My campaign to encourage what I see as common sense in care of frail people gets tangled up with another interesting controversy. It’s got several names: patient-centered care, patients’ rights, shared care, and others. The idea is that whereas traditional or academic medical care does healthcare as if the focus or center of things were a disease to be diagnosed and treated, a better point of view would be to see that center as a person, whose needs are to be met.
These are attitudes, of course, and the healthcare events may look just the same between the two of them, with any underlying philosophy never mentioned or even thought about. Other times, there is a huge and radical difference between what goes on if our underlying focus is on disease and treatment, and what goes on if we’re looking to do what someone wants.
Congestive heart failure in my 80-year-old mother-in-law is very different from CHF in a 60-year-old man who is just coming to the fulfillment of a long successful career. The disease as a heart specialist would see it may be very close to identical: pressures and gradients across valves and pump function numbers could be the very same. And the academic guidelines for the treatment would also be identical. But what we have to think about, what questions we should be asking, and what we should be doing are as different as night and day.
A recent post by Dr Steve Balt, a psychiatrist, illustrates this. He framed the issue by suggesting that, because no two people who have any psychiatric disorder (and this goes for disorders or diseases of any kind) are the same, could it be that it isn’t just the people (and their circumstances, their finances, their personality, their upbringing, their willingness to follow a treatment regimen etc.) who are different but the actual disorder itself that’s different? Never exactly the same?
Dr. Balt was careful to emphasize that we health professionals bring a scientific understanding of disease as fundamental information when we look at someone with a problem. He’s right of course in one way, but there’s another step in the scientific process that we tend to overlook. It’s the experiment that goes on every time a doctor or other healthcare provider and patient agree to try a treatment, or not to. What will happen? Of course nobody knows. The textbook, guidelines, evidence-based scientific prediction of what will happen is one thing, and then there’s what actually takes place. I’ve always believed “what actually takes place” is the more important of the two, but now inspired by this reframing of what we call a “disorder”, I wonder if we should be seeing healthcare science a bit differently.
Experiments in populations will always continue to give us general information about likeliest events across groups of people. And the information coming from those experiments typically carries the credibility and unquestioned authority of the idea “Science”. But what if the weight of that authority was applied to individual people’s circumstances, so that we were forced to respect, ignore at our serious peril, and call scientific, “what actually takes place”? The thing that happens to Mrs. Murphy after I decide to put her on a diuretic?
Doing things this way might address what Ivan Illich was worried about in the 1970s in Medical Nemesis:
With the transformation of the doctor from an artisan exercising his skill on personally known individuals into a technician applying scientific rules to classes of patients, malpractice acquired an anonymous, almost respectable status. What had formerly been considered an abuse of confidence and a moral fault can now be rationalized into the occasional breakdown of equipment and operators. In a complex technological hospital, negligence becomes “random human error” or “system break-down”, callousness becomes “scientific detachment” and incompetence becomes “a lack of specialized equipment”.
For me, looking after fragile old people has been the antidote for the wrong kind of scientific perspective that afflicts so many of us in my profession. But I’m talking about looking after frail people according to what they want, not reflexly incarcerating them in hospitals, stuffing them every morning with preventive medication that can’t possibly be in their interest, and disregarding their wishes because they are exceptions to every epidemiologic rule.
If it were considered unscientific not to focus on each patient’s unique situation, if physicians and other helpers were demoted and sued for disregarding what happens to their patient when it doesn’t line up with expected outcomes, and if they were respected and congratulated when they did the opposite, isn’t it possible we could start putting the patient in the center of the picture? Even begin to get trust back into health care?
Time to rethink health care “science”.