By Ufuoma Lamikanra. Why do many people fear death? I believe that it is a fear of the unknown. If you do not know what will happen to you at the end of life, it is a normal feeling to be afraid. This fear appears to be common among both young and old persons. When my then four year old daughter (she is now about 33 years old) was bitten by a dog, she kept on asking if she was going to die. A colleague told me of a man who always left a gathering of friends whenever the discussion turned to issues on or related to the end of life. Others took advantage of his fears and regularly excluded him from their midst by discussing such “unpleasant” issues.

However, my grandfather was not afraid to die. He desired death instead. At about the age of 90 years (calculated, since there were no records when he was born), many of his age mates – friends and relatives, no longer visited him and he suspected that they had died.  He was always told that they were alive. Nobody was bold enough to tell him the truth. One of his almost daily wishes was to join them, as he could not understand what he was still doing on earth while all his contemporaries were gone.

Many Africans, especially men, loathe leaving the world without leaving behind certain “achievements”. A man is regarded as a failure, if he is unmarried, does not own a house and more importantly, has no male child at the time of death. The absence of a male heir means the tragic end of a lineage as that family name becomes extinct. The pain of death is somewhat lessened by the fact that the deceased left behind male children, to carry on the family name.

A notable feature of the end of life in many African cultures is the belief that most deaths are not natural, but occur through supernatural means. There is always a strong suspicion that someone, usually a close relative, must have been responsible for a death in the family. Sadly, wives are usually accused of killing their husbands, while husbands are rarely accused of ending their wives’ lives. So, who is responsible for women’s death? According to my auntie, women kill their husbands, while women die as a result of their sins.

By Janice Lynch Schuster. Public health officials are sounding the alarm over the looming catastrophe of an aging America, a time in which 78 million Boomers will arrive at old age, only to find a health care system that can’t meet their needs or sustain their lives. Social and financial costs will be devastating: Boomers will live longer and with more chronic conditions than any other generation; they will need more years of care than any of our current systems can provide. Half of those who live to the age of 65 will require nursing home care at some point in their lives; half of those who make it to 85 will experience dementia.

A health care system predicated on acute illness and injury is not equipped to meet the long-term, ongoing needs of people who have multiple chronic conditions—a situation Boomers will face. In short, it’s a disaster we know will happen, but whose impact we might, with planning, lessen.

So how could we prepare? We might take a page from the Federal Emergency Management Administration (FEMA), which, in the aftermath of Katrina, stepped up preparedness planning. Indeed, it  has outlined eight principles of disaster management. These principles will sound familiar to anyone interested in creating a better health care system. According to the disaster planning experts, good plans are comprehensive, progressive, risk-driven, integrated, collaborative, coordinated, flexible, and professional.

These principles will sound remarkably familiar to anyone enaged in public health and health care. Where today America has fragmented, uncoordinated systems of care, we need a future in which coordinated, comprehensive care is the norm. Where today there are unconnected silos of activity, we need to foster improvements that lead to collaborative systems, ones in which each participant knows and understands how, when, and why to interact with other elements of the system.

America needs a progressive system, in which, in the words of FEMA, “managers anticipate future disasters and take preventive and preparatory measures to build disaster-resistant and disaster-resilient communities.” Mapped to the health care system, a progressive system would mitigate the ways in which things go wrong in our current system, fix those errors, and learn from them to prevent their recurrence. (more…)

By Hope Ditto. Did you watch the ABC News special edition of 20/20 featuring Rep. Gabrielle Giffords – an honorary Disruptive Woman if there ever was one — that aired a few weeks ago? (If not, you can view “Gabby Giffords and Mark Kelly: Courage and Hope” in its entirety here). The hour-long program chronicled Giffords’ remarkable recovery after being shot in the back of the head this past January. In particular, it focused on her — at times difficult — journey to regain her speech, which she was able to accomplish thanks in part to music therapy [exemplified in the lifelong work of Disruptive Woman and music therapy expert Concetta Tomaino, DA, MT-BC, LCAT].

According to ABC News’ Bob Woodruff, Giffords lost her speech as a result of aphasia, defined as “the inability to speak because of damage to the language pathways in the brain’s left hemisphere.”

Tomaino, the Executive Director and co-founder of the Institute for Music and Neurologic Function (IMNF), is an international authority on the clinical applications of music and neurologic rehabilitation. She has studied extensively the role of music therapy in treating aphasia sufferers.

Tomaino speaking at the 2010 Disruptive Women Holiday event -- Music and Art Therapy: A Demonstration of Healing.

As she explains, “For someone recovering from a brain injury, music can be a gateway to speech. They may not be able to speak words, but they often can sing lyrics to familiar songs.”

Prompted by the inspiring story of Giffords’ successful treatment, the American Music Therapy Association asked Tomaino to teach a full-day class about Traumatic Brain Injury (TBI) and music therapy at their annual conference (you can see a description of the class and learn more about the conference here).

The work of Tomaino and others in the music therapy space has revolutionized how doctors treat not just aphasia, but a wide range of other neurological conditions as well. An article in today’s edition of USA Today highlights music therapy treatments for other medical conditions and diseases (and includes an interview with Tomaino!). You can learn more by visiting IMNF’s Facebook page and YouTube channel.

Tomaino participated in last year’s Disruptive Women Music and Therapy Holiday Event (see a recap — including photos and video of the event – here.

By Regina Holliday. I don’t know about you, but I love those promotional items I pick up at conferences.  I think it is really cool that my five-year old has a Health 2.0 water bottle and that my 13 year-old has a Cerner backpack.  I carry my Disposable Film Festival messenger back on every trip and I wear my Practice Fusion t-shirt all over DC.

By Hope Ditto

For me, November’s Man of the Month needs no introduction (… because he is my father). For the rest of you for whom he is not a genetic relation, here goes…

The Disruptive Women in Health Care team is pleased to introduce our November Man of the Month — Dr. Peter Ditto, Department Chair and Professor of Psychology and Social Behavior at University of California, Irvine and a leading authority on the psychology of advance medical directives and end of life decision making.

Dr. Ditto is best known for the series of studies he conducted examining key psychological assumptions underlying the effective use of advance medical directives, so much so that he was one of the few psychologists invited to participate in the 1993 Squam Lake conference convened to establish a national agenda for research on advance care planning. He is also a member of the Advisory Panel for the American Psychological Association’s Ad Hoc Committee on End-of-Life Issues.

I sat down with Dr. Ditto (who I more commonly refer to as Dad) to learn more about the psychological aspects of end of life decision making, his research on the subject and more.

You often use the Terri Schiavo case  as an example of the decision making challenges families who must make choices about the use of life-sustaining medical treatment for an incapacitated loved one face. In what ways does the Schiavo case encompass your “traditional” case? In what ways does it diverge?

In many ways, the Terri Schiavo case is not at all typical.  She was a young woman who was struck down unexpectedly in her 20’s. Most end-of-life decision making occurs with elderly people, often with a lot of advance warning that a situation is approaching where the person is going to lose decision making capacity. It is actually interesting that the cases that have most captured the public’s attention and most shaped law and policy on end-of-life decision making have involved these quite rare and unusual cases of young people left in persistent vegetative states (Schiavo, Karen Ann Quinlan, Nancy Cruzan). This is likely because these are cases where the issues are displayed most poignantly – a person who has lost the ability to speak for themselves, about whom everyone is uncertain what the incapacitated person would want done if they could speak, and where family members (and public opinion more broadly) have strong and differing opinions about what is the morally appropriate course of action.

But it is important to point out that these are exactly the problems that occur writ small – in less dramatic and less poignant forms – in homes, hospitals and hospices every day in the US. It is typically older people who have become too sick to speak for themselves, have not completed a little will or conveyed their wishes in any way to their loved ones, and this uncertainty can easily lead to family conflict because people have differing beliefs about the person’s likelihood of recovery, and bring different moral views and emotional vulnerabilities to the situation.

You say that, while many think the presence of a living will would have negated what quickly disintegrated into an ugly situation for the Schiavo and Schindler families, it is not always that simple. What steps can people take to avoid (to the extent it is possible) leaving their loved ones in a similar situation?

In many ways, my scientific work on end-of-life decision making can be seen as a psychological critique of living wills. The problem with living wills isn’t the idea – it is a wonderful and noble concept to try to honor people’s wishes near the end of life by having them record those wishes while they are still able – it is the execution. Quite simply, it is just a really difficult situation to find oneself in, and there are no simple band aids that are going to fix it all up. (more…)

By Alexandra Drane. For four 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.  (more…)

By Casey Quinlan. It’s not easy hearing your name and [insert dread diagnosis here]. I know this only too well after having to find the funny in my own journey through cancer. Cancer is, however, most often a diagnosis that you fight to a defined end. What’s it like to find the funny in a chronic condition like multiple sclerosis?

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. (more…)

By Diana J. Mason, PhD, RN, FAAN. The “death panel” rhetoric that arose during the debates about health care reform is an example of what’s wrong with the conversations about health policy in this country. The sound bite was fear-mongering at its best–or worst, depending upon your view. The phrase was based upon the fabrication that the health care reform law, if passed, would authorize a government panel to decide which Medicare recipients should live and which should die. Nothing could be farther from the truth.

The proposed legislation included the authorization of payments to physicians for conversations about advance directives and end-of-life preferences on a periodic basis, even among Medicare beneficiaries who were healthy. The “death panel” rhetoric created such a firestorm among average citizens that it stopped public conversations about informed choices about planning for how one prefers to die.

In October of this year, the American Academy of Nursing sponsored a public forum entitled “Critical Conversations on Advanced Care Planning and Decision Making: Models That Work” at the Kaiser Family Foundation with the intent of restarting a public conversation about these important issues. The event was co-sponsored by the Archstone Foundation, California Healthcare Foundation, Jonas Center for Nursing Excellence, Rita and Alex Hillman Foundation, and the John A. Hartford Foundation. All of these foundations know that we cannot improve care at the end of life until we have more thoughtful conversations about how to educate the public, health care professionals, and payers about best practices in this realm.

One of the panelists, Amy Berman, RN, Senior Program Officer for the John A. Hartford Foundation, has been sharing her story about being diagnosed with incurable breast cancer and her decision to forego aggressive treatment that may or may not prolong her life but would certainly have made this first year since diagnosis one of coping with major surgery and the adverse effects of chemotherapy and radiation therapy. She announced at the forum that she was about to celebrate her first year post-diagnosis anniversary and that it had been the best year of her life. For Amy, her treatment choices have been about how she wants to life the rest of her life, not just how she wants to die. (more…)

By Glenna Crooks. Soldiers returned from modern-era wars addicted to medicines used to treat the pain of their wounds. Society has been fearful of the power legitimate medicines can have on the unwary ever since.

Over the years, solutions to this problem were placed in the hands of law enforcement, which, among other measures, monitored physicians to assure they were not enabling existing addicts or creating new ones. Later, pharmacists were monitored as well and soon became engaged in measures of their own to prevent abuse. Recently, under the guise of patient safety, FDA joined in.

Intrusions led physicians to fear prescribing pain medicines for legitimate medical purposes and warned pharmacists away from essential community-based pain management. Law enforcement and regulatory barriers made it more difficult—even personally threatening and certainly more costly—for them to do so.

Isn’t it ironic that the law and the healing arts should clash? Early civilizations considered both to have been gifts from God. Both were intended to serve man, not to victimize the most vulnerable. Yet, today’s clashes have done precisely that, and jeopardize those in pain.

Those near death for whom society should have the most compassionate response have been harmed as a result. They have immediate needs that, in some cases, only powerful medicines can help.

Unrelieved pain takes a terrible toll on patients and their loved ones. Unable to get help from physicians and incapable of negotiating the maze of intrusive legal restrictions on their care, at one time families turned to politicians for intervention. They asked Congress to legalize heroin as a pain treatment. Thankfully, that era’s street drug-of-choice was not needed – we had better drugs than heroin. Congress did not grant their wish. But the families were right about one thing: those medicines were not being used. I know their frustration and anger. I was witness to the devastation they felt when loved ones had died, in pain unnecessarily. (more…)

By Randi Kahn. As many of you may have read, Evelyn Lauder, the senior corporate vice president of Estee Lauder Companies and daughter-in-law of founder Estee Lauder, a champion of breast cancer research, died of ovarian cancer at her home in Manhattan Saturday. Her death came on the same day I finally got around to watching “The Education of Dee Dee Ricks,” a documentary that follows the journey of a woman battling breast cancer while attempting to raise millions of dollars to help treat other breast cancer patients without resources, and also shares the story of a woman named Cynthia who was uninsured and ended up passing away in a hospital after her breast cancer, which was caught late, spread to her liver.

I have been unable to get these strong, Disruptive Women out of my mind, and could not help thinking about both Evelyn and Cynthia while listening to the National Journal’s “Living Well at the End of Life” event on Tuesday, wondering what their conversations about end of life care were like with their clinicians, and if there was a difference between them as a result of their insurance and financial statuses. Did Cynthia choose to live her final days in the hospital?  Did her medical situation necessitate it? Was she given proper information about her hospice and palliative options?

Although we’ll never know the answers to those questions, it is interesting to take a look at barriers that exist for clinicians in end of life care that are likely impacting potential disparities. (more…)

By Janice Lynch Schuster. Seventeen years ago this month, my grandmother was dying of kidney cancer; given 2 days to 8 weeks to live, she made it 8 weeks to the day. During those weeks, even as she suffered the pain and indignity of her illness, she was very much among the living. She played with my children, did crossword puzzles, went through old papers, sorted out her knickknacks, admired the changing colors of the trees. Even as she was saying goodbye to us, she was living her life as best she could.

A decade ago, a dear friend died of pancreatic cancer. During the few months remaining to her, she and I got together for lunch as we always did; she worked on writing assignments for the newsletter I published, held a Christmas gathering, and finished her master’s degree.

And just last year, a few days before her death, the mother of a dear friend was swimming laps in her community pool. In what proved to be the last months of his life, Steve Jobs got up, put on his black turtleneck and jeans, and journeyed to work, where, apparently, he tried to find ways to reinvent television. In the end, they say, he was troubled by the poor design of his oxygen mask, and kept insisting on trying others. People remain themselves until the very end.

The point of remembering these sadnesses is to note what they all have in common: People who are dying have much living to do, whether it is measured out in days or weeks or months, each person wants to be counted among the living until the very last moment. It is no surprise-we all share passions, interests, loves, and a basic human desire to survive. 

And the demarcation lines between the living and the dying might as well be drawn in pencil, so our doctors can erase and redraw them because their efforts at prognostication often miss the mark. My friend, geriatrician and hospice physician Joanne Lynn, refers to all of us as the “temporarily immortal”, and notes that the distinction between the living and the dying is as arbitrary and subjective as the one we make between people who are tall or short: Some quite clearly are on the edges of height, but most of us are somewhere in the middle.  (more…)

For many of us the holiday season is a time for family and fun, but for millions of Americans who have lost a loved one, it can instead be a season of depression, stress, and remembrance. In that way it also serves as a reminder to take a step back and wonder what it would be like if we were terminally ill and reaching the end of life. At what point would we want to stop treatment, remove a feeding tube or the plug from the ventilator keeping us alive? Would we want pain relief that would force us into a peaceful slumber? Would we prefer to die at home, in hospice, or in a hospital? How would we want people to bid us farewell?

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. (more…)

By Lois Privor-Dumm. A few years ago, we were thinking about how do you get people to recognize that pneumonia is a problem in children? The answer is, we don’t have to figure it out – give people the simple facts and they will amplify the message. This week, I have seen so many innovative ways that individuals and organizations are getting the word out and showing they care about solving this very solvable problem of pneumonia: from the health departments, students and other interested people all over the Philippines creating their own song and building it up with a dance contest; the children’s fashion show and boat regatta in Nigeria; the virtual Baby Shower For Good sponsored by the Baby Center, UN Foundation’s Shot@Life Campaign, Global Alliance for Clean Cookstoves, and ABC news; GAVI Alliance’s blog carnival to highlight the progress in the rollout of pneumococcal vaccines as part of the fight against pneumonia.  It’s all working towards the same goal to build awareness and support for solutions to child pneumonia.

My personal favorites were two simple things that I gave to my 3-year old niece – a plushy blue and pink lung pillow and coloring book. She loved it and her mother wanted to learn more about what I was working on. Pneumonia has been a problem for so long that many seem to forget about it. In the US, it is rare that you hear about a baby dying of pneumonia. Mainly because they generally are not malnourished (although this is still a problem in some areas), get their immunizations against the major causes of pneumonia including pertussis, measles, Hib and pneumococcus. And even if they do fall ill, they generally have good access to care. (more…)

By Phyllis Greenberger. Just as disease affects women differently than men, military women experience different health concerns than their male counterparts. Women veterans are affected by a number of trauma-related disorders, including PTSD, depression, sleep disturbances, and increased use of tobacco and alcohol. In fact, nearly half (48%) of women tested for major depressive disorder in a VA medical study screened positive compared to 39% of men. Osteoarthritis, infertility, urogenital and pelvic floor disorders are some of the other unique issues faced by women veterans.

Realizing the seriousness and magnitude of the problem, SWHR began a multi-year program for women veterans in 2008 when we hosted a conference entitled, “PTSD in Women Returning from Combat Areas.”

SWHR’s president twice testified before the House Committee on Veterans’ Affairs on the important topic of enhancing healthcare services for women veterans and the need for research into sex differences that influence the unique health issues military women face.

In February 2011, SWHR launched Fatigues to Fabulous™ (F2F), an ongoing national campaign to honor and support female veterans as they transition home. Collaborating with veterans’ service organizations and the fashion industry, SWHR is raising awareness about the unique physical, emotional, and psychological challenges female veterans face, and is working to harness resources to support them.

A SWHR scientific conference in July 2011 “What a Difference an X Makes: The State of Women’s Health Research – A Focus on Female Veterans” brought together researchers and clinicians to discuss research gaps and clinician care options for military women.

SWHR believes sex differences must be researched in order to better understand the cau (more…)

The following is  a guest post by Wendy D. Lynch, PhD the Founder, Lynch Consulting and Co-Director, Center for Consumer Choice in Health Care, Altarum Institute. For 25 years, Dr. Wendy Lynch has been making the connection between human and business performance.  Her career has included roles as faculty at the University of Colorado Health Sciences Center, Senior Scientist at Health Decisions International, and Principal at Mercer Human Resource Consulting.

By Wendy Lynch. In any other industry, minority and elderly discrimination would be front-page news. A recent study confirms elderly and minority customers get higher-cost hospital care than other more affluent white customers and are more often exposed to harmful, even deadly outcomes (1, 2). Fact: care for these patients will cost significantly more, yet their health outcomes and personal safety will be compromised. But in health care, it is not news.

This is the nature of health care disparity. But it reveals an even more troubling issue we rarely discuss: information, choice, and control. Not only do these patients receive substandard, over-priced care (1), they likely don’t even know it! The system limits information, limits choice, and offers patients little control over their options. In this and a subsequent blog, we will explore how lack of choice and control institutionalize the very disparities we aim to eliminate.

Disparities Are Real
It’s hard to dispute the facts; there are huge variations in health status and health resources among U.S. citizens. Comparing the most and least fortunate, differences are evident in every category: prevalence of risk factors and chronic illnesses (3); the availability of high-quality care (2); rates of preventive services (4); rates of premature mortality (5); and regular sources of care (6).

Nor are people surprised to learn that health disparities are closely linked to disparities in income and education (7). Health and health care delivery are worst among ethnic minorities, rural and poor communities, immigrants, and the elderly (7, 8). Despite decades of attention and investment by private and public agencies, the distance between the “haves” and “have-nots” remains as wide as ever (9). (more…)