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.

The fallacies of intelligent Design - Unintended consequences and health insurance exchanges

In a previous blog, I noted that a fundamental difference between conservatives and liberals is that the later tend to focus on what should be while the former tend to focus on what can be. Perhaps no where is this now more evident than in the developing story on the deployment of health insurance exchanges. The ACA timetable for deployment of the exchanges calls for them to deployed and operational by October of 2013. it is now appearing increasingly unlikely that this has any real hope of actually happening.

The NYT reported yesterday that it is likely that only 17 states will operate their own exchanges. As noted in the article by Robert Fear:

The federal government and states face a series of deadlines in the new year. On Jan. 1, Secretary Sebelius must determine whether each state will be able to operate its own exchange in compliance with federal standards. By Feb. 15, states must notify the federal government if they want to help with selected tasks, like consumer assistance and the supervision of health plans, in partnership with the federal government.

On Oct. 1, consumers can begin to enroll in health plans, for coverage starting on Jan. 1, 2014, when most Americans will be required to have insurance.

The remainder have chosen to forego this opportunity. The reasons are multiple but a common theme appears to be the lack of guidance which was forthcoming from the Washington DC bureaucracy. As noted the the NYT piece:

In Tennessee, state officials did a huge amount of planning for a state-run exchange. But Gov. Bill Haslam announced this week that he had decided against the idea because the Obama administration had failed to answer numerous operational questions.

Gov. Chris Christie of New Jersey cited similar concerns in vetoing legislation to establish a state-based exchange last week.

“New guidance continues to trickle out of Washington at an erratic pace,” Mr. Christie said.

I have no particular desire to gloat. Innumerable patients I care for have taken this timetable to heart and are betting on the timely access to insurance which will provide them with affordable coverage independent of pre-existing conditions. I am concerned they have placed their hopes on something many would consider desirable but is not not feasible. Both are required.

When Nancy Pelosi proclaimed that the bill needed to be passed in order to see what what in it, it turns out she was not kidding. At the time the thought was that she was referring to the extensive document already written. However, this aspirational document represented only a shell of what will ultimately be needed. What appeared to be a good and grand idea gets a bit more complicated when the idea is to reconstitute perhaps 20% of the economy and make it micromanaged by federal bureaucrats.

This episode adds new meaning to the term "Intelligent Design". When political officials express skepticism regarding biological evolution and embrace concepts that the universe can and was designed by some intelligent being, they are ridiculed a being ignorant. I agree that those views are ridiculous and should be challenged. Complexity and durable complex systems do not develop as a consequence of top down architects.

Similarly, when human beings try to assume they can take on god like powers they are behaving in an ignorant fashion. I am sure that when HHS took on the task of simply providing guidance to states trying to build exchanges, they quickly found themselves in over their heads. No gods or intelligent design capacity there. I hate to imagine what they have ahead of them when they attempt to build exchanges for the remaining 33 states. These are entities which can evolve over time if the appropriate rules and selection pressures are applied. I have my doubts they can be the product of creation by people and institutions which are made of ordinary people.

The Pain of the Hedgehog

In today's Wall Street Journal, there was a very interesting article focusing on Dr. Russel Portenoy. (Portenoy)  Dr. Portenoy was a instrumental driver of a movement in medicine to address the under treatment of pain. I remember this movement at or near its inception and have to admit it made sense to me at the time and for the most part, it still resonates, although mostly as it relates to acute pain.

Early in his career Dr. Portenoy had a big idea. He noted that opiates were extremely effective in the management of pain in patients affected with cancer. He envisioned that these drugs could be used in a much broader clinical context to treat chronic pain in patients who did not have cancer. He was very smart, and very articulate and these elements mixed with his passion for for what her believed in catapulted his agenda to the front and center of medicine and the public. He changed how medicine was practiced.

He was a hedgehog. Isaiah Berlin in his essay the "Hedgehog and the Fox" borrowed from the Greek Archilocus, to divide thinkers into two categories, hedgehogs and foxes. Hedgehogs believe single defining ideas while foxes draw on a much larger set of experiences and hold more skepticism that we can place as much stock in any single idea. Hedgehogs are much better positioned to move the needle on any given issue. They are better advocates because they tend not to be distracted by anything, including evidence which fails to support their big idea.

Dr. Pourtnoy overcame resistance to wider use of opiates using his powers of persuasion to convince skeptics that the dangers of opiate use were overstated. He believed at the time that the evidence did not support the concerns which had long limited their use. While he may have correct that the evidence did not support the dangers, his hedgehog biases also blinded him to the lack of evidence supporting their safe long term use. He confused strong belief with strong evidence. To his credit, he now appears to have recognized that his efforts have resulted in substantial unintended consequences and he would not have pursued the same agenda if he knew at the movement's inception what he now know now.

The world needs both hedgehogs and foxes. Too many foxes and no one will pursue big and bold ideas. However, too many hedgehogs results in too many big gambles. Furthermore, it also makes a difference where the hedgehogs and foxes reside.

Within our world, we have people who are early adopters and others who are late adopters. That mix is great for creating "unfragile" entities. Early adopter can hit it big or can go down in flames. Late adopters can be so conservative that they relegate themselves to oblivion or they can serve as a reservoir to repopulate after the early adopters have done something crazy. It works because you have diverse groups hedging their bets in lots of different ways.

However, put a hedgehog in a position of authority and in charge of some entity which can compel others to uniformly embrace big ideas and you remove that diversity of response. In the world of pain management, the hedgehogs captured the power of medical licensing boards and used coercive tools to push their big idea.

I have to admit I have my hedgehog tendencies, particularly relating to the deployment of data and data tools in medicine. It is my big idea (although do not take that to mean I conceived this). I think big ideas are fine as long as they are pursued within a particular framework. First, if at all possible, big ideas need to be pushed out within an environment where people have the right to decline them. No matter how good the idea sounds, it is desirable to have cadres of people who are free to reject them and exercise that freedom, even if they appear to be stupid at the time. Second, big ideas should be deployed in an environment which has feedback loops already in place. The concepts of improvement and  progress are meaningless if there are no mechanisms in place to define where you started from and where you ended up. Finally, understanding success or failure, improvement, and unintended consequences often requires a time frame which is beyond the attention span of individuals or individual human lifetimes. What appears to be success after a few months or years, can translate into disaster after a few decades.