By Janice Lynch Schuster. Face to face with his own mortality, Steve Jobs did what millions of sick people do every day: He went to work. He spent time with his family. He daydreamed. He told his story. On last night’s 60 Minutes, Walter Isaacson talked about what he described as Jobs’ denial that he was sick and dying, and his magical thinking that with a good diet and better thoughts, he might heal. But I’m inclined to think it had less to do with magical thinking and more to do with human thinking: None of us wants to be labeled as dying—and why should we? In the context of how Americans think about death—and how they act in the face of it—Jobs’ response is all-too-human.

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. (more…)

The following ran on Forbes on October 19th.  I found this to be interesting and relevant to Health in Place (HIP) which we will launch on December 6th. For more information on HIP click here.

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. (more…)

By Mary Grealy. When we talk about people who don’t have access to healthcare, there’s a natural assumption that it’s because they can’t afford it.  A new study shows that’s not necessarily the case.

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…)

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.

By Jane Sarasohn-Kahn. Patients who perceive their visit to the doctor was patient-centered, with more communication, receive fewer diagnostic tests and referrals, and yield lower expenses for diagnostic testing. A new study finds that patient-centered care leads to lower spending on health care over one year of care due to fewer specialty care referrals. A contributing factor to lower costs is increased patient participation during the visit, which reduces patients’ anxiety and perceived need for further investigations and referrals. In the milieu of more effective patient-physician communication, physician gets more knowledge about the patient. This brings greater trust between patient and doctor, as described in Patient-Centered Care is Associated with Decreased Health Care Utilization, published in the Journal of the American Board of Family Medicine published in July 2011, and penned by Dr. Klea Bertaks and Dr. Rahman Azari.

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.

By Glenna Crooks. On June 20, New York Times writer Tara Parker-Pope wrote about how FICO, the company with the scores that describe our credit worthiness, has developed a new FICO Medication Adherence Scores to determine – using public, but not medical, information – who is likely to skip or incorrectly use medications.

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. (more…)

Early last Friday morning Dr. Jack Kevorkian died at the age of 83. He was a Michigan pathologist who put assisted suicide in the forefront of medical ethics world. Kevorkian was often referred to as ”Dr. Death” as he was a staunch supporter of physician-assisted suicide and “right-to-die” legislation. He was charged with murder numerous times in the 1990s for helping terminally ill patients take their own lives and was convicted of murder in 1999 stemming for the death of a patient who suffered from Lou Gehrig’s disease. He was paroled four years ago in 2007.

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The following ran on May 26th as a part of CNN Health’s coverage on the empowered patient. It is written by Elizabeth Cohen.

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. (more…)

By Jane Sarasohn-Kahn. Americans are opting for Botox and cosmetic procedures more than colonoscopies and cancer tests, according to a story in Reuters.

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.

By Archelle Georgiou. This week’s Sunday New York Times had its usual array of breaking national and international news on the front page, but my loudest “Oh No!” came when I turned to page 14 of the Magazine. Randy Cohen, author of The Ethicist, announced that he is retiring his column. For those of you who are not familiar, Cohen’s weekly column typically posed two moral/ethical dilemmas followed by his expert analysis and perspective.

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.

By Archelle Georgiou.

“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.” (more…)

By Alexandra Drane. For three years running now, many of us bloggers have participated in what we’ve called a “blog rally” to promote Engage With Grace – a movement aimed at making sure all of us understand, communicate, and have honored our end-of-life wishes.

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.

By Robin Strongin. What happens when two Disruptive Women get together over coffee? Check out this almost-as-if-you-were-sitting-there-with-them article by Halle Tecco to get a glimpse into her recent conversation with Alexandra Drane.

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!

By Phyllis Kritek. Seems like a no-brainer question. Of course not! As the dust settles from the recent elections, however, it seems timely. Media coverage of the nation has obsessed for months over the dissatisfaction, anger, even depression of the nation’s citizens.  They might have been wiser and more productive to focus on greed and vengeance. They are costly indulgences with consequences.

If the often-evoked iconic Abraham Lincoln were alive today, I suspect he would not posit that greed and vengeance are manifestations of  “the better angels of our nature”.  Perhaps they provide a temporary sense of satisfaction. They do not, however, serve us well in the long haul toward the “pursuit of happiness”.

This observation flies in the face of assumptions that have increasingly been treated as inevitable. While individuals, minute to minute, myself among them, make choices about these two impulses, their manifestation as acceptable and inevitable national moral practices is treated as a given.  We argue that we wish to be moral beings while concurrently accepting moral choices for the collective likely to do harm to the collective.  Indeed, we insist that we MUST manifest greed and vengeance.  Much of the post-election analyses available will easily document this insistence.

There is for many a perceived quaintness, of course, in even raising the question. Once both were viewed as “deadly sins”, greed garnering its own status and vengeance posited as an expression of wrath. Now they are norms.

Our comfort with cynicism is enormous. We even confuse it with sophistication and knowledge.  And we confuse greed and vengeance with freedom, as if somehow I have a right to be greedy with a vengeance and be vengeful with insatiable intensity.

Both “health” and “healing” are rooted in the Old English word “haelen”, which means wholeness. It indicates that all dimensions of the human are in some way integrated, interrelated, a well-woven tapestry of completeness. We seem to grasp that this includes physical dimensions of humanness, and occasionally we give a nod to emotional dimensions. Less often do we address the human dimensions that acknowledge we are intellectual, social, moral and spiritual beings.  Even recording this thought is a bit countercultural. (more…)