The Thrill of Victory and the Agony of Defeat…

Like much of America, I have been spending my leisure time watching “March Madness”.  I have a vested interest.  I learned to love college basketball as an undergraduate at Duke University from 1991-95 which only continued to grow when I returned as a urology resident from 1999 to 2005.  I’m not here to offer analysis as there are far more expert people than me if that is your interest.  However, the unpredictability of the outcome has stirred some connections in my mind that I would like to share.

Caring for patients has several parallels with sports.  I agree with many people that the use of “war” or “battle” analogies when describing patients’ treatment for cancer is seriously flawed.  I would like to consider this metaphor from a different angle which revolves more around the patient-physician relationship than the patients’ relationship to their disease.  What I believe makes college basketball exciting and different from professional sports and even other college sports is that success is heavily dependent on how the team functions together, the extent to which they communicate during the game, and the culture the coach sets for the team.  Sure, a team might have success during the regular season with a superstar player surrounded by average talent but can be outmaneuvered during the tournament by a well coached team that works well together.  For example, Duke has managed to pull off close wins in the last two rounds against excellent teams not because Zion Williamson dominated the game but because the team worked well together and benefitted from Coach K’s expertise. Unfortunately those tight games fell in the opposite direction (Michigan State) in the Elite 8.

Many view this as a tired analogy.  We have heard it over and over again- medicine is a team sport.  Often people are referring to the group of clinicians that must come together to help manage often complex medical issues.  That team is critical and its importance is growing as medical care becomes more complex, our patients’ medical issues are more challenging, and our degree of specialization narrows our focus requiring us to engage others to help.  The core team, however, is the patient and the physician (or provider) and I have had several experiences over the last few weeks that have reminded me of how important this relationship is.  These patients have reminded me, as Jim McKay used to say on “ABCs Wide World of Sports” of the “Thrill of Victory and the Agony of Defeat.”

A few weeks ago, I had one of those rare conversations that remind you of the impact that a physician can make on a patient’s life.  It is easy to get tunnel vision and focus on the problem, the treatment options, the mitigating factors that influence treatment and forget the physical and emotional burden that disease places on the person.  About 5 years ago, I was referred a very active woman with a complex surgical history with chronic kidney disease and a 4 cm renal mass.  Her local physician said because of her prior surgeries that surgical intervention was high risk and he would recommend surveillance.  While she was in her late 60s, she had no other significant medical issues and was the primary caregiver for her grandchild.  At the original visit, we established that she needed to recover quickly and did not want to be on dialysis.  Removing her entire kidney through a flank approach as her local physician suggested as an alternative to surveillance was not an option for her.  She was prepared, educated and asked great questions.  Not to delve into details, I offered her an approach that met her needs and she left the office to discuss this with her family.  Ultimately, we pursued surgery and she did well.

Last week, when she returned for her last surveillance visit with me, she brought her grandchild’s high school graduation pictures from the prior summer to share with me.  She has remained cancer free and her renal function remains stable and because of this, she has been able to continue to nurture and support her family.  She attributes this to the shared decision we made together.

Of course, not every surgery is a complete victory.  Walking out of my clinic, I bumped into one of my patients who I operated on over 10 years ago for bladder cancer and several years after that for a recurrence in the upper urinary tract.  He originally presented to me after being treated for over a year by another urologist.  He came armed with questions and concerns about losing his bladder and quality of life.  We reviewed options together and initially, he was frustrated by my recommendation to remove the bladder.  However after several conversations and a second opinion, we ultimately did pursue a cystectomy and continent diversion.  While he has done great from a functional standpoint and has been able to travel and spend time with his family, he did develop metastatic disease and has had several standard of care and trial treatments that have kept his cancer in check.  He attributes his overall good quality of life to the decisions we made over 10 years ago and while I see him infrequently in clinic, I have had the great fortune to get to know him and his family and my life has been made richer because of this relationship.

And then, there is the agony of defeat.  Defeat can occur in several way in the patient-physician relationship.  Sometimes, like any relationship, the connection is never formed.  Other times, the relationship is soured by poor communication or irreconcilable differences.  Sometimes, the problem is not solvable (or could be better managed by someone else).  Finally, despite everyone’s best effort, sometimes there are bad outcomes.  We all experience our share of victories and good outcomes.  Similarly, the defeat informs us and makes us better doctors and human beings for our future patients.  Recently, I had a very elderly gentleman with locally advanced bladder cancer.  While his intellect was sharp, he had significant cardiac disease and physical limitations that precluded major surgery.  His family has been very involved and we discussed the spectrum of care options from routine endoscopic resection to chemo-radiation to palliative care.  I engaged colleagues in urology, medical oncology, and radiation oncology in the discussion and ultimately we elected chemo-radiation after maximal endoscopic resection.  Unfortunately, treatment has left him with residual disease and a poorly functioning bladder that has led to several hospital admissions for acute kidney injury.  We tried to teach intermittent catheterization but this caused bleeding.  He kept pulling out the catheter we left in place and medications seemed to worsen his cognitive function.  While there is no easy solution, what has made this manageable for all involved is a willingness for me, his family, and him to communicate.  We discuss what is possible and what is not.  I acknowledge where I don’t know the answer and approach his care with humility to ask for advice from colleagues to see if there are other options.  On the other side of the relationship, the family has been engaged and go the extra mile to be proactive about their father’s care.  Ultimately, we have spoken honestly and everyone is realistic about likely outcomes.

There are of course the patient’s where you really neither win nor lose.  A few weeks ago, I saw an elderly but healthy patient for a minor problem.  All the lab tests and images were stable and under normal circumstances, this would have been a quick visit.  In examining the review of systems before walking into the exam room, I noticed that depression and anxiety were checked off on the list.  I have seen this patient for a number of years and they approach life with optimism and a smile.  When I entered the room, I performed an exam and reviewed the results giving them a clean bill of health.  But then I asked about the items she reported on the review of systems.  She explained to me the multiple life stressors that had come at once into her life.  She had no one she could really talk to and very little social support.  I am a urologist and surgeon but I realized what she needed more than anything else, was someone who could listen.  She was not looking for someone to solve her problems or share her burden but only to sit quietly and be there.

As I write this, I realize the common denominator to providing good care whether the outcome is a success or not or somewhere in between is communication and being willing to listen.  I have had the fortune to uncover significant medical problems over the years not because I am the most skilled at physical examination or because I run extra tests but because, like the last patient I described, I am willing to commit the time to listen.  In her case, she was appreciative of just having someone to share with and I was able to connect her with our social worker to provide additional support.  Other times, listening to patients symptoms has allowed me to diagnose diabetes or arrhythmia that have a greater chance of impacting the patient’s life than what they were sent to me for.

The “win” in medical care is often not the outcome.  It is the connection that is made between patient and physician that acknowledges our shared humanity.  Over the past several years, there has been an increased interest to link patient satisfaction to compensation.  Patient satisfaction treats the patient as nothing more than a consumer/customer and physician and health care systems as nothing more than companies delivering a service or product.  As such, patient satisfaction often casts a wide net that can include questions on quality of the food in the hospital, cleanliness of the hospital or clinic, and other items that are not directly related to quality or outcomes.  In fact, there are enough studies out there that show there is a poor correlation between satisfaction and quality of care.

This is because sometimes physicians must make recommendations that patients don’t want to hear or point out problems that are uncomfortable for patients.  Sometimes we have to let patients know that the choices that they have made have resulted in disease and that they must make hard choices to correct course.  Sometimes, I have to say no to requests for medications or treatments that I know will not work or let patients know that the data does not support the choices they are making to treat their disease.  What has helped me bridge the gap between customer and patient is treating everyone like a person and allowing patients to see me as a human being and not just a doctor.

In many ways, I believe this push towards patient satisfaction as a metric may have the same negative impact as the use of “pain” as the “additional vital sign”.  Just like the latter contributed to the use of narcotics to the point of our current crisis, the use of patient satisfaction will drive the investment of resources to improve scores but not necessarily care.  Better food, nicer hospital or exam rooms, and seeing patients within 15 minutes of their appointment may help scores but they do not reflect the true value that a patient may or may not get from an encounter with their healthcare provider.  Of course, CMS argues that they are focusing on how patients EXPERIENCE their care and not satisfaction.  While this sounds nice, I believe the subtlety is lost on stakeholders.  However, questions related to communication and information do get close to what needs to be answered to understand whether patients are actually deriving value from their experience but I believe it is hard to capture the real experience with a survey instrument.  I am honestly worried that the emphasis on the metric will actually detract from a truly meaningful relationship between physician and patient.  While we don’t win “March Madness” with everyone of our patients, working together, communicating and listening, and acknowledging the shared humanity of patient and physician (or provider) allow us to make it further into the bracket than working separately.  I believe that when we emphasize that partnership, we all have a chance to win.

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