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Patient-Centered Care: From Exam Room to Dinner Table


Only one in 10 respondents to a national survey could estimate how many calories they should consume in a day.

Seventy-nine percent make few or no attempts to pay attention to the balance between the calories they consume and expend in a day.

These and other piquant findings from the online 2011 Food and Health Survey fielded by the International Food Information Council Foundation (IFIC) struck home last week as I smacked up against my own ignorance about a healthy diet and the difficulty of changing lifelong eating habits.

The confluence of my failure to gain weight after cancer treatment and a blood test suggesting pre-diabetes meant that as of last Tuesday, I have been on an eat-specific-types-of-food-every-hour-and-write-it-down regimen.  And despite a lifetime of recommending that people change their behavior to become healthier, I am frustrated as I try to follow my own advice. I am bewildered about what I'm supposed to eat.  Finding it, preparing it and then eating it at the right time requires untold contortions and inconvenience. Writing it all down is tedious.  I don't have time for this I have a job, obligations.

In the midst of my crankiness about this, my admiration is renewed for those who figure out every day how to incorporate into their busy lives the demands of diabetes, allergies and other chronic diseases. How easy it is to underestimate the effort required of people who are ill to become as functional and healthy as they can!

It's ironic that as more is learned about the effect of what we eat on our health, the greater our responsibility to make use of that knowledge.  But we won't benefit from that knowledge unless we are willing and able to consistently monitor, learn from, tweak and change daily eating habits.

Many of us don't yet realize just how much our health depends on our own actions food related and otherwise.  And whether we realize it or not, many of us including me still struggle to find the skills, time, energy and knowledge to take on these tasks, some of which must be attended to every day for the rest of our lives.

Food plays a central role in many of our lives. We mostly like it. We enjoy food that is familiar; we are concerned about its cost and convenience. It is an integral part of our celebrations and daily routines, our family and social lives.

When a new way of eating is mandated, all of the necessary changes challenge those attributes and experiences.  Changes like counting calories, making different food choices, recording what we eat and eating at odd times come at us in unexpected ways, upsetting our assumptions about what is safe to consume and disturbing comfortable habits and expectations.

The extent of our responsibility for changing the way we eat has not escaped the notice of the government, our employers, health plans and providers, however.  Their messages to us are an unending stream of general nudges to eat less and differently. In a recent newsletter, the insurer Cigna tells readers to Eat healthy by consuming a low-calorie diet, advice that will unfortunately baffle 90 percent of the population, according to the IFIC survey cited above.  Indeed, the public is only vaguely aware of the government's 'Dietary Guidelines for America' and MyPyramid: 68 percent had never heard of them or had heard of them but knew nothing about them.

These public health messages are of little use to those whose food consumption directly increases their risk for disease or to those with chronic conditions that require specific changes in their eating habits.  While we are responsible for carrying out those changes, our primary care clinicians also bear the responsibility of informing us about our unique need to change what we eat, educating us about exactly what that means for us, helping us monitor progress and modify our plans, and working with us over time to sustain new habits (if we even have a primary care clinician).

Thus, taking seriously the responsibility for dietary changes is pretty disruptive to our clinicians.  Some clinicians have responded to the additional demands on them by sharing some of these tasks with a primary care health care team. Others make referrals to diabetes educators or nutritionists or rely on a care plan, nurse educator and joint use of Web-based education and monitoring appropriate for people with diabetes but less so for the many other conditions requiring dietary modifications.  Some just punt, hoping that their advice and a couple pamphlets will spark our impulse for self-preservation and we will leap into action.

But the responsibilities clinicians bear are modest compared with ours.  Making significant dietary changes over time is wildly disruptive to us and those with whom we live.  Shopping, preparing, eating and monitoring all have to be done with knowledge, skills, resources and attention. How can our clinicians better help us approach these formidably complex tasks?

Here's an idea. In this vivid talk [start at 5:05], Dr. Victor Montori of the Mayo Clinic tells about what one of his patients must do to address his high blood pressure, diabetes, his weight and the events in his life that compete for his attention.  He describes how guidelines-based care and pay-for-performance incentives inadvertently undermine this patient's willingness to take action.  And he proposes that clinicians reorganize the care they deliver to 1) take into account the burden of treatment demands; 2) organize care to minimize disruption and 3) order treatment priorities from the patient's perspective.

There are few of us whose lives are not so full of responsibilities that we would not benefit from our clinicians' recognition of the level of effort required of us when they recommend complicated changes to our daily routine. At a time when patient-centeredness in health care is a concern of policy makers and clinicians alike, Montori's approach increases the likelihood that we will be able to act on our own behalf.  In seeking to mitigate the treatment burden by recognizing both the demands of the treatment and the context in which each patient must meet those demands, this care is consistent with the Institute of Medicine's definition of patient centered; that is, it is respectful of and responsive to individual patient preferences, needs and values.

The IFIC survey gives us new opportunity to reflect on just how far we are as a country from knowing how to take on this crucial task eating better that gives us the best chance of living long and well.  It also shines a clear light on the leap in knowledge, skills and attention that will have to be made by many of us who are diagnosed with nutrition-sensitive conditions asas the incidence of pre-diabetes, diabetes and food sensitivities continues to rise.

I'm struggling to make that leap today and it is not easy.  Despite existing efforts to help us change what and how much we eat, we are going to need a little more help.

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman

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Diet and Nutrition   Inside Healthcare   Jessie Gruman   Make Good Treatment Decisions   Promote your Health  

Comments on this post
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dirk says
May 16, 2011 at 7:56 PM

these kind of fundamental lifestyle changes (and it is a matter of changing one's way of life not just a contextless "behavior")are hard to make even when one wants to make them and most folks haven't come to that place, especially when they are being told by someone else to make the change. This relates to an often more fundamental problem which is that when sickness/injuries strike most of us just want things to return to their previous state, to get "it" fixed, to get our lives back as they were. When this return to life as before doesn't happen there is mourning work and other fundamental adjustments to make and these will take time, care, and effort not usually afforded to us in this quick-fix/short-term-treatment age. Information is very important in terms of telling us what needs to be done but the hard, all too human, work is learning how, and this isn't just a matter of "cognition" as the new neuroscience of our affective lives tells us.

This Business of Being Patients Is Far From All We Do | says
May 20, 2011 at 10:37 AM

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