NOTES ON ADHERENCE: WHEN DO I FEEL LIKE A PATIENT?

By Jessie Gruman

April 2, 2014

When do I think of myself as a patient, really? Not very often.

I live in New York City, where we are in the midst of election season. Both mail- and e-mail boxes and the airways are filled with reminders that I am a voter and I must vote.

These reminders sometimes prompt a surge of self-interested outrage and intention: I really feel like a voter and I’m going to learn about the candidates and vote, dammit. And I do.

But the vast majority of my time is not spent as a voter. Like you, I play a number of roles (wife, daughter, friend, boss, colleague, client, patient), and each of those roles entails many related responsibilities. Some of these are big, interconnected webs of tasks — attending to my family and friendships while running my business — and some are small (feeding pets, collecting dry cleaning).

It is rare that I feel like I’m fulfilling only one role. Rather, I’m always juggling more than one, making second-to-second trade-offs depending on which role is the most demanding at the moment. We become well-practiced at this switching around, and some of us are better at it than others, but it’s always tricky to add a new role and its attendant responsibilities. What can I leave out? What can I change?

Becoming ill demands that we shift responsibilities around. I catch a cold and find time to blow my nose, buy over-the-counter medication and take a nap. When a symptom of a chronic disease I’ve had for a long time changes, I generally try to fix it myself and absorb the difference into my busy day. Like most people, I accommodate the limitations of most illnesses without ever consulting a health care professional.

But sometimes I reach the threshold of what I can do myself — and I believe we vary a lot in what that threshold is — so I seek advice from a physician. When I walk into her office, I become a patient. I listen carefully, I ask questions, I ask about alternatives and I do my best to leave feeling confident I know what her recommendations are. Then I go home, returning to those tasks I was already obligated to do.

I try to fit my new illness-related tasks and routines in among the preexisting ones, but the role of patient is often overshadowed by other demands. Sometimes I do pretty well, depending on a variety of factors: the pain caused by the symptom or the fear my doctor has instilled in me about the diagnosis and the consequences of no treatment. But most of the time, I attend sporadically to most recommendations; I’m not exactly non-adherent, just selective in what I manage to fit in. I use my judgment about the trade-offs of a pill that makes me itch against the promise of reducing another symptom; I limit or increase my activity level based on how I feel; sometimes I am too tired to take my pills in the evening or too busy to do so mid-afternoon.

I generally follow up with my clinician when I need to or when requested to and have no problem talking about what seems to be working and what I’m not doing. I don’t feel that I am a bad patient. I feel like I am doing the best I can and that I am using my health care responsibly.

Yet if you asked some of my clinicians, they might tell you that I am non-compliant or non-adherent.  Like you probably are too.

Listening to the ongoing debates about our willingness to do what our clinicians tell us leaves me with two divergent thoughts.

The first is that many of our clinicians show little recognition that we are fully connected with a life that doesn’t involve being a patient and that we have many competing priorities. Campaigners, unlike those clinicians, do their very best to make voting the single most important thing for us to do in our own best interest. Plus they tell us where and when to vote — usually just once — if we want this particular result.

Plenty has been written about the lack of training, effort and clarity many clinicians devote to actually working with their patients to agree upon, understand and commit to a treatment plan. This, despite evidence that patients do better when clinicians take their existing responsibilities and priorities into account. I know that with a little more attention from my clinicians I could probably be convinced to rely less on my own judgment and put more energy into following their recommendations.

But here’s the second thought: Why don’t I make that different assignment of priorities on my own? I already failed to fix what ails me by myself and I sought advice from someone who I know knows more about the evidence of what works and about how other patients have fared under similar circumstances. Why am I privileging my judgment and convenience over the advice of an expert that I sought and for which I paid dearly?

I am not sure about the reason for my/our resistance to the latter, but I am certain that it is both a) hard to budge and b) the key to harmonizing our actions with our clinicians’ recommendations about how best to prevent, manage and cure disease. That takes ongoing commitment and accommodations from both me and my clinician.

It’s not going to be full mail and e-mail boxes and endless campaign messages that make us act more consistently on our own behalf, particularly as complicated medication and procedural routines increasingly fall to us. Rather, I think it will take a true understanding, not only of what actions we may take on our own behalf based on a plan mutually crafted with our clinician, but, also of what actions we are willing and able to do in order to function and feel better.

Original blog post by Jessie Gruman. Updated by the GW Cancer Institute June 2016.