I watched the small baby lay silently sleeping, his little body propped up in a full sized hospital bed, dwarfed by monitors and machines and bags of medications that looked as benign as pure spring water and yet I knew were controlling most of his bodily functions including this induced sleep. His peaceful demeanor seemed so incongruous to the palpable intensity of everything around him. Despite the alarms, incessant beeping, murmur of voices, and general noise and hubbub of the ICU, he went on sleeping, utterly oblivious. In this environment where every organ’s function is externalized and micro-managed down to each breath and each heart beat,then all medical decisions take on heightened scrutiny. It is not hard to imagine why functional and technical measures were developed to assess patient outcomes- and cost- for each of these critical decisions, and in fact how important it is to analyze those metrics to ensure that these babies survive the next minute, next hour, next few days.
We can estimate the cost of this baby’s hospitalization, but how do we measure the value? Outdated (2011) estimates for the cost of the care of patients with congenital heart disease were 1.9 billion dollars according to the Centers for Disease Control. Multiply that by the cost for the almost 20% of our youth in the US who have any congenital or chronic health condition, and then the cost of growing up with these conditions, and we have quite a significant figure. How do we ensure a return on this investment?
The astute health care economist Michael Porter and his group have been leading thinkers in trying to standardize patient outcomes as defined as “outcomes achieved relative to costs.” In a recent Harvard Business Review article, authors Sullivan and Ellnor argue against focusing on cost and patient outcome however. They instead placed emphasis on patient-provider relationships. They describe case studies that document key successes in reducing cost and increasing quality when organizations place systematic emphasis on nurturing relationships. There are literally thousands of articles spanning decades of research into the importance of the doctor-patient relationship on outcomes. Most physicians are bestowed their medical degree after taking a solemn oath to treat the patient, not the disease, reciting the words of great thinkers such as Hippocrates or Maimonides, whose message of humanity as the cornerstone of medicine still resonates.
Medicine has changed much in the thousands of years since these oaths were written. In a room near my patient, another little boy was kept alive by the whirring of a machine that pumped his blood in and out through fat tubing, constantly fussed over by the attentive staff. The technology was impressive, but equally impressive was the level of expertise and level of education required of the varied staff and providers who cared for this child. How do we reconcile investing in this kind of care and in ensuring “optimal outcomes?”
I left the ICU and continued on my day which consisted of a blur of patients, colleagues, committees, trainees, questions, decisions, more questions, and more decisions over and over, as noisy in my head as the background sounds of the ICU. At the end of the day I took refuge in the office of a colleague. It was after hours, all of the lights were off in this office suite, and I was the only one there. I was trying to make one more decision, whether to drive home and risk hitting Red Sox game traffic or wait until the first inning and leave then. I took out my phone to fire up my Waze app, which provides instant crowd sourced information about traffic. Before I could set this little marvel of technology in action, however, I dropped my phone on the ground. As I bent down to pick it up, I was suddenly struck by a sight that had been right in front of my eyes, but I had not noticed at first. As I said, I was sitting in my colleague’s office. It was carpeted with piles of papers and folders covering nearly every surface, each representing another question asked and decision to be made. There were patient needs, committee needs, research needs, trainee needs, regulatory needs. If these piles had alarms, the room would be making as much noise as the ICU. However, in between these piles, literally intermingled with them like precious gems found glistening amongst the rocks and sediment, were thank you cards, expressions of gratitude in looping handwriting or earnestly held crayon. Gifts of chocolate, the ultimate expression of thanks if you ask me, were piled on the table. This office belongs to a gem of a human being, a gifted doctor who is also a teacher, mentor, researcher, thinker, healer, and friend. His many talents are augmented by his ability to connect to other people and his genuine determination to serve their needs, a fact not lost on the families lucky enough to count him as their physician. However, the very fact that these items took as prominent a place in the footprint of his office as the many projects vying for his attention told me of their importance to him as well. I thought fondly of similar gifts in crayon and chocolate in my own office, fondly of the patients and families I have the privilege of caring far, and fondly of my colleagues whose dedication from the bedside to the office never lets up. It really is about the relationships, and it goes both ways- the impact the patients and families have on the health care team is as powerful and sustaining as the impact back on the families.
I do not see why “value” in health care cannot take into account both the functional measurements of health and wellness as well as the “value” of investing in these relationships. In fact, I think these are both vital. In addition, and the whole reason I started this blog, was to see if we can start a conversation about how to become “collectively well” by harnessing the power of relationships and mentoring children to help them optimize their potential and exceed our current estimation of “outcomes,” and in turn be inspired ourselves. Our patients are in the ICU for only a fraction of their lives. These minutes and hours are critical, costly, and given the need for survival, are incredibly valuable. To me, surviving is only a start, and if we only measure the value based on where our patients are, or how they rate their current satisfaction, then we miss out on seeing how high they can reach. We need to help these children thrive, grow, and shine and, like Milo, believe anything is possible.
I was startled out of this reverie by my phone when the app started talking to me. I looked down and was struck by how many drivers labeled as “Wazers” were busily buzzing around like the staff the ICU, providing data that then helped each individual have a better experience or make a better decision. Could there be an “app” that provided information on how to guide our patients through life, feeding back data to constantly improve both the patient and provider experience? I have thought about this quite a bit, and I think there can indeed be mutual metrics to collect and analyze to begin to understand this. However if we do not start this conversation, and look at the possibilities, then we will miss out on this completely. Our relationships are indeed powerful. How do we utilize these relationships to set the proper tone to support these children and help them optimize their potential, and how will that then feed back on the health care team to sustain our long days and keep us motivated? Maybe we start by counting hand made cards. And chocolate.
dedicated to my colleagues who tirelessly serve and the patients who inspire us