The Narrative in Medicine

It is each person's story that makes medicine an art and not only a science. Each person who seeks care, is seeking more than just a scientific approach to their particular symptom. Rather they are looking for someone to listen to their concerns, understand their life, and help them in a way that is unique to them, not only to help them in a way that is in keeping with a guideline or a standard. Often in our debate over health reform, and our focus on insurance coverage and economics we lost sight of those critical stories.

A Hopeful Trend

A good physician should therefore be a great listener. A great teacher of medicine should be someone who understands how to tell a patient's story in a way that helps developing physicians (and physicians should be developing throughout their careers) become more attuned to the particular chords in a patient's story. Historically, some of our greatest modern storytellers have been physicians. From John Keats, to Arthur Conan Doyle to 20th century authors such as William Carlos Williams, Oliver Sachs and Abraham Verghese. A number of medical journals including Health Policy, JAMA, and the Annals of Internal Medicine now have as part of their editorial policies, regular narratives that describe the doctor and patient "stories" in ways that are human, caring and understandable. That trend towards better storytelling, is one that is likely to improve medical care. But can it effect medical costs and medical quality?

The Health Savings Paradox: A Story

It turns out that when you develop health care programs that give professionals time to listen, despite what may seem like worse productivity, medical costs go down as a result. This is best demonstrated (of course) with a story that is published in last week's JAMA. In "Going Home". Dr. Anne Jacobson tells us of Maria, As Dr. Jacobson states,

"Maria, like many of my patients, had grown up and lived most of her life on a ranch in Mexico. She immigrated to the United States because her husband was coming here, and for her that meant she did not have a choice. In the stories that emerged over the years, I heard terrible tales of violence endured during the early decades of her marriage. After she left Mexico the physical abuse stopped, but her husband still controlled where she went and what she did. The two places she was allowed to go without much interference were to church and to the clinic. She visited both frequently"

Dr. Jacobson paints a picture of a woman, not only a patient. She describes how Maria's health improved because she had someone to talk to and someone who was truly interested in her story.

"Her physical symptoms began to improve, and we spent infinitely less time chasing the source of multiple complaints. For years her blood pressure and cholesterol level were not as well controlled as I would have liked, perhaps because both of us knew that something deeper was broken inside. Still, I fretted over the numbers and tried to make changes that wouldn't overwhelm her. As she started to believe in herself, she also began to believe that her body was worth taking care of. She started taking her medicines just like she did everything else—religiously. And one miraculous day, I shared her latest laboratory results with her—all exactly where they needed to be—and told her I was proud of her."

The Flip Side

The story as told by a skilled medical story teller show vividly how listening to a person's story and helping them as they take their life's journey improves care and saves money. To do that it takes time and as we try and save money in health, we often try to do that by decreasing the time physicians spend with their patients. When this happens, costs can go up or patients can try to find other reasons to see the doctor that are drive up cost and risk to the patient. In another story in JAMA published earlier in November, Dr. Nir Lipsman brings this phenomenon to life.

"Pulling the curtains aside, I saw a familiar face. We had operated on her three times in the last three months, and now she was back. "You like the food here, I guess," I conjured up somewhere from a deep and far-gone sense of humor at 3 AM. She had fallen and re-bled in her brain, and she would need another operation. We had become her family over these months; she lived alone, with her own family either dead or having abandoned her. Does anyone deserve this kind of treatment?
Am I asking about our treatment or her family's? I don't remember. I got her consent for surgery; she knew the risks and recited them from memory, always a good sign. I told her that this time we'd try to get it right, and the fleeting thought crossed my mind that maybe she fell on purpose this time."

Let's Not Lose the Narrative

As we debate health reform and deal with the problems of access to care and health care costs, we should always remember that medicine as an art requires physicians, nurse and others who can listen to patient's's unique stories. Patients are just people striving to survive and sometimes reaching for greatness in their own ways. Understanding their narrative is all about caring and not just about care. It recognizes the patient as a person rather than the simple sum of their symptoms. That is truly the art of medicine and the author physicians of our time understand and communicate that for the betterment of medicine. My hope is that any reform that is passed does not make it more difficult to hear our patient's unique stories.

Answering Questions

On the average of three times a week, I get calls from people asking my advice on issues related to health.  The requests for advice fall into two categories.  They may be about individual medical decisions such as from a family member thinking about whether to have knee surgery, an executive in a managed care company asking about home care options for a chronically ill child, or a senior executive in an unrelated industry asking about a complex issue involving an employee or even a family member.  They may also be about health policy such as the call from a businessman asking me to explain how the provisions of the current health care bill passed by the Senate may affect his business.  While many of these people have other experts they can turn to, I believe that they call me because of a number of factors.  They know that whether speaking about individuals or about matters of finance and policy, I will think about what will contribute to delivering the best health care available in a caring, efficient manner, and they also know that I will not make a decision for them but will instead help inform and support them in their decisions.  My goal is always to frame and clarify a question rather than give an answer.

My Philosophy of Medical Decision Making

Whether the question is “macro” (policy) or “micro” (individual) I approach these questions with a certain philosophy that has three major components.  The first is that is that the best medicine and the least expensive medicine is the most personal, that is it is the most customized for the particular patient in that particular situation.  The second is that everything in medicine has side effects (and often hurts) so that all decisions for evaluation and care must be made with thought.  The third and the most important is that each individual is the only true expert on themselves and therefore they are in the best position to make their own decisions.  My view is that health care is too important to be left to the sole discretion of your doctor or an insurance company.  The best model is one in which the doctor is a partner and an advisor making decisions for you only if you want him or her to do so.  The most important role of a doctor is to make the complex simple and help each individual have all the facts they need to make the right decision for themselves.  In the same way, the best insurance product, whether designed by the private marketplace or by government, is the one that makes needed care easily accessible and helps people make the right choice for themselves. 

Micro Example: Everything Hurts

I have always believed that a minor medical procedure is a procedure that someone else has.  Everything that is done to me or a family member is major.  Lest you think I am some sort of monster who only cares about myself, I believe that to be true for everyone.  An article this month in JAMA is related to this point by carefully evaluating post operative pain in woman who have had breast cancer surgery at 2 years after the surgery.  The study showed that about 50% of women had chronic pain at two years and that they had pain even with breast conserving, minimal surgery.  How many of them knew to expect that?  How many of us are truly told about the potential side effects and long term results of medicines, surgeries or even of diagnostics studies?  (Did you know that the average CT scan exposes you to more than 100X the radiation that a chest x-ray does?)   Even the simplest test can put someone at risk.  A good physician should be someone who explains the potential risks and benefits of anything you have done to you, in a way that is understandable to you. 

Macro Example: The True Expert

The debate over health care reform is partly being driven by the fear that a new program will impinge upon individual’s rights to decide (with their physicians) what the best course of therapy is.  People are afraid of losing whatever autonomy and flexibility they currently have with the new proposed legislation.   They are afraid that the new health care system that Congress may unveil will only decrease their control over their own health care decisions.  An article in the New England Journal of Medicine makes that point.  While this article states that according to polls people want health care reform, it also says “most Americans do not believe they will be better off if the current legislative proposals as a whole are enacted. Most, but not all, of the polls show that among people who see the plan as affecting them personally, more believe they will be worse off personally and in terms of the cost and quality of their care than believe they will be better off (CBS, October; NBC, October; Gallup, October).”  Thus far the political debate has not focused on whether we will be giving people more information when they need it and whether we will support the individual’s right to make their own decisions.  Instead we are caught up in political posturing on both sides of the aisle and the bill that is being produced tries to satisfy everyone by saying “yes” to everything except individual autonomy.  Until health reform recognizes the patient as their own true expert, it will be hard to achieve optimal care at the lowest cost.  In both policy and practice, I do have more faith in the public than in the “expert” legislators.

Interpreting Public Health “Facts”

As I discussed in my last blog, interpretation of medical facts is often crucial for individuals who need to decide on their own approach to care, such as in the decision whether to obtain screening mammography at age 40 or 50.  Equally important, especially with the current public debate about health care reform, is the ability to interpret public health “facts”.  A recent article in the Journal of Public Health entitled “Analysis of 23 million US hospitalizations: uninsured children have higher all-cause in-hospital mortality” illustrates how the straightforward often is not as straightforward as it seems. 

Causation and Association

The article starts out by stating in the introduction that the goal of the study is to “characterize the impact of insurance status on inpatient mortality and costs of care”.  It then, in the discussion at the end states, “we estimate that 16,787 deaths might have been prevented over this time period assuming lack of insurance was the driving factor”.  It actually gives no data to support the premise that lack of insurance was the driving factor.  The study does show that lack of insurance is associated with an increased death rate but it is important to remember that just because two things are associated does not mean that one causes the other.

For example, is it possible that people without insurance are of a lower socio-economic strata and may have more social problems?  Are there more single parents in that group?  Are there more children whose parents, due to social issues, are battling drug abuse and alcoholism and then the children are not receiving adequate care on that basis?  There are many factors that are associated with lack of insurance that suggest that the increased mortality is just as likely related to those other factors as it is to the lack of insurance.  One thing is clear and that is that this study does not tell us anything about the “impact of insurance status on inpatient mortality” and instead only tells us of the association between lack of insurance and inpatient mortality.  No causation is shown. 

Other Factors Not Addressed

In every public health study, it is often the other factors that are not addressed that are most important.  In this study, for example, the largest number of deaths above what you saw in children with insurance, occurred in the  newborn period.  The lesson I would learn from this is that there is an association between poor prenatal care and death rate for newborns as any woman who wants prenatal care can get it via public health clinics as well as urban health centers.  Women who receive prenatal care at those centers also tend to obtain Medicaid coverage or other coverage thus the newborns would also be expected to have some coverage at the time of birth.  That factor was not mentioned in the study.

Be Careful of Hidden Agendas and Biases

There is no such thing as a study totally without bias and studies can be useful even if bias is present.  However to really use a study, be sure to look at what was studied and what was stated on the basis of what was studied.  Often the topics studied have little to do with the conclusions that are drawn.  In this political environment, that is especially true.  So read the studies and be careful of the headlines.

The Mammography Controversy – Interpreting Medical “Facts”

The practice of medicine is a game of probabilities.  While often (but not always – but that is the subject of a separate discussion) based on scientific fact, those facts themselves are always dynamic and a good physician is always trying to predict the future which while based on facts is ultimately unknowable.  Will the illness get better or worse?  Will this medication or treatment make the patient improve or will the side effects and risks of the therapy actually create more problems?  Will this screening test discover an illness that can be cured or will it actually lead to further tests and therapies that are, in and of themselves, dangerous?  All of these questions are asked about future events and the unique, individual nature of each of us means that medical “facts” are sometimes not facts at all, but educated guesses based on the interpretation of studies.  Even when dealing with population wide public health issues, the “facts” from studies and from expert panels cannot be divorced from simple laws of statistics and probability and are rarely incontrovertible.  These same facts when read by different people can also be influenced by the most human of emotions and even by political desires. 

Screening Mammography

We see that in the political firestorm that has erupted over the US Preventive Services Task Force (USPSTF) recommendations that were announced this week that state that screening mammography should only be performed on women over 50 and only once every two years.  This is different from the standard recommendations which are still supported by the American Cancer Society which recommend mammography every year for all women over 40.  What made the USPSTF take this step?  Let’s look at what makes a good screening test.  Any screening test is limited by its sensitivity and specificity.  They are:

sensitivity = probability of a positive test among patients with disease

specificity = probability of a negative test among patients without disease

If a test is sensitive but not specific, you will have many false positives.  In medicine a false positive often means great anxiety in the patient and may also mean invasive procedures (such as breast biopsies and even breast surgery) which puts people at risk.  In this case the USPSTF looked at all the studies that have been done concerning screening mammography, including recent studies that specifically looked at women aged 40-50 and determined that there were enough false positives in this group that the risk of unnecessary procedures outweighed the benefit of finding a breast cancer at an early enough stage to be curable.  The American Cancer Society (ACS) and some of the other organizations that are criticizing this move are looking at the same data and coming to a different conclusion.  They acknowledge the risk but believe that the benefit outweighs the risk.  My own approach is to give all these facts to women and let them decide.  Most women are smart enough and know their own ability to handle risk well enough to take in these various recommendations and make their own decisions. 

The Insurance Effect

The difficult decision is now with the insurance carriers who must decide whether to set their benefits to encourage a yearly mammography for women over 40 or an every other year mammography for women over 50.  Most companies follow the recommendations of both the American Cancer Society and the USPSTF.  They rarely disagree and when they do, there is a definite dilemma.  My own recommendation is to pay for the test based on the ACS but only to encourage it in materials and mailings based on the USPSTF.  I believe the studies done that are cited in the new recommendations are strong and sound but I also believe that breast cancer is a disease that causes fear in families and that fear is very real.  Many women may want the reassurance of earlier and more frequent mammograms even if that means they will be increasing their risk from unnecessary tests and even potential unnecessary surgeries.  I would not make it more difficult to have those tests by creating new financial obstacles.

Costs of Coverage: Facts and Figures

As I spent some quality time reading the Affordable Health Care for America Act which just passed the House of Representative, I realized that at least some of the people who read this blog do not really know what the costs are for health insurance and how this bill may affect those costs.  This posting is therefore designed to give you, by reviewing a couple of recent studies, some real numbers so that costs can be better understood.  Unfortunately, when we debate whether to spend one trillion dollars or eight hundred billion dollars, the real numbers sometimes get lost.  Lee Trevino, one of the great golfers of our time, once, when asked about the stress of making a putt for first or second place in a tournament worth tens of thousands of dollars said, “Real pressure in golf is playing for ten dollars when you only have five dollars in your pocket”.  By the same token, talking of billions and trillions of dollars if often not as meaningful as talking of the amounts a family has to pay.  So the place to start is asking just how much an employed family now pays for health insurance.

Current Health Insurance Costs

A study published in Health Affairs reported on just that question.  Entitled, “Job-Based Health Insurance: Costs Climb At A Moderate Pace” and based on the Kaiser/HRET Survey of Employer Health Benefits the article says that average annual health premiums in 2009 were $4,824 for single coverage and $13,375 for family coverage.  Most people’s employers pay about 75 - 80% of those costs however labor economists are quick to point out that since employers calculate employee costs on the basis of salary plus all benefits, those dollars that employers pay for health premiums are really taken right out of salary checks.  Those premiums are about 5% higher than they were in 2008.  Premiums reflect the costs of medical care.  While much is made of the high administrative fees, even in the most expensive of plans, administration is still less than 20% of the premium costs (and usually less than 15%).  

Impact on Hospitals

A major part of the 80 – 85% of costs that are directly related to care are paid to hospitals.  While it might sound obvious, the amount of money a hospital will charge for a stress test, delivery of a newborn, treatment in the Emergency Room, or any other service therefore directly impacts your premium and out of pocket costs (after all everyone has that pesky deductable and the 20% or so that the individual is responsible for).  Also in Health Affairs, a study entitled “How A New ‘Public Plan’ Could Affect Hospitals’ Finances And Private Insurance Premiums” specifically assessed how the proposed public option would effect hospital bills for those who are on an employers health plan.  In the article they say “Because it is possible, and perhaps even likely, that this new public payer would pay less than private payers for the same services, such a plan could negatively affect hospital margins. Hospitals may attempt to recoup losses by shifting costs to private payers.”  That would become higher premiums for employers, higher out of pocket costs for employees and less financial room for employers to raise salaries or hire new employees. 

Large Employers Point of View

In a report published today entitled “Health Care Reform:Creating a Sustainable Health Care Marketplace” the Business Roundtable spoke of their belief that if implemented in the best possible manner, parts of the current health legislation may lower the upward trend of costs by 15 or 20%.  They also pointed out that the way the legislation is currently being discussed, the risks to achieving that sort of saving is significant.  They did go one step further and suggested that the best way to save money is to foster “true market reform” which would include individual accountability, full transparency of cost and quality information, a focus on health rather than our current focus on illness and addressing professional service capacity, that is the number of physicians, especially primary care physicians we need.  They gave Lasik surgery as an example of the effect a free market has on health costs.  Lasik is considered cosmetic and is therefore not covered by insurance.  In recent years, cost has come down for the surgery and quality has improved. 

 

As this chart show, as the number of Lasik surgeries has increased, the cost initially sent up, then decreased dramatically as more eye surgeons learned the procedure and became adept at it, and then the price became relatively stable, going up only in line with the cost of living of all items.  While cosmetic surgery is not the same as necessary care, there are ways to encourage market forces in health care.  Current legislation being considered by the House and Senate does not use those free market tools. 

The Bottom Line

Health insurance is expensive and is getting more expensive.  It reflects medical care.  Any effective plan needs to fundamentally change our system of paying doctors and hospitals, change our medical liability laws, and address individual responsibility in order to create real change.  I do not see that in any of the current proposals.

The Personal Side of H1N1

I have not written this blog for a few weeks now as I try to cope with my own bout of H1N1.  While the course is said to be brief, the truth is that it is extremely variable.  If it was always mild and brief, which is true for the majority of cases, we would not see any deaths. Tragically we are seeing deaths.  In my case, and in the case of my fifteen year old son who was generous enough to share it with me after he was infected, it was more severe.  My son’s illness went on for about five weeks and had associated with it a pneumonia on chest x-ray.  I am now at the end of my third week and while my fever and chills only lasted a few days, the cough and muscle pains and weakness that I have are persisting and only now gradually decreasing.  It has obviously impacted all aspects of my life, including the writing of this blog.  It is often easy to forget that all illness has impact beyond the illness itself.  A person who is sick, either with H1N1 or with a serious life threatening illness is a person who is living their life, going to work, taking care of the people they love and all that is impacted by the illness. 

Who Gets H1N1?

Supposedly I am in the age group that is less likely to get the infection.  However I am also a great example of the fact that even if you don’t “fit” the profile you can still get the disease.  By this age graph, since I am in the 50 – 64 age group, I should not be at high risk however it is safe to say that my risk was 100%, since I have it. 

How Do I Feel Once I Get It?

The short answer is not very well.  Fever, cough, shortness of breath and muscle pain are typical of the illness.  On a personal basis, I was lucky enough to have all of those and the cough and muscle pain (from my observation of myself and my son) take the longest to clear up.  This chart shows the common symptoms for those people who have been hospitalized for the illness, according to the CDC. 

Symptom	Number (%)
Fever	249 (93%)
Cough	223 (83%)
Shortness of Breath	145 (54%)
Fatigue/Weakness	108 (40%)
Chills	99 (37%)
Myalgias (Muscle Pains)	96 (36%)
Rhinorrhea (Runny Nose)	96 (36%)
Sore Throat	84 (31%)
Headache	83 (31%)
Vomiting	78 (29%)
Wheezing	64 (24%)
Diarrhea	64 (24%)

Looking at the Data

Every week, the CDC sends out an update on the course of H1N1 from around the country.  The most recent from yesterday, describes a picture of increasing hospitalizations, increasing deaths and widespread activity in 48 states.  However even this may be understated.  An article that was published on the Internet by researchers at the CDC and at Harvard looked at the cases of reported H1N1 and then tried to determine through mathematical models, whether that accurately reflected the number of cases that were being seen.  Their answer was stated in the article:

“Through July 2009, a total of 43,677 laboratory-confirmed cases of influenza A pandemic (H1N1) 2009 were reported in the United States, which is likely a substantial underestimate of the true number. Correcting for under-ascertainment using a multiplier model, we estimate that 1.8 million–5.7 million cases occurred, including 9,000–21,000 hospitalizations.” 

Since then, according to the CDC, the number of cases has actually increased with 17,838 hospitalizations and 672 deaths documented that are related to the H1N1 infection thus far.

What About the Vaccine?

All available data shows it works.  Get it if you can!  The problem for most people is that the vaccine is in short supply and it may also be too late for the bulk of the population.  The illness appears to be peaking now rather than later in the season as is typical for the usual seasonal flu.  Thus far, (as of Nov 5), 26 million doses have been shipped while 36 million doses are needed just for the high risk groups (and I don’t fit into that group).  The government has taken the lead in managing supply of the drug.  They have not done a stellar job however it is hard to criticize as I don’t know that it was possible to do a stellar job under these circumstances. 

Bottom Line

Try not to get sick while understanding that a large part is out of your control, unless you can become a true hermit until the epidemic is over.  If you do get sick, don’t be like me and see your doctor early to potentially take an anti-viral agent, such as Tamiflu early.  I toughed it out and should not have.  I will get back to my usually medical article review and commentary as soon as the coughing stops.