By NIRAN AL-AGBA, MD

Recently I wrote about empowerment and the importance of letting patients make their own health care decisions.  Our job is to make sure patients are given information and then allowed to choose the best option for them. Maybe we should even embolden patients; give them confidence and encourage them to take more control. Physicians tend to feel more comfortable advising according to the “standard of care” and we struggle handing over the reins when we believe we “know” the safest path to take. 

Every time I talk about building better metrics, I emphasize the significance of evaluating something physicians can change or control.  The intent behind measuring patient satisfaction was likely to increase patient autonomy, however, as with many things; the devil was in the details.  It turns out chasing higher patient satisfaction scores can result in higher costs and increased mortality.  Overall, the most satisfied patients were more likely to be admitted to the hospital and total health-care costs were 9% higher. Most strikingly, for every 100 people who died over a four year period in the least satisfied group, 126 people died in the most satisfied group.  At least they died happy and satisfied right? That notion can be difficult for some physicians to accept but might be more important than we realize.   

Looking at surveys Press and Ganey developed over their illustrious careers leaves me wanting something more than “Did your doctor listen to you?” and “How often were you treated with courtesy and respect by your physician?” Neither attribute ensures better health care outcomes as noted above.  If the goal is to empower patients, more objective questions are necessary to give more insight into this metric.   

1. Did your physician give you a name for your condition?  (“I don’t know” counts.)
2. Did your physician discuss more than one treatment option? 
3. Did your physician ask you to choose a treatment for your condition?
4. Did you ask a question of your physician? How many?  _________

(CMS bonuses $ per number of questions >1.) 

1. What did you learn during your appointment with your physician? (Use lines below and there is more space on the back if necessary.)

A few winters ago, I had my opinion handed to me on a silver platter.  A new family with a 4 month old baby came in for a well child check-up and immunizations.  The mother mentioned concerns about a cough her son had for 7 days.  On exam, he was afebrile and well hydrated; yet, had raspy breathing that troubled me.  On exam, that observation translated into bi-basilar crackles with slightly decreased breath sounds on the right side.  Without a fever, a chest x-ray seemed like the best option to differentiate between bronchiolitis (not worrisome) and pneumonia (more distressing.) 

The mother picked her child up off the table and looked horrified at my suggestion to order a film. Fear and hesitation over an X-ray was a novel response, however I had seen this reaction about immunizations, blood draws, or other significant interventions before.  I inquired as to her concerns and reassured her radiation exposure was minimal compared to the risk of missing pneumonia in an infant.  We went back and forth with a more questions and answers.  I always try to be kind, courteous, open, direct, and honest and this situation was no different.  This mother did not want an antibiotic prescription and I was uncomfortable treating the baby with antibiotics and no definitive diagnosis.  She ultimately refused any further care, picked up her son, walked out the door, and went home.

This child was not necessarily on death’s doorstep, but I could not guarantee this child would get better on his own.  I communicated as much to the mother; she disagreed and it was her right to do so.   I explained my concerns, conveyed my recommendations clearly, and discussed symptoms she should watch for if the baby worsened.  I documented the encounter in the chart and there was nothing more for me to do. 

After the mother left, the student shadowing me that day began crying out of shock, disbelief, concern, and frustration at this mother for not doing the “right” thing.  I remember feeling this way years before:  there was always a right answer, it was our job to find it, and make things happen, but health care does not always work that way.  As a physician matures, they begin to understand more of the gray.   

The practice of medicine is an indefinite, sometimes clumsy art and as a result can be unpredictable as a science.  While it is difficult for physicians to comprehend, what we believe to be best for our patients may not be what they feel is best for their children or themselves.  It is a bitter pill to swallow.  We spend years in training witnessing good outcomes with intervention and death from “poor” decisions, but we must remain cognizant of the fact each patient may have a different goal.

Patient satisfaction seems to come less from the ultimate outcome, and more from feeling acknowledged and having played a role in health care decisions.  That is the key to true empowerment and autonomy.  Consider how this mother might have answered the survey questions. She would have been “satisfied” despite our disagreeing, which makes for a better metric upon which to evaluate quality. 

Patients are weary of being told what is best for them, what they should do, or what standard of care dictates.  Unfortunately, I have lost children as a result of parents not following some recommendations a few times in my career. In reality, I may have lost them regardless. 

Here is where the rubber meets the road:  The autonomy to choose the right path for a given patient may have dangerous and permanent consequences, but the authority lies with them for better or for worse.  A patient may be very satisfied one moment and dead the next.  It is time physicians embrace the fact that our aim and conduct should be to inform and educate, not to convince or influence and let the chips fall where they may.  And survey metrics should objectively reflect the importance of that vital patient concept. 

Nir al-Agba is a pediatrician based in Washington, DC.