As a kid I had allergies and asthma. Because of this, for several years, my mother wrote a note excusing me from the 600 meter run in elementary school. My father took me to weekly allergy shots. At times I had eczema on my forearms and eyes, and according to my allergist, whose notes I later read, I had moderate allergic shiners (also known as dark circles under my eyes). My allergies led to frequent nosebleeds, which got me sent to the nurse’s office in school. Some nose bleeds were bad enough so that I was sent home from school. For years I was in and out of doctors’ offices frequently, when my attacks were severe enough to require treatment with epinephrine injections to afford me some relief. Otherwise, I remained perpetually wired on a daily cocktail of theophylline, Dimetapp, and an occasional albuterol tablet. Despite all of this I tried hard not to be a complete dweeb.
I remember the doctors wanting to put me on oral steroids, which my parents refused. Maybe we were “difficult” patients. My parents were concerned about the long term toxicity of steroids, particularly the possibility of stunting my growth. Perhaps they thought I had a career ahead of me in professional basketball (I am now 5 foot 10 inches). We learned that I frequently would require a course of antibiotics after I became sick with a virus. As doctors became more cautious to avoid antibiotic overuse, our insight about this frequently met some resistance by those who were not familiar with me.
When I was thirteen I was admitted to Mott Children’s Hospital in Ann Arbor, Michigan. I shared a room with two other girls, one from the Upper Peninsula of Michigan, who had some sort of intestinal issue that had required her to have multiple surgeries and hospitalizations. The girl in the bed across from me had anorexia. I remember overhearing intense discussions with her parents and being perplexed about all the talk of food. My illness seemed pretty minor in comparison.
Asthma therapy has changed a lot since the 70s and early 80s, but some of the experiences of being a patient and having a long term health condition remain the same. It was my good fortune to have had an illness that, for the most part, has resolved. Although, it still seems that I am allergic to most living things with fur, much to my children’s dismay. After spending a year living in Brazil and going through a late puberty, in high school I stopped my allergy shots and discontinued most of my medication.
Asthma has played a minimal role in my adult life. Only occasionally do I use my albuterol inhaler before I run. However, having had this illness experience has taught me a few things about caring for patients, and likely contributed to my decision to become a doctor. As a child I remember feeling guilty about my allergies, as if somehow they were volitional, or that I was deliberately trying to get attention by inventing health issues that excused me from participating in various kids’ activities. In retrospect, I am glad that my parents were” difficult” at times, refusing steroids and insisting on the antibiotics that they learned from experience would help make me well.
Here are some of the lessons that I learned:
1. People with chronic illness may feel guilty about the social effects of their illness.
2. People with chronic illness may feel that they are to blame for their illness.
3. Our current culture of personal responsibility may not be helping those with chronic illness with these perceptions, and may lead to increased depression and social isolation in those who have chronic illness.
4. Difficult patients should be listened to and usually bring up valid points.
5. Allergies are not volitional.
6. Patients with chronic illness frequently understand their health conditions better than doctors do.
7. Chronic illness care is more effective in the context of a long term collaborative relationship with one’s personal physician.
8. Family pets are hard to get rid of.
Monday, September 6, 2010
Wednesday, September 1, 2010
Continuity of Care, Lost in the Shuffle
Guest post by Kreton Mavromatis, MD, FACC, Director of Cardiac Catheterization Laboratory, Atlanta VA Medical Center, Emory University
As I entered the clinic room I saw my patient for the first time, an elderly man, slumped in his wheelchair, thin, breathing rapidly, appearing tired both physically and mentally. I wished that I had seen him before. How long had he been this way? Had he been getting worse in the last week? The last day? The last few hours? What was his attitude towards his illness? At his advanced age, how hard did he want to fight to live, to feel better? How much medical and/or surgical treatment was he willing to endure?
It was not the first time I knew of my patient. I had spoken extensively with his referring physician about his heart failure, his other medical problems, and his attitudes. Yet, despite my in depth conversation with another experienced and caring physician, I still had so many questions. If only I had had a relationship with my patient before he became so threateningly ill.
Continuity of care is “the process by which the patient and the physician are cooperatively involved in ongoing health care management toward the goal of high quality, cost-effective medical care.” In today’s healthcare systems, physicians recognize it as a single physician caring for a single patient over time. Yet in today’s healthcare systems, this has been greatly lost. From part-time ambulatory care physicians only available certain days of the week, to groups of obstetricians who have a call system where one physician covers all the others on nights and weekends, to residents whose work-hour limits force them to turnover care to another resident, continuity of care is being destroyed. And it cannot be entirely replaced by careful “sign-outs” and EMRs.
Part of the practice of medicine is a “science.” Much can be communicated in the form of words and numbers describing symptoms, physical exam findings and test results. Yes, I knew my patient was short of breath a week ago when my referring physician had last seen him. But was he short of breath at rest and was he tachypnic? What was his respiratory rate? Was he using any of his accessory muscles to breath? Was he using inter-costal muscles, or just the diaphragm? For each symptom, each physical exam finding, each test result, multiple descriptors could be used to enhance the total clinical picture of a patient. As physicians, we note many of these consciously. But all the details are rarely documented in their entirety in our notes, as doing so would not be “time-efficient.” Furthermore, even with EMRs, these details cannot be conveyed in a practical and timely manner from physician to physician.
Part of the practice of medicine is an “art.” How stoic is a patient? How fearful? How much denial does the patient have? How much fatigue is the patient experiencing? What is the patient’s attitude toward his or her current illness and treatment in the context of his or her current life? Experienced physicians can recognize the answer to these questions through repeated encounters with patients and their families, encounters which involve conversation, the assessment of the body language and facial expressions. However, expressing it verbally to another physician in a detailed qualitatitive and quantitative way is rarely possible.
The evolution of our health care system has resulted in fantastic advances in health care delivery. The use of specialists, with their knowledge of large amounts of complex information and technology, has led to the better treatment of certain individual diseases. Work-hour restrictions have reduced physician fatigue as a source of medical errors, and led to a better quality-of-life for healthcare providers. Increased physician documentation requirements have resulted in data collection that can be analyzed for the purpose of quality improvement. Yet these same “advances” are destroying continuity-of-care, and the single doctor-patient relationship over time, which I believe is so essential to the highest quality of medical care. A new emphasis on preserving and revitalizing continuity of care must be made as our healthcare system continues to evolve.
As I entered the clinic room I saw my patient for the first time, an elderly man, slumped in his wheelchair, thin, breathing rapidly, appearing tired both physically and mentally. I wished that I had seen him before. How long had he been this way? Had he been getting worse in the last week? The last day? The last few hours? What was his attitude towards his illness? At his advanced age, how hard did he want to fight to live, to feel better? How much medical and/or surgical treatment was he willing to endure?
It was not the first time I knew of my patient. I had spoken extensively with his referring physician about his heart failure, his other medical problems, and his attitudes. Yet, despite my in depth conversation with another experienced and caring physician, I still had so many questions. If only I had had a relationship with my patient before he became so threateningly ill.
Continuity of care is “the process by which the patient and the physician are cooperatively involved in ongoing health care management toward the goal of high quality, cost-effective medical care.” In today’s healthcare systems, physicians recognize it as a single physician caring for a single patient over time. Yet in today’s healthcare systems, this has been greatly lost. From part-time ambulatory care physicians only available certain days of the week, to groups of obstetricians who have a call system where one physician covers all the others on nights and weekends, to residents whose work-hour limits force them to turnover care to another resident, continuity of care is being destroyed. And it cannot be entirely replaced by careful “sign-outs” and EMRs.
Part of the practice of medicine is a “science.” Much can be communicated in the form of words and numbers describing symptoms, physical exam findings and test results. Yes, I knew my patient was short of breath a week ago when my referring physician had last seen him. But was he short of breath at rest and was he tachypnic? What was his respiratory rate? Was he using any of his accessory muscles to breath? Was he using inter-costal muscles, or just the diaphragm? For each symptom, each physical exam finding, each test result, multiple descriptors could be used to enhance the total clinical picture of a patient. As physicians, we note many of these consciously. But all the details are rarely documented in their entirety in our notes, as doing so would not be “time-efficient.” Furthermore, even with EMRs, these details cannot be conveyed in a practical and timely manner from physician to physician.
Part of the practice of medicine is an “art.” How stoic is a patient? How fearful? How much denial does the patient have? How much fatigue is the patient experiencing? What is the patient’s attitude toward his or her current illness and treatment in the context of his or her current life? Experienced physicians can recognize the answer to these questions through repeated encounters with patients and their families, encounters which involve conversation, the assessment of the body language and facial expressions. However, expressing it verbally to another physician in a detailed qualitatitive and quantitative way is rarely possible.
The evolution of our health care system has resulted in fantastic advances in health care delivery. The use of specialists, with their knowledge of large amounts of complex information and technology, has led to the better treatment of certain individual diseases. Work-hour restrictions have reduced physician fatigue as a source of medical errors, and led to a better quality-of-life for healthcare providers. Increased physician documentation requirements have resulted in data collection that can be analyzed for the purpose of quality improvement. Yet these same “advances” are destroying continuity-of-care, and the single doctor-patient relationship over time, which I believe is so essential to the highest quality of medical care. A new emphasis on preserving and revitalizing continuity of care must be made as our healthcare system continues to evolve.
Sunday, August 15, 2010
Early Detection of Alzheimer’s Disease? Not Yet, Thanks.
Alzheimer's disease made headlines this week, first with news about a new biomarker test that is able to diagnose the disease with increased accuracy, then with a follow-up story detailing the collaborative model of data-sharing that contributed to the success of recent research.
As I read the news with interest I couldn't help but feel that in our current climate, the manner in which it was reported was somewhat ironic. Just nine months ago experts on the United States Preventive Services Task Force argued that harm, in the form of anxiety related to the detection of breast abnormalities, was too excessive to warrant screening mammograms in forty-year-old women. Just think of the anxiety that will occur if we begin screening asymptomatic adults for Alzheimer's disease.
The unfortunate reality is that despite recent gains in our ability to accurately diagnose Alzheimer's disease, there is still no therapy that has proven effective in preventing its progression. On August 3, 2010 the Annals of Internal Medicine published a summary of this year's National Institute of Health Preventing Alzheimer's Disease and Cognitive Decline Conference.
Alzheimer's disease, the most common form of dementia, is a critical field of study, given the impact that this condition will have on our aging population. At this point the main benefit of earlier and more accurate diagnosis of cognitive impairment and dementia is that it will promote more research on therapeutics on a population level. However, practically thinking, what about the burden that this type of diagnosis could have individuals who go through testing? Is it worthwhile to detect a condition early for which there is currently no definite effective therapy? What would have happened to Ronald Reagan had he had this spinal fluid test when he was sixty years old? Would he have run for president? Would we have elected him? The test may accurately predict Alzheimer's, but does it tell us when? And will happen to health insurance or long-term care insurance coverage for patients after this test is performed?
MRI's are an also an effective means for detecting changes related to Alzheimer's disease, demonstrating amyloid plaque accumulation in patients with Alzheimer's, and distinguishing these patients from those who have other types of dementia, such as vascular dementia, which might be managed differently. However, what about all of our talk of comparative efficacy? Has performing an MRI been shown to alter the outcome of patients with a cognitive impairment or dementia diagnosis? I doubt that it has. I hate to be a cynic, but who will pay for the spinal fluid test, and the MRI, and the neuropsychological testing? And then, the repeat MRIs, and biomarker tests, and neuropsychological tests when the results of the first tests are inconclusive? How frequently will these tests need to be done? These questions are at the heart of the reality that our country faces with respect to the role of medical progress, cost, and health care. But as a physician I advocate mainly for my patient, not for the health care system, so I make these diagnostic decisions collaboratively with my patients, not necessarily with the population level questions in mind.
The Alzheimer's progress is a perfect example of how our country will have to grapple with balancing exciting innovation with the appropriate use of "evidence-based" diagnostics in the coming decade. But how will diagnostics ever become evidence-based if health plans refuse to pay for them? If industry finances expensive clinical trials, should we really be attempting to regulate the cost of their drugs?
In the wonderful book by Audrey Niffenegger, The Time Traveler's Wife, the time traveler witnesses his future death. His fate is unalterable and torments him. Until there is more effective therapy, I, for one, will not be doing the Alzheimer's test. Instead, I will do my best to remain mentally and physically active, control my cardiovascular risk factors, eat my vegetables, consider taking fish oil, take an 81 mg aspirin when I am 65, and wait to see what the next decade of Alzheimer's research will bring in terms of therapeutics. Hopefully innovation will not be stifled by policy change within our country.
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