The Bystander Effect Revisited

My son’s experience with his recent illness (and he is improving) made me go back to read a perspective article in the New England Journal published in January.  Entitled, “The Bystander Effect in Medical Care” the article retold the story of Kitty Genovese who, in 1964, was brutally murdered while 38 witnesses either saw the attack or heard the victim’s screams.  Following this tragedy, much research went into studying the “bystander effect” which was described as the human tendency to be less likely to help when other people are present.  Those studies found that the diffusion of responsibility is a major element of the effect.  If a large group of people are involved in a process, any one person will assume that the responsibility belongs to someone else or they will assume that action has already been taken.  If you think about this in less urgent matters, you can see this effect when a power outage affects a neighborhood.  Who calls the power company and who assumes that since the entire neighborhood is affected, someone else will call?  That is a common example of the “bystander effect” at work. 

The authors of this article related this effect to limits on resident work hours, the increase in subspecialty care, and the large number of health professionals involved in a patient’s care when they are hospitalized leading to a lack of coordination of care and lack of ownership any one doctor feels for a patient.  I would add in the role of the hospitalist which while potentially improving the quality of hospital care removes the primary care physician from the team.  It is the primary physician who will need to help the person through the transitions from the hospital and back to full health.  They point out the important question that is often not answered, and was not answered in my son’s hospitalization, “Who is my doctor?”  I have to add a question, that being “Who is my patient?”  All too often a contributing factor to the bystander effect is that many doctors see each patient as a disease or the “person in room 225”.    The authors of the article noted that “research also suggest that bystanders are far more likely to intervene when they are friends with one another” and then make the argument that the health professionals have to talk more and integrate more to empower more decision-making.  In other words they need to be friends with each other.  They leave out the crucial aspect of seeing the patient as your friend: seeing the patient as a person in need rather than a grouping of symptoms or a diagnostic dilemma.  Teamwork is great but knowing that Mrs. Smith who is now in the bed in front of you, spent twenty years teaching and had three children and five grandchildren and was seen as a rock to all those who knew her may be much more important.  I suspect that if any of those 38 people who heard the screams of Kitty Genovese knew her personally, they would have been much more likely to act in her defense. 

Dr. Kent Bream in a letter to the editor published in April reacting to the January article wrote that the standards and rules that we now pay strict attention to, while certainly improving care in  many ways, also “ensure a polite, rote production of services” and that “our profession should lead us to favor patients over production”. 

In medicine we are often in the business of finding and treating the uncommon event that can be catastrophic.  That can lead to inefficient production of services.  Health care is only effective (even if potentially less efficient) when we take ownership of the person who sits before us in need.  It is always about the person and not only the pathology.  Understanding the unique needs of the individual and addressing those needs as we would for a friend is a key to proper care.  That prevents the bystander effect. 

I learned that lesson many years ago.  As an intern in Chicago, I was in the Cardiac Care Unit and a writer from Chicago Magazine was there and wrote a piece about the work of that unit.  When it came out, a boxed story told of my caring for a 90 year old man in the unit who was unconscious.  I was quoted as telling the writer that the history was that this man had been sharp and active until the day before this event and was active in his community and with his family.  Therefore the idea of doing less for him than for a younger person was just not right.  I am proud as I look back on that that I knew the person and not just the situation of a 90 year old unconscious man in a cardiac unit and that I, even though I was just an intern, took ownership for the care of that person. 

So this is my call to arms.  Medical professionals and all health care professionals cannot be cogs in a machine.  We cannot be bystanders.  We must be the “friends” to our patients and take action when action is needed rather than assume someone else will do it.  

Lessons Learned at an Academic Medical Center

This past week my child got sick.  It does not matter that he is an adult, on his own, and very capable of caring for himself, he is still my child.  On a Saturday night, he called me and my wife to ask our advice.  He was having vomiting and severe abdominal pain and my old clinical roots in gastroenterology came to the forefront.  “Is the pain radiating? Are you having diarrhea or constipation? What does the vomitus look like?”  After a relatively short time it was clear that this needed hands on evaluation quickly as I suspected that he may need urgent intervention.  I suggested he go to the emergency room.  He lives near an academic medical center and he went there.  In the ER, the triage nurse saw him and determined that he needed to be seen quickly and she sent him back into a room to be seen.  There he sat for more than an hour, writhing in pain with an occasional visit by a nurse to “check on him”.  He and I were communicating via text and by phone and I was trying to stay calm. 

I finally called the ER and asked to speak to the charge nurse.  I asked her why he had not been seen and she proceeded to tell me about all the other, more important issues they were dealing with.  I replied that I understood however with a possible acute abdomen, the protocols are pretty clear: an exam of the abdomen, a CBC to check the white count, an abdominal film and upright to look for free air.  Surely a doctor could examine his abdomen and those immediate tests could be done?  She replied that the tests could only be ordered after he was seen by a doctor and the doctors were too busy. My next call was to the nursing supervisor on call for the hospital.  I explained that I did not understand how someone sick enough to be triaged into a room immediately was not sick enough to have an evaluation begun.  She said she would call me back.  In half an hour she did telling me that the tests I asked about had been ordered along with a CT of the abdomen with contrast.  I spoke to my son who said a doctor had come in to say hello but no one had yet laid a hand on his abdomen, perhaps the most important diagnostic test of all.  

    

After 7 hours in the ER, he was admitted without a diagnosis but with pain severe enough to warrant intravenous morphine.  The ER doctor called and spoke to me at about 3 AM and told me that the   gastroenterology fellow had been notified and would see my son in the morning. 

The next day, my son was no better.  It was about 11 AM and he still had not been seen by the gastroenterologist so I called and paged the GI fellow.  I did get to speak to him and he told me that the floor staff had told him that the admission had been inappropriate and my son did not need to be in the hospital and that he was not planning to see my son.  I asked him why my son was on morphine for pain if he did not need to be in the hospital.  Those two facts were inconsistent. He went to see my son.  I went to get a flight to be at my son’s side.  It was clear at that point that he needed a bodyguard, an advocate, at his bedside. 

    

That evening, when I arrived, my son was in excruciating pain, only relieved by the morphine he was receiving.  I immediately sent an email to the Dean of the Medical School, who is an acknowledged expert on quality of care, to question the quality of care that my son was receiving.  The house staff had decided that he was an "inappropriate admission", either lying, drug seeking, or just someone who was, in the great tradition of medical house staff everywhere, a “crock”.    An hour later the chief of medicine was seeing my son.  His history and physical, consistent with a senior physician overseeing residents and interns, was more thorough than any my son had received since admission.  Usually it is the other way around.   The interns and the residents spend the most time with the patient.  Meanwhile I was trying to figure out who the doctor responsible for my son was.  Between weekend shifts, night floats and hospitalists there appeared to be no one truly taking responsibility for my son’s care.  I learned that the "attending" was a hospitalist who had not examined my son at all.  Nurses stopped in occasionally but were mainly present at their monitors at the nursing stations and as disembodied voices when you pressed a button.  Suddenly, my son developed massive hives all over his body leading to his eyes being swollen shut.  I took pictures with my phone and the night float doctor finally arrived, looking a bit frightened at seeing my son evolve so quickly.  He treated him appropriately and the rest of the night was calm. 

 

The next morning I waited for the rounds.  I thought I would see real deep discussion and thought about my son’s troubling acute illness.  Usually rounds are first thing in the morning and involve a senior doctor, the attending teaching the residents, interns and students all about the diagnosis and treatment of patients.  It traditionally is done first thing in the morning so the plans for the day can proceed seamlessly.  I waited and waited and, while a nice young resident came in and introduced herself about 10 AM, she did not examine my son.  I asked her about the episode the previous evening and she minimized it, until I showed her the pictures which seemed to surprise and perhaps even shock her.  She said that his liver function tests had been elevating and that he was going to have an endoscopy that morning.  My son’s pain had decreased a bit and had localized to over his liver  but his nausea, profound weakness and his joint pain were still troubling.  He no longer required the morphine but was still in a great deal of pain.  I walked out to the nursing station and discovered where rounds were really taking place.  Doctors of all stripes were standing around the computer terminals.   Apparently the computer was the important patient being treated here, not the patient!  The laying of hands on the patient, the communication art of medicine, was just not deemed important.  It hearkened back to an old joke when I was a fellow in the Harvard teaching system that our goal was not cure, but dying a Harvard Death – a death with perfect lab values.    Now it seemed that the new goal was not just perfect lab values but a perfect Electronic Medical Record. 

By now it was noon, the morning endoscopy had not yet happened, my son was being kept NPO (nothing by mouth) and he had not been seen by the attending physician in gastroenterology or the attending physician who was responsible for his care.  I asked again if the nurse could please call down to the endoscopy unit and ask how many cases were ahead of my son.  The nurse called and was told that they were on their way to pick him up.  One hour later they had not yet arrived and I asked again.  They told me that patient transport had to prioritize and my son was not a priority.

They finally took him to endoscopy and the staff prepared him. Another hour passed sitting in the endoscopy unit, not yet in the exam room.  Again I asked about the delay and they said that he was next.  He still had not seen the gastroenterologist.  They eventually took him back to the endoscopy room.   I went with him.  The nurse politely asked me to leave and I politely said that I would not leave.  She brought in the head nurse of the unit who told me that I had to leave.  I explained that I was a gastroenterologist and that my son had not even seen the attending who would be doing the procedure so I would not leave.  She told me that that was against policy.  I asked her to show me the policy in writing and explain the reasoning behind it.  She left.  Shortly thereafter, the chief of medicine, a nice man and obviously a caring physician who was obviously charged with “handling” me came running in (he was already late for something he had to attend) and told me that he had prevented the hospital lawyer from coming in and that he would need to cancel the procedure and that I had caused havoc in the entire medical center.  I calmly said that I was aware that I had asked uncomfortable questions however from a quality of care point of view, I had concerns and also did not know if the endoscopy was indicated or not since he had not been seen by the gastroenterologist.  I told him that I believed the failure to evaluate my son before the procedure to be a breach of quality of care.  He told me to wait a minute and then came running back in with the gastroenterology attending who apologized for not seeing my son and explained that my son’s liver tests had been going up steadily and that it looked most consistent with an acute hepatitis of some sort but that an endoscopy should be done to rule out an ulcer as a cause.   After a brief discussion and my satisfaction that he would not harm my son during the procedure, I left.   

After the endoscopy, which did not find any pathology to explain the pain, the gastroenterologist came out and said that he thought that this was an acute Hepatitis A probably from infected shellfish.   He said that he would discharge my son from the hospital and see him in two days to draw more bloods and to go over the results of the blood tests drawn in the hospital.  That was at 3 PM.  After another long wait for transport, he went back to the room.  By 4 PM, he still had his IV in and had not yet received discharge instructions, the appointment for two days later and his prescriptions. The attending doctor of record, who was a hospitalist, came in to tell my son about the discharge.  She had never examined him during his hospital stay but was the doctor of record “caring” for him.  She left and after another fifteen minutes, I went out to see the nurse, sitting at the computer terminal, who told me that he was working on the discharge.  By 5, I left to catch my plane, after helping my son get dressed with the IV still in.   Shortly after I left, he finally was discharged.  He went to his home, still feeling quite sick, but no longer having the severe pain that had led him to the hospital.  

Two days later, he went back to see the gastroenterologist, who is also a liver specialist, and was told that all his tests had been negative including the test for Hepatitis A but his liver was still showing signs of inflammation with the liver tests being even more elevated.  That, of course, was after waiting an hour past the appointment time to be seen.  The doctor told my son to come back in a couple of weeks for more blood tests and to see him in a month and that he may need a liver biopsy. 

My son still has persistent pain and nausea and it is hard to predict his course without a diagnosis for the injury to his liver.   At the appointment with the gastroenterologist, my son asked for copies of his records so he could discuss, at length, the test results with me and my wife.  The office staff said that they were too busy to make copies. 

That afternoon, I was left to again email the chief of medicine to ask him to put me in touch with the gastroenterologist to obtain the lab tests.  He said that he would forward my email and that the doctor would get back in touch with me quickly.  It has been two days, and it is now the weekend and I have yet to hear from that doctor or see a single lab test result. 

So now my son is faced with inflammation to his liver of unknown cause and of unknown future course.  At the same time, he also processes the lessons he has learned from his interface with the best minds at this academic medical center.   What are those lessons?

• His pain is unimportant.  His pain was discounted again and again by the doctors and nurses
• His time is unimportant.  He was made to wait over and over again, even when he went back as an outpatient, because he was never the high priority and the doctors’ time was deemed more important than his.
• He is assumed to be lying if the “tests” don’t show something definitive.  Until his liver tests went up and the massive hives broke out, he was assumed to be lying, faking, drug seeking or just plain malingering.
• Talking to him, examining him, understanding him as a person and understanding his knowledge and his values is just not important.  Looking at the lab values and reports in the computer and filling in the boxes on the computer screen are important. 
• Feeding him is not important but feeding the computer is crucial.
• His medical records are not his own.  Giving him his records may be a legal requirement but they don’t have to make it easy or quick.  

Are these the lessons we want patients to learn?  Is this what we are teaching our young physicians?

Healer or Master Mechanic: The Future of the Servant Leader Physician

I will be giving Grand Rounds on health reform to an academic department of Obstetrics and Gynecology at a major teaching hospital next week.  The audience will include young physicians in training, eager to learn their new craft and excited about the skills they are developing.  I prepare my slides on the new laws and the forces that now face every practicing doctor and have to wonder whether those young physicians will be trained to be master mechanics of the human body, or holistic physicians treating all aspects of a person.  Will they be leaders of medicine or technical experts of pathophysiology?  For people in the field of Obstetrics, will they see helping a woman bring a new life into this world as a lofty endeavor that is a privilege, or just see the technical difficulties of the high risk pregnancy and the challenging delivery?  Will they be artists, scientists or the traditional combination of both that makes medicine a calling as well as a career. 

In health policy articles, doctors are often described more as expensive resources that must be carefully managed so that they stay focused on diagnosing and treating patients while maintaining productivity than as holistic healers.  Systems to prevent them from straying too far from normative algorithms rather than staying true to the science of evidence based guidelines are described as critical to good care. In that framework, the best physician is one who follows the scientific guidelines most carefully and accurately.   But evidence based guidelines alone do not reflect the context of a patient who may have family problems, financial difficulties and emotional issues that impact the diagnosis and treatment that is the core of the art of medical practice.  Will the guidelines and productivity measures allow young doctors coming up through the system to take the time to get to know their patients in such a way so they understand that context and that person who has the disease (or the pregnancy in the case of Obstetrics)? Will the new career of medicine allow the artistry of medicine to flourish while still maintaining the strong foundation in science? 

The current model for health care is also a team model.  That change from the solitary general practitioner is a strong positive however the risk of a team is that sometimes no one professional takes ownership of the entire patient and the entire situation.  There is no leader.  When we deal in a world of doctors as purely diagnostic and therapeutic specialists we risk the physician focusing on the pathophysiology of the disease and forgetting the entire person in which it resides.  The traditional doctor’s role as the leader of a team falls to the wayside.  The diffusion of the ownership of a relationship can leave a patient feeling abandoned by a complex system that only seems to acknowledge the “science” while letting the whole person fend for his or herself.  The art of getting to know a patient and their family so that the therapy can become a true partnership and a true healing is at risk of being lost. 

There is also an emphasis on a patient’s participation in their own care.  This is also a strong positive as good care should be a partnership.  However much of the writing on patient participation is focused on the patient’s access to Internet based tools and apps and is more about “self-service” medicine than it is about partnership with their health professionals. 

What will I tell these young physicians who are starting their careers and their lives as physicians?  I have to tell them of the challenges ahead.  The challenge of taking time to get to know your patients when you are an expensive resource and you will be judged on your productivity.  The challenge of honing the skills you will need in order to interact with patients as people and not only collections of symptoms.  Those are skills to be learned and practiced over years.  That is why medical training is a hands-on mentoring model that gradually allows the resident in training to take on responsibility in small pieces as they develop those skills.  The skills are not only intellectual but interactive.  Just how do you tell a new mother that the child she has just delivered, following the totally normal pregnancy, has a genetic illness that will eliminate the possibility of watching that child grow to independence?  How does a resident learn to diagnose and treat and also learn how to stay with a person as they are leaving this life with a terminal illness?  On a more mundane level, how does that doctor, or nurse practitioner, help the person with a “minor” self-limited illness who is frightened and struggling to get through the day, convinced that the illness is more significant and more life threatening than the science reveals it to be?  How do we, as a nation, encourage this art through our health policies and teach this art to young physicians and other young health professionals?  How do we teach them the privilege that we have in helping people on a daily basis, using the communication, empathy, and caring arts that we have learned from those who taught us as well as the science that we now focus on in our education?

Traditionally, doctors and other health professionals were trained to be “servant-leaders” and the history of medicine began with a religious framework.  In my religion, Judaism, Maimonides, one of the greatest Jewish thinkers, was a physician and a healer and his code of medical ethics, written in the 12^th century is still used today.  One line of the oath says, "May I never see in the patient anything but a fellow creature in pain."  In Christianity Jesus is traditionally seen as a healer. In Islam, Ishāq ibn ʻAlī al-Ruhāwī wrote in the 9^th century, that physicians must be "guardians of souls and bodies".

The concept of the servant healer which was described in our current era by Robert Greenleaf in 1970 in his landmark essay “The Servant as Leader” is based on religious and philosophical thought.  That concept has been embraced and developed even more by Christian writers who have described Jesus as the model for servant leadership. 

Greenleaf wrote,

"The servant-leader is servant first... Becoming a servant-leader begins with the natural feeling that one wants to serve, to serve first. Then conscious choice brings one to aspire to lead. That person is sharply different from one who is leader first... The difference manifests itself in the care taken by the servant first to make sure that other people's highest priority needs are being served. The best test, and the most difficult to administer, is this: Do those served grow as persons? Do they, while being served, become healthier, wiser, freer, more autonomous, more likely themselves to become servants?"

 Medical training used to stress living with patients, and learning their lives and their experiences in order to better understand what they are going through so as to be a better servant.  Go into any old, established medical center that was founded in the early 1900s and you will see lists of names of doctors and nurses who died from infectious diseases as they fearlessly took care of their patients while living with them in the hospital.  Those people were trained to be servants, artists, and yes even spiritual guides through an illness.  They were taught to be leaders in the best tradition of servant leaders.  Has the arrogance of science removed some of the caring and serving that characterized medicine in the past? 

In the Talmud, in Judaism, there is a passage that says, “The best of the doctors are bound for gehinom (hell)”.   This is baffling however Dr. Daniel Eisenberg of Thomas Jefferson University School of Medicine gives two interpretations.  One explanation is that the physician is always at risk to make a preventable error that would result in death or injury giving them criminal responsibility.  The second explanation is that the physician must be humble and the doctor who sees himself or herself as the “best” may not recognize the need to see himself as an intermediary and a partner in healing rather than the source of healing.  This too, will lead to “gehonim”.

At these Grand Rounds, I need to communicate the choices they will have.  Will they be healers or master mechanics?  Will they take time with patients or be “productive” in diagnosing and treating?  Will they be teammates focusing on their narrow area or servant leaders?  I pose these questions and hope to challenge them to be the servant-leaders, the healers, to continue in the ancient tradition of our craft. How they answer those questions will be up to them.

The Person, Not the Patient

"Who the person is with the illness is usually more important than what illness the person has." Sir William Osler.


A recent article entitled "Patient -Centered Decision Making and Health Care Outcomes, An Observational Study" in the Annals of Internal Medicine by Saul Weiner and his associates at the University of Illinois shows, to quote the article, "Attention to patient needs and circumstances when planning care is associated with improved health care outcomes". Not only does it lead to improved health outcomes but also to lower costs according to another recent article by that same group published in British Medical Journal Quality and Safety. While in Weiner's work there are many implications related to our health care challenges of high costs, difficult access, and variable quality, I also found within the findings of the research a return to the wisdom of William Osler quoted above.

Osler also said, "The good physician treats the disease; the great physician treats the patient who has the disease". Weiner , in his work, has found a way to measure the great physician. He has developed a research tool to determine if the physician (or nurse or other health professional) is trying to find out "who the person is with the illness" rather than only "what illness the person has" in the words of Osler.

Before describing that research tool an old joke bears repeating. A man is walking down the street late at night and sees another man on his hands and knees under a street light. The first man asks the man on his knees, "Are you looking for something?". The man on his knees replies, "I lost my keys" to which the man walking along responds, "Lucky you lost them near this light". The man on his knees says, "I didn't. I lost them about half a block from here". The upright man then asks, "Why are you looking over here?" The man on the ground answers, "Because this is where the light is".

Weiner and his group are not just looking where the light is, which is what many do when they limit research to claims databases and even medical records. Weiner audio records visits between doctors and patients to discover the true interaction and to discover how often the doctor is investigating the context of the person's medical problem. In his research, Weiner has defined ten elements of context and he and his staff listen to these office visits to determine if the doctor has asked about the person's life and values and whether the doctor has tried to find ways to remove the barriers to good care that the life context may have created. The ten elements, or domaines of a patient's context are access to care, social support, competing responsibilities, relationship with health care providers, skills and abilities, emotional state, financial situation, cultural beliefs, spiritual beliefs, and attitude towards illness. The researchers then use a standardized survey instrument, with multiple listeners independently rating the visits, to detemine the number of errors made in eliciting the "context" from a patient and in addressing that life context. Using this technique and survey tool they have shown that understanding the person who has the disease leads to good, and efficient care while just paying attention to the disease itself is hazardous to the patient's health.

One of the more recent studies, published in 2010 found that if a patient had no significant contextual issues, doctors provided appropriate care 73% of the time. If there were contextual issues that were missed then appropriate care was given only 22% of the time. The costs were significant as well, as described in the BMJ Quality and Safety journal article. They found that these contextual errors on average increased the cost per visit by $234. Medical errors in comparison increased the cost an average of $164 per visit. In total, the visits they recorded and assessed for errors by audio recording wasted $174,000 due to the errors while the errors found by chart review alone accounted for $8,700 in waste. Yet the bulk of the work in health policy and in managed care is related to the medical and not the contextual and is based almost entirely on claims review and chart review rather than actual recording of visits.

This leads to another quote by Osler: "Variability is the law of life, and as no two faces are the same, no two bodies are alike, and no two individuals react alike and behave alike under the abnormal condition, which we know as disease." Yet we keep believing that standard medically focused algorithms that hold doctors accountable to do the same thing with each patient are the answer to our health care dilemma of high costs and inconsistent quality. Don't misunderstand. The algorithms and the technology greatly improve the science and are welcome and necessary. However they may have an unintended consequence of worsening the art of treating the individual by focusing too strongly on steps in medical therapy even when the context makes those steps difficult or impossible. Both knoweldge of standard algorithms and of a person's life context are critical to good patient care. Osler understood this and now Weiner has demonstrated Osler's wisdom using experimental methods and scientific techniques.

As Osler also said, "Medicine is a science of uncertainty and an art of probability". Weiner has shown that the individual's values, family, finances, faith, emotions and everything else that makes that person a complex being must enter into both the science and the art for good, efficient care to take place. I doubt that can be accomplished by technology and evidence based algorithms alone. It also requires caring professionals helping people in need. We must either give our doctors and nurses the time, training and tools to "diagnose and treat" the context or develop new professionals, as we at Accolade are doing, to address these individual and population based clinical, financial and human needs.

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Constraints and Healing: The "Triple Aim" Meets the Reality of Illness

The “triple aim” of health care has been present for a long time but that particular term was first voiced by Don Berwick, ThomasNolan and John Whittington in 2008, in an article in Health Affairs.  That triple aim is care, health and cost.  This month’s Health Affairs is dedicated to the “triple aim” going global as more countries around the world struggle to find solutions to the care, health and cost dilemma. 

In the original article in 2008, the authors wrote about the need for three constraints to be put into place to drive us closer to the triple aim.  They were “(1) recognition of a population as the unit of concern, (2) externally supplied policy constraints (such as total budget limit or the requirements that all subgroups be treated equitably), and (3) existence of an “integrator” able to focus and coordinate services to help the population on all three dimensions at once.”  These constraints have societal and population concerns as the focus.  The “integrator” is there to “help the population” rather than to help the person.  I worry about a certain professional arrogance that is inherent when one defines constraints for people rather than asking people as individuals, what they need.  While populations are made up of individuals, individual’s values and views may be minimized when the population is the focus.  When the first step is the development of constraints, the individual is likely to see those constraints as being against their own best interest. 

This focus on the population, as it is currently interpreted, runs the risk of minimizing the need to understand the many human elements in dealing with illness.  It can downplay the fact that the ability of any one person to heal is often as dependent or even more dependent on the social, economic, psychological and spiritual parts of their life as it is on medical science and health system operations.  People need to have some help balancing their life with their illness when they are sick.  People, as individuals need to have a trusted resource to help them through a maze of difficult decisions and difficult choices that poor health demands.  People need help finding their own voice in a system that can appear to be more concerned with population needs than with individual patient care. 

Good health care is labor intensive and the labor is expensive.  Much of that labor is involved in the technical aspects of care but patients and their families also value expert assistance in decision making requiring knowledge and skill that is totally focused on the individual and their own understanding of how they want to live their life and how they value the options before them.   Traditionally physicians and nurses have taken central roles in that communication and decision making.  However our attempts to create efficiencies, as our population grows more diverse and our health system grows even more complex, have caused doctors and nurses to spend less and less time understanding the person as a person, understanding their values and respecting their autonomy.  Doctors and nurses are considered too expensive to be used in such a way.  But that human need is still there and the emphasis on doctor and nurse productivity has led to a void as the time to understand the patients before them as people is not seen as productive.  That void, has led to higher costs as people give in to their fears and isolation and flail around a health care system as they try to find their way to healing. 

An article in the “triple aim” issue of Health Affairs by Michael Macdonnell and Ara Darzi entitled “A Key to Slower Health Spending Growth Worldwide Will Be Unlocking Innovation to Reduce the Labor Intensity of Care” addresses this issue of the cost of expert health labor.  In the United States, 56% of health care costs are labor costs. They point to labor saving technologies, telemedicine services, and the high productivity centers in India at which “the hospital uses expensive assets such as cardiac catheterization laboratories at a rate five times that of US hospitals” to achieve a resultant lowering of the labor costs for each procedure with an efficient assembly line approach.  They speak of the need for more “patient self-service” especially in the management of chronic disease.  They do not address the need to treat the whole person; the need to address the fear, isolation, loss of autonomy, possible loss of job, and possible loss of feeling of personal worth that can easily be a part of any illness. 

We continue to try to find solutions to the triple aim but always appear to focus on the costs and to focus on disease as divorced from life.  Until we truly understand and address the issue of illness from the point of view of the person who is sick and from the family who cares about that person, we will miss the boat. 

At Accolade, the company I have had a part in building, we have addressed the labor economics by addressing individual’s issues of life and illness directly.  We have created a new profession of Health Assistant.  The Health Assistant offers expert decision support and expert knowledge of the whole person and their family to help with all the implications of the illness.  Each Health Assistant maintains a focus on the specific needs of that person and family and helps them from their perspective.  They are serving that person and that family and purposely not focusing on the triple aim goals of the health policy experts.  The irony of this focus is that by maintaining the focus on the person as part of a family and community unit, savings are achieved that are greater than in programs that constrain and greater than in programs that attempt to tell people what is best for them. 

Our new profession is in the business of helping the person find his or her own path to health and healing but not in diagnosing and treating disease.  Our innovation is focused on building a skilled work force to focus on the needs of the individual and the family from their reality and their prospective as they access health care while living their lives.  

Genomics, Clinical Risk and Financial Risk

We now have the entire human genome defined and “sequenced” and the costs of this clinical sequencing for individuals have decreased dramatically.  In medicine today, that knowledge is being used to develop new tests so that health professionals can use the genetic tests to assist in making a diagnosis and deciding on treatment.  However as the costs of whole exome and genome testing go down even more, a price point is nearing at which it will be less expensive to do a complete clinical sequencing than to do specific genetic tests.  This promise of more genetic information at lower costs creates the possibility that we will have more information that can potentially help the patient.  There is also the promise of finding abnormalities that we did not anticipate.  This is what the American College of Medical Genetics calls “incidental findings” and is no different than that seen in many areas of medicine today.  When a doctor sends a person for a chest x-ray, or a chest CT for a cough, unanticipated and incidental findings may be seen in the bones that are visible on the imaging study as an example.  With complete clinical sequencing however the number of secondary and incidental findings may be significantly larger than we see today with other diagnostics. 

In recognition of these emerging facts, the Institute of Medicine hosted a 2 day meeting in July 2012 to help understand the economics of adopting whole genome sequence information into health care.    That led to a report of the meeting and also to a “viewpoint” published in the Journal of the American Medical Association entitled "The Economics of Genomic Medicine" that described the main agreed upon insights by the participants.  In my words, their points were:

1. Genomic researchers, health care practitioners, payors, and economists are all speaking different languages and have no comfort with the languages of the other disciplines making any discussion of value and economics difficult.
2. There is little to no evidence at this time demonstrating that genomic data favorably affect health outcomes.
3. We don’t know how to use and explain this clinically sequenced data to people in any sort of logical, understandable and cost effective manner to produce value.  We just don’t know what to do with these genetic facts so health professionals have a hard time educating and counseling their patients on the implications of the clinical sequencing.  
4. We don’t understand “personal utility” and its role in assessing the value of sequencing. Personal utility describes the meaning and worth any test or intervention brings to an individual from that individual’s perspective rather than from any external metric such as morbidity or mortality or from an expert’s perspective.

To summarize, we don’t know the value that this clinical sequence has for an individual, we don’t know how to talk about it, we don’t know how to measure its value, and the experts don’t completely understand one another.  Admittedly that makes discussing the economics difficult at best.  It also creates a dilemma for the payors, both private and government, about what should be paid. 

In this country, we have a combined pre-paid health care model and a health insurance model to pay for care.  Insurance is a way of sharing the financial risk of relatively unusual high cost events while pre-paid health addresses the costs of preventive care and screening which are not at all unusual.  Preventive care and screening are encouraged and paid as the value from both a public health and a moral point of view are believed to be worth the cost.  The theory is that finding clinical risks early leads to lower costs of treating disease and thus would also be advantageous for financial risk.  The economic reality has proved to be more complex however and is dependent on the specific clinical issues and the specific use of the information that screening uncovers.  That has led to tremendous debates in the public arena concerning specific tests, such as debates around the use of PSA testing for the risk of prostate cancer and the appropriate age to start screening with mammography for breast cancer.  These debates occur as we attempt to find definite answers to questions that can really only provide us with statistical estimates of both clinical and financial risk.    

Risk is nothing more than a probability based on data.  This is true for both clinical risk and financial risk.  We now routinely treat disease risk, as much or even more than we treat disease.  We screen for silent illnesses such as hypertension that may not be symptomatic to prevent them from causing problems in the future and try to find illnesses at earlier points in their course to affect cures such as screening for breast cancer and colon cancer.   But we don't really know what would have happened in each case had we not screened.  We can only estimate the probabilities of both clinical outcomes and financial outcomes.   

With clinical sequencing, we have entered the potential for a new world of health risk.  Right now, the issue is one of deciding how to report the incidental findings from a clinical sequence.  The American College of Medical Genetics has spent the last year developing a policy statement on just this issue with the draft recommendations now being circulated among members of the college.    Part of their effort is an attempt to identify clinically relevant incidental test results and then recommending whether or not such findings should even be reported to the patient.  But this is just the beginning.  As our understanding improves we will quantify new risk probabilities and thus new test "results" based on the clinical sequencing and the number of incidental findings may multiply. 

I wonder if some of their efforts to control what is reported are in vain and are an outgrowth of the different language they, as experts in genetic diseases, speak when compared to the patients and the public who see the open dissemination of all available information as a human rights issue and a patient autonomy issue, rather than a test reporting issue.  The ability of any health professional or any expert organization such as the ACMG to define what results a patient should see and should not see is likely to be strongly challenged and will probably ultimately be refuted. 

This can lead us to a situation in which the multiplied “incidental findings” which are reported can lead to patient demands to find reasons for these findings and to attempt to modify any risks inherent in these results.  That can only lead to higher total costs with little potential benefit at this point of knowledge.   

In this scenario, the economics become challenging.  Who should pay for this type of attempt at risk mitigation when the likelihood of clinical impact will likely be low for some time to come?  Will it be decided by the American College of Medical Genetics which will look at clinical utility or by the yardstick of “personal utility”?  I am as unsure as the members of the esteemed IOM panel.  While the potential for good is exciting, the potential for increased financial and clinical risk from attempting to predict and cure every possible illness is a bit overwhelming.  We will need to be very careful as we try to address the excellent points made by the Institute of Medicine Committee. 

Questioning, Listening and True Learning

“If men learn this, it will implant forgetfulness in their souls; they will cease to exercise memory because they rely on that which is written, calling things to remembrance no longer from within themselves, but by means of external marks. What you have discovered is a recipe not for memory, but for reminder. And it is no true wisdom that you offer your disciples, but only its semblance, for by telling them of many things without teaching them you will make them seem to know much, while for the most part they know nothing, and as men filled, not with wisdom, but with the conceit of wisdom, they will be a burden to their fellows.”
― Plato, Phaedrus

This week, I sat down with my family for the traditional Passover Seder with the reading of the Haggadah and the ongoing questions and discussions that are the central part of the evening.  The feast of freedom, as one Haggadah calls it, is based on questions as being free means being able to question everything without fear.  The written word of the prayers and the story of the exodus from Egypt, while important, are not as important as that interactive dialogue that ensues and that is expected and even mandated by the holiday.  Each section is designed to elicit conversations, questions, and thoughts that lead to the participants gaining intrinsic knowledge.  This is in keeping with Plato’s contention that merely reading is not a way to impart knowledge.  True knowledge must come through dialogue and creating an internal understanding of the topic at hand.  I have found this to be particularly true in health care and in endeavors to help people obtain quality care from our health care system. 

  

The first step in internal understanding as Plato understood is to ask a question and then listen to and hear the answer.  Each year at our family Seder, it starts with the four questions asked by the youngest in the home.  My grandchildren, age 7 and 5, are asked (and were asked as soon as they could talk) to form their own questions at that section and throughout the Seder in addition to the standard four questions.  Everyone at the table is encouraged to ask questions.  The questions themselves are always more important than the answers as the questions allow a discussion to start: a back and forth of the type that is more likely to produce learning and understanding.  Isidor Rabi, who won the Nobel Prize in physics, was once asked why he became a scientist.  He answered, “My mother made me a scientist without ever intending it.  Every other Jewish mother in Brooklyn would ask her child after school: ‘Did you learn anything today?’  But not my mother.  She always asked me a different question.  ‘Izzy’, she would say, ‘Did you ask a good question today?’  That difference – asking good questions – made me become a scientist.”

 

Plato, in writing his dialogues, often presented Socrates as a questioner.  Our understanding of Socrates is through these dialogues written by Plato.  Plato and Socrates believed that just reading something, rather than discussing something, could not lead to true learning and could instead lead to an intellectual laziness which would produce people who “for the most part they know nothing, and as men filled, not with wisdom, but with the conceit of wisdom”.  Plato tried to recreate that give and take by writing as dialogues.  Implicit then in this approach to questions leading to dialogue is the assumption that after the question is asked, there must be true hearing of the answers, if only to be able to formulate the next question! 

That resultant listening is really an exercise in interpretation and then in testing that interpretation with yet another question.  Thus the iterative nature of a good clinical interview is really no different than a Socratic dialogue or a discussion elicited by a question at a Seder table.  Plato and Socrates believed that only in such a manner could learning occur and Professor Rabi believed that only in that matter could unique, creative scientific inquiry truly occur.  In medicine and law, that tradition of asking question and then eliciting discussion, dialogue, and research, is at the heart of education and training.  It is believed that intrinsic learning occurs in the iterative nature of the teacher and the student having such a “dialogue” on the topic and situation at hand. 

The goals of using such a system of questions followed by dialogue in health care are to create a better understanding between a care giver, a care supporter, the person in need and often the family in need.  That understanding then leads to better, more personalized care for that unique individual.  It allows for intrinsic learning for the patient who needs to do certain things, whether it is to take certain medications, stay on a diet, or follow through on therapy.

 

Currently, there are those who believe that technology can make this dialogue unnecessary.  A professional forming a relationship with a person in need is believed to be too costly and even wasteful when powerful big data, interactive Internet tools and apps that are with us wherever we go can be used instead.  Engaging in dialogue is believed to be too expensive and too difficult.  Yet we should share the same fears in this era as Socrates and Plato did in their era: the fear that we will not achieve intrinsic learning, either on the part of the care giver or of the patient by the mere reading of an Internet page or the use of an app.  We still need those dialogues that lead to true relationships in order to create the intrinsic understanding that leads to action on the part of people who are patients living their lives with their families, their work, and their friends.  The technology is welcome but only if used to foster the dialogues and to assist in the development of the relationships that are at the heart of good practice and good care. 

Thus asking the right questions, truly hearing the answers and using that as a starting point for dialogue are crucial steps in creating good quality care.  That may not win any Nobel prizes or lead to the entirety of Western philosophical thought; however for me, as a dedicated health professional, it is an art that we should continue to foster and not allow to be lost in the excitement over technological solutions.