I want to thank Dave for kindly inviting me to be the guest blogger for Cognitive-Edge this past week. I will end my blog series with a topic he is also researching: Improving management of chronic illnesses in today’s society. Five years ago I became involved in researching how people with diabetes can be better supported with their diabetes (self-)management by the professional healthcare community. While this is based on research in progress, I do want to present two points: 1) Healthcare professionals are still, by and large, stuck in a conventional expert normative paradigm of treatment, “tell and explain” and ignoring a naturalistic approach — discovering the context in which the patient operates to collaboratively tailor effective solutions. 2) Ironically through default of the healthcare community, patients are leading the way in exploring innovative approaches to managing diabetes as chronic illness.
Diabetes is a chronic illness that, if not well managed, can lead to devastating complications. These include, blindness, heart attack, kidney failure, amputation of limbs, depression and premature death. There are now around 246 million people affected by diabetes worldwide and the total cost of treating and preventing diabetes in 2007 amounted to $232 billion. And the problem is only growing, and quickly. You can find an excellent overview of facts at the International Diabetes Federation website with more detailed explanations of what this disease is as well. I will not go into the details of the disease itself.
There is no cure for diabetes, only management of the condition on a spectrum from excellent to poor. At its core, diabetes requires the management of blood sugars within as close to normal levels as possible. That is a ‘round the clock, 24/7 regimen involving diet, exercise, administering medicine, testing blood sugars and managing stress levels — all by the patient. If the patient manages diabetes well, the risk of diabetic complications mentioned earlier can be reduced and possibly prevented and the patient can live a relatively normal healthy (long) life. Management requires on the part of the patient knowledge about the disease, an ability to interpret data about how the body is responding to the variables: food, exercise, medicine and emotional changes, and all in real time. This 24/7 regimen is emotionally exhausting, which in turn influences one’s sustained ability to manage one’s blood sugars. So in addition to having a good grasp of the science of diabetes a patient must also have enough emotional skills and stamina to manage the emotional impact. One could go so far as to suggest that to manage diabetes well, you have to be a medical doctor with degrees in diabetes, the emotional side of diabetes, nutrition and exercise physiology.
So what will it take for a patient to succeed? This question can in part be posed for any chronic illness, like Parkinson’s, multiple sclerosis, Crohn’s Disease, although what’s unique to diabetes is that the patient is responsible to a much larger degree to administer his or her own care based on constant assessments, decisions and real-time actions. To answer the question posed I would like to use Aaron Antonovsky’s theory of Sense of Coherence (SOC). When he researched how people under adverse circumstances managed to succeed, he found three key components: Comprehensibility, Manageability and Meaningfulness.
Comprehensibility in our case means that the patient understands what is going on. For example, if one eats simple carbohydrates (like white bread or cake), blood sugars will rise fast, but if one eats complex carbohydrates like beans or dense grain breads blood sugars will rise slowly. Manageability means that the patient perceives he can influence the circumstances. For example, if one chooses to eat two cups of pasta to keep blood sugars in target range one needs to inject 4 units of insulin. Meaningfulness refers to “why is it really worth it for the patient to learn all this stuff and manage diabetes 24/7?” Here many patients temporarily lose sight of the goal, the reward of doing all the work. If you prod however, they uncover their very personal reason why they want to ensure their health: to see their grandchildren grow up, to travel in retirement with their partner, to start a second career.
These dimensions refer to the “why, what, how and when” something needs to be done in order to manage diabetes. The answers to these questions depend on the unique and very individual contexts – e.g. work, family, neighborhood, culture – within which the patient lives because remember, so many aspects of managing the disease are affected by these contexts, and, the patient must self-manage diabetes. Since the medical doctor does not come home with a diabetes patient, the patient is largely his or her own healthcare provider!
The Complex Challenge
So, the challenge that has stood in front of the healthcare community for decades is how to motivate and mobilize the patient to understand, design, manage, maintain and continuously improve their own systems of self-management. Consider too, no two days are exactly alike, even when they are, the body will not necessarily respond identically, and diabetes is a progressive condition and changes over time as does one’s physiology. It is truly a complex environment. To help make patients successful, this requires a clinical approach based on discovery, dialogue, an inquiry-based coaching style and creating a partnership between provider and patient so that the expert approach can be applied appropriately – i.e. after the context has been discovered.
Unfortunately, today’s healthcare system is designed to provide services through the expert medical paradigm of “diagnose-cut-cure” and “tell & explain.” This paradigm is controlled by the medical expert and often devoid of any unique patient context. It is ill-equipped – forgive the pun – to deal with the true function of the health care provider regarding diabetes, to empower the patient to provide the necessary management to prevent diabetic complications. In-fact, the current paradigm causes what would be considered insanity to an objective observer. The health care system as currently designed provides financial incentives to experts to deal with the consequences of poor management — the complications of diabetes. Surgeons now amputate limbs and insurance companies pay for it. However, there is no significant amount of money allocated for education, and there are no incentives to run a system of inquiry-based coaching and support that can prevent these complications. Nor is there any respect for such an approach. Dialogue and inquiry-based coaching skills are not taught at medical school. In fact, most medical students receive one to two days total education about diabetes in all their years of schooling. Again, the goal is making quick diagnoses, and due to managed healthcare, seeing as many patients as possible in an hour. Under the current expert paradigm the patient who fails to manage his or her diabetes is quickly and simply classified as non-compliant as a certified diabetes educator explained to me last night during dinner.
In the research my network is conducting around improving patient performance with diabetes management we began by interviewing people with diabetes from all walks-of-life. Some manage their diabetes well, others poorly, some have lost both legs, others have little or no complications. Using explorative questions as much as possible we asked them to tell us their story. To date we have gathered more than 100 stories. Many respondents e-mailed or called days afterwards to tell us how helpful it was to them to share their story. Testimony to the power of descriptive self-awareness and not a surprise if you are a member of Cognitive-Edge!
We are also learning that many people, sometimes despite horrifying complications, are happy. Many are proud of how they manage diabetes and have feelings of a “sense of accomplishment for a job well done.” Frequently those interviewed pointed out that the disease is giving them a new sense of appreciation for life, valuable friendships through support groups, discovering their own strength and courage, humility in the face of worse conditions and so forth. Some share that they are now highly motivated to eat healthy and exercise regularly and they feel good about that.
In addition to the understanding that living with diabetes can give one something positive, another emerging insight is the potential power of patients using their own positive emotions to help themselves manage their diabetes. Contrast this with the current healthcare system that focuses almost exclusively on negative emotions. Medical professionals try to motivate patients through fear around complications and guilt around poor management. A quick trip to the bookstore will show that many medical experts write about how to cope with depression and diabetes or with diabetes burn-out. Again the negative emotions seem to be central to the medical community and leveraging the power of positive emotions to manage your diabetes is ignored! But there is a glimmer of hope in an emerging trend in chronic illness which I will touch on shortly.
Patients leading the way
That brings us to where we started regarding patients leading the way with innovative approaches. Examples abound. The Patient Mentor Institute in the U.S., funded by a grant from the pharmaceutical, Sanofi-aventis, trains people with diabetes who have proven to be successful at managing their diabetes deliver informative and motivating programs to fellow patients sharing their personal story. The program has rapidly grown over the past 4 years. Today it has more than 60 patient presenters – called champions – operating nationwide. Another example is the Divabetic organization that attracts women to fun events and then educates them about diabetes through certified diabetes educators. Novo Nordisk is sponsoring this grass roots movement that is growing fast. An enormous amount of diabetes blogs, like DiabetesMine and community diabetes health web sites like Tu Diabetes, have sprung up where patients share information, experiences and feelings and educate and support each other. A UK based website has made 50 oral stories from people living with diabetes accessible. And, Amazon has one book now listed that coaches patients to better management through the use of positive emotions titled, The ABCs Of Loving Yourself With Diabetes. Three other books I can cite that reveal this emerging trend in chronic illness are The Five Gifts of Illness about Crohn’s disease, Blindsided about multiple sclerosis and Strong at the Broken Places that features living with various chronic diseases.
The need for the Cynefin Framework
The current health care system is stuck in conventional expert and normative thinking and patients are taking it upon themselves to push through to a more effective and emotionally satisfying approach. Bill Polonsky, a noted psychologist and founder of the Behavioral Diabetes Institute in San Diego told me peer coaching is the next major advance in diabetes care and most likely also in other chronic diseases. We are seeing that emerging trend of patient experts leading the way instinctively sharing their stories and coaching each other. In the network’s research we are designing a coaching methodology that is consistent with the naturalistic and descriptive self awareness approach. One aspect of it will be to begin with the patient’s own storytelling so that the various patient specific contexts can be discovered.
We aspire to offer this approach to the medical community as we believe that unless they are willing to adopt a more patient-centered approach using naturalistic methods, chronic illnesses will bankrupt our societies.
Central to this approach is an ability to switch perspectives from complex to complicated to simple and we are therefore not suggesting that the expert paradigm is not valid. We are suggesting that experts need to extend their intervention and behavioral repertoire so that they can make an informed choice as to when to use an expert “Tell & Explain” approach and when to use a collaborative inquiry based coaching approach based on patient engagement.
Some awareness in the medical community is apparent. Consider for example Kaiser Permanent’s four habits model of clinician-patient communication that is based on spending more time in inquiry with patients before any diagnosis is made. This is an improvement in the face of Jerome Groopman’s findings in his bestselling book “How Doctors Think,” that doctors typically interrupt their patients within the first 18 seconds of a consultation. Patient and author Michael Weiss and co-author Martha Funnell, a certified diabetes educator, advocate a patient empowerment approach using inquiry based coaching techniques in their book “The little Diabetes Book you Need to Read.”
The time has never been more ripe for use of the Cynefin framework advocated at this website to research and design a promising way forward for our healthcare systems to deal with chronic illnesses.