On getting what you need out of health care

I once read an article about calorie restriction and its potential to extend life. The author’s point boiled down to “sure, you could add 10 or 20 years to your life, but if you can’t eat, why would you want to?” This little anecdote illustrates a larger issue that is frequently overlooked: not everyone wants the same thing. On the one hand, duh. But on the other hand, look at the huge volume of writing and research dedicated to sniffing out THE BEST diet, or exercise program, or morning routine, or place to live, or anything else. The part that is all too often missing is “for whom?” or “for what”?

The confusion generated by this lack of clarity plays out on blogs, in magazines, in books, and even in scientific research. There are some bright spots: some of the more enlightened writers in the health-and-fitness blogosphere have zeroed in on this issue as a choice between focusing on performance or longevity. It’s much more sensible to follow a high-fat diet, for instance, if you are concerned with immediate athletic performance in endurance events than it is if you are focused on preventing atherosclerotic heart disease. So should you do it? It depends on what you are after— and this point bears repeating!

Unfortunately, the healthcare and medical industry is terrible at recognizing that people’s priorities differ. Though there is increasingly lip service paid to shared decision-making, there is rarely meaningful acceptance of goals outside of “extend life as much as possible.” Atul Gawande writes about these issues with cancer patients at end-of-life in his new book. He writes quite candidly about struggling to accept patient’s choices.

The process becomes even muddier when we turn to treating chronic illnesses. Things like diabetes and heart failure and high blood pressure both influence and are influenced by how people live their lives. Treatment and management plans are carried out by these people, as part of their everyday lives. So who are the doctors to tell them what they can and can’t do, and what they should and shouldn’t sacrifice? The key is to recognize who is expert in what. Healthcare professionals are experts in disease, physiology, chemistry, pharmacology. Individuals are expert in their own lives, values, sensations, symptoms. Both pieces are needed to make coherent and compassionate treatment plans. Some healthcare providers recognize this. Many don’t— and this, frankly, sucks.

I’ve written about the concept of Health Force previously. Health force is the strength of people’s beliefs that they actualize their own unique concepts of health. It is influeenced by sociocultural and contextual factors, individual experience, knowledge, values, and motivation. Health force is personal and dynamic and may shift  depending on education, access to resources, health status, and life experiences. It’s unique. It’s individual. And in a diagnose-and-prescirbe paradigm of healthcare, it’s largely ignored.

Have you ever left a medical appointment and felt like crying because you were confused, didn’t get your questions answered, or were offered a solution that just didn’t seem helpful or doable? I have. And to be honest, I’m a little nervous about going to my upcoming ortho appointment  because I know it can be hard to get advice focused on restoring the kind of function I’m looking for. We as patients (even me!) are not great at speaking up about our needs, and providers are not great at asking or at listening. So what to do?

• I think every heatlhcare provider should approach every patient encounter with a discussion about goals. We need to give information, but we also need to receive information in order to make useful reccomendations.
• What if yours doesn’t? You could shop around. There are good docs (and NPs- lots of good NPs!) out there.
• Or you could try using some of these: “What is the ultimate goal of this treatment?” “What are the trade-offs?” “What are the alternatives?” “XYZ is really a priority for me. How can we incorporate that?” This can be super intimidating. Bring a friend for moral support.

I’m afraid, though, that we need a paradigm shift in medical care to achieve this. Is it coming? Are shared decision-making and patient-centered care making headway in everyday practice? I don’t know, but I’m working on it.