The cost-effectiveness of patient empowerment

I think by now there is not a person in the US who cannot quote at least approximately how much we spend annually on healthcare. Fewer people appreciate that nearly 1/3 of this $2.2 trillion bill is eaten by hospitalizations, amounting to about $680 billion. Although the data in the diagram below represent a single year, the overall distribution of expenses is remarkably constant over time.

Of this staggering amount of money, no less staggering is the ICU expenditure, quantified at nearly $60 billion in 2000.

The role of the ICU is to support a patient through his/her critical illness. The reason ICUs exist is that these patients require more intense human and technological interventions, and this geographic segregation allows for more efficiently concentrated care. The philosophy behind putting a patients in the ICU is that of a therapeutic trial. In other words, no one knows for sure a priori whether the ICU intervention will make any difference in the individual patient's outcome. What we have to go by is evidence from studies of similar patients that tells us what on average the expected outcome may be.

Until about a decade ago we never had the luxury of inquiring about what an ICU survivor might be doing a year later: we were fixated only on getting the patient through the acute illness. In fact, about 10 years ago, when I had the chance to ask a very well known and respected academic intensivist whether he cared about what happened to the patient once the ICU doors closed behind him, he, like so many of his peers, gave a resounding "no". Well, we have learned a lot over the last two decades about how to improve ICU outcomes -- more patients are surviving to leave the ICU. So now we have started to be concerned about their longer-term outcomes. After all, surviving an ordeal today just to die or, even worse, wish you were dead, tomorrow is not the kind of a victory anyone would want to claim. Unfortunately, what we are learning is that their long-term outcomes are not particularly encouraging. More than half of those patients who survive a prolonged critical illness die within the subsequent year. Even more discouraging is that fewer than 10% are actually at home living independently. So, when starting a therapeutic trial of an ICU, both the clinician and the family of the patient need to have a clear end in mind, so as to minimize pain and suffering for both, the patient and the family. And a byproduct of this conscious minimization of suffering through inappropriate care is potential avoidance of economic ruin.

What triggered this rumination for me is the paper published in this week's New England Journal of Medicine looking at the clinical course and outcomes of nursing home residents with advanced dementia.
In this prospective study following 323 patients, more than one-half were dead by 18 months. This is not in and of itself surprising. What should, however, shock an uninitiated reader is that 4 out of 10 of these unfortunate patients undergo at least one burdensome intervention, including a hospitalization or an ED visit, in the last 3 months of life. Although as a former clinician I have no trouble believing this number, as a member of the human species I am absolutely appalled! Is there really ever a point to such torment knowing that any potential postponement of death is at best temporary and at worst painful for the patient?

Another interesting point in this study is that what reduced the likelihood of this infliction of pain was a clear understanding by the patients' loved ones of their dismal prognosis. So, although some of the less informed yet loud and disingenuous voices tout them as government-sponsored death panels, the reality is that end-of-life discussions are not intended to limit necessary care. Rather, their intent is to create an honest and transparent dialogue between the clinicians and the patient and his/her family, thus empowering them to make the right choices according to their values. Perhaps the fear-mongers in their torrent of feverish activity have been too busy to notice that the age of paternalistic medicine is over. In the 21st century patient empowerment is the mantra. End of life discussions are just that, empowering.

If I were a politician driving a message, I would stop here. I would not connect this message of empowerment to dollars. But I am an outcomes researcher, so I must. There are examples in corporate America who say that if you do the right thing for the customer, the money will follow. To me this is simply an extension of the golden rule. Call it karma, call it what you will, but doing what is right is often contagious and causes a domino effect. And yes, in the case of spending the necessary time with the patient and the family to discuss the best course of action, the desired byproduct may be to help curb the waste of Medicare dollars on useless interventions, thus ensuring not only the best for the patient, but also the program's sustainability.