A Systems Engineer Gets Sick

An excellent “A Piece of My Mind” article in the Journal of the American Medical Association entitled, “A Systems Engineer Meets the System”by David H. Gustafson, PhD is a reminder that while systems are important, people caring for people remains the key to good clinical outcomes.

Dr. Gustafson starts out his article by identifying himself as a systems engineer, whose life work has been, and remains, organizational change and quality improvement in health care.  He then describes his own experience as a patient with severe heart disease and his ongoing medical journey that includes a new heart courtesy of a heart transplant.  He identifies four elements of great care:

Commitment to Greatness: The health care professionals caring for him all did not just consider health care to be a job but instead brought energy and commitment to his care that went beyond work hours and normal work protocols.  They were driven by a mission for excellence that could overcome whatever obstacles arose. 

Ownership: The excellent medical teams that helped him all had a sense that whatever happened to him was their responsibility.  As he phrased it, “…, I knew the staff “owned” me.  I wouldn't be passed along somewhere else.”

 

Advocacy: Dr. Gustafson’s wife was with him constantly and she was always supported by a friend, only a phone call away, who is a physician.  His wife acted as his bodyguard, watching everything that was done, and his voice in issues as small as the cleanliness of his room and as large as the need for invasive tests.  The friend supported his wife and acted when needed as a “boundary spanner”.  He was there to remove barriers (as we say at Accolade) when they arose as they often do in health care and to coach Dr. Gustafson's wife. 

Caring: Dr. Gustafson puts it this way, “Caring means commitment, but it also includes having fun; being friendly; and getting to know other people as human beings and not just as clinicians, patients, housekeepers or administrators.”    All of us want to be seen and heard as individual human beings with our own thoughts, relationships, needs and values and must be recognized as such for true caring to occur. 

At Accolade we have built an organization and a profession whose main role is to act as the “boundary spanner” and the “advocate” and ultimately, the overall Health Assistant for every issue that has to do with accessing the best health care at times of need.  We put principles of “ownership” and “caring” into all of our client relationships.  By doing so, we improve care and this decreases risk to the individual patient and waste in the entire health care system.  

A Hospital is a Dangerous Place

The latest New England Journal of Medicine includes the description by Dr. Harlan Krumholz of a new disease: Post Hospital Syndrome.  In the article entitled, “Post-HospitalSyndrome – An Acquired, Transient Condition of Generalized Risk”, he notes clearly and concisely what most people in medicine have always believed but never voiced in this manner.  Just being in the hospital makes you sick. 

As he states it, “Patients who were recently hospitalized are not only recovering from their acute illness; they also experience a period of generalized risk for a range of adverse health events.”  To put it simply, the experience of being in the hospital puts you at risk for a virtual cornucopia of illnesses that often are totally unrelated to the reason you were admitted to the hospital in the first place.  He backs up this contention by reviewing the reasons that people are readmitted after Heart Failure, Pneumonia, COPD and Gastrointestinal problems.  It turns out that most of the time readmission is for causes other than those diagnoses that drove the need for hospitalization in the first place.  This chart from Dr. Krunholz’s article makes that vividly clear. 

When people are in the hospital, we, that is the health professionals who care for them, deprive them of sleep, disrupt their sleep and wake rhythms, often do not feed them in preparation for tests and procedures, create pain by poking them and prodding them, confuse them, give them medications which all have side effects, and keep them in bed which results in deconditioning their muscles.  Then we send them home saying “You are better”.  Numerous studies have shown that people who lose weight in the hospital are more likely to be readmitted.  At least part of that weight loss is related to the poor nutrition and the muscle depletion that comes from lying in bed. 

When we send them home, it is often with little coordination between the care givers in the hospital and those in the community, such as the primary care physician.  “Improvements” in health care delivery, such as the use of hospitalists, has fragmented care and impaired our ability to help peole through the transition from hospital to home.  The old saying that people are sent home “sicker and quicker” is often true and contributes to this “Post-Hospital Syndrome”. 

They are also sent home confused as the sleep disorders beget sleeping pills and the pain begets pain pills.  We then send people home either on the pills, some of which may be unnecessary when they are in their own beds without IVs sticking out of their arms, or on too few pills so they are racked with pain and fear despite having been “fixed” in the hospital.  Then we wonder why they have to be readmitted for the confusion and for mental status changes.

 

So what is my advice for patients and their families?

• Be a demanding patient in the hospital.  Do not meekly accept being awoken in the middle of the night, or being in a room in which there is noise and distraction.  Ask why being disturbed while asleep is necessary and what alternative plan can the doctors and nurses devise. 
• Do not meekly accept being starved.  If you are made NPO (nothing by mouth) prior to some test, specifically ask why and how long before you can eat.  After a test demand being brought food even if it is not the scheduled time for the floor. 
• Question everything.  What are these medications for, what is the blood test for, and why is that CT scan being done must be questions to ask constantly.
• If you are strong enough, get up and walk.  If you are not strong enough, aks a nurse to get you into a chair and to help you walk.
• If you are well enough, get dressed.  (Staff in the hospital will see you with more respect and as more “human” rather than the patient in room 3.)
• Have a bodyguard.  Have someone you know and trust, like a family member, stay with you as much as possible to help you and to advocate for you.  They should be coached beforehand so that they are assertive on your behalf. 
• Have an assistant or an advocate available by telephone.  This should be someone who understands the health care system and can help you be assertive and help you know the right questions to ask at the right times.  Your on-site “bodyguard” (see the previous bullet point) may not be enough of an expert to fill that role.
• When you go home, insist that the nurses and doctors call and report to the doctor who will be caring for you as an outpatient.  It is even better if you can be part of the call and listen in.  The transfer of the knowledge of your hospital stay is critical to your health. 
• Insist on taking copies of your records home with you.  Even in this day of electronic medical records, the staff can print out records for you to take with you. 

Finally the best way to avoid Post-Hospital Syndrome is to avoid going into the hospital in the first place.  While a hospital stay is sometimes unavoidable and can be lifesaving, it is also risky and can leave you sick in ways that are totally different than your reason for going in.   

Who's in Charge Here?

This week’s issue of the New England Journal of Medicine has two “Perspective” pieces having to do with decision making and the difficulties that modern medical advances and modern health policy advances have inadvertently created.  I read these and can only think of the immortal words of Oliver Hardy talking to Stan Laurel saying, “Well, here’s another fine mess you’ve gotten me into”.  In our zeal for ever more expertise that comes with medical specialization and for ever more organization for our unorganized system, have we created a “fine mess”?   Are we losing the ability to help our patients make choices that are consistent with their own values and in keeping with the best medical knowledge?

The article by Stavert and Lott entitled, “The BystanderEffect in Medical Care” accurately compares the problem of having multiple specialists to the bystander effect which is the human tendency to be less likely to offer help in emergency situations when other people are present.  Poor communication and coordination between medical professionals can lead to each physician only being focused on the specific disease they are involved in treating and not the entire patient.  The old concept of the primary care doctor being the “captain of the ship” has given way to primary care doctors who no longer even enter the hospital and leave that care to the hospitalists, intensivists, and other specialists.  For complex outpatients, the primary care role can quickly devolve into a triage role.  The specialists who are focused on their small piece of the puzzle often don’t truly coordinate with the primary care physician.  The primary care physician is so busy just seeing patients that the coordination and the compilation of the facts and opinions gleaned from the specialists often never happens.   Even if the coordination happens, it is then never communicated to the patient and the family.  The authors suggest mechanisms to improve communication between individuals’ clinicians by supporting initiatives such as the TeamSTEPPS (Team Strategies and Tools to Enhance Performance and Patient Safety), an initiative developed by the US Agency for Healthcare Research and Quality.

The article by Oshima and Emanuel entitled, “Shared Decision Making to Improve Care and Reduce Costs” points out that the Affordable Care Act (ACA) calls for greater use of shared decision making in health care and that the implementation of that part of the law has stalled.  They call for more use of decision aids and more use of incentive payments to encourage providers to better use those decision aids and for funding the development of better shared decision making tools.  They make the strong argument that a good starting point is to begin with are the 20 most frequently performed procedures and to require the use of decision aids for those procedures.  They further argue that full Medicare and Medicaid reimbursement should be contingent upon those decision aids being used. 

I find myself reading all of this and agreeing with the analysis but wondering at the same time, if the cures for the two diseases of “bystander” effect and lack of shared decision making are leading us into a morass of forms, requirements and process that will do little to really solve the problems.  The bystander effect, while suggesting the need for better teamwork still requires a single person who feels ownership of all of the patient problems.  Traditionally that single person has been the primary care doctor.  But putting more pressure on the primary care doctor to do all that coordination, compilation of results and opinions, and communication is hard to reconcile with the challenges of primary care practice.  The primary care physician still has to evaluate, diagnose and treat while seeing more and more patients and having less time with each patient.  I, like others, hope the medical home initiatives and the ACO movement brings incremental improvement but for me and my family, I also hope that I always have one person I trust who will be by my side whatever my problem or problems may be.  That person may or may not be the doctor.  In our system at Accolade, we have developed a new profession; that of Health Assistant, who communicates, educates, coordinates and advocates while not diagnosing or treating.  They take the time to be the one person at the patient and the family’s side during the duress of illness.

While decision aids may be necessary for better shared decision making they are in no ways sufficient (and the authors do not suggest that they are sufficient).  Many patients and their families just do not have the skills to use those resources most effectively.  They are often riddled with the anxiety and depression that comes with illness that prevents good use of such tools.  They often have real barriers that have to do with family, financial and work concerns among other types of “non-medical” issues that prevents them from making the best choices.  I wonder if requiring a provider to hand someone a booklet or asking a patient to watch an interactive video will make all the difference.  I have my doubts even as I acknowledge that these tools are useful when used together with other communication and support techniques. 

In this mix, we need more humanity.  We need more caring.  While more tools and systems certainly will help, I doubt that they are the whole or even the most important parts of the answers we seek. 

Human Challenges and Autonomy

There was a commonality in two seemingly disparate articles in this week’s Journal of the American Medical Association (JAMA).   One article was about falls as “never events” in the elderly and one was a moving personal reflection by a physician about her mother’s illness.  For me, both spoke to the human need for autonomy and the also human need to be challenged to do better at any age.

Dr. Maria Maldonado, in her article entitled, “Warning Shot”, gives a first person account of her mother being told that her brain cancer has returned.  She talks about her mother having reached a stage of acceptance of her disease and prognosis that she, as the daughter, had not. Dr. Maldonado relates all this in the context of going, the next day, to teach medical interns about “breaking bad news” to patients and their families.  She finds herself thinking about how well her mother’s oncologist had done it.  “Bravo Doctor.  You knocked it out of the ballpark.  You took care of my mother.  You took care of me.”  She closes the article with her mother worried more about her daughter and her daughter’s sadness rather than her own impeding decline and ultimate death. 

“My mother asks me, “How do you feel?”  Shoring us up.  Worrying over us.  Loving us.  “Sad,” I say.  She looks out the car window.  I can tell she’s sad too in part because of that timeless way that mothers feel pain over their children’s unhappiness. “

Dr. Maldonado captures a woman who is in charge of herself and is focused on her children rather than on herself.  Her mother exudes independence and autonomy in her concerns.  She, the dying mother, is the one caring for her physician daughter.  Dr. Maldonado’s mother does not need her daughter to make her decisions or to treat her as a child.  Her mother is still the mother caring for her child. 

That image stayed with me as I turned to the article entitled, “Measure, Promote, and Reward Mobility to Prevent Falls in Older Patients” by Drs. Samir Sinha and Allan Detsky.  In the article they point out that in our zeal to try and prevent falls in the elderly when they are inpatients, we may actually be making their health worse!  The current National Quality Forum lists of “never events” which are defined as events which should never happen include patient falls.  However protocols that are focused on preventing falls can tend to keep people in bed far too much leading to poor recovery from surgery, muscle atrophy, decubitus ulcers, and pulmonary embolus.  The federal government through CMS is implementing policies that will deny hospitals payment for such “never events” thus potentially encouraging decreased patient mobility even more.    

The authors of this article openly fear that this emphasis on fall prevention with non-payment of hospitals for falls will lead to what they call an “epidemic of immobility” as an unintended and harmful consequence.  There is no question that if you stress mobility and advance programs of early and active mobility, you increase the risk of falls.  There is also no question that health professionals will tell you that often people who are sick and compromised just want to stay in bed and have to be pushed and motivated to move.  But people need a little friendly push every now and then, even if they are elderly and infirm.  People need to be given a responsibility for their own well-being.  That also improves their psychological state and their belief in their own abilities.  As is true for just about everything in medicine, the risks and the benefits always must be balanced but focusing only on fall prevention, ignores the great risk of immobility and dependency. 

Potentially, hospitals can avoid falls by limiting mobility through physical or pharmaceutical restraint.   That is antithetical to independence and autonomy.  Thus the risk of avoiding a fall should be considered as well as the risk of falling.  That should include the risks of harm from those restraints and those medications.  The risk of avoiding the fall should include the risk of robbing someone of their autonomy and their potential for independence even if that independence will never be complete. 

Autonomy and independence often require pushing oneself and pushing those you care about and care for.  For people at risk of falling, that means doing all you can to get them mobile in as safe a fashion as possible.  For Dr. Maldonado’s mother, it meant pushing her daughter, the physician and the expert is communicating “bad” news to patients to accept the brain cancer diagnosis. 

At an early part of my career, I sat on a committee that was involved in preparing a report to Congress as part of the development of the Americans with Disabilities Act that was passed in 1990 (obviously I did this as a mere child).  Our charge was to try and comment on aspects of the draft legislation that had to do with insurability and benefits coverage.  On that committee were also representatives of patient advocacy groups including one gentleman who was a double amputee.  He spoke forcefully about his independence and the fact that he was healthy, he just had no legs.  It angered him that he had to get his wheelchair through a doctor and through his health coverage as that labeled him as sick.  His argument was the wheelchair should come through the Department of Transportation because that is what it was to him: transportation.  He wanted to be seen as an individual and not as a double amputee who needed help.  

We all have something to give at every stage of our lives but in order to give we have to be independent.  We have to have our own dignity.  Health care and health care decision making has to foster that independence and that personal responsibility so that a mother can remain a mother even when her daughter is a trained adult physician and so a person can try to walk even if they are in danger of falling. 

A Great Man

I see greatness every day.  That may seem strange but greatness to me is obvious in our lives and our society.  I am really fortunate because I get to see greatness in my work. The people our Health Assistants help are people who struggle to make ends meet, who live paycheck to paycheck, who work hard, and who do so in the face of illness, sick children, difficult work situations, and sometimes well-intentioned but misguided rules and regulations which just make things harder for them.  In response they still take care of their families, live their lives, and get up every morning to go to work.  That is greatness.  I see our Health Assistants really fighting for those people, crying with them, and encouraging them on a daily basis.  Those Health Assistants show greatness.  It is simple to see and it is all around us.    

This week I said goodbye to a man who personified greatness.  My wife and I have been friends with Dr. Wendy Bell and her family since Wendy and Rhonda were interns together.  They became “sisters from different mothers” as Wendy likes to say and through Wendy, I got to know her father, Mr. Clarence Crutchfield.  I had the honor of being at his funeral yesterday.   Mr. Crutchfield grew up in the segregated South at a time when it was hard for a young Black man to get ahead.  He joined the segregated Navy to serve his country in the midst of World War II and served on a ship in the Pacific as a signalman.  He then went to Tennessee State University, became a high school physical education teacher and coach, and married.  When his oldest child, Wendy, was five, he moved north to Detroit so his children could have better education opportunities and there he raised three daughters who became accomplished in their own professions.  At one point, he received his Masters in Counseling and went on to be a guidance counselor in the Detroit Public School system for 37 years.  He was a no nonsense guy who exuded dignity, respect and self-reliance and who believed in the importance of education and family above all else.  He stayed strong as the head of the family even after he retired and moved to Atlanta to be close to his daughters and his grandchildren.  Every year, when Rhonda and I would go to Wendy’s house for Christmas dinner, he was always at the head of the table, leading the opening prayer, and being the rock, the foundation, of a family that was anchored in faith and love.  That is greatness.  He took care of business.  He took care of his family.  He was strong in the face of adversity.  He was a man who would not be obsequious to anyone and for whom complaining was never an option.  That is greatness.  I truly loved that man and admired him tremendously.  He was a man who really would judge someone on the content of their character and not the color of their skin.  When he was at his granddaughter’s wedding and she was marrying Eric who is extremely fair skinned with red hair, he was thrilled and said to me, and to anyone else who was listening, that the world had really changed.  There was no one happier than he was.  He never stayed in old paradigms and rather recognized that the world does change and sometimes even for the better.  That is greatness.    

When I think of him, I think of the old parable that is sometimes called “The Rabbi’s Gift” and sometimes called “The Messiah Among Us”.  I tried to find the source of the story and could not.  I first found it referenced in a book entitled “Deep Down Things: Selected Writings by Richard McCullen CM written in 1995.  Father McCullen was the Superior General of the Congregation of the Mission which is the organization of priests and brothers who follow St. Vincent and are often called the Vincentians.  I first read the story in “The Art of Possibility” by Benjamin Zander but it was M. Scott Peck in his book, “The Different Drum”, who is usually given the credit for popularizing the story. 

A monastery had fallen upon hard times. Once a great order, there were only five monks left in the decaying house: the abbot and four others, all over seventy in age. Clearly it was a dying order.

In the deep woods surrounding the monastery there was a little hut that a rabbi from a nearby town occasionally used as a retreat. On one occasion when the rabbi was in his hut, the abbot decided to go and speak with him and ask the rabbi if by some possible chance he could offer any advice that might save the monastery.

The rabbi welcomed the abbot at his hut. But when the abbot explained the purpose of his visit, the rabbi could only commiserate with him. “I know how it is,” he exclaimed. “The spirit has gone out of the people. It is the same in my town. Almost no one comes to the synagogue anymore.” So the old abbot and the old rabbi wept together. Then they read psalms together and quietly spoke of deep things. The time came when the abbot had to leave. They embraced each other. “It has been a wonderful thing that we should meet after all these years, “the abbot said, “but I have still failed in my purpose for coming here. Is there nothing you can tell me, no piece of advice you can give me that would help me save my dying order?”

“No, I am sorry,” the rabbi responded. “I have no advice to give. The only thing I can tell you is that the Messiah is one of you.”

When the abbot returned to the monastery his fellow monks gathered around him to ask, “Well what did the rabbi say?” “He couldn’t help,” the abbot answered. “We just wept and read psalms together. The only thing he did say, just as I was leaving –it was something cryptic– was that the Messiah is one of us. I don’t know what he meant.”

In the days and weeks and months that followed, the old monks pondered this and wondered whether there was any possible significance to the rabbi’s words. The Messiah is one of us? Could he possibly have meant one of us monks here at the monastery? If that’s the case, which one? Do you suppose he meant the abbot? Yes, if he meant anyone, he probably meant Father Abbot. He has been our leader for more than a generation. On the other hand, he might have meant Brother Thomas. Certainly Brother Thomas is a holy man. Everyone knows that Thomas is a man of light. Certainly he could not have meant Brother Elred! Elred gets crotchety at times. But come to think of it, even though he is a thorn in people’s sides, when you look back on it, Elred is virtually always right. Often very right. But surely not Brother Phillip. Phillip is so passive, a real nobody. But then, almost mysteriously, he has a gift for somehow always being there when you need him. He just magically appears by your side. Maybe Phillip is the Messiah. Of course the rabbi didn’t mean me. He couldn’t possibly have meant me. I’m just an ordinary person. Yet supposing he did? Suppose I am the Messiah? O God, not me!

As they contemplated in this manner, the old monks began to treat each other with extraordinary respect on the off chance that one among them might be the Messiah. And on the off-off chance that each monk himself might be the Messiah, they began to treat themselves with extraordinary respect.

Because the forest in which it was situated was beautiful, it so happened that people still occasionally came to visit the monastery to picnic on its tiny lawn, to wander along some of its paths, even now and then to go into the dilapidated chapel to meditate. As they did so, without even being conscious of it, they sensed the aura of extraordinary respect that now began to surround the five old monks and seemed to radiate out from them and permeate the atmosphere of the place. There was something strangely attractive, even compelling, about it. Hardly knowing why, they began to come back to the monastery more frequently to picnic, to play, to pray. They began to bring their friends to show them this special place. And their friends brought their friends.

Then it happened that some of the younger men who came to visit the monastery started to talk more and more with the old monks. After a while one asked if he could join them. Then another. And another. So within a few years the monastery had once again become a thriving order and, thanks to the rabbi’s gift, a vibrant center of light and spirituality in the realm.

Greatness is a gift given by those who radiate goodness and caring.  Greatness is all around us in the people we may least suspect.  Clarence Crutchfield was a model of greatness.  Greatness is in those who take care of their families, live their lives, and create light and hope for their children and for their community.  As our Health Assistants at Accolade help their clients, I know that they benefit from coming in contact with the greatness in those they speak with on a daily basis.  The challenge is recognizing the greatness in those people in the course of our work routines.  My hope for this season is that as Health Assistants we see, admire, and acknowledge the heroes we help.

When Tragedy Strikes Children

I sent this out to my team at Accolade following the horror at Newtown CT:

This past week, we all witnessed the horror of small children attacked and killed while they were in the safest place imaginable – their school.  We, in the business of caring, watched this with the rest of the world as it played out on our computer news feeds and on our television sets.  There is no way to make sense of this and I will not try.  I will, however share my thoughts on how we help the living following this crime.  How we focus on being the support that they may need through these horrific times. 

For all of us, the thoughts of our own children and our own families naturally come to mind.  I have three grandchildren in Connecticut and I could not help but think about how vulnerable they are.  My wife immediately took out a map to see how close Stamford, where they live, is to Newtown, the site of this atrocity.  We all needed to find ways to reassure ourselves about those we love, at the same time feeling a little guilty at our own relief as we thought of the parents and grandparents who would find no such reassurance as they learned that their own precious gifts were gone in the worst possible way. 

Here at Accolade, while we may seem far removed from this tragedy, we may be helping those in the media whose job it is to cover this story with sensitivity and care while trying to deal with the personal feelings and emotions the tragedy can invariably elicit in them.  We may have people we help who have lost children for which this episode brings memories that are too painful to bear.  We, ourselves may have our own histories and tragedies that this brings too clearly into focus.  Through all of our own personal prisms, we have to help. 

The first thing to realize as we try to help those who are affected is that there really is nothing we can do that is concrete to take away the horror.  We cannot go back in time and try to treat the lost soul who carried out this abomination.  We cannot go back and increase the security at that school to prevent his ability to get into the building.  We cannot position an alert police officer there who intervenes to save the day just before the tragedy as would probably happen in a television program.  We can, however, do what we do best.  We can listen.  We can empathize.  We can provide resources such as mental health professionals to help people though the immediate agony and the aftermath.  We can be there for those in need, sometimes just by quietly being with them, saying little but letting our presence be a small comfort for them. 

Rabbi Shaul Praver who was the Rabbi of the youngest victim, Noah Pozner, may have put it best when he was asked to give an explanation for such a horrific act.  He said, "I don't know the answer to that.  I never try to present a theological answer to that.  I think what's more important is to have compassion, humanity and hold someone's hand and hug them and cry with them."  

That is our role here at Accolade.  We are fortunate to have tremendous expertise in our own Accolade family as we try our best to help people deal with the aftermath.  Turn to the experts.  Ask for help.  Don't try to work through the pain alone.  We have to have compassion, humanity and to hold someone's hand, even over the telephone, and make our verbal hugs felt.  That will not be easy.  That effort will call upon us to feel emotions that are not pleasant or positive.  But that is what we must do for those affected.  It is what we do and there is no more important time to do it than in moments such as this.  

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Medical Options: Understanding the Shifting Sands of Expert Opinions

One of my favorite sections of the New England Journal of Medicine is the interactive on-line section entitled “Clinical Decisions”.  The section is organized as described in the journal:  “A case vignette is followed by specific options, none of which can be considered either correct or incorrect.  In short essays, experts in the field then argue for each of the options.”  Think about that:  “none of which can be considered either correct or incorrect”.

I love this section because so much of what is written about medicine presents it as always having a “right” and a “wrong” answer and that is often not the case.  More commonly, there are multiple options that must be considered and those options are further complicated by the social, psychological and even spiritual lives that the individual patient lives.  Thus the best decision for one patient is not the same as the best decision for another.  For this reason patients should never turn decision making over to their physicians and should instead, always retain the ability to make their own decisions based on understanding the issues and having the options spelled out for them in an understandable form.  Ultimately, any decision must be informed by balancing the potential risks with the potential benefits and also balancing a person’s own values, beliefs and live situation.  How one does that is very personal. 

As an example, this week’s Clinical Decision section is entitled, “Mammography Screening for Breast Cancer” and presents a case of a healthy 40 year old woman with two children who has no family history of breast, lung or colon cancer.  The three options given in the article are:

1. Recommend screening mammography starting at the age of 40
2. Recommend screening mammography starting at the age of 50
3. Do not recommend screening mammography.

The first author who supports screening starting at age 40 argues that the potential benefit of finding an early cancer is so great, that any potential harm of a false positive exam is small.  He states, “What about harms?  The risk of a false positive finding is greater than 50% during a decade of regular screening, and false positives are associated with temporary anxiety.  Nevertheless, women have reported that they accept the trade-off of false positives in favor of finding breast cancer early.”  This author seems to minimize the risks and sees the potential benefit as surpassing almost any risk.  He speaks of women as a group who do not care very much about the risk of false positives.

The second essay spells out those potential benefits in more specific terms but then decides that the risks justify the benefit only in women over 50 or women under 50 with specific risk factors.  Rather than just finding an unanticipated breast cancer, the authors state that the benefit must be defined as “breast cancer deaths averted and life-years gained by the detection of biologically significant cancers before they become apparent clinically.”  The risks or harms in this essay are “false positive tests, radiation exposure from screening and follow-up imaging, invasive follow-up procedures, and over diagnosis.”   They also point out that screening mammography is less accurate in younger women and result in a higher rate of false positive tests and a lower rate of breast-cancer deaths averted leading them to the opinion that mass screening for women with no risk factors should not occur until age 50. 

The last essay takes the position that no screening should be done.  This author notes that as many as 31% of all breast cancers in the United States are over diagnosed and can therefore result in more harm than benefit.  He goes on to say, that from a public health and public policy point of view, many more cancers would be averted at lower risk if the efforts to encourage screening mammography were instead used to encourage use of aspirin routinely.  He states, “The use of aspirin for 5 years, as compared to no use of aspirin, reduced the 10-year risk of death from cancer by 1.3 percentage points but increased the risk of major bleeding by 0.4 percentage points.  Clearly, the benefits are much smaller and the harms much greater with mammography screening.”

All three of these essays, are written by experts in the field.  All three are using the same body of medical literature and medical data.  All three are therefore correct according to current knowledge.  So what is the answer?

The answer is individual decision making and choice.  There will be those women who very strongly value the knowledge that an early test is negative and will accept just about any potential harm to have that knowledge.  There will be those women for whom the relative inaccuracy of the screening test at the younger age will convince them to wait until age 50 to start screening.  There will be those women who look at the survival numbers with and without screening for low risk women and will decide that testing seems to be unnecessary.  All will be correct. 

This is part of the real world of medicine.  This is part of the reality that patients and health professionals alike face despite the push from health policy experts and legislators to codify medical treatment into nice, neat algorithms that always hold for everyone and are only paid for if you happen to fit the mold that they have defined.  The wonderful fact is that we are all different.  We may share biology but that biology is put together differently for all of us and we must acknowledge and even celebrate those differences in all of life, including in medical care. 

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