Breaking Down Barriers to Achieve Humanistic Care

I write this while at 30,000 feet flying from the high tech environment of Silicon Valley and the Stanford Medicine X conference to the suburbs of Chicago for the Health Enhancement Research Organization (HERO) meeting. One could not get more contrast going from the beauty of the Stanford campus and their high tech auditoriums and lecture halls to the windowless conference rooms of a suburban hotel.  Yet the two meetings are similar.  Both are indicative of the positive changes occurring in healthcare these days. We are starting to break out of our concrete silos in order to address patient care from the patient's point of view. It seems radical and that alone is indicative of where we have gone wrong up until now.    

At Medicine X, many of the discussions were led by patients or included patients who have found their voices through the blogosphere and through organizations such as Accolade which help people become more empowered patients.  They are partners in their care – patients who spoke of their own struggles to be seen as autonomous individuals and not as diseases. At the session I moderated, Mary Reese, who suffered with chronic pain for 11 years spoke about her frustration of having physicians not believe her pain was real, dismiss her ideas and concerns, and fail to find any solutions. To her credit, she always maintained respect for those physicians and believed that they were acting to the best of their abilities. Not once did she blame anyone for her predicament. Instead she spoke of her struggles to be a good mother despite her difficulty just standing up and walking and the loss of the ability to do all the things she enjoyed doing. She then spoke of the human connection she was able to form with Karen, at Accolade who in turn helped her find her voice and helped her find the right medical resources to finally end the 11 year nightmare.

While the conference stresses technology, this year the technology was presented as a tool to best be kept in the background with patients like Mary in the foreground. The patients are using expert systems and new approaches which are all but invisible to them so that simplicity can reign.  Mary was able to access the skills of Accolade and the expert opinions of Grand Rounds, both of which are made possible by combining technology and humanism in a powerful way. She is now enjoying her life, free of the debilitating pain.  She brought tears to everyone' eyes as she expressed her love for her supportive husband and children who stood by her during that dark decade of pain.

This dichotomy between technology and humanism is being torn down as we appreciate the facilitating potential for technology within the humanistic paradigm.  Touching people as people who have unique needs and wants and not as a set of symptoms or a standardized disease is required to build trust and create effective care. The newer approaches highlighted at Medicine X recognize this need to break the shackles of old paradigms. 

In the same way, at HERO, the emphasis has traditionally been on prevention. Research to determine the best ways to effect improvement in diet, stress management, exercise, smoking cessation, and other lifestyle challenges to prevent disease has been the main focus. That focus has sometimes created suspicion that it could create a tendency to blame the patient for the disease.  I have sat in HERO meetings with groups that advocate for those with diabetes, heart disease, and arthritis during which those activists rightly pointed out the danger of stating that everything is preventable with the proper lifestyle approach.  That “everything is preventable” myth could easily lead to regulations, laws and benefit requirements that impose harsh penalties for being unsuccessful in addressing behavior change as part of treating a disease.

At this meeting however, I will take the podium with Dr Adam Perlman, Executive Director of Duke Integrative Medicine and Associate Vice President for Health and Wellness at Duke University Health System to discuss how prevention techniques can be used effectively within therapeutics for people with illness. We will challenge the model of every illness being preventable and instead offer a model which uses diet, stress reduction, exercise, and mindfulness both in the context of treating disease and for improvement of well-being for those without disease.  Instead of treating the risk factor or the specific illness, new models will emphasize helping the person fulfill their own needs.  We will present a new model in which the biomedical is combined with an integrative model and an assistance model so that the patient point of view, regardless of presence of illness, becomes paramount. The old silos between prevention, wellness, and therapeutics must go.  The concept of disease has to change as we realize that our journey of life is dynamic.  Disease may be too static, too limiting, and may not adequately recognize that the same disease may impact different people in different ways at different times. We need to make these changes using technology but never allow technology to get in the way of the person’s feelings, needs, beliefs and values.

The fact is, unique individuals who get up every day, love and care for their families, enjoy life and  get sick must be helped using every tool in the health, technology, medical and social arsenal. They must maintain their dignity and their autonomy and be partners in all efforts whether those efforts are preventive, therapeutic or supportive. They cannot be forced to find fragmented programs and services through Internet search or desperate attempts at networking.

We have a long way to go in breaking down the silos and reaching the core humanism that must drive healthcare. The road will be difficult as the voices of those who look for science, or prevention or technology to be the only answer may dominate at times. However meetings like Medicine X and HERO make me optimistic that we are moving in the right direction. 

Medicine X and the Hopes and Fears of New Health Technology

This week I am on my way to Stanford Medicine X.  I will be moderating a session at this yearly meeting of futurists in health care.  Medicine X describes itself as a “catalyst for new ideas about the future of medicine and health care.”  As described by the organizers, “The “X” is meant to encourage thinking beyond numbers and trends – it represents the infinite possibilities for current and future information technologies to improve health.”     For this sixty-something year old physician, there is something about the term “X” which suggests some meeting of Gen X, Star Wars and IBM Watson.  I admit it the whole premise scares me as I wonder if the technologies we talk about will improve health or suck the humanity out.  Can an app hold your hand and help you feel less afraid as you face death and disability?  At first glance, the humanistic and perhaps even spiritual approach to medicine that I advocate seems to have little place in a room full of young techies who still feel invincible and believe that nothing will stop the inevitable march to automated utopian health care.  Happily, I do know that assessment of this meeting and the attendees is too simplistic, too glib, and yes maybe too jaded to reflect reality. 

One positive aspect of the health care tech and Internet revolution is that it has the potential to give more voice to patients, the individuals this medicine exercise is all about.  At this meeting, the voice of patients is heard with epatients, people representing patient advocacy groups and others who come from the health blogosphere who are present as full participants.  The session I am moderating will feature two physicians (me as moderator included), a clinical psychologist and most importantly a patient.  This is typical of many of the sessions at this meeting and represents an approach that I welcome – one that brings patients front and center in the discussions of the future of medical care.  It creates an atmosphere in which the patient is not merely the recipient of care but a true partner and ultimately owner of his or her own care.  In other words, this has the potential to democratize medicine.

In Thomas Friedman’s book, The Lexus and the Olive Tree which he wrote in 2000, he describes three democratizations associated with globalization driven mainly by the Internet – democratization of technology, finance and information.  Stanford Medicine X represents a fourth democratization – that of healthcare.  As we move away from the paternalism that marked my generation’s approach to medicine, we struggle to find a new model that gives more authority to patients, while not abandoning them to one-size fits all self-service medicine. 

Technology, thus far has not fulfilled that potential.  Instead we have electronic medical records that are designed to maximize hospitals’ ability to capture data for billing.  We have algorithm driven systems that ignore the context of a person’s life so that the mother who must choose between following a physician’s advice and caring for her child is labeled a non-compliant patient.  We have data analytics systems that are technologically elegant that monitor physicians for how they deviate from the guideline and punish them financially and by reputation even if they deviate by following the patient’s needs – which may not be medical.  The technologies now in use tend to restrict care and discourage the type of flexibility and individual creativity that is so necessary to treat complex human beings with all of their medical, emotional, and life needs. 

Technology can be either restricting or empowering.  “Can I move...I’m better when I move?”  I still love that scene from "Butch Cassidy and the Sundance Kid", the classic Paul Newman, Robert Redford film.  That scene represents the first meeting of Butch and Sundance when Butch is testing Sundance to see if he should be part of his group.  He is asked to hold his gun and shoot at a target.  He tries to move around however the person telling him to shoot insists that he “only shoot.”  He misses.  He then asks the perfect question, “Can I move?”  Butch’s assistant replies, “Move – What the hell do you mean move?”  At which point Sundance shoots while moving and hits the target.  Sundance then adds, “I’m better when I move.”

Some of us are better when we can bring our own voice, our own style and our own approach to problems.  Indeed some physicians, while excellent clinicians, may rail against technology driven systems that contain guidelines and algorithms which allow too little room to move.  The real question in my mind as I head west to Palo Alto for the meeting is whether the next generation of technology can better accommodate the challenges of treating complex individuals while actually improving medical care, emotional support and providing the social help that is so critical to health.   I am more optimistic when patients are involved in the discussions as they are at this conference. 

The meeting this year starts tomorrow which is also the Jewish holiday of Yom Kippur.  The holiday is marked by asking forgiveness not only of God, but more importantly from all those people we live with and work with.  In that spirit, I ask forgiveness from all of you.  Because I see myself as part of the changes that have been occurring in health care for more than a decade, I offer my apologies for harm done and opportunities lost.  I offer apologies for the technologies that have led to more confusion, less care and demoralization of patients and doctors alike.  My hope for the coming year, starting with Medicine X, is that we start to get it right and use technology to facilitate care and foster humanism.  

Quality Control and the Story of the Three Bears

The story of The Three Bears is ingrained in all of us from childhood.  The little girl discovers the house in the forest and finds three chairs, three bowls of porridge and three beds.  One is always too big and one is always too small (or in the case of the porridge too hot or too cold) and one is just right.  It often feels that way in health care as we try to find the right answer.  Health economists and policy people will say the problem is overuse – too much health care.  Patients often feel as though more can be done that is not being done – too little health care.  Finding the health care that is “just right” seems to be an insurmountable task both for populations and for individuals. 

Two recent articles, one in a medical journal and one in the popular press, both in narrative form, show us the challenge of defining quality – the just right of health care – and ensuring it occurs.   In JAMA Internal Medicine, Dr. Jennifer DeVoe writes about the care her father was receiving when at age 77 his emphysema took a dramatic turn for the worse.  He was admitted to the hospital where the doctors, following the correct evidence based protocols gave him oxygen, intravenous steroids and antibiotics They were about to perform a bronchoscopy in the Operating Room which was the correct procedure to diagnose the cause of this exacerbation although one carrying significant risk as he would need to be on a ventilator and getting him off the ventilator may prove to be impossible.  She asked her father how he felt about the bronchoscopy considering the risk as well as the likelihood that he would not survive without it.  When his daughter told him that he had a choice and did not have to have the procedure, he said, “Let’s go home.  What d’ya say?”  They were about to do too much even though the correct protocol said it was the right thing to do. 

They then transferred him to the in-hospital hospice program as he was too unstable to go home.  Again, his daughter who is a physician managed to help him navigate the shoals of a hospice team that wanted to stop his intravenous fluids as that is the correct protocol to follow when someone is on hospice care.  That was too little for this man who still had some goals to achieve.  To get it just right, his daughter had to help him so the intravenous fluids would give him enough energy to send birthday cards to his brothers and call friends and family to say goodbye.  By the end of the week he had died on his terms with his daughter’s help.  He did not have too much care or too little care and he died receiving care that was just right. 

The article from the New York Times, entitled, “A Doctor at His Daughter’s Hospital Bed,” recounts the story of a father, an experienced transplant surgeon, whose daughter is in the hospital critically ill.  (Thank you to David Florman for sending this article to me.) He sees that her pulse is elevated and her blood oxygen level is decreased.  The values had not yet reached thresholds which called for immediate treatment of shock although his experience told him that she was moving rapidly to a point at which therapy might not even help.   This experienced surgeon and father knew that if he took no action he might lose his 17 year old daughter.   Every protocol known to medicine holds that the treating doctor, not a family member who is there, should be making decisions such as whether or not to give fluids.  However this father takes bags of fluids off an emergency cart circumventing the normal processes and probably saves his daughter’s life.  He does all this with the nurse calling her supervisor to complain about this irrational family member acting against every hospital protocol.  But his daughter was receiving care that was too little and he stepped in to make it just right. 

I must admit, that as a father I have sometimes found myself in just that position of ensuring quality of care for a family member, often in ways that do not easily fit the protocols and the standards.  I have been accused by hospital staff of not following protocol and have never been sorry about the actions I have taken for my sons when I found it necessary.  (I have written about these situations in my blogs previously May 2013 and November 2014)  I identified strongly with Dr. Bud Shaw as he protected his daughter from the norms of the medical system.  Those norms can often be uncompromising and even uncaring when flexibility and care should be paramount. 

Both of these stories reflect the difficulty of ensuring that every person receives care that is just right for them.  It sometimes takes an understanding that protocols and guidelines are designed to be flexible and must be used in a customized way for each patient.  In order to do that, the health care professional must be constantly thinking about how the protocols may and may not apply. 

The unifying aspect of these stories is a commitment to the patient that is more than only a professional responsibility.  The stories reflect a customization of care that requires knowing more about a patient, as Jennifer DeVoe puts it, and also caring more about the patient as a person and not only as a disease.  They reflect a need for a family-like commitment to the patient.  While I do not expect, nor advocate that a family member be the patient’s physician, I do advocate following the old medical saying that every patient should be treated as though they are a loved family member.  Medicine of the highest quality must be a calling, not only a craft or a profession.  We must find ways to measure and ensure that element of customized care and not depend on adherence to specific protocols as the arbiter of quality so that the care rendered is always “just right” for that unique individual in need.