare policies must be modified. For example, Medicare should eliminate its policy of disallowing direct reimbursement to advance practice nurses.

Non-physicians also need an infrastructure to bill public and private insurers for their services in order to:

• Reduce paperwork burdens and costs for both parties
• Increase the accuracy and speed of communications
• Protect providers and payers from fraudulent billing practices
• Identify effective options to more expensive medical care
• Help create more effective federal and state healthcare policies

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I wanted to let you all know about an excellent opportunity that has been presented to the National Hispanic Medical Association. NHMA has been invited to participate in the development of health care reform legislation for Senators Kennedy and Baucus, Congressmen Waxman, Rangel, and Miller and the Congressional Hispanic Caucus.

Their respective staff will be introducing and distributing their bills starting in June for public comment. We have been asked to submit our recommendations on reforming the system for inclusion into these bills by June 1st; this gives us a narrow window of three weeks or less to prepare a document for submission to congressional staff.

The magnitude of the debate is broad; Congress is asking us for specific strategies that respond to four topics: 1) the expansion of affordable insurance coverage that impacts favorably on Latinos; 2) the expansion of primary care services, integration of preventive medicine and recommended incentives to be responsive to the Latino patient; 3) how do we improve quality via the creation of culturally competent, CLAS, and Patient-Centered Medical Home primary care services; 4) how de we reform medical education to ensure the appropriate future workforce for achieving health care reform?

I invite you and your colleagues to join the NHMA Hispanic Provider Community Forum on Health Care Reform on our portal: www.hispanichealth.info to share your insights and recommendations for health care reform today.

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The AP and iVillage conducted a survey that concluded that more than half of the women they asked didn’t like their weight. And almost half aren’t thinking happy thoughts when they look in the mirror.

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Every ailment stems from improper aliment.
– Frederick Kaufman, “Love Yourself Thin”, Harper’s Magazine, January 2000

With all the chatter on the social media airwaves (Twitter, the blogosphere) surrounding e-patient activity and patient advocacy, I’d like to focus for a moment on what it actually means to be a ‘patient advocate.’

It’s important to note first that I’m examining the issue wearing both personal and professional goggles.

As a person with an ongoing ortho condition, I’ve acted as a self-advocate through repeated surgical procedures, rounds of physical therapy, and hospital stays over a 10 year stretch. Professionally, I’ve worked as a paid patient advocate in a small, acute-care community hospital setting. I now work in the online, Health 2.0 space as OrganizedWisdom’s first Chief Patient Advocate, and support additional international efforts to include ‘patient voices.’

First, let’s agree that all patient advocacy is NOT created equal.

There’s a marked difference between acting as a patient advocate for yourself and acting as a patient advocate for someone else.

The major difference? When you’re acting as a self-advocate in the healthcare system, it’s all about maximizing your own outcomes, protecting your own interests, and interacting with your care team to make sure that happens.

In either case, ‘owning’ the patient advocate identity involves acting as an aliment – a nourishing matrix providing supplemental support for the patient, who acts as the protagonist in her own health/life narrative.

When you’re someone else’s advocate, however, you have no control over her outcomes. I say that again, you have no control over the outcomes. Nor should you.

After all, this is not your life we’re talking about – it’s the person lying in the hospital bed.

Repeat after me: “When deciding whether or not to act as someone’s patient advocate, I must realize and acknowledge that I am a PARTICIPANT (supporting role) in this person’s health narrative. I am a part of their story at this time, NOT the author, NOR the main character. This is not about me.”

Patient advocacy (for someone else) is a SELFLESS, not a selfish act.

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Nearly 20 years ago, I had the opportunity to spend a summer working with the Congressional Caucus for Women’s Issues. Of course, I was absolutely thrilled when they asked me to support the introduction of the Women’s Health Equity Act. However, as I began to research the subject to prepare the fact sheets and advocacy materials to support the legislation, that excitement quickly turned to dismay.

As a bright-eyed college intern, I was shocked to learn about the underlying race and gender disparities within clinical trials and health research. I felt that same sense of disappointment when I started examining the race and ethnic disparities that remain in our health care delivery system today.

Kaiser Permanente recently ran a series of advertisements that highlighted the fact that despite the fact that our nation spends $2.5 trillion on health care, we leave more than 47 million uninsured (not to mention the 20+ million who are underinsured). Without the type of universal coverage that every other industrialized nation provides, our nation is forcing millions to forego care and get sicker.

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As we move into healthcare reform, it is a good time to consider how we define health. In a series of recent salons* across the country, Genetic Alliance Council and Staff have found that all roads lead to a discussion about how to define health.

Defining something is useful, especially when we are trying to understand each other.  As we begin, inevitably seek to make health small, and to find common ways to describe it.  In these very diverse salons, with individuals affected by disease, others with disability, and still others from companies, policy think tanks, academia and so on, it is not easy to express health in a manner that speaks for everyone.

Inevitably we begin with an absence of disease – but quickly the medicalization of health is too limiting for most of the salon participants.  In an attempt to understand the expansiveness of a non-medical model, it becomes difficult to contain health.  Therein lies the joy.  Health soars in such a conversation, and it is allowed to lose its boundaries.  It no longer requires an absence of disease, and that is so freeing.  In San Francisco’s salon, health was articulated best as JUSTICE.  And in Boston, it filled the room as WELL-BEING.

We begin with health, then we will move to ‘care’ and finally we can re-form it all.

Salons
As a means of transformative visioning, Genetic Alliance regularly holds salons, similar to the 17th – 19th century gatherings of intellectuals and other eminent individuals. In our case, individuals are not chosen for their expertise or the expansiveness of their resumes, but for their characters and their reputations as open-minded, curious, and willing to explore all sides of a given issue. Salons are fueled by the mechanism of open space, allowing unfettered thought and discussion; we leave our certitude and intellectual property at the door. Through our conversation, we realize more than any one of us could have done alone. This is our chief aim: transformative knowledge through conversation with others. We have held several of these salons. The salons are an increasingly useful way to practice openness and transformation; dynamic interaction around rigorous topics inevitably leads to disruptive and exciting solutions.

Upcoming salons: http://www.geneticalliance.org/ws_display.asp?filter={0C94D727-0E7A-44E5-8FC2-5D7E06FA5445}

Alisa Savoretti is a former Vegas show girl who lost her breasts to cancer. She didn’t have health insurance and it was two years before she could afford to rebuild her chest. She founded My Hope Chest, a non-profit to help other uninsured women get their breasts back. Right now, she’s trying to rebuild her charity’s board, and get other Disruptive Women involved. She needs your help.

Disruptive Women’s Wendy Grossman spoke to Alisa Savoretti about My Hope Chest.

DW: Why did you create my Hope Chest?

AS: I created my hope chest out of my own need — realizing there is a gap in treatment for breast cancer survivors that’s not being addressed. I had to live over two years as a young, single woman without my breasts. I was an entrepreneur. I didn’t work for anyone that provided me insurance and I said, ‘I can’t be the only one.’

Six years later, we proved that there are thousands of women. Thousands.

There are women who are grossly disfigured and deformed. They didn’t get a good general surgeon to remove their breasts, which may have left terrible scarring. Or they had to go through extensive radiation that made their skin not very pliable to get an easy reconstruction. It’s resulted in affecting their personalities.

DW: What happened to you?

AS: Your sense of self-esteem is gone down the drain. You’re looking in the mirror and you’re like, ‘I’m not whole in body, mind or spirit.’

My hope chest, I feel, is for those who desire the final step in breast cancer treatment. Helping to restore a woman’s self-esteem, self-worth and dignity, to return to her former self.

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Disruptive Women is pleased to introduce you to our May Man of the Month—Charlie Inlander. You can read all about Charlie’s remarkable career and learn from his astute insights and observations as Glenna Crooks sits down and talks to Charlie. Enjoy the conversation. Let us know if you agree with Charlie’s answers.

I’d like everyone to meet Charles “Charlie” Inlander. Charlie is currently an international health marketing, media and communications consultant and was formerly the President of the nonprofit People’s Medical Society.

He is a faculty lecturer at Yale University School of Medicine, an adjunct faculty member at the Chicago-Kent College of Law, a Fellow of the Institute for Science, Law and Technology at the Illinois Institute of Technology and on Public Radio International’s MARKETPLACE and has appeared on programs including Oprah, Donahue, Today, Good Morning America, Dateline NBC, 48 Hours, 20/20, Geraldo, NBC Evening News, CBS Evening News, ABC Evening News, and The News Hour with Jim Lehrer.

He is a founder of the Civil Justice Foundation and serves, or has served, on the boards of Consumers for Civil Justice, the National League for Nursing and the Pennsylvania League for Nursing, and advisory boards of the Citizen Advocacy Center, the Primary Care Management Association, the American Academy of Family Physicians, HealthMarket and Bottom Line/Personal publications. He was a columnist in Nursing Economics and a contributing editor for Medical Self-Care magazine. He has authored over a hundred books for health care consumers and articles regularly appear in such publications as The New York Times, Glamour, and Boardroom.

Charlie and I share Midwestern, Chicago-area roots, but that’s not why I like him so much. Yes, he’s smart, but he’s also nice. I mean that. He’s nice. Charlie and I don’t agree on everything but I know when we disagree, that’s he’s coming from “a good place” of true advocacy origins. There is not a mean bone in his body – which, above all, is probably the secret of his effectiveness. Charlie can deliver the toughest messages you might not want to hear, but you’ll like him while he’s doing it. There is something wonderful in his heart that shines through.
I hope you enjoy meeting him in this interview as much I’ve enjoyed knowing him.

Charlie,

It is so great to be able to talk with you for this Disruptive Women forum. We’ve never had a dull conversation and I know you won’t disappoint me this time, either. You were involved in advocacy long before me, I’ve learned much from you and want to talk with you about three issues today: first, your experience as an advocate; second, how today’s advocacy is different; and third, about your views on the current state of play in national health care today.

First, about your experience in advocacy generally.

Q. It’s an ‘interesting time.’ You’re the advocate’s advocate. What’s your advice to advocates for patients today?

A. Put yourself in the patient/consumer’s shoes. I learned at a young age that my experiences and views were not always the same as those I wanted to help. For example, I came from an upper middle class family and grew up in the nicest suburbs of Chicago. As a teenager in the early 1960’s I was involved with the civil rights movement, going into the inner city to work with kids in those neighborhoods. We would help them with school work, volunteer at community building programs, etc. But I saw that most of the time, we were doing the work for them instead of teaching them skills we had. And, of course, we left each day and went back to our suburbs. They still had to cope with their environment. From that, I realized that the most effective advocates are those who empower the people for whom they advocate – teaching them the skills, know-how or information necessary to take on the challenges they face.

Then in 1965, when I came to Washington, DC for college, I became involved with civil rights issues there and the anti-war movement. At the time, I thought my best skills were as an effective organizer and speaker and tried to pass those along. I never felt that just going to a march or protest meeting was enough. I believe that if you are taking on a cause, your job is to help win over as many supporters as possible so that even if you are not there, they can fight the battle on their own.

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Swine flu is sweeping the country — it’s on every news channel. Every five minutes it feels like there’s a new confirmed case. And once a school has a confirmed case, the CDC suggests it be shut down for two weeks.

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According to local news, PETA sent a letter to Penn Health System CEO Ralph Muller urging him to follow the lead of hospitals in England, reducing their carbon footprint and improving patient health by eliminating the availability of meat for patients, visitors and employees.

HUP is one of my local hospitals; a place where friends have been treated for cancers, and last month, for heart failure. It’s got a big footprint in this town and I’m glad it was there for my friends.

If my hospital got a letter, maybe yours did, too.

A hospital spokesperson says they’ve not received the letter, but if CEO Muller wants my reaction – here goes.

Please don’t. I have five reasons:

Reason #1: Personal experience. I’ve been a vegetarian for nearly 40 years. It was not an easy transition to make and not an easy lifestyle to live even though I was already – and still am – healthy, highly motivated and made the choice voluntarily.

• The physical impact of the transition took a year and was rough sledding. I can’t imagine asking a person as ill as those recently hospitalized to take that on.
• The skill challenge is substantial, entails difficult re-learning and supports for doing so today are only slightly better than decades ago. In 40 years of care by a number of different physicians – including some who were vegetarians themselves – it was only recently that one took the negative health consequences serious, explored – and found – an important deficiency in my diet, for example. Vegetarian cook books have beautiful covers and great recipes, but few covers show – and few recipes guide – adequate alternative protein sources for a lifetime.
• The genetic challenge cannot be ignored. Genetics play a role in nutritional needs and some people – the Dali Lama, for example – will never be able to successfully make the transition.
• The practical challenges are many. For anyone who travels, does not or cannot cook or readily control food choices, it’s hell. Airline, banquet and restaurant meal planners are not savvy about how to provide non-meat alternatives and I was eventually forced to return to fish for protein. Men I know who do physical labor say that despite their best efforts, vegetarian diets have not satisfied the physical demands that labor requires.
• Finally, it can complicate life with other chronic conditions. For me, it came five years ago as my Irish genetic ancestral predisposition to celiac showed up – as it can later in life. All that good whole grains if wheat, barley and rye I was eating were, in fact, killing me. I easily adjusted to this new condition for at-home meals, but it complicates an already challenging dietary life style in travel and social situations.

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This week, after the Senate confirmed Governor Kathleen Sebelius (D-KS) as HHS Secretary, HHS announced the establishment of two new health IT committees in the department. Jason Miller of FederalNewsRadio reported:

HHS announced [Wednesday] in the Federal Register that the Health IT policy committee would recommend a policy framework to develop and adopt nationwide infrastructure to permit the electronic exchange of health information.
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The Health IT standards committee would make recommendations around data and technology standards, implementation specifications and certification criteria for the electronic exchange and use of health records.
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Previously, HHS had similar committees addressing policy and standards. But the Recovery Act, which included more than $19 billion for health IT, required HHS establish these new committees with a different makeup.

(See the complete article for more details about membership of the committees.)

The HHS Department’s focus on health IT this week also included a two-day hearing on “Meaninful Use” of Health Information Technology, hosted by the National Committee on Vital and Health Statistics. It’s no surprise, then, that Health IT and the “meaning of meaningful use” have dominated health discussions around the Web this week.

Josh Seidman on the Center for Information Therapy blog highlighted two organization’s issue statements regarding meaningful use:

The [Markle Foundation] statement appropriately highlights patient access to clinically relevant electronic information. It could further by clarifying that such information should be accessible to consumers in a way that they can understand and use it, and also that facilitates action on their part, or as [the Consumer Partnership for eHealth (CPeH)] puts it, “access their personal health information, receive prompts and reminders, and use patient decision support without sacrificing privacy.”

These patient-centered definitions of meaningful use are critically important for ensuring that ARRA HIT provisions actually change how health care is delivered in this country.

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