Saturday, February 2, 2013

“Not Again!” Op-Ed: I.A. Jeppson, MD

I have never been comfortable about making inferences about people’s subconscious motives, but my life experience makes me believe that the reason people give for opposing something is often not the real reason at all. I first noticed this when I got caught up in a situation precipitated by my research.

I had always been of the opinion that being honest with patients was important to maintaining trust. After all if we started lying whenever it was convenient (even if it was to the benefit of the patient) confidence in medical practitioners would decline and patients would think we told lies to make money. But I was working with patients who wouldn’t remember if I had lied to them. I reasoned to myself that in this situation being honest with the patient's family was really what was important, and this could end up helping not only the patients directly affected, but everyone. Still what I was about to do was nothing more than an elaborate ruse; at least as far as the patient was concerned.

However, the results of that experiment and those that followed steeled my resolve that this was something that needed to be implemented at every hospital and assisted living home. My enthusiasm spread quickly among my colleagues and the insurance companies agreed to pay for it, but there was a public backlash. My university was shutdown for a day when what was suppose to be a protest turned into a riot. Amid cries of “MY MOTHER DESERVES BETTER!” and “PEOPLE BEFORE PROFIT!” ten people had to be hospitalized and one was killed. After that I was not surprised when the death threats started coming.

The uproar that ensued even led to congressional hearings and proposed legislation banning the therapy. I ended up subpoenaed before congress and reluctantly subjected myself to the talking heads on television where I was called a cold-hearted scientist that couldn’t understand what it meant to be human, or that only someone with a financial interest could advocate such a thing. After media investigations found no evidence that I had any business ties to the robotics industry, and that I was not being paid to lobby for the insurance industry the matter was dropped, but not rectified.

Those who wanted my medical license revoked remained resilient. I could empathize with the people that were uncomfortable with the use of robots to trick patients into thinking that they were interacting with a human, but their outrage was only outmatched by their irrationality. Instead of looking at the matter at hand, the patients and their families, my personal life was scoured for anything that could discredit me. They somehow figured out that someone I had a physics class with in college (we hadn’t been in contact since) owned a robotics company. I was even called a racist because the robot used in my research was named Roberta (the inventor named it after his mother). The more reasonable opponents stated that all we really needed was to get people to come and spend time with people with dementia. But of course nobody wanted to pay for it and not many were willing to volunteer their time to do it. Not that I can blame anyone for not wanting to.

As an undergrad volunteering with dementia patients I saw the worst things I’d ever seen; mothers drowning in anxiety and depression because they cannot recall their children's names, people begging their long since deceased parents to come free them (the patients had to be restrained to the bed). Despite how widespread dementia was most people still had no direct experience with it. The only reason this therapy was not banned was because of the support of patients' families and even patients in the early stages of dementia. They understood that even with video chat their loved ones could not always have somebody with them.

The critics were correct about some things. The sitter-bots did not have souls and they had no empathy, but they were very good imitators. Before the bodies themselves were built the sitter-bot was nothing more than software that could talk to patients via an intercom. The results were incredible; all measures of anxiety plummeted, the rate of memory loss decreased. It appeared that having someone to interact with protected the brain from the still murky forces ravaging it. The rate of convalescence accelerated, enabling patients to be discharged from the hospital quicker. In a later study where games were introduced via a tablet computer the results were even more dramatic. Sitter-bot could continue conversing with the patient while playing the games and could even converse about the game itself; engaging in friendly trash talk and displaying mock anger when defeated. Through the games Sitter-bot could even identify cognitive weak spots and trends in cognitive decline. This data proved useful clinically and for further research. Soon Sitter-bots where developed that change game strategy to aid the patient therapeutically.

It was a shock to people that had never interacted with individuals with dementia that many patients came to believe that Sitter-bot was an old friend that they had known for years (often after just a few minutes of interaction). For instance, a patient of mine named his sitter-bot Evelyn and when he introduced Evelyn to his wife she became enraged and assaulted the tablet computer the sitter-bot avatar was on. I latter learned through the hospital's lawyer that Evelyn had been the name of the gentleman’s first wife. It became necessary to prep family and friends for the possible “side effects” of sitter-bot.

The improved moods of the patients were also reflected in their family members. All objective measures of stress decreased and from my own subjective experience with the families they seemed much more at ease. I wouldn’t go as far as to say they were happy, after all their loved one was slowly slipping away from them, but the situation was now less painful.

The loudest critics were those who worked in health-care. It is an open secret that much of the concern was about their jobs being replaced by robots and this was the litmus test. If a robot could be used to treat mental health, why couldn’t one wipe a butt, give a shot, or take a blood sample. Indeed all of these things eventually happened. I too felt anxiety about my own future caused by the exponential march of artificial intelligence and robotics, but when I look at the positive contributions these have made toward patients whatever befalls me is worth it. If we oppose a technology that can aid a patient because it will do us financial harm we are no longer healers. I am a firm believer that one should not waste their energy fighting the inevitable. I know from personal experience, when robots started being used to diagnose and treat common mild diseases, but one must prepare for the future. This needs to be recognized not just within health-care, but in society in general.

The transition to the use of robots in health-care may not have been seamless, but today you would be hard-pressed to find someone who would want to go back to the old ways. I am old enough to remember a time before autonomous cars. Young people today can not fathom how allowing individuals complete control over the movement of their cars was once considered an acceptable risk. Indeed, it does now seem absurd that we once preferred having a person operating an object that weighed a ton moving at 80 mph. Or how doctors once thought washing their hands before seeing a patient was a waste of time, because they had never done it before. That appears to be the nature of change, everyone bemoans it when it’s happening, but cannot imagine going back to the old ways once it’s done. I am of the opinion that health-care is at another one of these junctures.

The pharmaceutical industry entered its most profitable era after a consortium of the industry's biggest players developed an artificial intelligence software capable of scanning an isolated pathogen or molecular defect and then design a therapeutic. They split up the areas of manufacture based upon their respective strengths. This breakthrough should have heralded in a new age of personalized medicine; in a sense it did by taking into account a limited set of genomic information. The industry quickly developed a series of blockbuster drugs that they could control the manufacture of.
When the technology reached it’s limits instead of trying to improve it, resources were diverted to the legal, lobbying and marketing departments. Those who improved upon the technology were held up in court or sued into non-existence. Lobbyist insured that the patent office saw things from big pharma’s point of view. The marketers were needed for the few instances where a rival therapy made it through the gauntlet of lawyers and lobbyists. With their patents now about to expire the industry is feverishly attempting to have the laws re-written to protect their monopoly.

Now that their software is about to become opened sourced they fear improvements beyond their control will be made to it; allowing others to make a profit. They fear that improvements in technology have made it possible for drugs to be manufactured locally, on demand. Despite, the fact that this technology is by any measurable standard safe and dependable, big pharama is lobbying to have it outlawed; all in the interest of “patient safety”. As a society we should not succumb to the fear campaign of the pharmaceuticals industry. They may have convinced themselves that ‘thousands upon thousands’ will die if others are allowed to design and manufacture therapeutics, but the only evidence they have for this claim is their own motivated reasoning.

We live in a world where information is the infrastructure, and information changes rapidly. Never before has humanity lived in a world where the underlying structure that dictates how we survive can change so fluidly. It is hard to know which direction is forward, and as a society we must learn to be more accepting of the fact that many people will find themselves on a path that is no longer viable. If change is no longer seen as something menacing than the transitory periods will be less painful. Someone else's gain will not be another’s ruin and we can have an honest conversation, as a society, about the possible costs and benefits of the change in question. Those of us who work in health-care can become the paragon of this new paradigm. We can start by not letting our colleagues in the pharmaceutical industry fool themselves into thinking that they are now representing the best interests of patients. Not only are they not helping patients but they are also doing themselves a disservice. There was a time when we were reluctant to wash our hands to protect patients from infection, now we must get used to washing our hands of the past if we are to protect patients from ourselves.