Earlier this year, the Associated Press and other popular news agencies reported on the disturbing results of a study published in the March 16, 2006 issue of the New England Journal of Medicine that concluded that Americans receive, on average, only 55% of the care that they should receive at any given time 1,2. This study evaluated the care that individuals, from a wide variety of ethnic and economic backgrounds, receive in a variety of different healthcare settings (clinic, hospital, etc.) here in the U.S. The authors came to a conclusion that was, to me, very startling; but, as it turns out, this is not really new information.

With some minor variation across the boards, people were either under or over treated, for a variety of conditions ranging from alcohol dependence to urinary tract infection. This means that, although we have very well defined screening, diagnostic, and treatment protocols, nearly half of the time these protocols were not followed by physicians, other health care personnel, or the institutions in which they work.

While the Associated Press story decried this as “woefully mediocre… care,” and the New England Journal authors concluded that the “problems with the quality of [health] care,” are “widespread and systemic,” I personally see this as an outright tragedy. Although we spend more money on health care than any other nation, and our massive research efforts have well defined the ideal mechanisms to prevent, diagnose, and treat disease, we are still unable to provide our mothers and fathers, sisters and brothers, husbands and wives, with the care that they all pay for, deserve, and that is available. I find the idea repellant that people’s quality and duration of life is routinely compromised in this manner.

Although this is profoundly disturbing, this is also not a new problem by any means, but instead is simply another aspect of an inadequate and dysfunctional health care system. In 1999, the Institute of Medicine (http://www.iom.edu/), a private, non-profit research arm of the National Academy of Sciences, published “To Err is Human,” which reported that somewhere between 44,000 and 98,000 individuals die annually, and that “hundreds of thousands” of others are injured or narrowly escape injury, as a result of avoidable medical errors (also available free on-line at http://www.nap.edu/books/0309068371/html/) 3.

While hospital systems and healthcare providers attempt to begin the lengthy process of remediating this situation by initiating a number of changes across the country (including,as oneexample,instituting an electronic, all-inclusive medical record accessible from any clinic, hospital, or emergency department, among other changes), one area has yet to be addressed - patients are far too often unaware and uninformed about their diagnoses and treatments, and as such, are unable to make informed decisions about their healthcare. Although we are far past the days of following the “doctor’s orders,” and “the doctor knows best,” we have yet to provide patients with one of the best protections available -a thorough understanding of their health and the knowledge to be actively and effectively involved with its maintenance and restoration.

There are a few barriers to this process, however, in the current system. It is not uncommon today that a physician has far less time to examine, diagnose, prescribe and counsel to a patient than the time that it takes to change the oil in your car, or get a haircut, etc. Some physicians, in fact, have to average less than ten minutes per patient! It is impossible to expect that any physician, even the most caring and dedicated, could adequately explain to a patient their diagnosis, treatment, and prognosis within that time frame, and answer questions as necessary. Furthermore, some providers are worse than others at this skill, and the current system most certainly does not encourage or help them in this regard.

The current system does not really value, then, an informed patient. While we are taught in medical school that patients need to be properly “informed” in order to make “competent” medical decisions, the system currently in place clearly does not encourage this sort of activity. If anything, in fact, it discourages it.

The time has come for external systems to try and pick up this role, and to help patients and their families understand any and all aspects of their health. It is unlikely that any time soon physicians will have more time to help better educate patients (new cuts in Medicare reimbursement, as a matter of fact, just approved in July of 2006, will, if anything, make it even harder for physicians to spend time educating their patients). Services must be established (some are already in place) that can help patients answer questions that they might have about their diagnosis or treatment options. Unfortunately, at present many of these services are offered with little oversight as to the quality of information that is provided.

Without the help of a professional, patients often try and find answers for themselves to their health-related questions. While there are many valuable internet resources that are available (WebMD., etc.), there are many more available that offer inaccurate, incomplete, or incorrect information. If taken at face-value by a patient, this can present a profound problem as patients can then base potentially life-threatening or life-changing decisions on this information. So a guide, in many respects, is really necessary to provide accurate information, and then to make sure that the patient understands it.

Improvements like the electronic medical record will most certainly help reduce the incidence of medical errors, and should also help ensure that patients receive care up to the current standard. But improvements must also be made in other areas as well, including patient education, because patients can most often provide far better oversight of their own care than any pre-designed system, no matter how “high tech” it might be. It seems that patients have already realized this, and are seeking out information from any available source. Hopefully hospital and insurance administrators, and government officials and healthcare providers will also realize this, and dedicate funding and efforts to fill this substantial, but presently ignored, gap in the provision of healthcare.

- Jonathan Fay, M.D., August 14, 2006.

References

1. Asch SM, Kerr EA, Keesey J, et al. “Who is at greatest risk for receiving poor-quality health care?” N Engl J Med. 2006 Mar 16;354(11):1147-1156.

2. “Study Says Americans Get Equally Mediocre Health Care” - Jeff Donn, Associated Press, 3/15/2006.

3. To Err Is Human: Building a Safer Health System. Institute of Medicine, Committee on Quality of Health Care in America. National Academy Press, Washington, D.C. 2000.

Copyright © 2006 Jonathan Fay, M.D.

Dr. Fay is a personal medical consultant, providing answers to patients’ questions about their health, diagnosis, and well-being (available on the internet at http://www.doctorfay.com). He has helped thousands to better understand their health, and to be in a far better position to be highly involved in their own healthcare. As such, patients can make better decisions about treatment options, that better fit their own personal preferences (and not those of their physician, another provider, or anyone else).

Dr. Fay is also the author of numerous articles about the state of healthcare today in the United States, new developments in medicine, and articles to help explain medical treatments and diagnoses in terms that patients can easily understand.

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Men and depression, women and depression, it doesn’t matter. Depression crosses all genders, ethnic groups and economic classes. The Centers for Disease Control studied the importance of integrating the mind with the body in our healthcare system. It is a fabulous study. I want to share the key points as they affect every family, family member or loved one.

The separation of mental and physical health that exists in our health care and public health systems belies the fact that both exist within individuals in an exquisitely integrated fashion. This April issue of Preventing Chronic Disease explores that integration. Preventing Chronic Diseases is published by the government’s Centers for Disease Control and Prevention(CDC).

The definition of health provided by the constitution of World Health Organization is unambiguous in this regard: “Health is a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity” (1). If we are to achieve this goal of complete well-being, we will have to bridge the chasms within our health care and public health systems.

“The Carter Center has undertaken these same strategies to address barriers to care among people with mental illness, many of whom have a chronic mental illness. An article on The Carter Center Mental Health Program (8) describes an impressive set of activities focused on reducing stigma and achieving parity in insurance coverage for mental illness. We would do well to form close collaborations with partners like The Carter Center and to join forces in developing policies and communication strategies that benefit both the mental and physical health of populations. We can claim success when the mental and physical components of our health care and public health systems are as integrated as they are in the people we serve.”

I concur 100% with this terrific article. After suffering from depression for 20 years and trying countless treatments, including ECT, it was vagus nerve stimulation that completely changed my life. Vagus nerve stimulation changed my life from one of utter despair to genuine happiness and joy. I am so grateful for this remarkable medical breakthrough. My body got better; lost 35 pounds, chronic pain diminished, cholesterol returned to normal and I have taken responsibility for my health-emotional and physical.

If you are suffering from chronic depression, you should discuss this new therapy with your doctor. Vagus nerve stimulation was just FDA approved, so the medical community is also learning about this treatment option.

Vagus nerve stimulation will be presented at the American Psychiatric Association’s Annual Meeting in late May. The book I wrote Out of the Black Hole: The Patient’s Guide to Vagus Nerve Stimulation and Depression will be exhibited at this meeting, which is the largest gathering of psychiatrists in the world.

If you want to learn more about vagus nerve stimulation for depression, I would encourage you to visit http://www.VagusNerveStimulation.com web site. It could change your life or the life of a loved one.

Charles Donovan was a patient in the FDA investigational trial of vagus nerve stimulation as a treatment for chronic or recurrent treatment-resistant depression. He was implanted with the vagus nerve stimulator in April of 2001. He chronicles his journey from the grips of depression thanks to vagus nerve stimulation therapy in his book:

Out of the Black Hole: The Patient’s Guide to Vagus Nerve Stimulation and Depression

His all inclusive book prepares depression sufferers to make an informed decision about this ninety-minute out-patient procedure. It is a “must read” before you discuss this treatment with your psychiatrist. A prescription for the procedure is required from an M.D. and it is covered by most insurance plans.

He is the founder of the http://www.VagusNerveStimulation.com Web Site and Bulletin.

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My father was sitting on the sofa in his condo when I suddenly saw a look of fright fill his face. His eyes opened wide, and his face contorted. He started screaming, raising his arms to cover his face, and kicking his legs out in front of him. “HELP! HELP! GET AWAY!”

I sat there in shock, not knowing what was happening or what to do. Prior to this,
we were having a conversation and all was okay, except he thought I was his
mother, as if it were a day in his childhood.

I yelled back, “What’s happening?” He said monsters were coming through the walls.
I never saw someone so frightened. His body was in a fetal position, and he was
crying as if he were a child living out his worst nightmare. I jumped up without
thinking and grabbed the chair I was sitting on and began swinging it around. I tried
to force these invisible monsters out of his home, but to no avail.

I ran over to my father, grabbed his shaking body, and held him tightly in my arms. I
began talking to him as if I were his mother; mixing the words I somehow
remembered hearing in Yiddish and Hebrew when I was a boy. “Sha (Be quiet), Izzy.
Hineini (I’m here).”

“Make them go away, Mama,” my father pleaded like a child.

And that was what my father had become.

I was now the parent.

My father grew up in Brooklyn, New York, a Depression-era child, scared of the
world. My grandparents, immigrants from Rumania, spoke Yiddish, a combination of
German and English, and other Eastern European languages. My grandmother
passed away when I was a teenager, and I was now in my forties, but to my father I
was his mother at that moment. Where the words came from I don’t now, but after a
lifetime of listening to my parents speak Yiddish at the dinner table so my brothers
and I wouldn’t know what they were saying, and taking German for a few years in
high school to find out what they were saying, I had picked up a few words and
phrases.

I rocked my father in my arms and screamed at these intruders, “GENUG! (ENOUGH!)
GAI KOCKEN AHFEN YAM!” (GET OUT OF HERE!) until his crying subsided, which told
me the monsters were retreating. “Izzy,” I said. He opened his eyes and looked at
me. “Gornisht! (Nothing!) Farshtaist? (You understand?)” My father stopped shaking,
stopped crying, only now I was shaking and crying. No one wants anyone to suffer
such horrific fear.

But, my father had Alzheimer’s disease.

Suffering and torment was only the beginning of the nightmare.

While my father was still living, the stress it put on my mother was debilitating. She
did her best with him until her nerves got the best of her. I sent her to Houston for
two weeks to stay with my brother. I moved out of my own house, with the blessing
of my wife and children, and into my parents’ condo. As a writer, I was fortunate
enough to work my own schedule, so I spent all day with my father cooking meals
that his mother used to cook when he was a boy, hoping to make him feel more
secure. I purchased his favorite foods and treats, and I took walks around his condo
development, talking to him about the past and trying to bring the present into the
conversation. I never mentioned his disease to him. I find too many people talk to
Alzheimer’s victims as if they’re not there, and/or they try to correct the mistakes
they make. They are going to forget a few minutes later; however, those few
minutes of confusion fills them with terrible trepidation and guilt. The two weeks I
spent with my father, I was either his mother, or sister, and I played the role. I never
allowed him to feel uncomfortable or confused or angry with himself. You can’t
reverse the effects of Alzheimer’s disease, so the best a caregiver can do is to ‘go
with the flow’ and bask in the victim’s moments of happy reflection, or segue into
something that will make the victim’s mind switch gears from the torment of not
remembering.

Alzheimer’s disease comes in four stages. The first stage can go unnoticed for five
to ten years. The second stage is when the person knows he or she has the disease
and is angry at themself because they can’t remember what they are saying. The
third stage is when the afflicted no longer knows he or she has Alzheimer’s and it
no longer bothers them. This is the calm before the storm, the time some greater
force gives us to strengthen our resolve to withstand the onslaught of the end.
Alzheimer’s disease, depending on the person’s care and genetics can last from a
few years to 10-15 years in length, and sometimes longer.

My father finally got to the point where we couldn’t take care of him anymore. He
couldn’t dress himself, he didn’t want to eat, he couldn’t bathe, and he couldn’t
control his bodily functions. We had a family meeting. Because of the effect it was
having on my mother, my brothers and I decided it was time to place him in a home
where he would get better care. However, no one can take care of an Alzheimer’s
patient better than their loved ones in a familiar familial setting. Friends, aides,
church/synagogue members, and support groups will help out if you ask for that
help (that’s what your local Alzheimer’s chapter is for). It is not the time to be
proud.

We told my father he was going into the hospital (not a home, which scared him)
because he wasn’t eating and we needed to build up his strength so he could come
home. We told him that every time he said he wanted to leave with us. (Sometimes
you have to hide the truth to assuage their fears.) It was a sickly feeling walking
away from him that first time, leaving him in the company of strangers, some who
were so far gone that it was like an insane asylum for children. As I left, I turned and
looked at him sitting in a wheelchair, scared. I felt like I was abandoning him. He
looked as if he was being abandoned.

I never felt so guilty in my life.

My father got worse very quickly. He would walk into other peoples’ rooms and get
in their bed, thinking it was his room. He would sit in the cafeteria staring at his
food, not knowing what to do with it, until he wilted down from 180 pounds to 105.
He smiled whenever he saw us, but I don’t think he knew who we were. However, we
continued to visit him regularly, hoping he might have a second of remembrance
and happiness.

My father and I had a special relationship. I became what he always wanted to be. I
was in show business. At the opening night performance of my Broadway musical,
CANTERBURY TALES, I remember watching him stare at my name above the title, the
pride so evident on his face. When the show ended, I watched him stand with the
audience, applauding, tears streaming down his face. He thought I could do
anything. My father, although a brilliant artist all his life like his own father was, was
foremost a teacher in my eyes. He taught me to reach for the stars, to dream, and to
not give up; to be who I am, to be proud and confident, to seek solace with my
conscience, to revere wisdom and beauty, to hope and help others. I never
remember him voicing a negative comment, nor speaking a harsh word, nor
espousing a prejudicial epithet toward, or about, anyone or anything. There was a
preponderance of love in him, a love that was visible and shared with all he came
into contact.

Family was all-important, all encompassing to my father. He loved my mother
unconditionally, and his children and grandchildren passionately. He wasn’t a
religious man, nor was he a pious man. To him, humanity was his persuasion. To
live life with dignity, with compassion toward (wo)man and nature, and respect for
yourself, made my father a reverent man, a humanitarian, in our eyes.

Finally, after four years, my father’s kidneys failed and he was rushed to the
hospital. The family was called, and as we had a DNR (Do Not Resuscitate) order, we
went to the hospital to stay with him until he passed on. I remember my brothers
and sister-in law, and my wife and children, kiss him goodbye in the emergency
room. He was slipping into a coma, and it was heart-wrenching watching him leave
us. I was the last one to say goodbye. I took his hand, kissed his cheek, and
whispered in his ear how much I love him. I then said, “I just got my first novel
published.” To my shock, and happiness, he squeezed my hand slightly to let me
know he was proud of me.

It was the last memory my father took with him.

And it was beautiful for both of us.

Bruce Schwartz is a political activist and author of the #1 Amazon bestseller, THE TWENTY-FIRST CENTURY, the story of a nationwide terrorist attack, which ignites a race/class war seven days before the American presidential election. He has also written other novels, three children’s books, and six musicals. He is presently writing the screenplay for THE TWENTY-FIRST CENTURY, as well as a weekly TV dramedy. He has received numerous accolades for his writing. His site http://www.thetwentyfirstcentury.com is offering a 3-day, 2-night vacation to one of 90 destinations (no time share, no sales pitch of any kind) for buying a copy of this timely and topical novel. He will also autograph the book for you.

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