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

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

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

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

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

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

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

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

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

The rally is timed to coincide with a weekend when most of us are with the very people with whom we should be having these unbelievably important conversations – our closest friends and family.

At the heart of Engage With Grace are five questions designed to get the conversation about end-of-life started. We’ve included them at the end of this post.  They’re not easy questions, but they are important – and believe it or not, most people find they actually enjoy discussing their answers with loved ones.  The key is having the conversation before it’s too late.

This past year has done so much to support our mission to get more and more people talking about their end-of-life wishes. We’ve heard stories with happy endings … and stories with endings that could’ve (and should’ve) been better. We’ve stared down political opposition.  We’ve supported each other’s efforts.  And we’ve helped make this a topic of national importance.

So in the spirit of the upcoming Thanksgiving weekend, we’d like to highlight some things for which we’re grateful.  

Thank you to Atul Gawande for writing such a fiercely intelligent and compelling piece on “letting go” – it is a work of art, and a must read. 

Thank you to whomever perpetuated the myth of “death panels” for putting a fine point on all the things we don’t stand for, and in the process,  shining a light on the right we all have to live our lives with intent – right through to the end.

Thank you to TEDMED for letting us share our story and our vision. 

And of course, thank you to everyone who has taken this topic so seriously, and to all who have  done so much to spread the word, including sharing The One Slide.

We share our thanks with you, and we ask that you share this slide with your family, friends, and followers. Know the answers for yourself, know the answers for your loved ones, and appoint an advocate who can make sure those wishes get honored – it’s something we think you’ll be thankful for when it matters most.  

Here’s to a holiday filled with joy – and as we engage in conversation with the ones we love, we engage with grace.

To learn more please go to www.engagewithgrace.org.

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!

For many years now, I’ve written on this subject with Dr. Joanne Lynn, a geriatrician and hospice physician. In our book, Handbook for Mortals: Guidance for People Facing Serious Illness, we talk about the living with/dying of conundrum. Americans like to talk about “the dying” as if they were a different sort of person, in contrast to the rest of us, whom Joanne characterizes as the “temporarily immortal.” Once someone has been labeled as dying, we expect him or her to go about the business of doing just that: taking to bed, saying farewells, making peace with God, signing up for hospice, giving up daily routines and purpose. We think of the dying as a distinct group, with different interests, and an entirely different role to play in this life.

The fact is, for Boomers like Jobs, we will spend many years dying of something. Nearly 80 million of us are aging together, and along the way, we will accumulate illnesses of old age: heart disease, cancer, and Alzheimer’s. Thanks to modern medicine and public health, we will live for a long time with what have become chronic conditions. Where these diseases once killed swiftly and uniformly, they are now chronic conditions with which we live—and from which we die.

Even people who work routinely with “the dying” are loath to use the term. Last summer, I was at a briefing to talk about what Americans understood about palliative care, a medical discipline that steps in with comfort and symptom relief at any point along the disease continuum, from diagnosis to death. Most often, palliative care services are called in for people who are living with what will prove to be a fatal illness—but they are also appropriate for people living with serious, chronic conditions.

At last summer’s briefing, a pollster urged attendees not to use the words “terminal illness” or “advanced illness,” word s that people he had surveyed associated with death and dying. Talking about death and dying makes it almost impossible to talk to people about what else matters in their lives: symptom control, affordable care, sustainable resources, family support.  When the leaders in palliative medicine recognize that death talk is just that—it puts a stop to the conversation—it is no wonder that individuals do the same.

Steve Jobs did not want to be a poster boy for the dying.  But he did confront his own mortality. There’s his famous Stanford commencement address, and the anecdotes coming to us now from his biographer, Walter Isaacson. He worried that perhaps there was just an “off switch,” a click into the void. He sometimes believed in God, and sometimes did not. He got up most days, put on his black turtleneck and jeans, and went to work.  Who was to say which day would be his last?

There are problems with prognosis, and even the most skilled physician struggles with it. In one study of nearly 10,000 seriously ill hospitalized patients, nearly half of the patients died within six months of enrollment in the study. But the best medical predictions by statistical methods and the patients’ own doctors had trouble figuring out just who was dying. One week before death, the average patient still had a 40% chance of living another six months. The day before death, the average patient still had a 10% chance of living another six months. It’s a tough decision to make.

In our work, we’ve come to encourage physicians to approach the issue differently, and to ask themselves if they’d be surprised if a patient were to die within the next six months. If not, we suggest that other health care options, including palliative care and hospice, be considered.

Steve Croft was aghast when he heard about Jobs’ seeming “magical thinking.” “How,” he asked. “Could such a smart man be so stupid?” This, upon hearing that Jobs had delayed what might have proven to have been lifesaving surgery early in the course of his disease. It’s not a fair question. Sure, how could someone we think of as a visionary have such feet of clay? Because, like the rest of us, he was only passing through.  None of us wants a passport stamped for the country of the dying, but many of us will live there for a long time on a visa.

Recently, I interviewed Kerry Kennedy, President of the Robert F. Kennedy Center for Justice and Human Rights, about the recent launch of Health eVillages. This initiative aims to bring mobile medical reference and decision support technology to clinicians fighting to save lives in underserved regions worldwide.

Kennedy is the author of The New York Times best seller “Being Catholic Now: Prominent Americans talk about Change in the Church and the Quest for Meaning,” published by Crown Books/Random House in September 2008, and “Speak Truth to Power: Human Rights Defenders Who Are Changing Our World,” (Random House, 2000). Ms. Kennedy started working in the field of human rights in 1981, when she investigated abuses committed by U.S. immigration officials against refugees from El Salvador. Since then, her life has been devoted to the pursuit of justice, to the promotion and protection of basic rights, and to the preservation of the rule of law. She established the Robert F. Kennedy Center for Human Rights in 1988. She has led over 50 human rights delegations around the globe.

Rahim Kanani: What is Health eVillages?

Kerry Kennedy: Health eVillages is an amazing new coalition of healthcare and human rights advocacy groups that’s dedicated to bringing adequate healthcare to poor, remote and underserved areas around the globe through the latest mobile device technology.

Through contributions, we secure new and refurbished mobile phone and handheld devices, load them with the latest in clinical decision support technology, and get these devices to healthcare professionals who are on the ground providing public health services where it’s most desperately needed. These devices allow them to quickly access the latest information on every disease in common medical texts, for example, to assist in diagnosing and treating patients in even in the most remote regions.

The Health eVillages consortium is made up of leading international healthcare advocacy organizations, mobile healthcare solutions providers, health information technology companies, communications providers, and public health foundations. The RFK Center is part of this contsortium because our organization has been working for four decades on the cutting-edge of social change with human rights activists around the world, and the Health eVillages initiative brings the latest technology to our efforts to ensure that the neediest people around the globe have access to adequate healthcare, a fundamental human right.

Rahim Kanani: In which areas of the world has this initiative been piloted, and what kind of impact has it had?

Kerry Kennedy: To date, the organization has conducted pilot programs in several regions, including in Haiti, Uganda, the Greater Gulf Coast, and Lwala, Kenya. Because Health eVillages is a new program, very much in the pilot phase, we’re still in the process of collecting detailed feedback and data on the outcomes of these devices; however, the initial feedback has been overwhelmingly positive.  We know we will need to alter the program in some cases – in the case of Uganda, we plan on adding solar charging skins to the devices so they can be used during medical outreach trips in rural areas – but we believe the model works well in many cases.

Rahim Kanani: When did you first test this technology?

Kerry Kennedy: The first time we really tested this technology was soon after the earthquake in Haiti.  I traveled to Haiti on a human rights mission, and Donato Tramuto, the CEO and vice chairman of Physicians Interactive Holdings, provided me with several of these phones. Donato also sent a half-dozen of the devices to Haiti with physicians and nurses. The response was extremely encouraging – and this is really how the idea for Health eVillages was formed.

Rahim Kanani: What are some of the limitations of this approach?

Kerry Kennedy: Language is a major limitation, of course.  We are currently in discussions with an organization that has developed incredible new technology that has the ability to translate software into a number of different languages.  This would allow for greater use of our software, which is currently available in only a few languages. We also recognize that smart phones with medical reference software are not the best solution in every setting. Much progress has been made using standard mobile phones and texting technology.  Organizations like Partners in Health have also made great strides at developing software for community health workers – workers who do not have the clinical background necessary to use our software.  However, we have identified a clear and certain need for our solution in a vast number of scenarios, and we hope to bring this program to as many practitioners as we can over the coming years.

Rahim Kanani: Where do we go from here?

Kerry Kennedy: We are in discussions with hardware partners to grow this program.  We are also looking into partnership opportunities with large, international aid groups to deploy these devices to their participating medical practitioners.  For now, we are very focused on refining the program and collecting strong, detailed feedback on what is working and what is not.

Rahim Kanani: How would you connect this initiative to the realization of fundamental human rights?

Kerry Kennedy: Article 25 of the Universal Declaration of Human Rights recognizes the right to healthcare for every man, woman and child.  We believe that this program will allow for greater access to quality healthcare for people who need it most.

Rahim Kanani is a writer, interviewer, advocate, strategist and entrepreneur for global social change. His articles, opinions, and interviews with global leaders can be found at www.rahimkanani.com. In addition, you can follow him on Facebook and Twitter.

According to the study published in the journal Health Services Research, 21 percent of American adults said they had delayed care for non-financial reasons compared to 19 percent that cited cost as the primary reason for not seeking healthcare.

Those non-financial reasons included not being able to get to a doctor’s office during working hours, long commutes to the medical office, or not being able to get an appointment soon enough.  As the study’s lead author said, “In reality, there are all kinds of reasons why people can’t get the care they need when they need it.”

There are at least a couple of important points to take from this report.  One is that healthcare providers have to continue exploring creative ways, from telemedicine to non-traditional office hours, to meet the needs of today’s patient population.

More importantly, though, as we’ve said often over the past several months, coverage and access are not synonymous with each other.  The Affordable Care Act makes health coverage available to all Americans, but that doesn’t mean that all of these newly-insured patients will have easy access to quality care.  If some patients today, as the study indicates, have difficulty getting an immediate appointment with a physician, that problem may only worsen when an influx of new patients, the aging of the baby boom generation and a future shortage of healthcare professionals converge.

Eleanor Clift

Veteran reporter Eleanor Clift wrote the essay Hospice And The ‘End Game’ after her husband’s death from cancer. In it she concludes that hospice “should be front and center in the debate over the kind of health care future that we want.” Disruptive Women plans to cover the topic of hospice, end of life and caregiving next year, so stay tuned.

Read the essay here.  To listen to a podcast of the essay click here.

The essay appears in Health Affairs‘ August 2011 issue.

This is not a new concept: ten years ago, the IOM’s seminal report, Crossing the Quality Chasm: A New Health System for the 21st Century, called for “patient-centeredness.”

What is patient-centered care? Bertakis and Azari call out four communication behaviors:

1. Eliciting understanding and validating the patients’ perspective
2. Understanding the patient within his or her psychosocial context
3. Reaching a shared understanding with the patient of the problem and its treatment
4. Creating a partnership in which “activated” patients share in decision making, power and responsibility.

These four precepts were codified in a 2007 publication from the National Cancer Institute, Patient-centered communication in cancer care: promoting healing and reducing suffering.

Health Populi’s Hot Points: Adopting a patient-centered approach isn’t solely about reducing health care costs: it’s about patient empowerment, effective communication between doctor and patient, and participatory medicine. The secret in this sauce is in the communication between the partners: greater sharing of information from each side of the conversation, building greater trust, and leading to a decreased use of unnecessary diagnostic testing, hospital care, and specialty referrals. While long-term outcomes haven’t yet been quantified in the patient-centric approach, this study adds to the growing evidence base that participatory medicine is a win for the patient, a win for the physician, and a win for the larger health system and health economics.

Originally posted on Health Populi on July 19th.

Over the next year, 10 million people will likely be scored (without their knowing it, by the way) within a rage of 0-500. Those over 400 would be deemed ‘likely’ to use medication appropriately; those with lower scores would receive calls, cards, letters or some other intervention to boost their rates of adherence.

Halfway into the article, my HIPAA-involved policy-wonk self went bonkers. True, they don’t use medical records information but the fact that without consumers knowing it FICO can amass and organize other public information such as home and automobile ownership, job status, marital status, age and gender, then show payers how the weights of those factors vary by diagnosis enlightened me about the power of data mash-ups. Truth be told, it worried me as well. Who knew?

Wondering if the premise was even valid and also about a surprising finding from FICO’s work that women adhere to medication regimens less often than men, I called my guru on ‘all things adherence,’ Diana Long, to inquire.

She said FICO might, in fact, be ‘on to something’ saying that we in health care have been myopic about patients’ behavior. We think it’s ‘all about us’ and don’t consider that not taking meds or following doctors’ advice might be a reflection of factors other than how sick we felt, what side-effects we feared or what costs we bore. She pointed out, for example, that just because a child knows how to use an inhaler does not mean they have mastered the strategic thinking/planning required to remember that tonight is the night for soccer practice, they should ‘plan ahead’ and take the inhaler to school that morning. The factors we develop as we grow up  – including skill and motivation – to get up for a job every day may be the same factors that determine whether we’ll take our meds, eat right or exercise.

But what about women’s lower rates of adherence? Here is where ‘too much of a good thing,’ can backfire, in this case for the woman. Diana reminded me of a time she preceded me in a speech. She arrived on stage with a basket and proceeded to unpack it, demonstrated what she – as Dr. Mom – managed vis a vis medications for her:

• Two young sons,
• Dog,
• Husband,
• Husband’s parents, and
• Husband’s Grandfather.

She managed medications for herself and also for six other people – and four generations – of the family…oh, and the dog.

She reminded me of the data…most women also manage the household. And they also have jobs. Eventually, that gets to be ‘too much’ and the consequence is often her failure to take care of herself.

This is a holiday weekend and it’s too late now, but for tomorrow and the future, I’m hoping all the Dr. Mom’s reading this will remember to move themselves further up on the ‘to do’ list.

If for no other reason, do it so that you won’t have the extra hassle of fending off a set of dunning reminders to do so which may soon come our way.

By Elizabeth Cohen. As much as she would like to, Dr. Lissa Rankin, a gynecologist, will never forget the woman who planned her wedding while lying naked on her examining table.

“Every 15 seconds, her cell phone was going off, and she was answering it!” Rankin recalls. “It was like, ‘That’s not the cake I ordered,’ and, ‘No, it’s the other gown,’ and I said to her, ‘Is this a bad time? Should I come back later?’ ”

The bride may have been doing great things for her wedding, but she was sabotaging her own care — and it was a really important visit, as she was newly pregnant.

Talking on your cell phone in the examining room, forgetting what medicines you take and lying to your doctor about your personal health habits are all ways of compromising your health.

“The doctor-patient relationship is like a business partnership,” Rankin says. “We need to work together. Trust me to guide you but be willing to do your part.”

From interviews with a gynecologist, a cardiologist, a rehabilitative medicine specialist, a fertility doctor and an internist, here are the Top 10 things patients do to mess up their own care.

1. You talk on your cell phone.

This is your health we’re talking about. Other calls can wait. Turn the thing off.

2. You lie.

“I need to treat you the best way I can, so if you’re gay, tell me. If you drink a bottle of tequila every night, I need to know. If you’re having an affair and not using condoms, let me know,” says Rankin, who blogs at “Owning Pink.” “I promise I won’t judge you.”

3. You do a sloppy job describing your pain.

Is it stabbing or burning? Sudden or constant? Tingling or hot? The answers will help your doctor make the right diagnosis.

“You should describe the exact location, how intense the pain was, what provoked it and how long it lasted,” says Dr. Nieca Goldberg, director of the New York University Women’s Heart Program.

The week before your appointment, keep a diary of your pain and your other symptoms, too, advises Dr. Loren Fishman, a clinical professor of rehabilitative medicine at Columbia University College of Physicians and Surgeons. He suggests using this time to also think about the questions you want to ask your doctor and what you hope to get out of your appointment.

4. You don’t state up front all the reasons for your visit.

If your ear hurts, your knee pops out when you run and you have a sty in your eye, state all three concerns at the beginning of the appointment so your doctor can plan your visit efficiently, advises Dr. Howard Beckman, an internist and clinical professor of medicine at the University of Rochester.

5. You don’t state up front your expectations for your visit.

If you have certain hopes or expectations — the doctor will pop that sty in your eye or prescribe antibiotics for your sore ear — say so. The doctor can then explain if your expectations are realistic, and you’ll be happier in the end.

“Sometimes patients are out of proportion to what the reality is, like the 44-year-old woman who hopes to get pregnant in one IVF cycle,” says Dr. Jamie Grifo, program director of the New York University Fertility Center. “If they don’t communicate their expectations, then I can’t address them.”

6. You don’t know what medications you’re taking.

“Patients should bring a list of medications they’re actually taking, not what they believe they are supposed to be taking, or what they think I want them to take,” Beckman advises.

If you take supplements, Rankin suggests you bring them in, since supplements aren’t standardized like prescription drugs, and your doctor will want to see all the ingredients.

7. You leave with unspoken questions and concerns.

If a question’s in your head, ask it, even if you think the doctor is rushed. If you’re worried your headache might be a brain tumor, say it even if you think you sound like a hypochondriac.

8. You don’t bring your medical records or images with you.

Yes, even in this day and age, many doctors rely on the fax machine to send medical records to and fro. Faxes goof up, so unless you absolutely, positively know your doctor has your records and images from another office, bring them with you, doctors advise.

9. You’re too scared to disagree with your doctor.

If your doctor suggests you need an antidepressant and you don’t want to take it, say so instead of nodding your head, taking the prescription and throwing it away the minute you’re out the door. Or if she suggests a medication you can’t afford, just say so.

“I know many of you are programmed not to question your doctor, but we can’t read your mind, so we need you to communicate,” Rankin says. “If the treatment plan I suggest doesn’t resonate with the intuitive wisdom of your Inner Healer, please tell me, instead of ignoring what I suggest.”

10. You don’t comply with the treatment plan.

For doctors, this is the granddaddy of them all. If you’ve followed all the advice above, you should have a treatment plan that makes sense to you and one you’re able to execute.

“Please follow through and do what you’ve agreed to do,” Rankin says. “And if you don’t, please tell me so I don’t mistakenly assume the treatment failed. I won’t jump all over you. I just need to know.”

This trend makes companies like Allergan, makers of Botox and the Lap-Band for gastric surgery, very happy indeed. Plastics and gastric bypass surgeries are back up to pre-recession levels as of 2Q11.

However, for companies and providers in other segments of the health care and surgery value-chain, prospects for bounceback in 2011 aren’t as promising. Various indices on consumers’ health care sentiment — such as the Thomson-Reuters Consumer Healthcare Sentiment Index and the EBRI Health Confidence Survey, show U.S. consumers’ perceptions of their ability to pay for needed health care falling.

Health Populi’s Hot Points:  The Reuters story shows the chasm in U.S. health consumers’ mindsets between their “health” and “health care.” In the past 50 years, health ‘care’ has been an entitlement largely covered by health insurance, at or close to 100% with minimal co-payments, coinsurance, and premium sharing. In the past decade, however, enrollee out-of-pocket costs have skyrocketed, with the average employee covered for a family of 4 now paying about 40% of health costs, according to the 2011 Milliman Medical Index, explained here in Health Populi.

Furthermore, Kaiser Family Foundation continues to track peoples’ self-rationing due to health costs. In their April 2011, tracking survey, 1 in 2 U.S. adults was seen to still cut pills in half, postpone recommended medical tests, delay dental care, and health “mis-behave” in other ways. Note that these are all self-rationing behaviors for health “care” issues.

So as we may skinny down our waistlines and de-wrinkle, our cancer diagnoses get delayed, costing us as patients precious time; our bank accounts, HSAs and health plan sponsors higher costs; and, diminishing public health. This scenario needs a good nudge toward value-based health plan design and positive consumer health behavior. Furthermore, health citizens need to connect-the-dots between prevention and outcomes, as well as whole health — that today’s health micro-choices bolster outcomes and quality of life for the long-term.

Originially posted on Health Populi on May 16th.

This column has been part of our family’s Sunday morning ritual since it started being published 12 years ago. Bagels, lox, coffee…and… The Ethicist column. We all knew the routine

1.Archelle reads the dilemma. Twice.
2.Each daughter, youngest to oldest, must take a definitive position and defend it with clear rationale (yes, even Zoe is included in the lineup)
3.David, then Archelle, declare their positions. (I always go last since I seem to have the strongest opinion and don’t want to influence everyone else.)
4.Family debate…aka…we argue.
5.Once we’re exhausted or reach an impasse, we read Cohen’s expert opinion.

This discussion, every Sunday, week after week, was valuable for teaching the girls a process for deciding between right and wrong. The everyday scenarios that Cohen presented were a non-threatening way to proactively work through many of the seductive temptations that they would inevitably face later in their lives.

From December 2002: Is it okay to Google some one you’ve started dating to check up on them?  SN, New York
In 2002, this was a dilemma. In 2011, this seems like a no-brainer. 

From May 2004: I am an American posted to Vietnam, where pirated movies on DVD are cheap and ubiquitous, and legitimate copies are nearly nonexistent. Would it be ethical to purchase pirated DVD’s if I also join a monthly unlimited-rental service like Netflix? Ben Moeling, Hanoi, Vietnam
Arielle found herself with this exact dilemma as she spends the year in China.

From September 2007: A friend and I will soon take the LSAT.  His father, a psychiatrist, gave him Adderall to help him take the test. I asked if he could share some with me, and he said that would be unethical. Is it? Isn’t his dad’s giving him the Adderall unethical? Name Withheld, Austin, Tex.
The sharing of Adderall on college campuses is rampant.

The lifelong impact of this column became evident in 2005 when Athena was preparing for her Bat Mitzvah and matter of factly announced to us and the Rabbi that she wasn’t sure whether she believed in God. Since God and religion are merely a construct for moral/ethical decision-making, we were unconcerned about whether she believed in “God” but were very concerned that she develops a solid framework for distinguishing right from wrong.

Cohen’s ethics column was a non-threatening, familiar vehicle for helping Athena navigate through the process of maturing her moral framework. After 10 months, Athena developed her own set of “ethical decision guidelines” that she proudly shared in her Bat Mitzvah speech with our 130 guests: When faced with a dilemma, avoid decisions/actions that:

•are against the law
•don’t give you a good gut feeling
•you wouldn’t be proud to tell your mom
•you wouldn’t want on the front page of the Wall Street Journal

Making ethical decisions is learned, not innate. It’s a skill, not a talent. It takes practice and improves with feedback, debate, and, most importantly, self-reflection. It requires that you look at your own actions and honestly assess your intentions.

Is it ethical to sign an employment non-compete without really intending to honor it since its unlikely to be enforceable anyway?

Is it ethical to use ICD-9 codes that are not accurate but that assure a patient’s medical services will be reimbursed?

Is it ethical to accept a Senior Discount when a hotel clerk mistakenly assumes you are over 65?

Is it ethical to have dinner with a friend when on a business trip and then submit the entire restaurant bill as a business expense?

What decisions would you make in these scenarios?  Some may seem so innocent…but are they?

Cohen may be retiring his column but his dilemmas are very alive on the New York Times website. Read them. Debate them. Help your kids mature their moral maturity and continue to refine your own. We all need probably need some help in this arena. It’s a process that never ends.

Originally posted on Archelle on Health on March 3rd.

“Morning Glory” starring Rachel McAdams, Diane Keaton, and Harrison Ford is a wonderfully funny movie about the behind the scenes challenges in broadcast news. McAdams plays Becky Fuller, an executive producer charged with revitalizing a failing morning news program. The painfully accurate reality depicted in the movie is that news outlets live and die by their ratings so that we, the viewers, can get the news for free.

So who pays for it? Broadcast, print and web news media is supported by advertising revenue, and the basic business model is straightforward:

• News attracts viewers.
• Number of viewers is monetized.
• News outlet sells advertising space/time to marketers.
• The more viewers there are, the more a media outlet can charge for an ad.

The bottom line is that Viewers = Revenue.

Retaining viewers/readers ultimately requires that media outlets deliver information that is timely, accurate, well-balanced, and engaging. However, attracting them requires that outlets successfully break through the morass of news noise. How do they do that? By grabbing our attention with clever, dramatic headlines and teasing viewers/readers with lead-ins and headlines that are unexpected, outlandish, and extreme. It is a bait and hook strategy that works.

Here’s the problem: Too often, we don’t have the time to read or listen to an entire news clip or article. We merely rely on the headline and, subsequently, we become misinformed. And, when there is misinformation about health-related issues, this can lead to poor outcomes, higher cost, and, very commonly, patient confusion, frustration and disappointment.

Here a few examples:

Headline: “Study Pins Alcohol as More Dangerous Than Crack or Heroin”

Facts: This Lancet-published study evaluated 20 different drugs including cocaine, heroin, ecstasy and marijuana. Each was ranked on three dimensions: physical harm to the individual user, addiction potential, and the societal effect of the substance. The study clearly showed that an individual level, cocaine and heroine are most harmful. But, since alcohol abuse is so prevalent in the population, its high societal impact score inflated the overall score above that of all the other substances. Hence, the headline.

By the way, the author of the article is Professor David Nutt, a former U.K. drug czar who is using the study to argue that the regulatory classification of substances should use an evidence-based rather than a historical approach rather. This was a political article in drag.

The vast majority of online outlets including ABC, CBS, and FOX, had a headline similar to the one in Time, but kudos to The Boston Herald for their responsible but still eye-catching headline: “Dangers of Abuse Sobering.”

Headline: “Botox a Cure for Migraines?”

For the 3.2 million people who suffer with migraine headaches, this headline created a groundswell of hope.

Facts: In this study, Botox for migraines was only tested in patients with 15 or more days of headaches per month. There was no difference in the number of headaches, but treated patients had 1.4 fewer headache days per month. For effectiveness, each quarterly treatment session requires 31 injections of Botox, and the annual cost is about $4000 per year. Individuals with chronic migraines may get some relief with Botox but it is certainly not a silver bullet or a “cure for migraines.” While Botox can be used off-label for those with less frequent migraines, it has not been studied and it is unlikely to be covered by insurance.

Oh, by the way….the new migraine indication for Botox is estimated to add $1 billion to Allergan’s top line within five years.

Headline: “New ‘Vaccine’ for Prostate Cancer”

When I mentioned this headline to David (my gastroenterologist husband) he said, “I want it,” until he heard the facts.

Facts: The Provenge “vaccine” is not preventive at all. This medication is only for men with late stage, metastatic, hormone-refractory prostate cancer. Even for them, its not a cure. The drug extended survival an average of 4.5 months (from 22 to 26 months) and costs $93,000.

So, why is Provenge called a vaccine? It’s a technicality. Each “vaccine” is custom-manufactured using the patients own cells. The infusion does not directly attack the cancer; rather, it triggers an immune response against the tumor cells just like the flu “vaccine” triggers an immune response against the virus. Clever, huh?

And, finally, one of the biggest media/government headline blunders of the decade.

Headline: “Government No Longer Recommends Routine Breast Cancer Screening for Women Under Age 50″

Fact: The headline is only half right. The original recommendationsissued by the US Preventive Services Task Force were published with the following language:

“Women 40-49: Do not screen routinely. Individualize decision to begin biennial screening according to the patient’s context and values.”

I have already pontificated about this public relations mess in a November 2009 blog that you can read here.

What You Can Do

The news media’s financial incentives make it unlikely that attention-grabbing headlines will go away. So, here are a few suggestions to avoid being seduced by the sound-bites:

1) If you only have time to read or listen to a headline, treat the information as if it’s gossip. Fun to read…but let it go in one ear and out the other.

2) Does it sound too good to be true? It probably is. Nevertheless, if you’re intrigued by the story, make the time to read/watch the entire piece.

3) Is the headline interesting enough that you’d mention it to a friend or your significant other? Maintain your credibility. Go to Google Health News, find the story and click on “All News Articles.” Then, select an article published by a national online newspaper such as the LA Times, NY Times, or USA Today. Business Week and Associated Press articles are also consistently reliable. Avoid reading the web articles published by broadcast media (ABC, CBS, Fox, etc), local newspapers, or blogs.

4) If you think the headline may be relevant to your health, do #1-3 above. Then go STRAIGHT to the source. Most of the web-based news media articles link to the published journal article or government site (FDA, NIH, CDC) from which all media articles are based. Read it. You are smart, and you are just as able to interpret it as the journalism or marketing/communications major who wrote the first piece you read. Even if you can only tolerate reading the abstract, you will get an objective angle on the study findings. Finally, if you feel you need help interpreting the scientific data, go to WebMD’s News Home page.  The articles in the center of the page are non-sponsored and subject to WebMD’s editorial review process.

The Internet has democratized the availability of information. New medical research, technologies, and insights are no longer sequestered in the tombs of professional journals, and doctors are no longer the gateway or gatekeeper of emerging clinical knowledge.  But, remember, in every control room is an executive producer saying the same thing as Becky Fuller, “Every single story that we do is gonna have to be sensational!”

Originally posted on November 30th on Archelle on Health.

The rally is timed to coincide with a weekend when most of us are with the very people with whom we should be having these unbelievably important conversations – our closest friends and family.

At the heart of Engage With Grace are five questions designed to get the conversation about end-of-life started. We’ve included them at the end of this post.  They’re not easy questions, but they are important – and believe it or not, most people find they actually enjoy discussing their answers with loved ones.  The key is having the conversation before it’s too late.

This past year has done so much to support our mission to get more and more people talking about their end-of-life wishes. We’ve heard stories with happy endings … and stories with endings that could’ve (and should’ve) been better. We’ve stared down political opposition.  We’ve supported each other’s efforts.  And we’ve helped make this a topic of national importance.

So in the spirit of the upcoming Thanksgiving weekend, we’d like to highlight some things for which we’re grateful.  

Thank you to Atul Gawande for writing such a fiercely intelligent and compelling piece on “letting go” – it is a work of art, and a must read. 

Thank you to whomever perpetuated the myth of “death panels” for putting a fine point on all the things we don’t stand for, and in the process,  shining a light on the right we all have to live our lives with intent – right through to the end.

Thank you to TEDMED for letting us share our story and our vision. 

And of course, thank you to everyone who has taken this topic so seriously, and to all who have  done so much to spread the word, including sharing The One Slide.

We share our thanks with you, and we ask that you share this slide with your family, friends, and followers. Know the answers for yourself, know the answers for your loved ones, and appoint an advocate who can make sure those wishes get honored – it’s something we think you’ll be thankful for when it matters most.  

Here’s to a holiday filled with joy – and as we engage in conversation with the ones we love, we engage with grace.

To learn more please go to www.engagewithgrace.org.

One of the many topics they discussed was this concept called “The Unmentionables.” The idea is based on the fact that over the past decade during which Drane’s company Eliza Corp has interacted with people about their health and health care, certain themes have emerged. It’s not that people don’t want to keep up with their preventive screenings, or maintain a sensible diet and exercise routine – it’s just that life gets in the way. That includes things like consuming debt, a bad marriage, a stressful job, and even a bad sex life.

Of course, the literature review supports the fact that many of these issues have a measurable – and negative – impact on health. Those things which have a significant impact on health yet are rarely addressed in the health care industry are what Eliza is calling “The Unmentionables.”

They recently did a survey of over 1,000 Americans on the issues that keep them from being their best, and shared the findings. It’s sobering.

For example,  94% of people reported dealing with at least one of the following issues: money concerns, social conflicts, relationship conflicts, caregiving, job stress, depression, trouble sleeping, bad sex life, getting enough exercise or diet issues. And of the named issues, the greatest importance was placed on job stress, caregiver stress and money concerns, followed closely by unhealthy sex life and relationship issues. Not surprisingly, as the number of issues a person is dealing with increases, their self-reported general health ranking went down.

Survey analysis also found that while these issues are real pain points for people, they aren’t feeling much support in these areas from the healthcare industry. Eliza has dubbed this gap the Ostrich Index. It shows that while diet and exercise issues are generally felt to be well-addressed by the health care community (pause for a quick collective pat on the back), those other factors like job stress, caregiver stress, relationship issues, an unhealthy sex life and money concerns are either never or poorly addressed.

As Eliza continues to refine the research – in conjunction with industry expert Wendy Lynch, PhD – they’ll also study the impact of these issues on workplace productivity, or specific health issues.

Stay tuned!