The Arthritis NewsletterSpring 2011
"Bringing Change to the Medical System": A Patient Perspectiveby Gordon Whitehead
I want to open my remarks with a bit of history. In 1806, Napoleon abolished the Holy Roman Empire, a political structure that had first been set up by Emperor Charlemagne in the year 800 AD. Those of you with an interest in European affairs may remember that the Holy Roman Empire, among other things, was said to be neither holy, nor Roman, nor an empire. However, I don’t propose to discuss its political character here. But what is especially noteworthy about the Holy Roman Empire’s sudden demise in 1806 is that its Curia (or Department of Legal Affairs) then had a backlog of unresolved legal cases that was almost a full 132 years in duration. Think of it— a new case filed before the HRE Curia in 1806 would, in the normal course of affairs, be heard in 1938, just prior to WWII. That’s what you call building a backlog!!!
Now, I don’t wish to imply that there are all that many parallels between the Curia of the Holy Roman Empire and our own medical system, although what the demise of the HRE does show clearly is that institutions can be terribly slow to change, terribly slow to recognize how far away from their original mandates they have grown, how far off the mark their conceptions of customer service can become, or how very distorted or fossilized over time their grasp of reality can come to be. Our Medical System is by its nature highly resistant to change and almost feudal in terms of its many and complex professional class structures. And perhaps — partly as a consequence of its now old-fashioned and rather tangled or fenced-off sets of work-place relationships—- our Medical System has great trouble moving information around effectively and efficiently and finds it especially difficult (despite periodic bursts of rhetoric to the contrary) to truly embrace patients as genuinely equal partners in systemic reform and system design.
I had never questioned the need for medical care to be anything other than “patient-centred”. What else could health care possibly be? Aren’t patients what health care is all about?
I remember having registered a reaction of some bafflement when I first heard the expression: “patient-centred health care”, a phrase I first heard uttered in reverential tones suggestive of some sort of novel policy direction. Up to that point, I had never questioned the need for medical care to be anything other than “patient-centred”. What else could health care possibly be? Aren’t patients what health care is all about? Could the medical system have somehow have arrived at an independent, patient-free existence, and thereby acquired a sort of legitimacy separate and apart from its mission to treat patients? Consider for a moment how odd it would sound to us to say: “student-focused education” or “driver-focused road repair”? Yet the very necessity of enunciating, in formal policy terms, that the health care system needed to be “patient-focused’ implied that it had somehow become something other than that. Perhaps it is no longer Holy, nor Roman, nor an Empire?
Some 5 years ago I attended an annual meeting of the American College of Rheumatology. I jotted down some very startling figures then, which, though American in origin, are probably reasonably reflective of Canadian figures. Here they are: 1 in 6 Americans has a chronic condition that inhibits normal life; 69% of hospital admissions were for chronic conditions, and chronic conditions comprised 80% of hospital days; 83% of medical prescriptions were written for chronic conditions, and chronic complaints absorbed 66% of physician visits. Even in American Emergency wards—the very epicentre of acute care, one would imagine—56% of visits were chronic in nature. In brief, chronic diseases in the USA consume 70% of all medical spending and fully 95% of spending for the population over the age of 65.
This is scary stuff because as we all know, our health care system has grown up around the provision of acute care, not chronic care, and the so-called “Silver Tsunami” representing our aging population, with its ever more voracious demands for much more chronic care, is now getting ready to come rolling in from off shore. To quote Tennyson: “Break, break, break, On thy cold grey stones, O sea!!”
How can we build an effective medical system that properly addresses chronic care, both in terms of ongoing research and treatment?
Much lip service is currently paid to the need to shift the focus of our medical system from acute care to chronic care, but progress in this direction can only be said to be exceedingly slow, uneven, and at times scarcely visible. Why? Well, resources are terribly tight and those already stressed components in the system with a long-established hold on chunks of the health care budget are not willing to relinquish their money in order to let some other group get up and underway. Then too, on every front, the public demands more services, more treatments, more drugs, more expensive equipment. Ministers of Finance (be they federal or provincial) now look absolutely panicked every time fresh demands arise for expanding the health care budget. In consequence, politicians no longer want to touch health care as a subject or even to raise the matter. There are no wins in it. Increasingly, they see the whole field as an incomprehensive bramble bush, drawing on plant growth hormones, or as some sort of ravenous fiscal Rottweiler, all unhappy snarls and bite — and no cuddle.
So what can be done? How can we build an effective medical system that properly addresses chronic care, both in terms of ongoing research and treatment? How can we shift the bow of this health Care Titanic, so as to avoid a collision with a fiscal / demographic iceberg?
I am grateful to Dr. Robert Kane of the University of Minnesota School of Public Health for some of the ideas that follow. First, let us try to clarify what is it we want to achieve in our approach to chronic disease. Let me give you one list suggested by Dr. Kane:
- We want to manage the disease as well as possible, so as to reduce the impact and frequency of eruptions in disease activity
- We want to prevent, postpone, or minimize, as the case may be, the patient’s transition from impairment to disability and from impairment to handicap, and,
- We want to enable and to encourage the patient to play an active role in managing his / her disease while avoiding, to the greatest possible extent, turning the disease into the dominant force in the patient’s life.
I like Dr. Kane’s list and, as a patient and consumer, I particularly like his third objective: “Encourage and enable the patient to play an active role in managing his/ her disease”.
But where did we all learn to be patients and health care providers? How did we learn to interact with one another and to try to discover a common language or strive to reach a shared understanding? Where else but in acute care !!! And acute care roles and learned relationships are not very amenable to Patient-Caregiver partnerships. The “acute care” model is by its very nature a short, highly focused, and prescriptive interaction, with the physician cast in the role of Healer, High Priest of Medicine, Lecturer, Oracle, and Master Navigator. The patient, on the other hand, is cowering mendicant, vulnerable, awed and perhaps temporarily catatonic, and most usually uninformed, likely meeting up with a novel condition for the first time ever. Everyone is playing in an acute care film titled: “Brief Encounters”.
…an informed and alert patient is every bit as much a potential health care resource as is a trained nurse, a doctor, or indeed, any other health care provider.
On the other hand, chronic disease is by its very nature destined to be a long-running film, with numerous prequels and sequels to accompany the main feature. Remember this: A patient with a chronic disease must somehow incorporate knowledge and awareness of the disease into daily existence. The chronic disease patient, over time, forms an intimate relationship with chronic disease that, sadly, can often be many years in duration or not infrequently life-long. Yet, the patient is the only major player in the Health Care System who is currently available to work for free, because the patient’s reward for good performance is not a function of money but hope for an improvement in personal health or an improved understanding of the nature of the particular disease that may carry with it other tangible benefits!! So here we have a totally free resource, a great bank of unemployed and under-employed principals costing tortured health care budgets, not a penny!!! The chronic patient remembers his / her disease history, its impact on life skills and activities, treatments that advance betterment (or the reverse) with a grasp of detail beyond any other available agent of memory. So — an informed and alert patient is every bit as much a potential health care resource as is a trained nurse, a doctor, or indeed, any other health care provider.
In my view, a future medical system intended to advance chronic care that does not succeed in re-shaping patient-physician, patient-caregiver roles is doomed to failure. The patient must have access to timely and accurate advice about his / her disease and has to be prepared to share responsibility (and risks) for its management with the physician / caregiver. Decision-making has to be shared and communications between the parties in the health care equation have to be deeper, more profound, and ongoing.
Okay, so how do we do any of this in a world of the (often unavailable) physician or if available, the 15 minute, one-question-per-appointment-over-stressed-acute-care-focused-GP? One approach is to provide the patient with extensive outside counseling and information resources featuring current, readily understandable, and pertinent information, tailored to be disease-specific. Then, if you are the GP / Specialist in the piece, try to cease becoming unavailable to your patients by routinely clogging up your appointment calendars with routine “see me in 3 week appointments. ” Instead, the well- informed patient might request an appointment only when experiencing a “meaningful episode” based on a personal knowledge of significant symptomology, or perhaps after pre-screening by a nurse practitioner, a physiotherapist, physician assistant or similar. Why not give each patient a Health Care Passport — or a Clinical Guide path— or a comprehensive electronic record— that permits observation, in a systematic way, of one or more key condition parameters so that the observed state can be seen against the expected state. If the patient remains in the expected course, nothing needs to be done, but if the clinical course deviates, it should trigger close attention or possibly intervention. Such Patient Health Passports, Clinical Guide paths, or e-records could contain flow sheets capturing patient histories, status displays, lab tests, treatment modalities, drug information etc. The patient needs to understand the guide path system and to function as a full partner in the ongoing monitoring of symptoms so that a patient -driven intervention can occur early and when needed.
Time does not permit me to go into an exhaustive description of the research needed to underpin and sustain the re-shaping of medical roles and relationships or how we can best configure, package, and disseminate the essential disease-management information for patients to enable them to more fully assume their partnership potential. At the Arthritis Research Centre of Canada here in Vancouver, we have a number of research initiatives underway in this domain, including an “Animated, Self-Serve, Web-based (ANSWER) Tool for People with Early Rheumatoid Arthritis.” I’m certain that some of these initiatives and many others of like nature will feature in numerous collegial conversations before this meeting ends. But how it is done is less important than the fact that it is done. It simply must be done if we are to succeed with the effective identification, treatment and management of chronic diseases in BC —- and in Canada as a whole.
It is no exaggeration to say that we are nearing medical system melt-down, as information technology, “WIKI” style participatory knowledge sharing / partnership design mechanisms and novel collaborative professional structures progressively rip through the worlds of journalism, law, economics, and business. And yes, medicine will come next!!
Why don’t we try to avoid the fate of the Holy Roman Empire by making some timely and vitally needed adaptations now?