I hardly knew him

I mopped up my aging messages in my message box yesterday with the hope that I could take care of everything that was pressing before the holidays. I called one particular patient whose message intimated that he had suffered a complication from a recent treatment. This was a patient who I have followed for years from a variety of chronic conditions. I had seen him in the office more than a dozen times.

My impression of him from these generally brief encounters was that he was a pleasant man, rarely appearing in any distress. I knew he traveled from a modest distance and most recently, we had elected to have his care transferred to a facility closer to his home. He was approaching his 9th decade of life and suffering from a number of slowly debilitating conditions which made travel increasingly difficult, particularly a chronic neuro-degenerative disease. Still, from all outward signs, he appeared to be quite intact and robust.

I called him at home to inquire as to the nature of extent of his difficulties. As it turned out, he was feeling fine and the issues that initially prompted his call were sell on the way to resolution. However, the opportunity to speak to me in the relatively unhurried context of my call created an opportunity for him to share a whole host of questions and long standing issues. I listened intently.

As it turned out that despite seeing this gentleman repeatedly over many years, I hardly knew him at all. He was retired from the aerospace industry, something I had no inkling of. He was a keen observer of detail, recalling specific details of past encounters, particularly actions we did which were inconsistent over time. He noted variation in our staff activities, instructions they gave, and issues that appeared to develop as a consequence. He was a wealth of information which we might have benefited from if we had only listened to him.

As the conversation went on, he also went on to share some of the challenges he faced now with an ailing spouse and growing costs of her care. The time and financial burdens were actually rather staggering. I hadn't a clue as to what he faced. I began to wonder whether the incremental benefits he might derive from our frequent interventions might be viewed as not worth his investment of time and money compared to the benefits he might have received from investing his time and money elsewhere. Those considerations were never on my radar. I had what amounted to be an incomplete context to place my recommendations into.

As individual physicians what are our obligations to know these types of details regarding our patients? In the current model, it is simply not practical to delve into this type of detail and there are no incentives to do so. In reality, there are huge financial incentives to remain as ignorant as possible. Injection of personal complexities into the production model of medicine slows decision making, taking decisions which might be viewed in black and white terms to shades of gray. Shades of gray may not be compatible with efficiency, a euphemism for speed and throughput.

Can we actually do our jobs well if no one in the medical community deals with this? Is this a personal responsibility of patients to make their preferences known or at least delegate a family member or friend to advocate? I can't say for certain who should do this but it is reasonable to assume there are multiple possible approaches, most of which will not be deployed in our current system because they cannot be readily monetized. We can hope that such time consuming and complex activities will be available broadly based upon the spirit of volunteerism, but this represents a best can be described as an aspiration for the triumph of hope over experience.

Improvement in the delivery of health care ultimately requires better decision making and those decisions require a better understanding of the unique goals of individuals. If we representing those who assist in making those decisions are near complete strangers to those they are assisting, we will not be in a position to provide optimal guidance and perhaps will provide more bad advice than good.