There is a Holocaust in health care today. People are maimed, disabled, or killed across America as a result of under use, overuse, misuse, and abuse by our health care system. We often wander, unknowingly, onto this health care battlefield, unaware of the potential dangers that may befall us.

"I have good news and bad news for you," my doctor said. "The good news is that you do not have cancer. The bad news is that you did not need the surgery. The genetic test revealed cells belonging to another patient, a man, on which we based your surgery." In shock, I could only wonder at that moment of how this could happen. I was overcome with anger, fear, and disbelief. This was now the second occurrence of a doctor calling me with distressing news.

The first of these occurred in September of 2000 as I was driving my car. I received a call on my mobile phone from my doctor informing me that a routine colonoscopy had revealed a malignant cancer in my small intestine. I was in such shock that I had to pull off the road. "There must be a mistake," I pleaded hopefully. But my doctor told me that he had personally reviewed the results in the pathology department because he, too, could not believe the results. "You need to go immediately to one of the two surgeons I recommend," he insisted.

As a health care specialist, I have provided advice on health care issues to two governors, the state legislature, large corporations, smaller businesses, and the public. I've authored a book on the subject. And so, I followed the advice I'd so often given, professionally, to others: I had asked the right questions; I had a family member accompany me to the surgeon's office to ensure a thorough understanding of the diagnosis and recommendations; and I had obtained concurrence from another medical professional on the diagnosis and treatment plan.

During the hours of major abdominal surgery that followed, an incision was made from my breasts to my pubic bone. The surgeon explored all major organs to ensure detection of any further metastasis, and then removed parts of my ileum and colon. He had, however, not found any cancer.

Immediately following the surgery - and during the next few weeks and months - my surgeon and the nurses seemed to avoid any questions regarding the removal of my cancer. As a strong communicator and public speaker, I garner information from both spoken and unspoken messages. During each encounter with these professionals, their nonverbal communication, evidenced through body language, indicated such uneasiness that it began to appear they were concealing important information. My family and I suspected that some kind of an error had occurred.

At my six week check-up, still having problems with my digestive tract, I requested a set of my medical records and asked for a genetic test that would compare my cells with those found in the pathology report. I knew from my health care background that DNA testing could definitively confirm whether the pathology cells from which my surgical recommendation had been made did, indeed, belong to me.

From mid-November to New Year's, I was very sick. Since we did not have the medical records or direction from the hospital for follow-up care, my primary-care physician couldn't help. She supported my efforts to get the information from the doctors, but even her vigilant appeals for both my records and results appeared thwarted.

Finally, forced to threaten a formal complaint to the State Department of Professional Regulation (the regulatory licensing agency for doctors), I received a response from the doctor regarding the results of the genetic test. That's when called and gave me the "Good News-Bad News" story. I was furious because I had been violated, unjustly maimed, and needlessly disfigured for life. Anger and shock prevented me from achieving mental, physical, and spiritual balance. I lost trust, calm, and peace. Unable to resume work full time, my finances were falling into disarray. I was depressed and unable to function normally. I did not want to see or be with anyone.

Then, with new resolve, I vowed to use my remaining energy and resources to fight back. I had to obtain my records so that I could receive appropriate medical treatment. Five months later, I secured an attorney, and we sought relief through the courts. The lawyers from the "noted university hospital" where I had undergone surgery stated to the judge the hospital had "lost" my medical records. Miraculously, my records were located the following day after the judge "threw the book" at them! My new doctors reviewed this medical information and confirmed that a part of the intestine the surgeon removed was necessary for proper digestion. As a result of the surgery, portions of my digestive tract no longer work as they should and I must take medication daily for the rest of my life!

My story continues. Nearly one year later, in an attempt to garner back my physical strength, I was referred to a noted physiatrist specializing in physical medicine and rehabilitation. To rule out major problems causing the discomfort, an abdominal CT Scan was ordered. Somehow, records belonging to a patient suffering from renal cell carcinoma was included in the report from my scan. The physiatrist informed my primary care doctor, my gastroenterologist, and me that the scan revealed a very serious cancer and pulmonary problems. As unbelievable as it may seem, this second misdiagnosis was based on CT film that revealed areas of the body that had not even been included in my scan!

We secured the professional opinions of three additional physicians. These doctors reviewed the film and the medical report. All three confirmed that the diagnosis had been made in error based on another patient's information and recommended that I obtain a second CT Scan at another hospital. The new CT Scan was negative for both the renal cell carcinoma and for pulmonary problems in the previous report. All three doctors were astonished to learn that two major medical errors could happen within such a short span... and to the same patient! To their collective disbelief and amazement, one truth did emerge for these doctors: If medical errors of this magnitude and frequency could happen to me, they could surely happen to anyone, including members of their own families.

All of us assume the health system will take care of us. We've been taught that doctors, hospitals, health centers, and other medical caregivers have our care and well being as as a top priority. But my own personal experiences with documented evidence of medical errors leads me to new conclusions. I have been battling on behalf of the public for many years as a health care specialist and as the consumer representative appointed to the State Health Care Board in Illinois. At the forefront of this battle, I conclude that misdirected financial priorities, coupled with errors made by overworked and under-resourced professionals, affect the administration of appropriate medical diagnosis and treatment for the consumer. The quality of medical care in this country has been sacrificed and as a result millions of patients are maimed, disabled, killed or otherwise caused to suffer each year in this medical holocaust.

Let me share another story with you. I learned Mari's story from her mother's friend. Mari* was a beautiful and loving young woman. She captivated everyone with her charismatic personality and sunny blonde hair. Late one night while home alone, Mari began to experience the most painful headache she had ever had. The pain was so severe that she decided to seek relief at the nearby university hospital. Following a cursory examination by the emergency room doctor, she was told to go home, take a few aspirins, and "sleep it off". Mari left the hospital without benefit of any scan, x-ray, or other type of costly test. Days later, when her mother and friends couldn't contact her, they went to Mari's apartment and found her laying unresponsively on the floor. Mari was rushed to the hospital where tests revealed that she had suffered a brain aneurysm. Nearly four years later, this beautiful woman lays curled in a fetal position without knowledge of who or where she is. Her mother and father have lost their child, their life savings, and their own health trying to provide appropriate care for their daughter.

And then there was Al. I knew Al as a member of our Rotary Club. His short, chubby frame, bald head, and gentlemanly grace reminded me of "Yoda," the wise and knowing master of the renowned Star Wars trilogy. Al came to America from Venezuela while in his twenties, married, had a family, and started his own business. When he was told that he needed to have knee surgery he never questioned his doctor in spite of his family's urgings to secure a second opinion. Al had only known respect and admiration for doctors, so the notion of questioning any medical recommendation was quite foreign to him. But instead of operating on his troublesome knee, the surgeon mistakenly operated on Al's hip. Now in pain from both his knee and his hip - and just barely surviving complications from the anesthetics given during the surgery - required Al to move from the hospital to rehabilitation in a nursing home setting. There, he became malnourished and weak from increasing health problems such as broken bones, bedsores, and digestive complications. His daughter, a nurse, finally placed a call to "911" from his nursing home room in order to get her father to a hospital for proper care. Unfortunately, this care came too late and Al died several days later.

My beloved, eighty-six-year-old aunt became very ill, and as her devoted niece, I was summoned to her bedside by her family because she was dying. I flew to Florida where she had been hospitalized, and was delighted to find her coherent and very specific about her wishes. My aunt had opted for a surgical procedure that would enable her to obtain sustaining nourishment and this surgery had been slated for the following day. I was shocked, however, to learn that my aunt's physicians and the providers of her HMO had decided that the quality of her life would be compromised. They had already advised her immediate family against the life-saving and life-prolonging procedure.

I immediately called the hospital administrator to inform him that the patient was of sound mind and was electing to have this life-saving procedure. The administrator scheduled a meeting with my aunt, her family, and the doctors, during which my aunt confirmed for everyone her desire and her right to have the procedure as a way to live out her life. But rather than perform the procedure the next day, the doctors deliberately delayed and overruled the lifesaving surgery. I remained with my aunt as her advocate as she fought a battle to obtain the desired procedure. By the time, days later, that I was finally able to secure consensus from all the necessary players to proceed with the procedure, my aunt had become too ill and weak to undergo the surgery. She died several days later.

Each of us, as potential victims of this senseless health care battle, need to have a voice, especially in memory of those whose voices that cannot be heard. Many nurses, doctors, hospital administrators, and health care providers have shared with me their sincere commitment to save the patient. However, due to financial, bureaucratic, or time constraints, they acknowledge that patient safety is frequently compromised by the very systems devoted to patient care.

In the summer of 2001, with the help of friends, family and colleagues, I established SAVE THE PATIENT, a non-profit, tax-exempt charity whose mission is to educate and empower patients and the public at large to make effective and informed health care decisions through the utilization of objective resources. SAVE THE PATIENT provides resources and services that assist individuals of all ages, cultures, and socio-economic backgrounds in making sound health care decisions.

Many cultures, ethnic groups, and races are represented on the Board of Directors and the Advisory Panel for SAVE THE PATIENT. Many of our members have expertise in public, private, and corporate fields such as health care, management, and marketing. These individuals recognize the growing need for all individuals to gather non-biased information to better understand and make sound decisions regarding health care. According to the Institute of Medicine, statistics show that deaths due to medical errors in the United States have been estimated between 44,000 and 98,000 annually - accounting for more deaths than from motor vehicle crashes, breast cancer, or AIDS. The U.S. Food and Drug Administration (FDA) estimate 1.3 million Americans are injured and at least 400 die each year from medication errors. According to a recent Chicago Tribune investigation, "a hidden epidemic of life-threatening infections is contaminating America's hospitals needlessly killing tens of thousands of patients each year." This investigation found that of approximately l05,000 deaths in 2000 linked to infections acquired in hospitals nearly 75,000 deaths were preventable, the result of unsanitary facilities, germ-laden instruments, unwashed hands and other lapses. According to the Tribune report, "Infection rates are soaring nationally, exacerbated by hospital cutbacks and carelessness by doctors and nurses. Deaths linked to hospital germs represent the fourth leading cause of mortality among Americans, behind heart disease, cancer, and strokes, according to the federal Centers for Disease Control and Prevention. These infections kill more people each year than car accidents, fires and drowning combined. " The American Hospital Association stated in the article that the last decade of unprecedented cost-cutting and financial instability has impacted all areas of hospital care, including infection control. These unfortunate deaths might be avoided if consumers were given important information regarding their health risks, were prepared with appropriate questions to ask their doctors and hospitals, and were provided with the most current and accurate information by their health care providers.

The imbalance between the growing wealth of medical information and technology and the lack of knowledge and understanding by the general public increases day by day, creating an ever widening communication gap between providers and patients. Some providers assume their patients know the benefits and risks of medical procedures and medications. Patients believe the doctor will inform them about all facets of their medical care. Yet, the medical language spoken is sometimes unintelligible to the patient and when language translation is a factor, the problem becomes more and more complicated. Due to time and financial constraints, more and more providers are now recognizing that the public needs a higher level of community outreach and educational support from objective resources.

Recognizing the dilemma, SAVE THE PATIENT aims at mitigating this imbalance by providing the needed information through Patient Advocacy, Community Outreach, Educational Seminars, the Internet, and Health Caring Cards.

Patient Advocacy works onsite with the goal of educating health care providers, community-based organizations, and caregivers about improved communication and understanding in the health care setting. Community Outreach trains patient advocates to assist those individuals who need assistance in their native languages in communities where English is not the primary language. Educational Seminars provide workshops for medical advisors to train-the-trainer about effective communication skills that inform the public about patient's rights, medical procedures, and treatment options. Those who give medical care can form partnership with those on the receiving end, each bearing some of the responsibility and each having as their number one priority the health of the patient. Our SAVE THE PATIENT'S website provides for the public objective and user-friendly health care information. Links to accredited websites in several languages enable a multitude of multi-cultural and multigenerational groups to have age- and gender- specific information. Health Caring Cards are made available, either through the website or mail as wallet-sized, laminated cards containing pertinent questions that should be asked of doctors, surgeons, hospitals, and prescription drug providers. These relevant questions have been suggested by experienced physicians who are affiliated with SAVE THE PATIENT and are likely to enhance a patient's understanding of any medical encounter. The questions appear in English on the front of the card, with Spanish, Polish, Korean, Chinese or Vietnamese on the reverse side.

Additional languages - including Braille - will be added as increased donations and funding are received. These Health Caring Cards are free to the public.

One person can make a difference. Sometimes, a need is born and recognized from tragedy, suffering, and sacrifice. We learn from these unfortunate circumstances. It is a way to ensure that similar mistakes are prevented. For Mari, my aunt, Al, and the millions of people who are, were, or might be casualties of the health care battle, I urge you to join SAVE THE PATIENT and me as we dedicate ourselves to ensuring that every person, regardless of socio-economic level, age, sex, national origin, race, sexual orientation, or culture has an opportunity for a full and healthy life.

* Mari's name has been changed to protect the privacy of her and her family.

Lenore Janecek,
Founder and President of SAVE THE PATIENT