They say a picture is worth a thousand words.
I believe stories can communicate content and capture emotion in a way trying to write the content and describe the emotion in a more structured manner may not.
All that is to say, I apologize in advance if this piece seems like just one story after another, but when we are talking about something as personal, emotion-filled, complex, and frequently difficult to understand or negotiate as healthcare, stories can cut to the heart of the matter and bring clarity to what is, what should be, and what can be done to transform the system.
I knew from a very early age (7 or 8) I wanted to be a doctor. Although my father is a physician, he never pushed me towards or away from medicine. When writing essays for medical school applications to answer the question “Why do you want to be a doctor?” my response was typically “I love science, and I want to help people. Medicine will allow me to do both.” That indeed was true, was what I sincerely believed, and was a rational and logical reason to pursue a journey which required a tremendous investment of money (my parents’), time, effort, dedication, and stamina.
However, there was so much more than that. I have only recently become consciously aware of what that “much more” was. Age apparently has gifted me with the harvest of introspection and enabled me to gain insight internalized as a child but not understood at a conscious level back then.
You see, when my sister and I were little, my father would sometimes take us to his office as well as on house calls. We would sit quietly in the waiting room, and I would watch as patients went into his office and exam rooms looking one way and then later emerge looking quite another. There was clearly something magical happening during that interaction. Furrowed brows, downcast eyes, or a cloak of fatigue were replaced by looks of relief, a sense of calm, or a stance of determination to fight whatever condition might be causing physical or mental distress. We would sit in the car as he went inside a stranger’s home to care for someone for whom a trip to the office would prove a severe hardship or who could not afford a trip to the hospital. Though he was sometimes paid not in money but in cakes, the bounty of a recent hunting trip (I will never forget the frozen, skinned rabbit in the kitchen sink given to him by a patient – YUCK!), and vegetables from the garden, his passion, dedication, and joy in caring for his patients never flagged, and their lives were intertwined in a rare and special way.
As I look back on my training days in internship, residency, and fellowship and then later in practice, certain moments are indelibly etched in my mind. These are but a few born of the privilege I have had in caring for patients:
- Patients in a teaching hospital generally understand that means some of their care will be provided by “doctors-in-training.” As a medical student, one evening I was sent to do a blood gas on a patient with asthma. A blood gas involves sticking a needle in a patient’s wrist with the intent of drawing blood from an artery in order to determine how well the lungs are being oxygenated. Until the practice changed to inject a little numbing medication prior to the blood gas needle stick, it was standard for this procedure to be performed without the benefit of anything to dull the pain. I always dreaded doing blood gases because they could be very difficult to perform, and they were very painful for the patient. After my third attempt was unsuccessful, I told the patient I was going to get someone with more experience. She refused to let me do so, saying “You have to learn. How are you going to learn if you don’t keep practicing? You can do it, and I won’t let anyone draw my blood but you.” You never know who your teacher will be.
- As a resident I learned the power of a gentle hand on a fevered brow, assuring a terminally ill patient you will be with them at the end and will make the journey as comfortable as possible, saying “I’m so sorry” when someone is told the pregnancy test is negative after the 5th IVF cycle, looking a patient directly in the eye and letting them know “I’ll be with you every step of the way” as you deliver bad news, stroking someone’s hand until the pain medication kicks in, and showering them with a sunshine-bright smile when the test for cancer comes back negative. You never know when what is needed most is not the most cutting-edge technology nor another blood test nor a consult by the leader in the field, but being human and truly connecting with another during a time of extreme vulnerability.
- As a GI fellow, our on-call team was presented with the challenge of providing care to a patient with a massive upper gastrointestinal bleed who was a Jehovah’s Witness. Unfortunately, he waited quite some time when he first began to bleed to tell his family he was having a problem. And then, once they were aware, much time passed before they could convince him to go to the ER. He was quickly moved to the ICU and hooked up to IV fluids and medication to help stabilize him sufficiently to perform an endoscopy, which involved putting a scope with a camera down to find out the source of the bleeding. He adamantly refused any blood transfusions. We discovered an ulcer in his stomach which we treated, but explained to him and his family that given the amount of blood he had lost prior to coming to the hospital, he would die without being given (many) blood transfusions. In this literally life-and-death situation, his family, also of the Jehovah’s Witness faith, attempted to convince him to accept the blood. With grace and an obvious love of his family and of life, he continued to refuse, and so we were left to keep him comfortable but helplessly watch as he slipped away. It was a devastating experience for his family and (what may potentially be considered by some to be an “unnecessary death”) haunted me. My sole source of comfort was the peace, faith, and equanimity with which he had accepted the consequences of the choices he had made and seemingly without fear. You never know when you will be called to remember that each moment with a patient is precious and should be honored as if it might be the last.
- As a physician in practice, I was always surprised when a patient who had been seeking a diagnosis for quite some time prior to the referral to me would express shock and then relief when I said “It doesn’t make sense medically, and I can’t explain it, but since you say it is happening, we need to move forward, figure out what is going on, and what can be done about it. What do you think is going on? What do you think may be causing the problem?” 95% of the time in these situations, the patient knew the puzzle pieces which led to the answer, and all we then needed to do in collaboration was figure out how they fit together. Never underestimate the power of stillness and actively listening in silence.
In recounting these stories and thinking back on what has seemed to work in a one-on-one appointment with a patient as well as at large organizational or complicated systems levels, certain themes emerge. They may seem (deceptively) simple. And although everyone, both in and outside of the system, can truly rally and have an impact, translation into action at a population level requires passion, an un-erring vision of and belief in the possibility of a better and different way, and extreme perseverance.
So what works?
- Do unto others as you would have them do unto you. As you are interacting with patients (or with anyone for that matter), imagine yourself in their position. Are you treating them in the same manner you would want for yourself, a family member, or friend? Do the staff and the design of the care delivery environment reflect an intention to bring ease to distress and suffering? Do your actions and words communicate best efforts and bring “A” team performance to every encounter?
- Focus on the patient. If your focus remains on the patient and what is in their best interest, you will find there is greater clarity in decision-making and the actions you take (or select not to take because they really do not enhance your ability to diagnose, treat, or cure).
- Sawubono – “I see you.” Do your words and actions unequivocally let the patient know you see and respect them as a person with a real life, real fears, ideas of their own about what may be wrong, and what will work or may best for them in addressing their medical issues. Do they communicate you truly care and view the patient as not just a collection of signs, symptoms, and lab results to be “profiled” into a diagnostic bucket?
- Be a healing presence. Medicine is not nearly as black and white as we might think or like it to be. Despite all the awe-inspiring advances in technology, medical techniques and interventions, and life-saving or life-changing medications, there is still a lot of gray, and cure is not always possible. However, it is possible to heal even though you may not cure. Are patients left with a sense of peace, comfort, understanding, (reality-based) hope/optimism, and connection which engenders (1) resilience and (2) the strength to move forward in the best direction for them given their particular circumstance? Have they been helped to see and feel their true essence remains intact and they are not merely their diagnosis?
It’s “just” that “simple.”
In a world of fragmented care, increasing complexity and cutting edge advances, rising disconnections despite technology which enables global connection, mounting healthcare costs, a tsunami of chronic disease and lifestyle-related maladies, and “new” care delivery approaches and reimbursement methodologies, perhaps these lessons learned from the past are some of the critical ones to help take us “back to the future” in a way that brings insight, power, and grace as we face the myriad challenges of a broken healthcare system?
Published in Wharton Healthcare Quarterly.