Healthcare, Humanism and the Humanities

I am returning from a prolonged trip in France visiting my son, daughter-in-law and nine month old granddaughter followed by a few days in Amsterdam. In many ways, the trip has been an emotional journey more than anything else as my wife and I were able to hug, and play with Hannah, our French-American grandchild.  

That trip was all about emotions, history, art, and family.  It was about different cultures and traversing lands with different languages.  In the glow of that trip, I can't help making some observations on health care.  I ask myself whether, in a humanistic endeavor such as health care, do we leave out, or under emphasize those aspects of life I focused on during my trip.   

In France, I lived with my son and found myself in the rhythm of French life. It is a life that reflects French culture and values which appears at first glance to be focused more on the everyday than the goal oriented life that I see in the United States.  There is a saying that people in the US live to work and people in Europe work to live and I wonder if there is a kernel of truth to that. Just to clarify, I am speaking of small town France and not the frenzied Paris life that is similar in major cities worldwide. One can find a closer parallel in small town America than one can probably find in Paris to my French trip.  There appears to be, in the tradition of Rousseau, great value given to the logic of a balanced life. As Rousseau said, "Happiness: a good bank account, a good cook and a good digestion."

Our life there took on a certain rhythm that did revolve around our meals.  This is especially meaningful to me as a gastroenterologist and expert in nutrition. Meals were savored over time with real focus on the food; stores closed midday so storekeepers could enjoy their own long lunches; walks were taken slowly after lunch. It took a while for me and my wife to get comfortable walking slowly.  In many ways, what we now call mindfulness seemed to be part of my son’s family, and my daughter-in-law’s extended French family daily living. Of course people work and are productive and have all the worries that people all over the world have.  The attitudes towards those needs appear to be different.  We would stop in the afternoon at a cafe to give our granddaughter a snack as we sipped wine and watched nature, people and the world around us. History was all around us as these buildings we sat in could have been built in the 1600s.or 1700s.  I returned feeling like I had done nothing but eat and found that I had lost weight.  (I discussed this after a previous trip to France in a blog entitled “How I Spent My Summer Vacation and the French Paradox”). 

On our stop in Amsterdam on our way back home, we went to the Van Gogh museum and I was struck by all the medical aspects of his work and his history.  The painting “Two Hands” that show working hands that are thick from manual labor but also seem to have some contractures that may be indicative of arthritis show the intermingling of life and work.  His “Head of a Skeleton with a Burning Cigarette” should be used in programs to stop smoking. 

What I am describing, in an academic sense may be seen to be part of cultural anthropology, art history, sociology, philosophy, and history. Throw in a dose of academic French, enology for all the wine we had and a bit of high level culinary art and it became apparent that our experience in France and Amsterdam can be intellectually understood from study of the humanities rather than just, for example, from geography. Just as one cannot interpret a trip such as ours as being only about geography, one cannot interpret a trip to the doctor to be only about biology. 

Life is all about balance and good medical care is all about life.  It is not only science.  Our health professionals should be well versed in disciplines that help them understand that balance.  That may mean more use of literature and more instruction in psychology, sociology and anthropology.  I don’t have an answer of a specific curriculum to recommend.  I only know that we must do all that we can to prevent our medical and nursing education from driving the humanity out of the talented people who choose those paths.

There is a concept that is reflected in a number of sources, most notably the Zohar, the Jewish book of mysticism, which states that evil occurs when there is an imbalance between love, wisdom, justice and glory.   In some ways, the science of medicine often reflects the justice and the glory.  The evidence based algorithms and those in medicine who believe that they have all the answers to the dilemmas of health care produce a certain regimentation which creates a framework for justice and the entrepreneurial and the academic aspects of health are often driven by those in search of the glory.  While individuals have tremendous love and wisdom, it may not be built into the system to the degree needed to prevent a system designed for good from having evil elements.  I remain optimistic that movements such as the Narrative in Medicine movement which stresses the importance of storytelling as part of medicine will take hold and be important in the education of health professionals.  In order to have that happen, we need to bring more humanities into the teaching of medicine and nursing.  After all, we want the health professionals who will be at one point or another caring for all of us to be holistic caring people who understand the impact the illness has on our life as well as an understanding of the illness itself.  

The Balancing Act of Health Care

Closing one chapter and opening another is an opportunity for reflection.  I have used the two months since I last wrote a post to determine how I can continue to have an impact on health care, while having the most fun as my work and life journey continues.  That has created more questions than answers and more shades of grey rather than sharp lines of clarity.  However that is good.  I have always believed that questions are more important than answers and that those with perfect clarity about a situation just do not understand the situation well enough. 

So it is with health care.  Health care is filled with questions, with difficult choices and with confusion for patients, for health professionals and for health policy experts who want a neat and clean answer to our system challenges.  In other words, health care is a terrific reflection of the human condition and must be seen as a part of the complexity of life.  While the understanding of human physiology and pathology may one day be totally answered by science and amenable to computer generated algorithms (although I doubt even that), health care has always been about more than biology.  Emotions, social interactions, finance, culture, communication, spirituality all are part of health care and they don’t all follow simple biological rules.  Even the biological sciences obey the old saw that the greater the knowledge of a topic the more unknowns that surface.  Good scientific answers tend to elicit new and more questions rather than simply settle old questions.  An economics joke is told by doctoral students (mentioned in a Bloomberg Business Week article) that the questions on the doctoral exams haven’t changed in 50 years but the answers have.  The same can be said of medicine.  In health policy debates we often hear the term “scientific fact” however the true scientist, including the true medical scientist, knows that “facts” are never written in stone and that the teachings of today tend to be proven false tomorrow. 

Since health policy is involved with politics, and politics thrives on simple answers and sound bites, it is no surprise that in health care policy, there are always those who claim to have the magic bullet – the answer – usually based on scientific fact.  That solution is often manifested as new laws and rules to address high costs, inequalities, lack of access to care, and potentially poor quality care.  However they may not address the constant trade offs we must make as we deal with the need for access to good care for all and the need for individual autonomy, individual respect, and customized solutions based on the person and their unique situation.  As Isaiah Berlin has said, “Liberty for wolves is death to lambs.”  We may produce liberty and equity and not pay attention to the lambs that are being eaten by the system.  New regulations and laws may also have the effect of pushing professionals to focus more on proving one is following the rules than encouraging those professionals to actually care for those who are in need. 

In this spirit, I have my own “top ten list” of unanswerable questions related to my life’s work of improving access to quality care.  They include:

1. How do we fit the black and white of contracts, legislation and regulations into the shades of gray that good medical care requires?
2. How do we balance the needs of a population and a community with the needs of unique individuals within that community?  As an example, how do we make the choice between the cost of care for a healthy 95 year old that may benefit from complex surgery and the thousands of children who could be immunized using those funds? (I believe we can and must support both). 
3. How do we address the fact that human physiology is the same around the world however the non-biological factors that make medical care more than biology vary immensely from country to country, state to state, community to community and even person to person? 
4. How do we create efficient systems and smart systems that can assist health professionals while encouraging them to keep their focus on the individual patient and not the computer screen?
5. When we speak of outcomes and quality, from whose point of view are we looking?  Is it the patient, the family, the doctor, the system or the population?  Often outcomes and quality are in the eye of the beholder. 
6. How do we monitor care to ensure it is high quality while also allowing for the modifications of care depending on the life context and the unique situations of the person in need? 
7. How do we build systems that allow for innovation, even with individual patients, but still protect patients from being subject to experimentation and poor care?
8. How do we encourage good health habits while not creating a system that punishes those who do not follow those habits? 
9. How do we prevent care equity becoming poor quality, least common denominator care for all?
10. How do we acknowledge health care as a spiritual and social need and not only a biological one?  

These questions and others like them offer opportunities to continuously fine tune and change our approach to the problems based on the specific community, the specific patient, the specifics of the health care resources that are available, and the times we live in.  We must have systems and laws however our systems must be flexible enough and smart enough, supported by smart caring professionals, to address all of these dilemmas.  We are in a constant balancing act trying to make hard choices and doomed to never reach perfection.  However our attempts to try to be perfect will lead to better care for all.  We must recognize that arrogance is the enemy, humility is needed and questions may not have a “right” answer.

The processes we build and the regulations we put in place impact populations and individuals who may not be in the center of the bell curve but off to one side.  All systems and rules produce unintended and potentially negative consequences for those people who do not fit neatly into the norm and the processes must allow for a mass customization to address those atypical people, who may in aggregate be the majority of patients.  In dealing with life and death health care decisions, care and sensitivity to the patients, their families, and the health professionals manning the front lines of health care must be emphasized and our systems must not only allow for that care and sensitivity but encourage it.  I, for one, am excited to be on this journey even as I know that my solution today may need to be changed tomorrow.  Such is the nature of health care and of life.