“A Needed Response”

Public health is about keeping people safe…be it through immunizations, assuring clean water or preventing gun violence.  Here is another safety issue we need to address:

A story about a friend…

There was once a very protected girl.  She did not date until she was 18.   She was an innocent.  She told the boy that she was dating that she would not have sex until after marriage.

She shared champagne with this boy and drank too much.  The next thing she remembered was going to the bathroom, feeling pain and seeing bright red blood.

The boy said to her, “I’m so glad I was the first.”

She continued to date this boy….thought she had to marry him.  She almost took her life.   Only with counseling did she realize she had been date raped.  She broke off contact with the boy.  She spent years in therapy.

He  became a successful physician.

Watch this incredible video with an important message.  It should be part of every boy’s and girl’s education.

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The Power of Patient Blogs: A Window Into the Lived Experience

“Patient blogs reveal the true extent of the impact of cancer on finances, work practices, family life…they offer a window into the lived experience of the patient.”

~Marie Ennis-O’Connor

marie-ennis

When you are 34 years old, lecturing and working in Public Relations and Marketing at a University, you aren’t thinking about cancer.  Yet in 2004, Marie Ennis-O’Connor suddenly had to.  Her life changed with her diagnosis of breast cancer.

In a recent post on the International Journal of Public Health website, this Irishwoman writes, “A cancer diagnosis is not just a single event with a defined beginning and end, but rather a diagnosis [which] initiates a survival trajectory characterized by on-going uncertainty, potentially delayed or late effects of the disease or treatment, and concurrent psychosocial issues that extend over the remainder of a person’s life.”

The uncertainty, delayed effect of the disease or treatment and the possibility of recurrence are all part of the limbo that cancer patients experience after treatment.  “People think your story ends the day you walk out of hospital after your last treatment, but in many ways it is just beginning.”  This aspect of survivorship is not understood by people who have not had cancer, e.g., family, friends and especially health care providers.

And this is Ms. Ennis-O’Connor’s passion–to change  the  care that cancer survivors receive. “There is sometimes a code of silence about what happens after cancer treatment ends.   I wanted to break the silence and provide a safe space for cancer survivors to share their experiences after cancer.   There are good things, but there are also times of grief, loss and confusion – I want those stories to be heard.”

Ms. Ennis-O’Connor suggests that healthcare providers need to change the way they  care for cancer survivors.  She believes that the blogosphere is a place for providers to begin to understand survivorship. “Patient blogs have huge potential to inform healthcare practice.  Patients’ own narratives shed light on cancer’s social impact on the individual, family and society, often in a manner that illustrates in profound and evocative terms… a window into the lived experience of the patient.”  By reading these blogs, health care providers can attain an appreciation of life with cancer from diagnosis through survivorship.   “Perhaps they [healthcare providers] will discover gaps between what they assume patients think or feel and what we actually do think and feel.  [Blogs] can be a valuable tool to close the communication gap that can exist between patient and doctors and healthcare practitioners. “

Ms. Ennis-O’Connor started her award winning blog in 2009.  Now  Journeying Beyond Breast Cancer has over 600,000 views and over 4000 followers.  “Writing my blog has been the single most empowering thing that I have done in my journey with cancer,” she says.  But the blog has been much more , it has brought people together.  As fellow blogger, Anne Marie Ciccarella states, “[Marie] introduced my blog [Chemobrain, In the Fog with AM from BC] to many bloggers…[The] Breast cancer community was facilitated by ‘Journeying Beyond Breast Cancer.’ Every Friday [Marie] wrote a “Round Up” and SHE brought an entire community together.”  Ms. Ennis-O’Connor has written this weekly review of blog posts in the breast cancer blogosphere since late November 2010.

Screen Shot 2013-02-04 at 3.31.36 PM“[Blogging] has enriched my experience, brought new friendships into my life and expanded my horizons like nothing else,” Ms. Ennis-O’Connor states.  Indeed, she is a board member of Europa Donna Ireland –  The Irish Breast Cancer Campaign , an advocacy group that is one of 46 EUROPA DONNA member countries across Europe. She has become the social media manager of the newly formed Dublin chapter of the Global Health 2.0 movement and she has just started the first breast cancer social media chat on Twitter in Europe #BCCEU. 

According to Ms. Ennis-O’Connor the benefits of blogging are numerous.   “Blogging increases social support, self esteem and empowerment.  Blogs offer an online place for expression of emotion, [and] information exchange…Blogs bring about a sense of community. Blogs make you feel like you’re not alone, that someone else understands what you are going through.”

During cancer treatment, there is a plan and significant support from family and friends.  But “when my cancer treatment ended [the] full impact of what had happened hit me –[I] needed more support,” Ms. Ennis-O’Connor states.   Yet there was little information on the chat forums and websites about the “limbo” in which she found herself.   Integrating the experience of having cancer and surviving it is something for which patients are not adequately prepared.   Now, at least, there are blogs that describe the experience, led by Journeying Beyond Breast Cancer.  But there needs to be more and Ms. Ennis-O’Connor is an activist working toward that end.

“Cancer can be frightening and lonely,” Ms. Ennis-O’Connor states. “Being able to write about it honestly and connect with others is a powerful release.”  Ms. Ennis-O’Connor turns to a favorite quote by Rebecca Fall to describe the importance of patient blogs.” ‘One of the most valuable things we can do to heal one another is to listen to each other’s stories, ’”she quotes.  “Patient blogs represent the complex and widely diverse range of cancer experiences. Sometimes just the very act of having our story heard and acknowledged can go a long way towards healing.”   

*Based on #hchlitss twitter chat and email communications.

$375 Billion Worth of Value: Family Caregivers

“There are four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers.”

Rosalyn Carter

First Lady Rosalyn Carter is both philosophical and truthful when she describes caregivers.  There are 66 million adults in the US who are unpaid caregivers–nearly 30% of the adult population!

The Canadian Institute for Health Information estimates that there are 2 million unpaid caregivers in Canada. 

Caregivers are defined as either formal or informal. Unpaid caregivers are the informal type, helping others who, due to

photodisability, chronic disease or cognitive impairment, can’t perform essential activities on their own.  Informal caregiving is  performed by family members, neighbors and/or friends, often at home.   Natrice Rese is one of those millions of caregivers.

She worked in long-term care and home care until 2009 when she started family caregiving for her granddaughter, Maia.  Maia has a rare genetic disorder called Emanuel Syndrome, is developmentally delayed, totally dependent and non-verbal.  A website created by her daughter, Stephanie St. Pierre, provides support and information to others facing this disorder.  As Ms. Rese states, “Family caregivers aren’t just there 8 or 12 hours a day.  They live the job, breathe it, think it, sleep little…they need lots of support…  Caregivers contend with personal feelings, grief, exhaustion, fear, and cannot escape from it.”

PHA cknClaudia Nichols is the founder of Pilot Health Advocates, Inc, a private patient advocacy firm helping consumers navigate healthcare.  As a soon-to-be Certified Senior Advisor, she is keenly interested in how caregivers can be supported.  This support is critical now when  “the task of the family caregiver is swiftly morphing into performing sophisticated skilled nursing tasks, including dialysis management, administering IV’s, wound care (an especially difficult task for amateurs and professionals alike) and other professional skills,” she says.

In the US, the monetary value of services caregivers provide for free, caring for older adults, is about $375 billion per year. This figure is twice the amount spent on homecare and nursing ($158 billion)..  In 2007 the economic value of family caregiving was estimated at $375 billion, a figure that exceeded the total 2007 Medicaid expenditures of $311 billion and approaching total expenditures in Medicare of $432 billion.  That is almost twice as much as is actually spent on homecare and nursing home services combined ($158 billion).

The foundation of care in US and Canada is unpaid caregivers.  Yet these caregivers are at serious risk themselves.

Ms. Nichols notes,”Caregiving is stressful and demanding for both caregiver and recipient.  It is often consumes all free time

Informal/family caregivers are at risk for depression, other stress-related illnesses due to stress, fatigue and social isolation. Economic toll fails to account for emotional & financial impact of caregiving on caregivers themselves.”  Ms. Rese agrees, “Not only do family caregivers provide unpaid care, but they also are out of pocket for incidentals, supplies, medicines, on and on.” Ms. Nichols asserts, “The worst case scenario is that caregivers go bankrupt,have breakdowns, become estranged from other family members, become ill themselves.”

Family caregivers are often thrown into the unknown, Ms. Rese feels.  In Canada, 2007 statistics from the Health Council of Canada indicated that  40-50% of seniors with high needs have distressed caregivers.  These same statistics say 2.7 million family caregivers are over the age of 45, 60% of these are women and 57% are employed in addition to caregiving.  Of those, one third of the cared-for have high needs in mobility, physical and developmental delays and chronic conditions.  Twenty percent of those receiving care at home have dementia, requiring 75 percent more care.

Many caregivers are single parents themselves, usually women with children, and sandwiched between elderly family members.  Seven out of 10 caregivers are caring for someone over 50.

The complexity of caregiving has changed.  According to Ms. Nichols, “nearly half family caregivers performed medical/nursing tasks with for those with multiple imgreschronic physical anad cognitive conditions and 78% family caregivers provide medical/nursing tasks like managing medications including IV fluids and injection.  Caregivers found wound care very challenging, more than a third (38%) wanted more training.” The rationale for their  increased care was a desire to keep their family member out of nursing homes or long term care facilities.

The urgency of the situation for informal caregivers cannot be overstressed, Ms. Rese believes.  “There is a crisis already, no beds to place seniors in, family caregivers running out of steam, lack of funding.”

“There are four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers,” Rosalyn Carter stated.  Giving caregivers a voice and influencing a political climate that is focused on “cost-saving” is imperative.

The National Family Caregivers Association now renamed Caregiver Action Network is a place to start.  This organization was founded in 1993 by Suzanne Mintz and Cindy Fowler.  This group has truly brought about awareness of the caregiving experience, becoming the go-to organization for anyone interested in learning about family caregivers.  It was instrumental in establishing the National Family Caregivers Month in November and in 2000 the federal National Family Caregiver Support program was established.  Caregiver Action Network’s mission is to “promote resourcefulness and respect” for family caregivers.

As Suzanne Mintz recalled: “We wondered why no one seemed to be focused on the fact that helping a loved one with a deteriorating illness had a very real impact on not only the person with the illness, but also on those of us who were primarily responsible for helping them. We were family caregivers, and we wanted someone to reach out to us, to tell us where to find helpful information and advice, emotional support, and real hands-on assistance when we needed it. NFCA was created to educate, support, empower, and speak up for America’s family caregivers so that all caregiving families can have a better quality of life.”

Giving Back One Telemedicine Backpack at a Time

During a disaster, infrastructure, like electricity, water, roads and communication, may be damaged or destroyed.   Large crowds of people are in critical need. “Help can’t get to them and they can’t get to help,” Randy Roberson found. The social infrastructure is surely overwhelmed and chaotic without any command and control.  Medical care, which is desperately needed, may not be able to get to those in need.  Imagine yourself  in such a  bleak situation, overwhelmed,  with desperate or injured mothers, children, elderly, and you have nothing to offer them.

Over the past 15 years, Roberson has entered turmoil and tried to find solutions.  Using technology, Roberson has created two innovations that are making a difference.  The “Doc-in-a-Box” and the “Bring-Em-Back-Pack” uses telemedicine and solar or wind power to bring the expertise of physicians living outside the disaster zone to relief workers treating the injured.   Since 2004, telemedicine has been rendering medical aid to disaster victims in India, Thailand, Africa and the US.

Roberson was motivated by need.  There has been “a repeatedly documented need for a medical clinic that was clean, well equipped and brought in via land, sea or air,” he remembers.  Creating the clinic included assuring that it was securable and tough enough to withstand aftershocks and rough terrain.

Roberson didn’t start out doing relief work.   He was a broadcast journalist who had a life changing interview with Dr. Larry Ward, founder of Food for the Hungry, an international relief and development organization.  “The interview really rocked my understanding of many things and made me want to know more,” says Roberson.  Subsequently Roberson quit his job and began an eight year mentorship with Dr. Ward, learning how to perform needs assessments and how to move in chaotic environments.

Yet even with this mentorship, Roberson felt he needed more.  “The first hours and days after major events are when large crowds are in critical need…People would be crying out to me for help but I wasn’t a medical professional,” Roberson explains.  “But I did know satellite communications and have always been a tech nerd.”  By the 2004 tsumani that hit Indonesia, Roberson and Dr. Alan Michels had created a telemedicine clinic.  “He (Dr. Michels) would look over my shoulder from 8000 miles… He guided me with ‘Do this-try that-put pressure here’ sort of fashion.  I placed a digital stethoscope on a patient in anIndia relief camp in and on other side of world he could hear the beat.”

Roberson is clear that in the future deployments of the mobile medical clinic, they will be staffed with former special forces corpsman. “These corpsman also know what it is like to work in chaos when you run out of bandages and use t-shirts instead,” Roberson assures.  With that kind of experience they are ready for anything.

 The clinic idea has grown to include a “complete containerized field hospital with all medical, housing, food, water and sanitation needs,”says Roberson.  The backpack was created for versatility.  They provide first response before the clinics are delivered. With it, relief workers can preform needs assessments and  “mass triage and transport operations and even day -to -day operations of humanitarian relief,” Roberson explains.  Patient assessments and electronic medical records can be started in the field and the patient information gets to the field or ship hospital prior to the patient’s arrival there.

Using solar power and wind is truly forward thinking, “In almost every major disaster event power is out and communications are down.  In many instances it takes weeks to restore those (in some countries months). To sustain operations we focus on solar, wind and fuel cell technologies to remain functional when completely off power and telecommunications.  We can then quickly switch back to cellular and standard power when it’s reliable again,” Roberson explains.

When relief workers come into a disaster area, they are always forced to make critical decisions based on a lack of real time information.  The “Bring-Em-Back-Pack” provides information through its rapidly deployable live audio, video and other data streams.  Saving lives and reducing suffering are the two greatest initial needs of a disaster situation and they are the focus of

this mobile telemedicine project. With it,  the same tool is used to move the situation through the 4 stages of incident response: rescue, recovery relief and redevelopment.

One of the most important features of this technology is its ability to keep people engaged after the media stops reporting about a disaster. “We also use to reach back to the world through social media and board rooms of corporate sponsors and foundations.  [It] keeps people engaged after the media stops reporting (all too quick) and it provides amazing accountability and transparency which is greatly lacking in humanitarian relief worldwide,” Roberson believes.

Creating these aids has been an act of love for Roberson.  [I’ve] “mostly paid out of pocket, [and am] working on now attracting partners.  Some support [has come] from friends. It drains pockets quickly, Roberson states.  Roberson and his colleague have created a for-profit arm  of his organization to bring these technologies to market and thus fund the not-for-profit Disaster Logistics Relief  that has been established.  To learn more please contact Randy Roberson at rroberson@disasterlogistics.org .

“Great Things Are Possible”

Ask a scholar of human rights a seemingly innocuous question and suddenly you are transported into another world.  As Nicholas Cooper observes,  “People in United States are more familiar with civil rights language, than human rights language.”  That’s what you’ll find while exchanging ideas with Cooper.  For example, when asked to define a “rights-based approach to health,” Cooper has a ready answer:

Human rights-based approaches broaden “development” to include agency, empowerment, and duties. Human rights approaches identify duty holders (principally states) and duty bearers (all people).  They seek change by empowering rights holders to seek, advocate, and get their freedoms and entitlements…and empower duty bearers to respect, promote, and fulfill those rights. “

Okay, lost me.  Start out with the basics.  So Cooper backtracks.  “If I have a right to health, others have an obligation to respect, protect, and fulfill that right…If I have a right to freedom of religion, others have a duty (or obligation) not to violate that right.”

That makes sense.  Viewing health from a human rights perspective changes the strategies used in health communication, health education, policy and program design.  Over the past 8 years, Nicholas M. Cooper has been actively involved in making the connection between human rights and health, and translating public health science into rights-based action.

This language barrier and the lack of knowledge of human rights law leads to many missed opportunities.  “We need people who can speak both languages, and who have a willingness to act,” Cooper explains.
Human rights are derived from international and national law, legislation and treaties.  “Health is definitely a human right established by the United Nations Covenant on Economic, Social, and Political Rights Article 12, among others,” Cooper explains.  From this perspective, Cooper has acted as a Consultant for UNICEF in the Middle East, an International Program Development Participant in India and most recently as Child Protection Officer after the earthquake that devastated Haiti in 2010.

According to the World Health Organization, the right to health does not mean that everyone must be healthy, but it does compel governments to create conditions so that everyone can be as healthy as possible.  Cooper clarifies, “The right to health … includes the determinants of health.  Food, water, housing, etc.  As the preamble to the WHO Constitution says, ‘health is not merely the absence of disease.’”

So, if health is a human right, how do we assure that it is respected?  By “empowering people to claim the right, empowering others to respect, protect, and fulfill those rights,” Cooper explains.  “The human rights approach is about capacity building.” In other words, the human rights approach is about teaching everyone, those in and outside of government about their basic rights.  “So, a human rights approach would, say, give people the information, tools, and processes to recognize and act on human rights, “says Cooper.

At Harvard’s Francois-Xavier Bagnoud Center for Health and Human Rights, his work has focused on the protection of children and youth using human rights and sustainable livelihoods approach.  This approach focuses not only on addressing risk and vulnerability, but also on providing developmental supports and opportunities that are protective and promote success and resilience.

 In the United States there has been a long discussion about affordable care.  But from a human rights perspective it is clear. “Affordable care is essential to have a fair society.  The US does have an obligation, especially given its capacity to do it. But, US judges also don’t know how to handle human rights law,” Cooper observes.    At the FXB Center there are courses available to teach judges and  lawyers about human rights law.

According to Cooper, the human rights approach is about giving people the information, tools, and processes to recognize and act on human rights.  “Talk about Human Rights  in education campaigns, talk about them to a hospital administrator, make budgets based on Human Rights.”

“Too often, public health science ends with a journal article, not action.  There needs to be follow up and implementation.  There is so much we know, but so little is implemented,” Cooper insists.  That’s why Cooper acts by conducting water and sanitation education, instructing on malaria and HIV/AIDS transmission, and exploring how new technologies can be used to identify need and deliver assistance in humanitarian and development settings.  And he wants others to act.   “Great things are possible; how do we get there with what we have? Human rights exist (in law). Global health issues exist. You are affected. See and act.”

A diagram on health and human rights can be found at http://www.who.int/hhr/HHR%20linkages.pdf

Based on twitter chat held on October 1, 2012.  Full transcript can be found at #hchlitss The Health Communication, Health Literacy and Social Sciences Tweetchat

More information on Nicholas Cooper can be found on LinkedIn.

For more information on the Francois-Xavier Bagnoud Center for Health and Human Rights click this link.

Blogging for Mental Health: Reframe the Discussion

Today I am responding to the call for bloggers…

Join us on Wednesday, May 16, and publish a post on your blog about mental health’s importance, how we can diminish stigma, or the challenges of making lifestyle and behavior changes. Tell your story. Share your experience. Mental health affects everything we do. No matter what you regularly blog about, there’s a way to incorporate mental health.

When I think of ways to de-stigmatize mental illness is to reframe the discussion.  What is mental illness but a disease of the brain?

Brandon Staglin and his family want to drive the discussion of mental health in the right direction.  They are funding research on brain disease.

In 1990, Brandon was a freshman at Dartmouth College when he suddenly began experiencing strange symptoms.  “He felt a strange lightness around his right eye and couldn’t recognize his emotions. He’d stay awake for days….” (from “Brain Trust” in Forbes Magazine).  He was diagnosed with Schizophrenia.

In 1995 the family went public,  holding a yearly music festival on their vineyard in California to raise money for the cause.  They founded the International Mental Health Research Organization raising $140 million for schizophrenia research.  Recently, Brandon’s father, Garin, with Patrick J. Kennedy, have started One Mind For Research .

One Mind for Research’s plan to work smarter and share resources through public and private partnerships has the power to help us make more progress on every brain disorder from schizophrenia to traumatic brain injury.

Do we fault people for getting strep throat or pneumonia?  Understanding that the brain is an organ that can get sick just like the stomach or lungs and funding research from this perspective would be a huge step in the process or reducing the stigma of “mental illness”.

Action: Beyond Awareness

In the 80’s and 90’s I watched public broadcasting shows and tired of the environmental documentaries.

Why?

Because the documentaries left me depressed.  All the terrible changes were and still are occurring.  Man wasn’t sharing the world but dominating it.  I was made aware but left hopeless with every documentary because there were no actions I could take to help.  The documentaries brought me to awareness, but then stopped there.

I feel the same way about the slew of Awareness campaigns.  They are all the rage.

Why do we just “do” Awareness?

Because it’s the easiest type of campaign to create and to document that some type of “change” has occurred.

So there are months or weeks or days devoted to “Breast Cancer Awareness” “Pancreatic Cancer Awareness””Autism Awareness” “Mental Health Awareness” ad infinitum.

A truly positive aspect of these campaigns is the impact on acceptability.  People can bring up the word cancer in conversation,  mental health and illness is being discussed.

So what is wrong with all this “awareness”?

There are campaigns that are outdated.  An example is that  early detection via mammography leads to a cure for breast cancer.  First, those who have been diagnosed, no matter the stage, can have a recurrence.  Metastatic breast cancer is the reality for one third of those diagnosed with breast cancer.  Another fact that is not being shared by those in the Awareness business is that mammograms may not be enough to find women with dense breasts need to be notified that mammograms are not the best tools to find the lumps.  So women getting mammograms are getting false hope with the yearly all-clear.

Another example among families living with autism is lack of support for the family…the financial burden…the constant observation that must be maintained in the school system to assure care.  After graduation from high school, how does the adult child function in society?

Awareness campaigns seem to just touch the surface of a problem but do not address the nitty-gritty of those who are experiencing life fully.

And there is still the stigma that people with mental illness, metastatic disease, disabilities face?

How do those who are experiencing pancreatic cancer, breast cancer, autism, feel about all this “Awareness”?

I’m sure there comes a time when they say, “Enough already.”

Light A Lamp

http://katscafe.org/wp-content/uploads/2012/03/Bobby-1-Kind.jpg

When I was younger, I would look at a mother playing with her baby and a warm feeling would come over me. I would just dwell in the experience of joy.

Now I wonder about their life, their future, their heartaches to come.  That change occurred in me when a friend’s son was born.  As the child grew and changed.   As autism and seizures took him away.

When I learned that there is such a thing as Autism Awareness Month, I thought of the Christmas, long ago, when the change in my friend’s son was obvious to her extended family but so unwelcome that my friend and her husband believed their 3 year old was just “being stubborn.”  I remember how heartbroken they both were as they had to accept a diagnosis that they couldn’t understand.   How they lost their little boy without a funeral.

I thought about how unaware everyone was when this happened.

Now I think of how so few people know the dreadful truth of life for parents of children with severe disabilities.   How so few people know the heartache of being shunned by neighbors, friends, fellow church members, family.  How these parents are expected by our society to be super-human.  How they are expected to hold down full time jobs while caring for a child with intensive needs (for example, not being potty trained, unable to feed themselves—you get the point).  How they are forced to advocate for their child with healthcare providers, educators, legislators.  How they are supposed to have the money and wherewithal to pay for whatever special services they need.  How so few people understand that these parents are all alone.

I held a tweetchat on Thursday April 12 and advertised it on LinkedIn.  I received this response from the father of a child with autism

Dear Dr. Kathleen Hoffman!

You deserve my appreciation. In this world, most people enjoy their lives and think if someone has a problem or handicap it is by bad luck and let that person or family deal with it. And if they cannot, or are breaking down while doing their best, who cares!

Among this crowd running behind their own wish lists, a chosen few whom God had given tender hearts speak and work for alleviating the miseries and sufferings of the less fortunate. Euphemistically calling them “special” does not absolve us from doing something for them. When we invite a special guest to a party, we try our best to be as hospitable as we can and run around doing everything in our reach to please that person. But when we dub someone a “special” person, we are often equating that with one who should be especially forgotten about except paying an occasional lip service and then looking the other way. Some even straightaway say okay you have a problem but everyone has his or her own. So what is the big deal?

The dilemma is that this is not a predictable and fair world. When parents beget a child, they never know the innocent soul they are bringing into this harsh world will be able to cope with its trial and tribulations and become a successful person like Bill Gates or will become an incapacitated living being with paralysis, autism, cerebral palsy, epilepsy, congenital anomalies, blood disorders or muscular dystrophies. And when it does happen, they are left in wilderness high and dry even if they have been a helping hand for decades for their friends and family who all start shying away from meeting them just in case they start asking for help or favor.

Let alone individuals with a finite capacity to help, countries that champion to be welfare states turn you away saying that if you have a handicapped family member who will cause an excessive demand on their health and social services….

The world is mostly made up of those running for their own lives and smothering others beneath their feet, lest they get slowed down by anyone who is creeping along, rather than stopping and offering support. The very few who do that should be adored and revered.

I have greatest regards for Mother Teresa who dedicated her life for the sick and destitute and did not flinch back even from leprosy patients, and Ms. Florence Nightingale who ran around to look after the smitten and sick in the middle of a war ground.

Such “Ladies with the Lamp” deserve our salutes with hats off!
And you do too.

I am humbled by this father’s comment.

We all need to be “Ladies with the Lamp” and shed light on what is happening to parents around the world.  Please do your part to spread the word and advocate for these devoted, loving people.  They need our help.

Pull Over & Pay Taxes

A couple of days ago, I heard the waaah-waaah-waaah   of an Emergency vehicle. I pulled over. I then watched as other cars passed me, ignoring the Emergency, ignoring the people who were trying to get a victim of an accident or heart attack or whatever, to the hospital in time to save her.  I thought about the EMT that I know who woke me up to the facts of an EMT’s life, especially to the incredibly low pay they receive for their heroics (at least locally).

This is the transcript of a commentary that I heard yesterday on Marketplace.  It’s called ‘I Love Taxes’.   I feel that it should be read and heard by as many people as possible.

Melissa Chadburn: I love taxes. When I pay my taxes I am telling my community I value you.


Kai Ryssdal: Commentator Melissa Chadburn.


Chadburn: I’m talking about the guy who works for Department of Transportation who helped me get to and from school and thousands of job interviews.

I’m talking about my teachers: Ms. Smith who was my high school English teacher and saw something in me. Ms. Marshall, the junior high journalism instructor who saw I was abused and got me into foster care — a long, achy road, but one that perhaps saved my life.

The nurses who tended to me when I was exposed to tuberculosis as a young child. The military that helped so many members of my family escape poverty and discover a nation they believed in so much they’d risk their lives for it.

The firefighters who do the unthinkable, who run into burning buildings for perfect strangers. Firefighters who often had to come out to emergency cold weather shelters, where I worked, in the middle of the night to tend to a homeless person who was scared they were losing their mind. Sometimes all they needed was some attention. I’ll never forget one Christmas working in the shelter. A firefighter bent down in front of a homeless woman smiling and placed a band-aid on her unwounded eblow just to give her a secret joy.

If we are saying “I value you” when we pay our taxes, what are the people and corporations who don’t pay all their taxes saying? Are they saying the opposite? Are they saying that all those people who do so much for us every day don’t matter?

Melissa Chadburn is a writer who lives in Los Angeles. She is the co-author of “Uncommon Service: How to Win by Putting Customers at the Core of Your Business.”

Fighting the Stigma of Mental Illness

Suicide has increased (largely due to the prolonged poor economic conditions) [Medical News Today]

90%+ of those who die by suicide have a diagnosable mental illness. [National Institute of Mental Health]

One out of five people are dealing wth a mental illness in any given year… this means that

EVERYBODY KNOWS SOMEBODY who is living with a mental illness!

Of the 20% living with a mental illness, many haven not received any treatment largely due to the stigma!

Bullying and TV

Learning would be exceedingly laborious, not to mention hazardous, if people had to rely solely on the effects of their own actions to inform them what to do. Fortunately, most human behavior is learned observationally through modeling: from observing others one forms an idea of how new behaviors are performed, and on later occasions this coded information serves as a guide for action.”
-Albert Bandura, Social Learning Theory, 1977

I became aware of this show when I found my son watching a portion before I intervened.  I am not interested in promoting this type of programming but have placed a example of what I am talking about here.  I found the shortest clip I could find for illustration.  Bullying by physical intimidation occurred earlier in the program before this clip.

There are so many examples of this type of program.  For example, Disney had a cartoon called “Recess” that has been banned from our house.  In it, characters are verbally abusive to each other.

It’s been about 35 years since Bandura conducted his Bobo doll experiments.  In 1977,  Bandura explained observational learning that occurs via television with his Social Learning Theory.   Although his theory recognizes that learning the behavior through observation doesn’t  necessarily mean that the behavior will be reproduced, there is a huge body of research that confirms the negative impact on children and adults of observing abusive behavior.

SO, my question for those who produce this type of “children’s programming” is, why?  Why do you keep producing programs showing intimidation, stereotyping and bullying?  Are you unaware of the bullying epidemic?

Every day, 160,000 students skip school because they are afraid they will be bullied.

Several factors increase the risk of a child being bullied.  These include illness or disability, passivity, social phobia, agoraphobia, and higher levels and expression of general anxiety. Teenagers who are gay are often subjected to such intense bullying that they do not receive an adequate education.  Adults who remembered being bullied show low self-esteem and depression.

Does anyone else see the stereotypes portrayed in this program?  The effeminate male with the falsetto voice is clumsy, has few friends and is not admirable.  He is victimized by a bully, the larger male. 

When people wonder why there is such a large increase in bullying in the United States, I suggest they look at today’s line-up of television programs and stop buying the products that advertise on these shows.  Maybe that will get the point across…”we’re mad as Hell and we’re not going to take it anymore!”


Passion and Advocacy for Good: IpodTouch for Tele-Trauma

When it comes to innovation and passionate advocacy, Dr. Rafael J. Grossmann Zamora is a head above the rest.  As a specialist in Trauma and a Trauma Surgeon, he is on the front lines caring for and saving people who have been seriously injured.  

Unfortunately Trauma Specialists are few and far between.  And this fact is truly a matter of life and death for, according to Dr. Grossmann, “trauma is a disease of time. The quicker you’re treated the better your survival.”  Care by a Trauma Specialist increases a trauma victim’s  chance of survival by as much as 25%.

So what happens if you live in an extremely remote area of the country and you are injured.  Enter tele-trauma…And this is another part of Dr. Grossmann’s passion and advocacy.  He is dedicated to treating and saving people at a distance through telemedicine.  And he’s figured out a new, cheaper way to do telemedicine, through IpodTouch over Wifi.

The hospital where he works, Eastern Maine Medical Center [hence, EMMC],  in Bangor, Maine is the Trauma Center for a significant amount of rural Maine.    With only three trauma centers in the state, EMMC serves an area larger than Massachusetts, Vermont and New Hampshire combined. With such great distances, it can take as much as  3 to 4 hours in travel time to reach EMMC.   That lost time can lead to severe disability or death.

Although LifeFlight, Maine’s air ambulance service is excellent, “weather sometimes does not cooperate…remember, it is Maine!” Dr. Grossmann says.

Dr. Grossmann also points out that helicopter rides can cost upwards of $10,000 to $14,000.   “Our Telemed program covers 15 hospitals over 29K sq miles.  We get a call from small hospital looking for advice, pick inside pocket , tap and connect.”  It’s that easy.

“We are using a gadget designed for play, to potentially save lives, saving money along the way. IPod Touch…transports us to where the patient is to provide advice on treatment right away..via 2-way camera. It is a ‘virtual presence.’ We can’t be there physically, so telemedicine brings us to the patient and patient to us, instantaneously.”

Of course, it wasn’t always this simple.  The program is about 6 or 7 years old.  Getting buy-in from the smaller hospitals took time, “Lots of lobbying and convincing, with great results. Small hospitals love it because it gives them better access to us specialists.  Bringing us to where provider and patient are, virtual presence.”

Physicians have been wary of telemedicine because they believe the time they spend will not be reimbursed.   This is not a problem says Dr. Grossman who states that they are billing the “same as regular face-to-face consults according to new regulations.”

And there is no need for concern about privacy because the apps that are used are encrypted and HIPAA compliant.

Dr. Grossman and his team have been honored by the American College of Surgeons, receiving “Best Scientific Award” at the 2009 Annual Congress of the American College of Surgeons in Chicago.

“This could be a game changer, a paradigm breaker!” Dr. Grossmann enthused.  ” Tele-trauma needs to become common use.”  Dr. Grossmann does not make money on spreading the word about this approach, he just gets the satisfaction of knowing that if more hospitals use iPodTouch Tele-trauma, more lives will be saved and injured people will experience less disability.  He is so excited that he believes IpodTouch for Tele-trauma can be effectively used in other specialized situations where reducing the time to care saves lives.

Watch Dr. Grossmann Zamora in this TEDx talk to see how it works.

Memorial Day Weekend 2003

At four in the morning, she got a phone call from her sister-in-law, “Your husband is in the Neuro-Intensive Care Unit here.  You better come right away.”  She hurriedly gathered her 2 year old son and drove for two hours in a daze.  At the hospital, her husband was on oxygen, had tubes coming in and out of his body and was semi-conscious.  Family members were called and coming from all over the country.  Bewildered and confused she kept asking herself, how had all this happened and why?

Percent of adults who binge drink per state

Recently the Centers for Disease Control published a study  about binge drinking in the United States. According to the report, there are more than 38 million US adults that binge drink.  This over-consumption of alcohol occurs about 4 times a month with as many as 8 drinks per binge.

Binge drinking is defined differently for men and women.   For men the number is 5 or more alcoholic drinks or women 4 or more drinks within a short period of time is binge-ing.

The average largest number of drinks consumed by binge drinkers on an occasion

Although the 18-34 year old age group contains the most binge drinkers, adults 65 and up binge drink the most often.   Another interesting fact is that the income group with the most binge drinkers makes more than $75,000.  Yet those earning less than $25,000 drink the most during binges and binge drink the most often.  Finally, most of the people who drink and drive are binge drinkers.

A traumatic event is obviously something out of the ordinary.  According to experts, we all have “templates” created by our minds.  They are our “expectations,” what we assume will happen based on repeated past experience, basically the established routine. You don’t  have a “template” for a traumatic event. It is completely random, outside anything familiar.  That means it requires a lot of cognitive energy to interpret.

At 4 in the morning, my friend’s normal routine is to be in bed, fast asleep.

Her husband survived the automobile accident with the 19 year old girl who’s blood alcohol level was .19%.  That 19 year old ran a red light and T-boned the other driver’s car.  She’d been binge drinking and  she walked away from the accident unscathed.  He still lives with PTSD and physical results of the accident.

Resilient?

Just a random thought…

Have you heard people say

Children are resilient…they bounce back…don’t worry about them…?

I have and I just want to say to those people

If children are so resilient, why are so many adults in therapy?

Save A Life

This time of year reminds me of the time I taught an introductory course in persuasion at a nearby university.  I don’t know why, but a significant number of seniors filled out the roster.  Challenging and fun at the same time, I kept my learning curve just ahead of my students. One day, mid semester, one of my students disappeared.  He just didn’t show up at class.  Being a senior, he needed the hours to graduate.  His loss, I thought, and hoped he studied classmate’s notes for the exam.  Weeks passed…final papers came….and my long-lost student showed up. Irritated, I put on my stern face and asked that he stay after class.  Something, perhaps a guardian angel, stepped in and opened my eyes.  “Are you ok?  I’ve missed you.  What’s been happening?” came from my mouth. “I’ve been in bed,” he said.  “I’m scared.  My dad thinks I’m going to graduate…he’s looking forward to coming.  I can’t disappoint him.” “In bed…when did this start?” I asked.  Then I heard the story…a trigger event.   A year ago in February, his mother died.  He hadn’t been to any of his classes. I continue to be grateful for the grace given to me at that moment…and knowledge.  Let it be said that he got to a counselor and his father came for his graduation. There should be no shame in admitting depression, no shame in seeking help.  Being knowledgeable about signs and symptoms of  is a gift that you can share; with knowledge you can become an advocate for yourself and others. Mental health literacy is vital…it *can* save a life.

Patient-Centered Medicine Part 2

The etymology of the word “Patient” is described on  Webster’s site  as:

derived from the Latin word patiens, the present participle of the deponent verb pati, meaning “one who endures” or “one who suffers”. Patient is also the adjective form of patience. Both senses of the word share a common origin.

On Graduation Day, medical students become MDs and repeat this Modern Hippocratic Oath.  Here are a few of the lines about patients.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick….

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

It is important to know what physicians think about the Modern Hippocratic Oath. In 2001, Nova did a program on the Hippocratic Oath and invited physicians to add to a doctor’s diary.  I found the following comments fascinating and illuminating and wish to provide them here today.

I have done my best working as an overworked, underpayed academic physician in high-risk obstetrics in a metropolitan city teaching university since then [saying the Hippocratic Oath at graduation from medical school]. I look back to the wisdom and guidance of Hippocrates everyday as I struggle to balance my duties, patient rights and allocation of hospital/societal resources for the sake of underprivileged and acutely ill mothers and their unborn children.

It is particularly evident in this modern era when more students are choosing residencies in radiology, anesthesiology, and pathology for the sake of their lifestyle. Our outstanding residency program in OB/Gyn has difficulty in filling our slots because of significant workload and lifestyle issues. These Hippocratic Oath dissenters tend to openly complain about excessive clinical workload despite obvious patient needs. Many of these individuals rationalize a “shift-mentality” as their future practice of medicine that justifies going home when they are “off-duty” despite any other professional obligations. It appears that “job quality” is a priority when compared to “professional duty” in the medical practice of these particular future physicians.

Some of this new breed of colleagues also have a public display of disrespect for the indigent, confused, and simplistic patient. Instead of becoming an advocate and/or protector of society’s weakest element, they would discard this needy population in preference for the medical procedure, economizing their clinical practice or optimizing their time at home with family and friends.

The most disconcerting attitude within this subset of these “New Age” practitioners is the blatant contempt and disrespect for their elder colleagues in our medical profession. Stated reasons are outdated practitioners and oblivious perspectives to the “modern face” of medicine. While I am still at an intermediate stage in my professional career, I continue to learn more about the practice and ethics of my specific profession from my soon-retiring colleagues than from any journal, Web site, or national meeting.

Generation X has recently matriculated into the field of clinical medicine, and our national healthcare system will only suffer further when we tolerate physicians who do not care, apply inappropriate medical techniques, and have little professional respect for the patient-physician relationship as outlined in this product of early medical philosophy.

P.S. I continue to identify a small group of non-generation-X students and residents each year who defy this societal transformation and who strive to follow in the footsteps of myself and my elders. My solution for this “Gen X syndrome in medicine” is a realistic Third World medical experience for junior trainees (which I have done on several occasions) to give them a perspective that healthcare is a right for all human beings, not a scheduled or convenient privilege!!! —R.E.B.

R.E.B.’s comments describe a fundamental difference in newer physicians which I have described in my tribute previously.  The Occupy Health Care movement needs to address the issue described by R.E.B. “Some of this new breed of colleagues also have a public display of disrespect for the indigent, confused, and simplistic patient.” This attitude can be found in other types of health care providers, as well.  Dismissing social factors that affect health is part of this phenomenon.

 “In itself the definition of patient doesn’t imply suffering or passivity but the role it describes is often associated with the definitions of the adjective form: “enduring trying circumstances with even temper”. Webster’s Dictionary.

Patients should not be patient with this.

It is important that physicians remember the Hippocratic Oath they took and understand this:

What is the essence of a Hippocratic Oath? Simple and echoed throughout time, whatever the words: “May I care for others as I would have them care for me.”
Daniel G. Deschler, M.D., FACS

As leaders of health care teams physicians need to set an example to all people in the health care setting.  If there is to be change, there needs  to be political activism on the part of physicians.  Health care should be available to all.  Physicians need to be paid, but also duly rewarded for honoring  the Oath they take on the day they become physicians.

 

Patient-Centered Medicine Part 2

WE ARE ALL PATIENTS!

The etymology of the word “Patient” is described on  Webster’s site  as:

derived from the Latin word patiens, the present participle of the deponent verb pati, meaning “one who endures” or “one who suffers”. Patient is also the adjective form of patience. Both senses of the word share a common origin.

On Graduation Day, medical students become MDs and repeat this Modern Hippocratic Oath.  Here are a few of the lines about patients.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick….

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

It is important to know what physicians think about the Modern Hippocratic Oath. In 2001, Nova did a program on the Hippocratic Oath and invited physicians to add to a doctor’s diary.  I found the following comments fascinating and illuminating and wish to provide them here today.

I have done my best working as an overworked, underpayed academic physician in high-risk obstetrics in a metropolitan city teaching university since then [saying the Hippocratic Oath at graduation from medical school]. I look back to the wisdom and guidance of Hippocrates everyday as I struggle to balance my duties, patient rights and allocation of hospital/societal resources for the sake of underprivileged and acutely ill mothers and their unborn children.

It is particularly evident in this modern era when more students are choosing residencies in radiology, anesthesiology, and pathology for the sake of their lifestyle. Our outstanding residency program in OB/Gyn has difficulty in filling our slots because of significant workload and lifestyle issues. These Hippocratic Oath dissenters tend to openly complain about excessive clinical workload despite obvious patient needs. Many of these individuals rationalize a “shift-mentality” as their future practice of medicine that justifies going home when they are “off-duty” despite any other professional obligations. It appears that “job quality” is a priority when compared to “professional duty” in the medical practice of these particular future physicians.

Some of this new breed of colleagues also have a public display of disrespect for the indigent, confused, and simplistic patient. Instead of becoming an advocate and/or protector of society’s weakest element, they would discard this needy population in preference for the medical procedure, economizing their clinical practice or optimizing their time at home with family and friends.

The most disconcerting attitude within this subset of these “New Age” practitioners is the blatant contempt and disrespect for their elder colleagues in our medical profession. Stated reasons are outdated practitioners and oblivious perspectives to the “modern face” of medicine. While I am still at an intermediate stage in my professional career, I continue to learn more about the practice and ethics of my specific profession from my soon-retiring colleagues than from any journal, Web site, or national meeting.

Generation X has recently matriculated into the field of clinical medicine, and our national healthcare system will only suffer further when we tolerate physicians who do not care, apply inappropriate medical techniques, and have little professional respect for the patient-physician relationship as outlined in this product of early medical philosophy.

P.S. I continue to identify a small group of non-generation-X students and residents each year who defy this societal transformation and who strive to follow in the footsteps of myself and my elders. My solution for this “Gen X syndrome in medicine” is a realistic Third World medical experience for junior trainees (which I have done on several occasions) to give them a perspective that healthcare is a right for all human beings, not a scheduled or convenient privilege!!! —R.E.B.

R.E.B.’s comments describe a fundamental difference in newer physicians which I have described in my tribute previously.  The Occupy Health Care movement needs to address the issue described by R.E.B. “Some of this new breed of colleagues also have a public display of disrespect for the indigent, confused, and simplistic patient.” This attitude can be found in other types of health care providers, as well.  Dismissing social factors that affect health is part of this phenomenon.

 “In itself the definition of patient doesn’t imply suffering or passivity but the role it describes is often associated with the definitions of the adjective form: “enduring trying circumstances with even temper”. Webster’s Dictionary.

Patients should not be patient with this.

It is important that physicians remember the Hippocratic Oath they took and understand this:

What is the essence of a Hippocratic Oath? Simple and echoed throughout time, whatever the words: “May I care for others as I would have them care for me.”
Daniel G. Deschler, M.D., FACS

As leaders of health care teams physicians need to set an example to all people in the health care setting.  If there is to be change, there needs  to be political activism on the part of physicians.  Health care should be available to all.  Physicians need to be paid, but also duly rewarded for honoring  the Oath they take on the day they become physicians.

 

What happened to "old school" medicine?

Times they are a-changing.  My dad wouldn’t have liked what’s happening. C. A. Hoffman, Jr.  was an old-school physician.  Often, to the chagrin of his office staff, he spent real time with his patients.  Five o’clock would come and go. His office was busy and filled with his laughter and booming voice.  A ringing office phone made him happy.  There was a blackboard in his office.  It had to be white with chalk, covered with his “To Do” list.

When I visited the office, I would sit on a strange-looking metal safe and watch him as he went from room to room.   That safe was so heavy that no one could move it.  It just sat for years in the middle of the busy office front, taking up space and getting in the way. Dad had an answering service to take calls after hours.  The service would call our house in the middle of the night and on holidays. No matter when, he would return his patient’s calls and order prescriptions for them.  If it was an emergency he would direct them to the Emergency Room of the hospital.  Then he would get up and meet them there.
He worried about his patients.  If he lost a patient, I would know about it because he would be incredibly sad.When he died, there was a line of people that wound around the funeral home, waiting to speak to my family.  I don’t know how many hands I shook that night or how many times I heard, “your father saved my child” or “if it hadn’t been for your father, I wouldn’t be here today.” After he died, my family opened up that safe.  There were thousands of invoices that he had just slipped into the safe and forgotten.  Many, many of his patients received his care for free. My father is not the only physician I have known to do this.  My pediatrician was another.  He did not die a rich man, but he was dearly loved. Now when I go to the doctor’s office, I’m expected to pay at least the copay, before receiving care.  If I couldn’t pay, would I get to speak to the MD?  No; I would have to explain my financial situation to someone at the front desk in front of the other patients.  Probably, I wouldn’t get to see the physician. When I call the doctor’s office after hours, an answering service takes the call.  My call is directed to a nurse on call who is looking at my records on line.  S/he doesn’t know me.  If it is an emergency, I’m sent to the Urgent Care Center.  I don’t see my physician.My father opposed universal health insurance, calling it “socialized medicine.”  But I wonder what he would say if he saw medicine as it is practiced today.Many say the change in medicine is due to the terrible financial burden most medical students incur to become physicians.  I’m afraid I don’t see it that way.  I believe that medicine has become a business and generosity has no substantial place in the business paradigm. Nowadays, I believe we need universal health coverage because there are so few “old school” physicians left.  They are a dying breed.