Humanism and Money in Medicine

“Chia buo᷈n” – Vietnamese phrase meaning “share in the sorrow”

If your time is limited, don’t read this blog post. Instead, turn directly to the second-place-winning essay in the Humanism in Medicine contest; this essay was written by David B. Duong, a third-year medical student.  In this essay, Dr. Duong – and I refer to him as “Doctor,” as this essay shows me that he already has the knowledge of the art of medicine that confers upon him that title – writes about his experience acting as the translator for a Vietnamese patient with end-stage colon cancer.  He takes us through the experience of being at the patient’s and the family’s side, as they go through the confusion and the required decision-making when the 83-year-old patriarch is in the hospital with a bowel perforation – a hole in the large intestines.  David Duong, through his caring, helps the man and the family understand the illness, understand their options, and ultimately says goodbye when the man goes home with palliative services to spend his last days with his family. 

Duong writes toward the end of the piece:

“As a final goodbye, I reach out my hand to shake his and wish him continued health and strength.  He grabs my hand and tells me, ‘Thank you for helping me not be afraid.’ … I have also learned that by caring for the patient, by placing the patient at the center of our medical practice, we can establish a trust relationship that just might lessen that fear.”

In this essay, David Duong never once mentions costs, and my bringing it into the discussion may seem to some to be crass --as though I am diluting the message of caring and trust that is inherent in this essay.  However, I see cost and care as going together.  For me, lowering costs in ways that maintain trust and relationships is critical to good care, as it improves access to care.  Unfortunately, many of our well-meaning efforts to lower costs end up diluting trust by short-changing the time and communication critical to building and maintaining needed healthcare relationships.  David’s interaction with this family saved money.  By caring for the patient and the family, and by communicating with them using their language, their values and their culture, he helped them embrace home palliative care.  This type of situation could have easily have been much different. The fearful family and patient, not trusting the doctors and nurses caring for them, could have demanded “everything” be done, causing useless pain and cost. 

In this era of 10-minute office visits, Internet-based self-service diagnosis and algorithm-driven healthcare, I still believe that the most effective way to lower costs is to have trusted health professionals at the side of people in need.  David Duong’s essay conveys that message more eloquently than I ever could.  

Harms, Benefits and Unknowns in Surgery

“If you are a surgeon, think like an internist, and if you are an internist, act like a surgeon.”

“Never give a patient with a medical illness to the surgeons.”

                                                     Robert Whitlock, MD

When I was a medical student at the Columbia University College of Physicians and Surgeons, Dr. Robert Whitlock was an attending who inspired me to focus on gastroenterology.  Dr. Whitlock was a southerner in a prestigious New York medical school – a private practitioner who taught and believed patient care and teaching were the two noblest activities that anyone could ever take part in, and a purveyor to medical students of “Whitlock’s Rules of Medicine,” always given in a southern drawl that made them seem so much more important.  The two quotes above may not have originated with Dr. Whitlock, but they will be forever associated with him in my mind.  I thought of these rules as I read several articles in the December 26, 2013 Wall Street Journal. 

It is striking that in today’s premier financial newspaper, there are three articles related to healthcare -- only one of which is related to health insurance.  The other two are related to surgery – and the Wall Street Journal isn't the place where one expects to see the latest surgical studies to be published.  As is my routine, I went back to the original medical journal sources of the articles after reading the news articles.  They both make it clear that the wisdom of Dr. Whitlock holds today, just as it did back in the 1970s. 

The first article was about a study from Finland reported in the New England Journal of Medicine this week. The study used the technique of “sham surgery” to determine if people with partial meniscal tears that are not the result of acute injury, benefit from arthroscopic surgery to remove the torn part of the meniscus.  Sham surgery is surgery in which someone is taken to the operating room and put under anesthesia; a small cut is often made —and then nothing else is done.  Patients wake up thinking that they have had the surgery, but it is a fake.  Based on this study, it appears that arthroscopic surgery has no benefit for someone with a torn meniscus not due to an acute injury.  In any surgery, if there is no benefit, then there is only the risk of harm from the anesthesia and the surgery itself, and of course, the $4 billion in annual direct medical costs in the United States that make the study worthy of the Wall Street Journal.  The unknown in all of this is whether specific patients have certain characteristics that would make them likely to benefit from the surgery.  The authors of this study specifically excluded certain people (as any good study would), but in those exclusions there may be others who would benefit.  I make this point because the study does not say that all arthroscopic knee surgery is unnecessary.

 

Sometimes we don’t realize a surgery is harmful until the surgery has been performed for some time.  The other Wall Street Journal article focuses on a 2012 study, entitled “Peritoneal dissemination complicating morcellation of uterine mesenchymal neoplasms.”  In morcellation, a uterine benign tumor is removed via hysteroscopy —which involves only a very small incision and quick recovery time –after the tumor is basically smashed into small pieces.  The problem: If the tumor is cancerous, then the small pieces can get lodged in the abdominal cavity and cause the cancerous cells to spread.  This was originally believed to be an exceedingly small potential harm, but has turned out to be more common (though still very unlikely) than previously thought.  Since the harm fits into the category of the “small probability but devastating outcome,” the procedure has come into question.

In a world of big data, my voice on this blog has been, and will continue to be, about relating studies and data to individuals in need. What does all this mean to the individual and how does that relate to the wisdom of Robert Whitlock?

• Surgeons believe in surgery.  In order to be a surgeon, you have to believe that the work you do is effective and helps people, so that creates a bias toward operating.  My wife’s uncle was an orthopaedist.  He called himself an orthopaedist, as he believed that the term orthopaedic surgeon was too limiting -- and it pushed physicians to think that all solutions were to be found in the operating room.  If you don’t need surgery, don’t go to a surgeon.

• If you go to a surgeon, make sure you go to one who “thinks like an internist,” meaning he or she will evaluate all the various solutions, understand the potential harms of surgery, and are willing to walk away from operating if the risk of harm is larger than the potential benefit. 

• Be wary of the procedure that is “new” and promises to be easier for the patient.  The risks may be only partially understood and the potential harm may be greater than it appears.  When I was practicing gastroenterology and nutrition, it was popular to treat obesity by placing a balloon in the stomach to limit the amount of food that could be eaten – until the complications of the balloon perforating the stomach and esophagus became apparent. 

• Don’t assume all surgery is unnecessary.  Some surgeries are lifesaving, and the same type of bias that may cause unnecessary surgeries can also cause people to avoid having the surgery that they need.  

A decision to have surgery should be thoughtful and made with complete information and the help of trusted family, doctors and other knowledgeable health professionals.  It should be based on the specific facts of the individual patient at that point in time informed by the medical evidence that best defines the potential benefits, harms and alternatives available.  It is never a decision to be taken lightly.  

Don't Just Do Something Stand There

I first wrote this more than two years ago and it was directed towards the dedicated Health Assistants who work with me at Accolade.  I was asked to reprint it for them as the message still holds, especially in this holiday season when the most chronic of problems can seem to be even more insolvable. As I read it, while the message is directed towards Accolade Health Assistants, it actually is true for all of those in the caring professions.

We have developed, and continue to develop, a wonderful culture of problem solving, and of helping.  That culture is being built by every one of you as you work every day to help your clients and their families.  It is something we strive for and it is what makes us successful.  Because we are all such problem solvers, dealing with people who have problems that are not amenable to a solution, an answer, can cause us to be frustrated.  That frustration comes through to our clients and we cease to be effective.  So, the question is how to be most effective when solutions do not exist.  How do we deal with our own desire to change a bad situation when we have no control over the situation?  How do we learn to just stand there and why would we want to?

Lately, I have been discussing clients with many of you whose problems go back many years.  These problems have had numerous attempts at solutions, stops and starts in therapy, and frustrated health professionals who end up ineffective.  I do not want us to join the list of frustrated professionals, who have failed to find solutions.  The fact is that there are many problems that have no solutions. 

You cannot reverse an irreversible illness; you cannot make an anorexic eat over the telephone; you cannot explain and treat symptoms that are related to underlying causes that go deeper physically and emotionally than current knowledge can fathom.  We cannot perform the big miracles that these people need. 

However we can do a lot just by being there.  We can create small miracles that, over time, can lead to very meaningful results to the client and their family.  We can help people deal with the hand they are dealt and live with their own reality, in such a way as to enjoy and embrace their lives. 

We do all this by listening, by informing, and by accepting the client as they are.  We provide a safe person, their Health Assistant, who will hear them and will gently influence them towards attitudes and behaviors that will lead them to make better health decisions.  We will give them a trusted person who helps them when they need help and comforts them in a very human way when there is no medical science that can help them. 

When we do all this, it turns out we will create small miracles that can turn into very large results.  When we do this also, we help people make better decisions and that will save them and our customer companies money as well.  We have found out how to work miracles as we improve care and save money but the way we do it is by each and every one of us understanding our limitations and understanding the power of listening and empathy rather than trying to cure every ill.    

Healthcare as a Calling Across Generations

A young resident’s recent article in The Journal of the American Medical Association (JAMA) – as well as a more senior physician’s blog post, gives me hope that the calling of medicine lives on, and that professionalism by all those who care for others in need remains the key component in any healthcare system.   

The article by Dr. Diane Chang, entitled “Scut,” starts by defining scut work:  

“I want to talk about scut work, defined as trivial, unrewarding, tedious, dirty and disagreeable work; in other words, I want to talk about … the physical, backbreaking, day-to-day work of taking care of another person.” 

It often is not pretty to care for another human being who is sick.  It is filled with pain, and with sights and sounds that many would consider disgusting.  Dr. Chang rightly points out that the job of tending to the needs of a person are not a doctor or nurse issue, but a human issue that is the job of every person in a caring role: 

“I worked with an intern who, during her first month, took care of a 32-year-old patient with advanced HIV and intractable diarrhea.  One day my intern told me that she had, alongside the nursing aide, cleaned him up, as well as his bed and the floor. Why did you do that, I asked.  It’s not your job.  She answered that often, they did not clean him up right away and she did not want the patient to have to lie in his own excrement for a minute more than he had to. Amid writing orders and discharge summaries, relaying information from consults back to the team, and learning how to be a physician, my intern also made it her job to clean up poo.”

The intern understood that the nursing aide was, in that moment, even more important to the patient's care than the physician and the doctor's job at that point of time was to help that nursing aide.  To understand that simple fact is to have true passion for patient care.   It requires understanding that the “small” issues like cleaning up a soiled floor and bed, can be more impactful on a human scale than the “big” issues.

    

On the other side of the generational divide comes a blogpost entitled "Playing Doctor" from Dr. James Salwitz, an oncologist who has been in practice for more than 25 years. In that piece, he talks about the need to get past the personal issues that a physician (and this applies to all health professionals) has on any given day even if it means “playing doctor.”  Even when the passion wanes, the true professional understands the need to do whatever has to be done to help the patient. 

“However, there are times when it gets to be too much. When one is tired, the paperwork piled to the ceiling, you are missing irreplaceable personal events, then the quality of patient interactions seems to deteriorate to completing disability forms, rescheduling already delayed procedures, rethinking diagnostic ideas, salvaging failed therapies and running late in a chaos of myriad minor delays. Then it is very hard to summon the needed insight, compassion and focus which are vital to being the kind of doctor towards which each of us strives. Then, the best you can do is ‘play doctor'."

For the physician in practice for 25 years, the paperwork and the disability forms are even worse than cleaning up the poo.  But with the wisdom of experience, Dr. Salwitz understands that if you have the professionalism, you will act in the interests of the person in need. 

“Nonetheless, you are just human, so those tough moments will occur, when you cannot really ‘be a doctor’. …. On those days, you just ’do your job,’ be there for the patient and suppress the loss and weariness. Paradoxically, it is that commitment to the doctor’s role, when you are just playing, which marks the great doctors, because even on their weakest day they put the patient first and their own healing later.”

One day at an airport, after I had left practice and was a health policy consultant, an elderly woman collapsed near me in the baggage claim area. I immediately went over, checked her airway and checked for a pulse. In other words, I put my fingers in her mouth and my fingers on her neck. I then started CPR which, at that time, called for mouth-to--mouth resuscitation in addition to chest compression.  The consultant with me was impressed and said, “You really are a doctor!”  I knew I was “playing” doctor. The thoughts going through my mind, while they included a desire to help this woman, also included my own fear of infection and my own wish that I was not doing what I found myself doing. I just knew that of all the people standing there, I had the training and the calling to help this woman.

Dr. Chang and Dr. Salwitz both show caring, one with the passion of youth, and the other with the wisdom of age.  As I put together the passion of Dr. Chang and the wisdom of Dr. Salwitz, I see the wonder of medicine and the caring professions as a calling.  These two people at different points in their careers share the mission of helping those in need and thus suggest that the light of care in health will continue perhaps in spite of the politics and the policy debates.

Being “Certain” in an Uncertain Medical World

The art of medicine is managing uncertainty. Yet, be honest: Have you ever met a more certain group of people than physicians? As a physician, I am no different. This past week, a close friend of three of my sons called me, as he was having severe abdominal pain. I spoke to him and his wife and quickly determined he needed to go to an emergency room. I told them that while I could not diagnose over the phone and without examining him, I did think this was most likely a kidney stone attack and not appendicitis. The next morning -- when he was out of surgery for his appendicitis -- I thought about how my relative certainty about it being a kidney stone was so wrong. I actually thought about asking to see the pathology report to make sure it was really an inflamed appendix, and not a kidney stone.  I was certain even in the face of uncertainty and conflicting data. 

That incident got me thinking about another time when I was wrong in a very similar situation. At that time, more than 35 years ago, I was an intern in internal medicine and I developed severe abdominal pain. My wife -- the smartest physician I know and at that time an intern in pediatrics -- took me across the street to the emergency room where I gave a perfect story to the surgical resident for appendicitis (this was in an era before we did CT scans to rule out appendicitis), and they started to get me ready for the operating room. The surgeon, my wife and I were all positive this was an acute appendicitis, but then I gave a pre-operative urine sample that was filled with blood.  My wife and I were surprised, as was the surgeon, but we all realized that while we were certain it was appendicitis, we were wrong. It was really a kidney stone. 

Even in this day of advanced technologies, much of medicine is still mysterious, and the practice of medicine is all about understanding that diagnostics and therapeutics are based in science, but are only rarely in concrete isolated fact.  More often, there are competing facts and multiple complicating factors; physiologic, sociological and psychological -- as well as different communication styles and contextual issues that make truly good doctors understand and learn to cope with a fundamental level of uncertainty in all that they do.  Perhaps coping with that uncertainty is why physicians often seem so sure.  Perhaps that is one way people survive as physicians. 

The secret behind the physician’s bravado is that caring doctors have to also manage their own anxiety and their own uncertainty while they manage the patient. They deal with this influenced by their own communication style and their own life context. The idea of a physician being perfect is a myth, and many excellent physicians struggle internally with carrying that myth. So doctors manage this internal uncertainly in various ways. Here, I offer my own characterization of doctors’ techniques for managing the uncertainty inherent in medical care -- and their own anxiety that occurs as a result. These techniques can be very adaptive, helpful – and, at the same time, dangerous to the patient and the physician:

When most uncertain, appear most certain:  Early in my career, a very prominent leader in academic gastroenterology told me his rule for handling patients with chronic irritable bowel syndrome:  “The less specific the treatment, the more specific the instructions should be.”  He told me of prescribing tincture of opium for these patients in the 1950s and telling them to place 11 drops -- not 10 or 12 -- in one-quarter of a glass of water, not half a glass, and drink it quickly. While he knew the efficacy of the treatment he was giving was uncertain, he believed that showing certainty as a physician would make it more likely the treatment would help than if he wavered.  This maximizes a placebo effect, which is real and effective; however, in the long run, this also carries the risk of harming the patient’s trust in the physician. 

Use specialist consultants generously:  This is the other extreme of the first technique. Instead of appearing to be totally confident in all pronouncements, the physician is quick to send a person with any illness to a specialist. In my previous life as a gastroenterologist and nutritionist, I was often frustrated by consultations that appeared more related to the referring physician’s lack of knowledge than the patient’s need.  The really skilled physician knows when to use the specialists in terms of both timing and condition. A consultation made too early creates risk for the patient, as the specialist may feel the need to “do something” -- when doing nothing and waiting for a self-limited illness to run its course may minimize harm and maximize benefit for a patient. The doctor who farms everything out due to his or her own internal uncertainty does the patient no favors while the doctor who never uses specialists may create risk by delaying needed care that only a specialist can give. 

Order every test to rule out the less likely diseases:  In this case, the fear of missing a disease drives over-testing.  While the good physician is compulsive and complete, the advances in medical technology and the ability to order newer and newer tests often lead physicians to downplay the harms that can come from over-ordering.  Every test has false positives and false negatives. I have seen people saved from devastating illness from a test they didn't really need (the cancer found on a CT of the abdomen for pain that was “incidental” and not related to the pain), but I have also seen people die as a result (the person who has surgery when a finding on a similar CT scan is thought to be a tumor, and who dies during the surgery in which no mass is seen).  The risk of harm from over-testing is higher than the likelihood of benefit however if the physician treats everything as routine and not needing investigation, that too can be harmful. 

Follow the algorithm: In this era, the more we learn, the more important standards and guidelines are.  However, the doctor who only relies on the algorithm and does not “see” the person behind the disease will miss important opportunities for diagnosis and treatment.  It is often easier for physicians to take solace in following an algorithm than to understand that algorithms are limited and cannot take the place of the decisions a good physician needs to make in managing uncertainty.  Dr. Saul Weiner’s research on the context of medical care shows the need to understand the patient’s life in order to maximize the benefit of the algorithm and minimize the risk of blind obedience to it. 

Go to the academic medical studies: I usually believe that this is the most useful technique, yet the doctor who needs to look everything up is neither efficient nor maximally effective.  You need to know enough and, at the same time, know what you don’t know and what you need to investigate. You need to understand that facts change and that the latest pronouncement of a breakthrough in the medical literature may be followed by later reports showing the breakthrough to create harm as well as benefit.  At the same time, I always will trust a doctor who says “I am not sure” and “I want to look up more information” more than a doctor who tries to show he or she has mastery over everything. 

The good doctor manages uncertainty. The great doctor also effectively communicates that uncertainty to the patient while still maintaining the patient’s trust.  That is the high form of the art called medicine.  

Ted Med Great Challenges Discussion

This week I was honored to join a distinguished group of participants in the Ted Med Great Challenges program underwritten by the Robert Wood Johnson Foundation on a panel moderated by Dr. Kavita Patel.  Here is the panel discussion (broken into two parts, due to a technical difficulty during the program).

https://www.youtube.com/watch?v=KjB8MZuzL1c


https://www.youtube.com/watch?v=52-2hG3AKaY#t=1692 

Thanksgiving, Kate Penny and the Medical Advisory Board

In my last blog post, I spoke about Accolade’s new Medical Advisory Board and the caring smart people who serve on that Board.  I also described two cases, including one of helping a patient who had end stage cancer, that Accolade nurses presented for discussion at the meeting.  Kate Penny is one of the talented nurse who presented and this is her reflection on that meeting:

"I wanted to thank you all for the privilege of presenting at our very first Medical Advisory Board. It was both a great learning opportunity and a tremendous experience.  I found the Advisory Board to be both kind, and thoughtful with their questions. 

In retrospect, I believe I did a less than a stellar job in representing M_____ and differentiating Accolade’s mission and values (Alan editorial comment – a stellar job was done).  Working with M_____, we added value. We dealt with claims, appeals, pain control, prevented unnecessary procedures and educated and supported the family. M______ gave me much more than I gave her. She let me share in her grief so that I was able to share in her love. We were together in wondrous times and witnessed the miracle of life and death together. We shared joy, sorrow, courage and tenderness. It was real. Kindness, tears and laughter are the currency of the heart, and meant to be exchanged.

M______ lived in constant terror of dying. She viewed her life as if it were a past event, and for many months defined herself solely by her terminal disease. M_____ had forgotten that she was a soul with a body, not a body with a soul. “Operation Love” helped her remember that for a short time. M_____ died peacefully and with grace. How do you communicate this in terms of metrics and statically project these measurements? Active love and listening goes beyond engagement and feelings of connected moments. It is looking for what is needed and providing it. It’s realizing that what needs to be done, is for you to do.

I have the privilege to witness this daily in the Health Assistance Center on so many levels with my co-workers, often unrecognized by others. It humbles me. My team mates and leadership are acutely aware of my strengths and weaknesses and they continue to educate, support and encourage with love. There are days when you feel like there is not one microgram left to give. I look around me and hear the passion to serve or just get it right and am inspired by my colleague’s devotion.

One of the Medical Advisory Board participants asked the “what’s the secret sauce?” question. People, stop over thinking it…it’s the people! We’ve learned and employed our beautiful model. We work hard to engage and build relationships. Once that has been achieved, the real work begins. We take the journey with the client and often share some of the most intimate moments of their lives. Health Assistants and Clinical Health Assistants have been empowered to do this and share the dream. The dream to change health care in the most unique way I have ever witnessed in a corporate setting. Just do the right thing!

In past years my family had a tradition at Thanksgiving of writing short letters of gratitude. I would like to continue that tradition with my Accolade family. I am most blessed because of each of you.

I am grateful for the sense of community I experience daily.

I am grateful to simply be accepted here as me. You have allowed me to combine both the art and science of nursing, a dream come true.

In short, each one of you at Accolade has given me purpose and enriched my life. For that, I will always be grateful."

Smart, Caring People Changing the World

Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has. – Margaret Mead

These days, the news is filled with stories about the political strife surrounding the Affordable Care Act rollout. As I listen and read, I worry that individuals in need--who are dealing with their own and their family members’ illnesses--are being given short shrift in a debate driven by poll numbers, congressional races, and ideology. Yet I still have hope about the future of healthcare.  That’s because I spent two days last week with Accolade’s newly formed Medical Advisory Board. These renowned healthcare professionals came together to discuss ways to improve the care we provide and, despite their national prominence and expertise in health policy, were totally focused on how these policies and programs affect individuals and their families.

I admit to being a bit awestruck by the people who sat together to discuss ways that we at Accolade could better help people in need.  

• Dr. Joseph Betancourt, the director of the Disparities Solutions Center, director of Multicultural Education for Massachusetts General Hospital, associate professor of medicine at Harvard Medical School, and an expert in quality of care, disparities, and cross-cultural care and communication talked about ways to better help people by understanding their unique cultures
• Dr. Samuel (Buddy) Hammerman,  senior vice president and chief medical officer for Select Medical—where he oversees the company's division of 110 long-term acute care hospitals—uses his expertise in pulmonary medicine and critical care to ensure that every single patient in these facilities receives excellent care.
• Dr. Larry Kaiser, the CEO of the Temple University Health System, senior executive vice president for the Health Sciences, and dean of Temple University School of Medicine, is a world-renowned chest surgeon and the co-author of more than 13 books and 250 papers, but he is as deeply concerned about the high-needs population his health system serves as he is about the academic responsibilities of research and training new dedicated health professionals.
• Dr. Bruce Korf, chair of the Department of Genetics, and director of the Heflin Center for Genomic Sciences at the University of Alabama at Birmingham, is focused on children and families who deal every day with the challenges of complex genetic diseases, including neurofibromatosis; he spoke of the need to better address families with these challenges.
• Dr. Andrew Lasher, chief medical officer of Aspire Healthcare, is one of the nation’s bright lights in palliative care and a physician totally dedicated to using compassion when caring for the dying.
• Dr. Adam Perlman, associate vice president for Health and Wellness for the Duke University Health System, and executive director of Duke Integrative Medicine, is working to meld alternative medicine and the best of academic medicine into results for the most difficult patient problems.
• Dr. Saul Weiner, professor of medicine, pediatrics and medical education and vice provost of planning and programs at the University of Illinois at Chicago as well as deputy director of the Veterans Affairs (VA) Center of Innovation for Complex Chronic Healthcare is conducting cutting-edge research on how the context of life issues impacts the delivery of care; he has begun to change the conversations about what “best care” really is. 

We were also joined by Dr. Tanya Benenson, the corporate medical director for Comcast NBCUniversal; she worries about the health of the Comcast call center worker while at the same time she worries about the talented individuals NBC has working around the world. 

Throughout the time together, these smart caring people talked about individual patient cases and how to better help them. 

We discussed the 50-year-old man, originally from Cuba, whose wife had recently died of cancer; he had a history of drug abuse, was on anticoagulation for heart disease, and had diabetes.  This man was having trouble communicating with his doctors and was therefore not taking his medications as he should, but was too proud to admit his difficulties.  The Accolade nurse who helped him got to know him, talking with him in both English and Spanish, gaining his trust and changing his life as his medical illnesses and his behavioral illnesses came under closer control.  Our Medical Advisory Board sat listening and shared their insights on how to improve his care even more.

We discussed the woman dying of ovarian cancer, and the need to incorporate her large family in the discussion as she moved into hospice care.  The Accolade nurse talked about the trust she formed with this woman as she helped the person accept her diagnosis and prognosis and how her last days were made better by being open with her family.  She discussed the work done to help this woman move to hospice care in order to have more quality time with her son.  The national leaders around the table were as energetic and thoughtful about those individuals as they were about how to improve a nation’s healthcare system.

Over and over, I see the best and the brightest people in healthcare sharing the perspective of the individual and the family in need.  This week I was again reminded that healthcare is not about politics, but about people’s lives, and the real leaders in health understand this and incorporate that compassion and focus on families into everything they do.   

Health Professionalism: More than Following Algorithms

“It is much more important to know what sort of a patient has a disease than what sort of a disease a patient has.” Sir William Osler (1849 – 1919)

I use--and perhaps overuse--this quote by William Osler, who is considered to be one of the fathers of modern medicine.  As a physician, I have always believed that understanding the patient, and not only the illness, is the key to effective therapeutics. However, today there are many who believe that the future of effective therapeutics lies in use of standardized approaches and in computerized systems --rather than in the ability to understand the person who has the disease. 

There are those who even believe that we are approaching the point at which doctors, nurses and other health professionals may be unnecessary.   The belief is that as evidence-based algorithms get more sophisticated--and computers and apps provide the platforms for their use--the need for a professional disappears.  Yet I worry about the loss of professionals and the loss of professionalism.  I am not the only one to worry.  A recent article in The Journal of the American Medical Association (JAMA) and a recent blog from the American Journal of Nursing suggest that I am not alone in my concern that blind faith in technology and algorithms may not provide a panacea. 

In the JAMA article “The Optimal Practice of Evidence- Based Medicine,” three physicians from the Mayo Clinic state that “research evidence is necessary but insufficient for making patient care decisions.” They go on to say that “careful attention to the bio-psychosocial context of patients and to their informed preferences when crafting treatments requires expertise and practical wisdom.”  Their article focuses on incorporating patient preferences into guidelines, however they also argue for a certain expertise and judgment that is part of professionalism.  They make the point that “guideline panels should rarely formulate strong recommendations.  Panels should become much more comfortable with ambiguity, both in the tradeoffs involved and in the recommendations given, and explicitly report how patient preferences and context were considered in formulating the panels’ recommendations.”  Presumably, if the guidelines are partially based in ambiguity and patient preferences--which vary from patient to patient and are part of the puzzle--an experienced professional who can customize those guidelines is a critical element of good care. 

In a blog post from the American Journal of Nursing, Karen Roush, a nurse practitioner, discusses her experience working in a retail clinic. She ultimately left that position because, she says, “the computer was in control. From the moment the patient checked in at the kiosk outside my door, every action was determined by the computer…The organization I worked for prided itself on following evidence-based practice, but someone forgot to tell them that the patient’s history, presentation, and personal experience, as well as a clinician’s expert knowledge, are also part of the evidence.”  She spoke of her slavery to the computer leading to bad medicine:  “It interferes with two really important skills – critical thinking and intuition based on experience.” 

Ms. Roush, in speaking about critical thinking and intuition based on experience, is talking about elements of healthcare professionalism.  Professionalism implies a certain moral commitment and an ethical approach that is individualized and transcends any particular job a professional may hold.  Lynne Kirk, in a 2007 article in the Proceedings of the Baylor University Medical School, gives a variety of definitions of medical professionalism and notes that all the definitions share a focus on patient welfare, altruism and trust:  “Market forces, societal pressures and administrative exigencies must not compromise this principle.”  Definitions of medical professionalism also share a commitment to patient autonomy, which implies being honest with patients and empowering them to make their own appropriate medical decisions.  

Tom Lee from Harvard and Partners Health System in Boston makes this point, as well, in a Health Affairs  blog post-- “Patient Experience Will Drive a Renewal of Professionalism”--in which he advocates for more robust measurement of true patient preferences and patient experience.  He writes: “My strong belief is the emerging focus on measurement of the patient experience takes health care in the right direction, one that will restore and give new pride to physicians and other clinicians.”  Notice he uses the word “restore” in acknowledging that in our present medical world, professional pride may be lost.  He goes on to say that we have to understand patients’ needs.  “Measuring patient needs is the right focus for physicians and other clinicians. It is the essence of professionalism.  What is not the core of professionalism is performing high volumes of services that are reimbursed under the fee for service system.  Nor is reducing spending on populations of patients under capitated contracts.  Neither of these business objectives are inherently wrong, but these financial strategies are of limited relevance to any thoughtful sense of professionalism for clinicians.”

Accolade Health Assistants®, when helping clients with needs that are clinical and social and psychological and financial, have to maintain professionalism at all times.  We are professionals helping people and to be effective, we will always use and communicate best practice, evidence-based protocols.  At the same time, we will always customize those protocols so that the autonomy and unique aspects of every person is respected.  We will, as an organization, work to better develop our own algorithms and evidence-based protocols that address our clients’ social, emotional and financial needs in relation to their clinical needs.  At the end of the day, we will also use our own critical thinking--and even intuition based on experience--as Karen Roush says, to help meet the needs of those people we help every day. 

Victories

There are victories of the soul and spirit.  Sometimes even if you lose you win.

                Elie Wiesel

It is amazing how victories can be small – even invisible to others – and can manifest in the darkest of situations and times, and yet still have a major impact.  This past week, that truth was brought home to me yet again, as I shared a stage with a number of very prominent women leaders in health.  I was fortunate enough to be part of a panel discussion at the Women’s Healthcare Innovation and Leadership Showcase sponsored by the Metro (NY/NJ/CT) chapter of the Healthcare Businesswomen’s Association .

On that panel were very smart women who are passionate about changing the world of healthcare. Two, in particular, spoke forcefully and eloquently about the seemingly small, individual efforts that—when multiplied—can change the world. 

Dr. Julie Gerberding, President of Merck Vaccines and the former Director of the Centers for Disease Control, spoke of scrubbing toilets in a small African village and realizing that clean water and empowered mothers in this village could change the world.  She talked about women who had nothing finding ways to fight cervical cancer by working together with community support.  In the midst of the poverty and squalor of a small village in Africa, Dr. Gerberding saw hope and strength in the women she met and worked with. 

Dr. Anne Beal, Deputy Executive Director and Chief Operating Officer for the Patient-Centered Outcomes Research Institute, remembered a poor single woman, who—upon discovering she was pregnant—spent weeks and weeks fighting her way through the system to obtain Medicaid coverage so she could receive the right prenatal care. Finally, at 24 weeks of pregnancy, she saw the doctor for the first time—and discovered she was carrying triplets. Dr. Beal spoke of that woman’s great strength, and of her ability to obtain care for herself and for her new family when she delivered prematurely. In a situation that some would find hopeless, Dr. Beal and that brave mother saw triumph. 

In both of these leaders’ stories, I could hear the satisfaction and joy each had in helping these women in the worst situations achieve small victories.  We were not talking about dramatic lifesaving surgery, but rather about the commonplace issues of clean toilets, routine exams, and Medicaid coverage. 

And the entire meeting was energized by their work and their words.  These moving stories made me think about my own personal journey and the fact that I was most inspired by playing a small role in helping someone find the “victories of the soul” as described by that great writer, Elie Wiesel.   While I was in college, I taught guitar to children with brain injuries. My talent at guitar was such that I could only teach someone who had physical disorders of coordination (which is why I am not playing guitar on stage these days, but talking instead).  When I saw a child’s satisfaction at mastering a note, I did not know that I was working to change the world, but helping those young people master motor control and gain confidence was earth- shaking. 

My sister has recounted her own experience as a special education teacher, helping a small child in a wheelchair at Halloween.  That little boy—dressed in his costume—came to her class in his wheelchair for their Halloween party.  He was so excited about the costume! When my sister greeted him and told him what a great costume it was, he asked, “How did you know it was me?”  He was not, at that moment, a sick child confined to a wheelchair; he was just a kid in a costume acting like any other kid. 

When I was in practice, I often treated patients who were terminally ill.  I was given the privilege of being with people at their time of greatest need, sharing their fears and their hopes, helping them communicate with their families, and helping them feel valued and heard by those they cared about in their last days and hours.  The victories I saw as they spent their last days with those they loved were inspiring. 

My wife (a specialist in clinical genetics) helps parents every day whose baby is born with a severe genetic illness, often terminal, as they struggle to accept that reality and create new hopes for their child—if that child survives—and for future children.  When she sees an older child with severe disabilities and greets the child playfully—as a child and not as a “specimen” with severe impairments—parents understand that she sees their son or daughter as a unique person.  Those are huge victories for the entire family. 

Good, experienced clinicians —and health policy leaders like Drs. Gerberding and Dr. Beal--know this secret almost instinctively: When you help people achieve small triumphs, victories of the soul and spirit, you help them achieve higher quality care—and you also save money for the entire healthcare system.  When that villager is able to help her community get clean water, the entire health of the community improves.  When the mother of triplets can advocate for herself in the confusing and difficult systems of healthcare and health benefits, the care her children will receive is better, and the chance of those triplets ending up in the hospital for prolonged stays drops dramatically.  When the family of a terminally ill child is able to avoid unnecessary, often uncomfortable tests and procedures--and the parents can hold their baby for those last precious hours instead, it is better for the parents, the child and the healthcare system.

At Accolade, I am privileged to have helped build a system that helps people every day in small ways. We help people get those small victories every single day—the victories that allow them to improve their health, live their lives, and maintain autonomy over their own bodies and their own decisions.  I get to play a part of the interactions our Health Assistants have daily. I know that as we help each of those people in small ways, we are changing their individual worlds and helping the broader health system and community, as well.   

 

 

Bad Habits or Critical Thinking?

Danielle Ofri, a physician at NYU Medical Center (in New York City) and a New York Times contributor, is one of my favorite medical commentators. Her insights and judgment into issues such as the use of the medical narrative are impeccable. However, I wonder if in this recent opinion piece she might have missed the mark a bit.

In this article, she takes herself to task for a “bad habit” of not following the ‘Choosing Wisely’ guideline from the Society of General Internal Medicine (SGIM) concerning routine visits. She still sees her patients routinely for health checks, even though this particular SGIM guideline states “Don’t perform routine general health checks for asymptomatic adults.” The guideline then goes on to explain:

 “Routine general health checks are office visits between a health professional and a patient exclusively for preventive counseling and screening tests. In contrast to office visits for acute illness, specific evidence-based preventive strategies, or chronic care management, such as treatment of high blood pressure, regularly scheduled general health checks without a specific cause including the ‘health maintenance’ annual visit, have not shown to be effective in reducing morbidity, mortality or hospitalization, while creating a potential for harm from unnecessary testing.”

And yet, while Ofri considers her own actions to be bad habits, I consider them good critical thinking—and good instincts. I believe this “bad habit” is really related to a deep understanding she has of the doctor-patient relationship—an understanding not reflected in the guideline.

While this guideline (and the many others that accompany it) is well-intentioned and an important step toward making us all wiser doctors and patients, it’s also important to think critically about it.

The guideline is based on scientific studies of populations and the population effect on reducing morbidity, mortality and hospitalization, but it doesn’t take into consideration other studies that have documented the eroding trust in physicians, as well as the studies that document the morbidity increases resulting from lifestyle diseases.

I find it difficult to separate these two issues. Patients must trust their doctors if they are to follow doctors’ advice concerning lifestyle, as well as the more immediate advice doctors give suggesting diagnostics and therapeutics. If patients are going to take medications as they were meant to be taken or undergo a diagnostic test that will ultimately help them better, they must have a relationship with the physician built on trust. That kind of relationship only happens when the doctor gets to know the patient as a person—not just his or her physiology and health risks—and that requires regular contact between a doctor and an individual.    

In today’s world, it is more important than ever to think about what happens outside of the doctor’s office as well as what happens inside it. Before the person ever sees the doctor, how does he or she decide whether to go in the first place? It often depends on how much trust a person has in that doctor—and how much value he or she thinks the visit will offer. In an absence of trust, a person may not even go to the visit—and miss an opportunity for early treatment.  Or, when that person leaves the office, will he or she act on the physician’s advice?  What if the physician wants to try “watchful waiting,” which requires a great deal of patience and confidence in that guidance?

We should ask ourselves if the guideline’s goal should also be related to trust. Shouldn’t trust be at least as important as the epidemiology of a borderline cholesterol level? Perhaps the real benefit is not just in treating that borderline cholesterol, but comes home to roost 1 or 2 years later, when—in an urgent situation—the person actually calls the doctor he or she trusts.

Many years ago, I ran a nutritional support service and made regular home visits to the patients we treated. I found I learned the truth about what patients were really doing when I went to their homes. I learned about the real-life barriers that prevented them from following the advice I gave. I formed a bond with them that was related to my willingness to meet them where they were, not just emotionally, but physically.

In healthcare, we are beginning to recognize the importance of shared decision- making—in which the doctor and the patient jointly decide the best course of action. This can only occur with trust. It only occurs when the doctor knows the person, and not only the patient. It only occurs when the patient believes the doctor has his or her best interest at heart--and not the best interest of the health system they work for, the government, or even society as a whole--no matter how “noble” that may seem from a population perspective.  

Perhaps we could modify the Choosing Wisely guideline so that we avoid lab tests at those yearly visits, but maintain the yearly visit itself to help maintain the bond? Perhaps it should even be a yearly home visit (although I suspect that would not be warmly received by most doctors or health policy people) to really see all that the patient and the family unit has to deal with in order to try and stay healthy?  A modification in the guideline that fostered trust and relationship building could result in better care and even more cost savings.

I applaud Dr. Ofri’s instinct to follow her own path, rather than following the guideline in this case. Her voice will help SGIM and all those involved in setting guidelines better understand that healthcare needs trusting relationships as much as it needs science and epidemiology. I hope that she continues to use the critical thinking skills that are reflected in so much of her writing to build trust and motivate patients so they call when they are in need--and follow the sage advice I am sure Dr. Ofri gives.

Trust, Small Decisions, and Improving Health Care

Our lives are built on trust in others. We trust that the person in the car stopped by the red light will not suddenly hit the accelerator and run us over as we cross the street. We trust that the people upon whom we depend, whether they are family members, doctors, grocers, or plumbers, will do their jobs and meet their responsibilities in such a way to help us stay healthy, fed and safe. However, in an increasingly impersonal world, can we still trust? Can we depend on the right things happening, when we don’t know the nurse, the doctor, the plumber and the grocer?

I grew up the son of an immigrant who owned a small “mom-and-pop” grocery store in New York City. My father knew each of his customers, would physically give them the food, and would understand when they couldn’t pay at that moment in time and would try to help them. I vividly remember seeing lists of names—on the backs of envelopes and scraps of paper in the store—of people who owed money from when they needed food and couldn’t pay for it. My father felt he had a responsibility to his customers who needed the food; the fact that they couldn’t pay at that moment, he reasoned, should not stop them from having that food. There was no interest paid or collection agencies. There was simply trust. Sometimes, I would deliver the food to people’s homes when they could not leave the house because they were old or infirm. As a child, I was sometimes a little frightened going into strangers’ apartments in areas of New York that others would consider dangerous. Yet that, too, grew out of my father’s sense of responsibility—and the trust between my father and the people who needed the food.

So what does all this have to do with health decisions? Health is not only about what doctors, hospitals, or any healthcare providers decide. It is about the small decisions people make every day in thousands of ways, big and small. Here at Accolade, we tried to estimate the number of health decisions individuals make every year. We started with claims, as each claim represents a medical service that results from a decision. We added in over-the-counter medication use, gym use, and other “everyday” activities. We left out the decisions around food purchases--even though as a grocer’s son and a physician who is board certified in clinical nutrition, I believe food purchases to be among the most important health decisions. We also left out the decisions we all make around everyday activity, such as whether we park our car in a place far from our office entrance or as close as we can to avoid a long walk. The result: We estimated that the average person makes more than 2,500 health decisions a year. It is, admittedly, a poor estimate-- probably underestimating by a large factor; it also reflects the average person, not necessarily the sick person.

How are all these big and little decisions related to trust? If you want to improve healthcare decision-making, you have to be able to influence those thousands of small decisions—which means you must build trust with the decision-makers, who may or may not be the patient. In many families, the wife and mother is the main decision-maker for the family. It also means that health systems and health policy must support and facilitate good decisions by people even when those decisions are small, whether they are healthy or sick.

Let’s examine nutrition as an example. A recent Health Affairs article about nutrition highlighted the health consequences of an industrialized food industry that processes food—sometimes to increase affordability, sometimes to increase shelf life, and ultimately leads to obesity which leads to disease. Written by two former Secretaries of Agriculture, Dan Glickman and Ann Veneman, the article states:

“On the one hand, with obesity-related health costs rapidly rising, the federal government has encouraged people to make healthy dietary choices through efforts such as Let’s Move! and MyPlate. On the other hand, the federal government spends billions of dollars on traditional agricultural commodity programs that fail to reinforce the kind of healthy dietary choices outlined in federal dietary guidelines.”

This article was published at about the same time Sequoia Capital invested in a rapidly growing start-up company, Good Eggs.  Good Eggs is making locally sourced healthier food more available, offering a communication platform and delivery service for consumers with the farmers, bakers, and other food providers that is personal and easy. (Full disclosure: My son Rob Spiro is co-founder and CEO of Good Eggs; my goal is to someday bag and deliver groceries for them so I can go full circle from my youth.)

Good Eggs realizes that the answer is less about programs and more about fostering a personal system in which the local person who advises people and helps them is right there, helping them make better decisions. We need to replace the emphasis on an industrial system that is focused on large production and bulk delivery. We need to foster a trust based on the fact that you know the person who produces your food, that they know you and that you each have the other’s best interests in mind. You meet your local farmer on Good Eggs, can speak to him or her and end up eating healthier foods as a result of that personal trust. This trust, simplification and facilitation of smart, small decisions leads to better eating, lower rates of obesity and lower healthcare costs than any forced weight loss program. It is really about trust and people-to-people communication.

Technology can help facilitate this communication, but can never be the only answer. The folks at Good Eggs have found that they had to use creative and imaginative apps and technology, but that they also had to deliver the food and actually “touch” their customers, person to person. Bryan Shreier from Sequoia Capital in an article linked here talks about the need for tech firms to embrace operations and not assume the tech alone will be the answer. He uses the examples of Good Eggs, as well as Uber, the limousine service, as companies using technology to simplify and personalize a human interaction.

In healthcare, specifically, that need to facilitate the person-to-person interaction, which leads to better decision-making and better health and sickness care is even more urgent—and is our approach at Accolade.

Unfortunately, the health technology industry often seems to only focus on the "big data" and the “apps.” In an article in Fortune Magazine entitled, “Health Apps Don’t Save People, People Do,”, Ryan Bradley reviews a number of studies that show, when it comes to the treatment of obesity and diabetes, apps alone--no matter how enticing and technologically simple--are never as effective as person-to-person interactions. Bringing people together with each other and with educators and professionals on a regular basis positively influences their decision-making, and ultimately, their activities and the choices they make.

At Accolade, we see that every day in the small decisions that our Health Assistants help people make as they live their lives. The people we serve are trying to make a living, feed their families, and choose what to do about their ailments and lifestyle. No matter how big or small those choices are, the answer always lies in the trust and help we give each other. That social interaction gives strength to our fellow  human being, helps them through tough times, shares and celebrates good times—and creates the positive decisions and outcomes that bring better health and better life to people. While we use "big data" and "apps", ultimately we know that Angry Birds alone can’t do that. We know that technology can only be the answer when it is facilitating human interactions. 

Laura's Story

Recently, Laura Stout, a Health Assistant I work with at Accolade shared a story with me that has been passed down in her family.   I share it here exactly as she shared it with me, with her permission of course. 

“I have an interesting story about my Great Grandmother… 

She was working on the Family farm and had a serious farming accident during harvest.  A corn stalk punctured her lower leg and continued through her leg until it reached her knee.  She was 26 years old and had two kids under the age of five years old and a dairy farm to sustain.This wound was enormous and became infected which considering what they use as fertilizer, is no surprise. 

The shocking part of the story is that due to the “blood poisoning” caused by the infection in her injury, the small town doctor gave my great grandmother two options for treatment, “You can have your entire leg amputated, or you can die”.   

Well, this seems like an obvious course of treatment in the pre-antibiotic era, but what was not considered is that for a Mennonite woman in rural PA working a dairy farm and raising a young family, the loss of her entire leg was a worse option than death itself.  So, she said… give me death…. 

Well, my Great Grandfather was not as on board with this as an option, so he took my Great Grandmother from her “death bed,” to an Indian Medicine man who made a wash using unknown ingredients (in the story it was some type of ash water) and instructed her to rinse her leg day and night changing its wrap continuously.  

Long story short… My Grandmother was her fourth child.  My Grandmother talks about reaching up her Mother’s leg and feeling the scar and hearing the story as a warning during the harvest every year.”

This is a wonderful parable that illustrates a number of universal truths that we in health care see every day. 

• ·      Every family has their own stories, their own “mythology” that helps define the family’s values, beliefs and strengths.  Those stories help pass on from generation to generation core aspects of that family’s approach to health, illness, adversity and life itself.  Whenever you work in a helping field, the ability to have a person share their family story is extremely valuable in enhancing the professional’s ability to help that person and their family.
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•       Based on a person’s values, death may not be the most negative outcome.  In this story, the thought of being an added burden for the family that needed her was worse than death for Laura’s great-grandmother.  When health professionals help others, they have to understand that there are certain things that may be more important than health such as caring for a family and being true to one’s beliefs and values. 

• ·      Everyone can be totally open, and be totally correct and yet be incomplete in their “truth”.  Thus the country doctor was absolutely correct from his training and perspective that the only choices were amputation or death.  The medicine man’s knowledge of what were certainly antibacterial substances was unknown to the doctor and therefore the doctor’s knowledge was incomplete.  Even in today’s advanced medical world, an expert in a narrow area of medicine can easily miss options that are available outside of his or her area of expertise. 
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•       Lastly the power of a narrative, a story used to communicate, should be strongly valued.  We are truly fortunate to have narratives before us daily and we should always strive to capture them, learn from them and use them to teach others.  

Disease, Illness and Suffering

Health policy tends to focus on population issues such as costs, access, and outcomes and in recent times has developed strong interest in evidence based medicine, changing behavior within communities, insurance exchanges, and encouraging consumerism.  These are all important concerns however I fear we all lose when we focus too much on the policy and not enough on what that policy means to the individual in need.  We may be missing critical components of the nature of disease, illness and suffering as we push to redefine patients as consumers of health care services in order to lower costs and broaden access.  While those policy efforts bring benefits, they also have the potential to harm individual patients and their families.  For me as a physician and for most health professionals, patients are more than consumers and illness and suffering are more than the biology of disease.  For clarity, we need to define disease, illness and suffering.  

• Disease: Any impairment of normal physiological function affecting all or part of an organism, especially a specific pathological change caused by infection, stress, etc., producing characteristic symptoms. 
• Illness: The experience of a person who has a disease including the psychological, the social, the financial and the spiritual.  Different people experience diseases differently and that difference makes illness unique for each person. 
• Suffering: The feeling of pain, loss, fear, loneliness, stress and even spiritual angst that can be associated with disease and illness however may also be present in the absence of any biological stress. 

These distinctions are important for individuals and for policy.  People want to be understood as unique and autonomous when they are in a time of need.  Evidence based medicine which is solely focused on the physiology of the disease may not fit the experience of the illness they have and they feel.  An evidence based disease protocol that calls for medications that are too expensive for a particular patient or for advanced diagnostics that are not available in a certain community and requires travel and time away from work and family do not fit the patient’s illness which is their reality of the disease.

 

Recently at Accolade, we assisted a woman who has a disease called pseudotumor cerebri.  She lives in an area in which the best physicians and facilities to treat her disease are about four hours away by car at a renowned academic medical center. We had originally helped arrange for her initial care at that academic center.   The reality of her illness, as opposed to her disease, includes the fact that she cannot drive four hours and her husband cannot take time off to drive her as he is at risk of losing his job if he takes more time off of work.  So she will not go back to that academic center even though she had her initial successful treatment there.  We are now helping her get the best possible care for her disease and her illness closer to home by marshaling local resources for her.   The risk of receiving care that is potentially not as good as the care at that academic medical center is worth it to her to maintain her way of life and to avoid further work stress for her husband.  We are helping her with her illness not only her disease. 

In health care and in health policy, we tend to focus on suffering in situations in which someone has a terminal disease that is beyond our abilities to cure however suffering is seen in any number of illnesses and even in the absence of an illness.  A person who has lost a job and cannot care for their family is suffering without an illness.  We recently had the occasion to help a woman whose husband died after he saved her from a riptide when they were swimming in the ocean.  That woman was not sick but was profoundly suffering.  On her third call with an Accolade Health Assistant, this woman spent time crying with her Health Assistant and grieving at her great loss.  She needed someone she trusted to just listen and be that shoulder to cry on.  She needed someone to be with her through her suffering.  

I think about these cases because we cannot “fix” healthcare, making it affordable and accessible until we acknowledge and address illness and suffering and not only disease.  That means realizing what is important to families and not only the important biological facts.  Daniel Sulmasy, a Franciscan monk and a physician who is on the faculty of the University of Chicago Medical School and the University  of Chicago Divinity School has written eloquently for years about the need for patients' illnesses and suffering to be recognized and “treated” as effectively and diligently as their disease. 

In his books, Sulmasy points out that the role of a health professional is not merely to cure and treat disease, but to address illness, and perhaps most of all to relieve suffering.  He points out, “the need for medical care is not like the need for automobile repairs or a haircut”.  He quotes Robert Sokolowski, the eminent Catholic theologian and professor of Philosophy as saying, “The medical need is special not because my body is at issue but because I am at issue.” 

Sulamsy writes, “They (People) want a form of medicine that can heal them in body and soul.”  “They seek a form of medicine that treats them as persons – a form of medicine that acknowledges what science cannot see or hear or accomplish.”  He goes on to say in describing the limitations of purely science based medicine, “Patients came to feel like scientific specimens rather than human beings.  Iatrogenic (illnesses caused by medical practice) grew steadily more prominent with every scientific success.  Some side effects have been even more social than biophysical…..The solutions to these problems…have been diagnostic of its affliction – more nursing homes, more neonatal intensive care units….Empathy and mutual acceptance of the frailty of our common humanity have come to be considered anachronistic.” 

Sulmasy knows that the pain of being alone when you are sick is not eased by having an MRI.  The suffering of something as simple and “minor” as an upper respiratory viral infection is not eased by antibiotics that won’t cure a virus but will make it feel as though someone cares enough to take action.  We need more caring and less unnecessary testing and medications.  We need more caring and fewer interventions that do not contribute to improvement in life.  We need more treatment of the illness and easing of the suffering while we treat the disease. 

The irony is that modern health policy, by focusing only on disease increases costs as people try to find solace and understanding through the lab and the pharmacy.  It is only by caring for people through their illnesses and their suffering that we can achieve true savings as people stop trying to find answers and solutions where none exist.  To paraphrase Professor Robert Sokolowski, we must always keep sight of the person, the “I” and not only the body.

What is “Best” Care and How is it Determined

In medicine, randomized controlled studies have long been the gold standard in defining the “best” care. In these types of studies, usually two large groups of patients, the larger the better, receive the same care except for one intervention that is different for each group and the results are compared. This defines the best care medical science has to offer. No one disputes the usefulness of these types of studies, however, are they enough? Do they really tell us all we need to know about the care of an individual? 

A recent article in the journal “Medical Decision Making” by Bruce Barrett M.D. entitled Sufficiently Important Difference: Concepts, Caveats, and Challenges questions whether our approach to using and interpreting these studies is adequate. The article looks at randomized controlled studies and the facts that they define in light of a new reality in health care. The new reality is that the value from the patient’s point of view is the key factor that must be taken into consideration when doctors and patients make decisions about care. That patient point of view has rarely been used as an end point in randomized controlled studies and the evidence based medicine that results. Dr. Barrett defines this focus on value from the patient’s point of view for clinical research design purposes as the “sufficiently important difference” (SID) or the “smallest worthwhile effect” which he defines as “the smallest amount of patient-valued benefit that an intervention would require to justify associated costs, risks and other harms.” He then adds, “SID is understood in the context of existing evidence and is measured at the individual level.” Measuring at the individual level is earthshaking for clinical researchers and for those who apply clinical research to the practice of medicine because when randomized controlled studies are done, the gold standard for results is always population based. While individual decisions must be informed by population statistics, the real impact of a particular intervention on an individual may not perfectly fit a population fact found by study. By telling us that the way to do clinical research is by measuring at the individual level and that it be “patient-valued” Dr. Barrett is telling us that we have to look anew at the outcomes of studies and as a result, many of our favorite “facts” and “goals” in population health and in the diagnosis and treatment of disease. A recent case in the news illustrates this point. As I write this an 11 year old girl is going home from the hospital after receiving a double lung transplant. The standard of care based on population evidence and expert consensus is that this lung transplant should not have been allowed to happen since this child was considered too young to receive adult lungs. A persistent legal and public relations fight by her parents forced the circumvention of this rule and this child is going home now with new lungs. The population facts were not disproved and remain helpful; they just did not perfectly apply to this young girl.

Dr. Barrett in this article points out that evidence based decisions, which are usually based on randomized controlled studies are not perfect in their design and suffer from their own limitations including “1) difficulties in forecasting individual outcomes from observed group effects; 2) the fact that negative outcomes are underassessed and underrepresented; and 3) the high degree of variability in how individuals value and weigh various positive and negative outcomes.” 

He does not say this in a policy journal or in a popular magazine. He makes these statements in a journal that only a statistician can really love. The science of medical decision making and the articles written in this journal are more geared to statistical researchers than to clinicians. In this same issue, there is an article entitled, “Development of a Framework for Cohort Simulation in Cost-Effectiveness Analyses Using a Multistep Ordinary Differential Equation Solver Algorithm in R”. For the journal Medical Decision Making, that is a relatively common type of title. I mention that only to make the point that Dr. Barrett is making these pronouncements as a way to improve analytics and as someone who believes in scientific and even mathematical approaches rather than as a moral argument. 

However he does realize that there is a moral dimension to his argument. After making a convincing case that “Patient-oriented evidence that matters (POEM) is superior to disease-oriented evidence (DOE), such as biomarkers or surrogate markers” on analytic grounds he goes on to say,

“Given this background, I would hazard the contention that the current system may to some extent be both unethical and irrational. Difficult questions must be asked: Is it rational to implicitly value benefits more than comparable harms? Should we continue to design and interpret trials based on benefit effect size only, ignoring harms? Is it ethical to take decision making away from individuals (guided by their clinicians) and to instead give that power to medical scientists, insurance companies, technocrats, and policy makers who set guidelines and formularies that determine care? I don’t believe that any of these questions should be answered in the affirmative.”

Thus he defines the challenge to the good, ethical clinical researcher and to the practitioner trying to follow evidence based medicine and best medical care. The challenge is at the least, to interpret randomized controlled studies with outcomes that are defined by patient values not only population metrics. It may mean moving to a whole new paradigm of clinical study that builds upon randomized controlled studies in new ways to measure these important patient-oriented outcomes that matter. He argues that until we understand how individuals value various benefits and harms we cannot really say what the best course is for a patient who is ill. For the practitioner that means knowing who your patient is as a person and not only knowing the biology of their disease. Ultimately, his scholarly analytic approach supports the contention that each individual is unique and autonomous with his or her own values that must be supported and respected.