It’s been awhile since I read a book that has influenced  my thinking.  Maybe it’s because I don’t read as many books for “fun” as I used to.  Maybe it’s because I’ve been pre-occupied with ARRA and HITECH related work or my graduate school course on medical ethics or my teenager’s triumphs and despair as she awaited college acceptance decisions.   But there I was driving in my car listening to a National Public Radio (NPR) segment.  Actually it was Fresh Air with Terry Gross. For the next several minutes I found myself drawn in by an interview with a science journalist named Rebecca Skloot, who wrote a book called “The Immortal Life of Henrietta Lacks.”

Now I’ve worked in the health care field for more than 35 years and lived in the Maryland-DC area for most of that time.  I had never heard of Henrietta Lacks or the HeLa cells.  Somehow I had missed prior accounts of the controversy (such as Cells That Save Lives Are a Mother’s Legacy New York Times November 17, 2001).   What I heard during the NPR interview propelled me to purchase the book and now after reading the book, I find myself amazed by the story and wondering about the many issues the story raises.

Henrietta Lacks’s story is the TRUE story of a woman who unknowingly supplied the first human cells grown in culture, leading/contributing to what many consider to be scientific and medical advancements such as the vaccine for polio, clone mapping, and in-vitro fertilization.   As the story goes in 1951, a doctor at Johns Hopkins in Baltimore took cells from the cervix of Henrietta Lacks who was a poor African-American woman dying of cervical cancer.  What’s so significant about something that happened back in 1951?  It turns out that her cells were/are unique. They have multiplied and multiplied and multiplied and have been used in tens of thousands of research studies by dozens and dozens of researchers.  It seems that a lot that is happening today remains VERY relevant. Not the least of which is just telling Henrietta Lacks’s story.   Her story has implications for ongoing health research and policy and ethics and law and patient’s rights.

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The following post by Meryl Bloomrosen, Vice President at the American Medical Informatics Association (AMIA), is part of Disruptive Women’s “The Value of Health: Creating Economic Security in the Developing World” series.

Ms. Bloomrosen supports a number of AMIA committees and task forces, provides executive oversight to AMIA’s contracts and grants, and provides support for AMIA’s ongoing efforts on Clinical Decision Support (CDS) and informatics workforce development. Prior to her position with AMIA, Ms. Bloomrosen was a Vice President at the eHealth Initiative and the Program Manager of the Connecting Communities for Better Health Program, a HRSA-funded, multi-million dollar cooperative agreement.

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My 30+ year health care career is catching up with me –  my eyes are wide open, my heart is heavy, and my mind is racing.  What is happening?   In the summer 2008, I had the privilege to help convene and participate in a week long, by invite only conference on ehealth capacity and workforce, sponsored by the Rockefeller Foundation and part of their series of topically focused conferences.  In June 2009, I traveled with my daughter to Ecuador as part of a humanitarian trip to provide health, education and infrastructure support to several indigenous rural villages.  And at AMIA, I have the good fortune to participate in several globally focused health informatics and workforce projects.

I have learned a lot about how health workers are inequitably distributed throughout the world, with severe imbalances between developed and developing countries.  It is clear to me that tens of thousands of people lack the information, knowledge, or resources to take care of themselves or their families.  The growing worldwide shortage of health care workers, along with the imbalance of  the availability of health workers, stands in the way of achieving such key global public health priorities as reducing child and maternal mortality, increasing vaccine coverage, treating people with chronic diseases, and combating epidemics such as TB, malaria, HIV/AIDS and H1N1 .

Over the decades, there has been much discourse and many, many meetings on the topics of access to health care, the shortage of health care workers, and the lack of adequate information about health and health care.  Philanthropies have created and launched multiple programs to help eradicate poverty and disease; to help educate generations of world citizens; to help train doctors and nurses; to increase world literacy.  Papers and reports written.  Speeches and testimony given.  There are just too few hands-on healthcare workers to provide essential health interventions, and reports conclude that this shortage requires adopting a global approach to health worker human resources.^[1-12]

The United Nations’ (UN) Millennium Development Goals (MDG) to promote poverty reduction, education, maternal health, gender equality, and aim at combating child mortality, AIDS and other diseases represent one global partnership.   The World Health Organization (WHO) devotes resources to the topic of the ongoing and growing shortage of health care workers as it relates to global health noting that prevention and treatment of disease and advances in health care cannot reach those in need.  In the U.S., several reports discuss the current and future demand for health workers (including primary care physicians, nurses, providers, and public health workers) and conclude that we too face a critical national shortage driven by such factors as U.S. population growth, increased need for health care, the aging population, an aging and retiring workforce. The general consensus is that demands will outstrip the supply.

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Several months ago I was attending a funeral.  After being introduced to a relative’s relative, my family member asked me if I knew what had happened to Mr. Smith, pointing to the elderly man walking with a cane.  It was a miracle my family member said.  A miracle I wondered, looking skeptically at him.  Yes, Mr. Smith was having a CAT scan and the results showed that he had pancreatic cancer.  A miracle I asked, why so.   As it turned out the patient, who in his early 80′s went to his doctor complaining of not feeling well.  Abdominal pain. Distention.  General malaise and discomfort.  One thing led to another and CAT scans were ordered.   And as the family story goes, “by mistake” a CAT scan of his pancreas was performed.    And as I understand the story, the tumor was removed.  No metastasis was found.  The gentleman was advised to be sure to come in for his scheduled checkups and to tell his doctor about any subsequent health problems, and to be prepared for follow-up tests.   He was told that some tests will be repeated in order to see how well the treatment is working.  The recent death of actor Patrick Swayze reminds us that pancreatic cancer is so difficult to detect and diagnose early. There aren’t any noticeable signs or symptoms in the early stages of pancreatic cancer.  The signs of pancreatic cancer, are often like the signs of many other illnesses.[1]   Hmmm, I agreed, a miracle by accident.

 

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[1] http://www.cancer.gov/cancertopics/pdq/treatment/pancreatic/Patient/Accessed 09_18_09

We won’t ever be sure what could have been if we had paid more attention to the signs and symptoms. Mom had died in October 2006. Dad had visited her in the hospital and the rehab center and the nursing home for seven months, every day, day after day after day. They had been together for 50+ years. And he had been sure to tell the story of their meeting and their marriage and their lives together to anyone……. well actually to everyone that he met. After mom passed, he slowly managed to go on with his life without her. It was not easy. He had to learn how to use the microwave, how to make coffee, and how to cook. He mastered the art of grocery shopping and doing his own laundry. One day at a time we encouraged him. Slowly he managed to pick up the pieces and take care of himself. Or so we thought. Sure he often spoke of missing her. And he mentioned having trouble sleeping and not really feeling like eating. He told us that he often would get up in the middle of the night and then take naps during the day. He mentioned being invited to join friends for lunch or dinner but not feeling well enough to do so. He seemed more and more tired and uninterested in life. Dad we asked, did you go for a walk today? No, no, no he said, it’s too hot. Dad we said, perhaps you should see the doctor. No, no, no, I have an appointment next month. Dad we said, perhaps you could talk to the Rabbi. No, no, no, I don’t want to bother him. Dad, we said, your friends want to see you. No, no, no I am not good company. Dad, we said, please come visit ….. the grandkids want to see you. No, no, no…it’s just not that easy to travel at my age, he would say. Dad we said, why don’t we all take a vacation together? No, no, no he said, it’s just not easy to get around. Dad we said, why don’t you see a counselor or join a grievance support group? No, no, no, he said, I am just not ready. Dad, we agreed is really, really depressed about mom’s passing… his grief seems insurmountable. He’s really having a hard time being by himself. But even so maybe we should call his doctor…maybe it’s more than depression or grief. It looks like he’s losing weight and he’s always tired and seems to be sleeping more and more. The pain of his loss never seemed to subside. His grief seemed to appear mostly in physical ways: restlessness, exhaustion, sleeping problems, appetite changes, body aches, stiffness of joints, weight loss, and increased fatigue. But two years later he was still suffering much as he had back in 2006. Maybe it was time for us to insist that we go with him to his doctors.

Hmmm said the doctor…..weight loss, tiredness, loss of appetite, decreased energy, and depression. Let’s run some tests. Hmmm said the doctor lets get a scan. Hmmmm said the doctor I think we need an MRI. Hmmm said the doctor, I want to get a liver biopsy. Hmmm, said the doctor I am sorry but its pancreatic cancer and its spread to the liver and given your dad’s age and condition, I don’t think there is much we can do. Dad died in November 2008, two months after his diagnosis.

The giggles started almost immediately.  Ola. Me llamo Meryl.  I am guessing that it was my remarkably un-Spanish sounding accent.  Ever since my chlidren had taken Spanish in middle school and I had tried to help them study, they had marveled at my attempts to pronounce their Spanish vocabulary words but I could not do so no matter how hard I tried.    But I digress.

Ola.   Me llamo Meryl.   We were standing in front of 60+ students ages 7 and 8 in a small village school about 2 hours north of Quito, Ecuador.   We were part of a small group (40+) of Americans who had traveled on “vacation”  to Ecuador on a service/humanitarian trip. Some of us were helping “teach” in the schools; others were helping paint the buildings or construct tables and chairs; and the medical team (of doctors and nurses and physician assistants and social workers and nurse practitioners and translators), was working with local health care workers and seeing people at local clinics and from a bus equipped to function as a clinic on wheels.

So as the U.S. stands poised to spend billions of dollars on health care reform and to assure that all Americans have access to the highest quality and most affordable care  and to equip our physician practices and clinics and hospitals with the best electronic health records money can buy;  and funding the most robust and comprehensive research and comparative effectiveness studies……………….. I keep thinking back to the people who didn’t know what it meant to use a tooth brush; or to have soap to wash their bodies or their clothes;  I keep thinking back to the young, wide eyed children seeking a smile and a simple acknowledgement from their American visitors; hugging us hello each morning and hugging us good bye each afternoon; to the countless women washing their family’s clothes in the seemingly polluted rivers along side the cows and sheep and llamas; to the men and women hunched over their knitting needles and yarn for 10-12 hours/day making hats and sweaters and scarves so that they could take their products to market and hopefully support their families; to the dozens of elderly who were blinded by cataracts and unaware of how relatively “simple” surgery could grant them the gift of eyesight again; to the pungent smells from shoeless and toothless “locales” who had probably not bathed in days or weeks or months; to the stories we shared with each other during our “evening debriefs” and how each of us was humbled by the innocence and pride and self sufficiency of the people we met; and how we were inspired by their sincere and genuine and heartfelt friendship; and how I keep thinking about the interrelationships between health and health care and education and clean water and clean air and basic sanitation and plumbing and running water and personal hygiene and poverty and illiteracy……..and I keep thinking about the possibility of returning to Ecuador next summer…….because it was one of the best summer vacations we ever had.

I read an article in the Washington Post recently that discussed the worldly adventures of several individuals who found themselves out of work due to lay offs, downsizing or bankruptcies. Described as relatively young and successful, the article noted how they were filling their time during their days of unemployment. Paragraph after paragraph described their indulgences—-travel to locations they had not yet visited… purchases they were making… plans in process to relocate to various part of the globe to launch their next “get rich quick” financial businesses of one sort or another. Unless I missed it, not once did I see any thoughts or considerations towards pausing, taking a deep breath and reassessing their life long pursuits, desires, or dreams. Not once did I detect a sense of wanting to roll up their sleeves and help others. Not one comment about possibly volunteering at a school, soup kitchen, food pantry, homeless shelter, clinic or hospital. Not one word about possible career changes from finance or investment or banking to health care or social services or teaching. Not once, did I sense any second thoughts about their prior life paths of self indulgence, financial pursuits and material possessions. The article reminded me of a prior conversation I had many many years ago—in fact I remembered that it was a pretty volatile conversation— with a very good friend —about the relative value of clinicians and care givers (physicians, nurses, and others) and teachers and educators compared to financial “types” and I remember realizing then that I lived in a different world — my world centered on people who devoted themselves and their careers to making a difference– by enriching and sometimes saving lives and certainly by helping and impacting others– one patient, one family, or one student, one day at a time.

This past New Year’s Eve I was at a dinner party and had my eyes opened wide. After the typical pleasantries of the evening, with the kids all squished onto the couch in the family room patiently waiting for the musical performances to begin on TV, the adults remained at the dinner table engrossed in what became an emotional and heart wrenching discussion about parental anguish and choices when their child(ren) face possible mental illness. I heard how difficult it can be to navigate the fine line between the health care and educational systems and bureaucracies. I heard stories about the information void that parents face once decisions are made to bring their (minor) child(ren) for mental health treatment and/or diagnosis. I learned about the disparate and sometimes utterly contradictory interpretations of HIPAA guidelines by schools and health care entities. I heard how 24/7 supervision may not prevent an adolescent from trying to harm himself. And I heard how parents quit their jobs or took leaves of absences from work to deal with the never ending piles of paperwork, court appearances and legal proceedings to seek and ultimately obtain the best care, education, and treatment for their kids. I realized that there are indeed complexities and gaps in these systems that need attention. And I reflected that I felt unable to help figure out how to make their circumstances better. And we hugged and cried and prayed that 2009 would be better.

Having received the diagnosis of stage 4 pancreatic cancer dad decided that his remaining days should be oriented toward providing him comfort rather than treatment. I had not heard the term (actively dying) before dad was admitted into inpatient hospice. It was a brief stay following his collapse at home. It seemed that he would have preferred and felt safer and more secure to stay longer; perhaps it was the supportive listening and personal care and attention they provided. Or the three meals a day he could have (if only he had an appetite). Or the audiences who came into his room and listened to him conversing fluently in various languages.

But the staff said that he was not yet “actively dying” and there was little (no?) need for him to remain on the inpatient hospice. Yet seeing the sad and fearful look in his eyes, the physician quietly mentioned that perhaps he could remain on the unit one more night. So he stayed another night and then we finalized the plans and arrangements for him to go home with round the clock home health aides.

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We have all seen the disturbing headlines of economic failures, bailouts, corporate bankruptcies, and massive layoffs. Economies around the world are slowing down. We also see the continued and raging debates over health care costs, delivery and quality as healthcare organizations and providers fight to reduce or control costs while delivering quality health care and attracting a qualified workforce. Whatever the reasons, there is a growing shortage of clinical, health, and allied health workers. Factors cited as contributing to the shortage include an aging workforce; high retirement eligibility; difficulty in recruiting and retaining workers; lack of educational, training, and retraining opportunities; high vacancy rates; high turnover rates; lack of opportunities for career advancement; low pay; and/or increased work load demand.

Recently, increased attention (and resources) has been placed on deploying new clinical technologies, devices, and treatments. Initiatives and advances include automated solutions for electronic health and medical records, bio-surveillance and disease reporting, public health monitoring, electronic prescribing, clinical decision support, personal health records, home health monitoring, and remote consultations. As the demand for and ability of these technologies to improve patient safety and quality grows their adoption will (hopefully) be more widespread. Yet, these technical advances also contribute to the workforce shortage because of the growing need for educated and trained personnel to develop, maintain and use these applications, products, and systems. (more…)

Having recently received an email notice from an online health related news service, I was drawn to and intrigued by two pieces about long term care and family care giving. Within seconds I found myself clicking on link after link to see what information and materials I could find that might be applicable to our family’s current situation. I read about additional efforts to provide resources to conduct research on end of life and care giving issues. And we found organizations offering help to family caregivers.

In retrospect many of the signs and symptoms had been there for weeks maybe even months. Fatigue and weakness, weight loss, loss of appetite. “Meryl”, he said, “I am just not feeling well.” But it was more than just being 81 years old and feeling tired. It was more than mourning the loss of his wife (my mom) who had died two years earlier. Dad had been recently diagnosed with stage 4 pancreatic cancer. As he says, “the news was ominous”. For us, the news was indeed emotionally difficult as we discussed and negotiated how to help dad through the weeks and months ahead.

So began a virtual journey as I traveled the equivalent of what must be thousands of Internet miles seeking as much information as I could from dozens of web sites about home health and personal care services, hospice, family care giving, home health care, and end of life care. There in front of me were pages and pages of sites with information. So, what do we do? Hundreds of questions with no right or wrong answers.

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As working professionals with decades of experience in health care, we face several workplace challenges, including co-workers from different (often younger) generations and retirement plans crumbling in this era of economic downturn. As mothers we face the dynamics of child birth and the hair pulling dilemmas of child raising. But it is as baby boomers who are part of the sandwich generation, that I think we are experiencing hurdles more difficult than contemplated. For me, front and center has been the need to confront care planning and end of life decisions for family members living hundreds of miles away. (more…)

The US health care system includes a vast and diverse array of dedicated organizations, institutions and individuals striving to bring quality health care to our citizens. The system includes the front line and hands on workers like those in clinics, offices, hospitals, hospices, laboratories and nursing homes facing the complexities of delivering care in a complex and dynamic environment. The system includes the researchers and scientists seeking answers to some of the most complicated questions of disease and treatment. The system includes teachers and mentors working in schools, colleges and universities helping train the next generation of professionals entering the health care workforce. Our new President and the Congress should assure that we continue to have a dynamic and diverse pipeline of qualified and trained personnel to continue to work in the health and health care system. Workforce development and ongoing education and training is one of the key aspects to the future sustainability of our system and the health of citizens.