Helping Patients Make Informed Decisions Now Harder Thanks to Range of Treatment
MANAGED CARE February 2001. ©MediMedia USA
The duty of informed consent necessitates that physicians discuss with their patients the realistic expectations and risks associated with treatment. Consider diabetes. In my early career, there was some indecision about whether "tight control" of diabetes actually produced substantially better outcomes than what could have been called, "standard management." Today, a preponderance of evidence indicates substantial benefits are gained, in terms of reduced morbidity, improved longevity, and quality of life, when diabetes is managed aggressively.
This message has filtered fairly well through the primary care network. Most internists and family physicians seem to be aware that standards of practice regarding diabetes have become more demanding over time. One thing we have learned is that the relationship between control and outcome tends to be linear, in the sense that there are no real "plateaus" in the management of this disease, where the patient can pause and enjoy a relatively large improvement from a modest effort. Instead, continued gain depends on continued work.
This work demands commitment, skill, experience, and effort from the patient and the doctor, as well as the office staff, the patient's family, and others in the clinical neighborhood. Inevitably, some physicians and offices are better equipped to provide a "strong" level of intervention for diabetes than others.
This creates an ethical problem that did not exist in the days when we were unsure as to how much precision mattered. When no protocol shows a distinct advantage, there is no duty to inform. Today, it would seem that physicians should inform their diabetic patients that there is a range of management tactics, encompassing dramatically different burdens and benefits.
It is clear to anyone who has done peer review that there is a wide spectrum of competence with diabetes care among primary care physicians. (Of course, there is also a spectrum of competence among diabetes specialists.) Yet, even among the best-informed and most-enthusiastic practitioners, setting up an office to deliver "optimal" care is almost impossible unless the practice focuses nearly exclusively on diabetes.
Constraints relative to staff mastery, scheduling and resources, record formats, even the layout of the examining room — completely independent of patient or payer mix — generally work against achieving the best results. Even the typical interruptions that a primary care physician takes for granted can break the concentration needed to deliver superb diabetes care in a primary care setting.
This does not imply that a respectable and adequate standard of care cannot be delivered in a typical office. I emphatically do not believe that patients with diabetes should all be referred to single-function, specialized clinics. Like most chronic diseases, the bulk of diabetes care will continue to come from generalists for the foreseeable future.
The simple solution, "Just send everybody to a specialist!" reduces to absurdity when generalized over a population. What I am pointing out is that, in diabetes care and other circumstances, the difference between "adequate" and "superlative" treatment may be enough to warrant explicit disclosure.
So, if proper informed consent starts with realism, many physicians ought to be saying something like this to their diabetes patients:
"You have a choice here. My practice will do the very best job it can at helping you manage your condition, but it simply isn't equipped to provide you with the comprehensive services you might be able to find at a dedicated institution that does nothing else but diabetes care.
"Such places exist (perhaps far away). What we do here is called standard management. It's infinitely better than no management. If you are determined to control your diabetes to the ultimate degree, you might want to look into your options for an aggressive program.
"While you are thinking, here is something to consider: It's possible that you might live 10 or 20 years longer with fanatic control than the average diabetes patient who is managed conventionally.
"It's conceivable that a lot of your waking hours during those years would be occupied with diabetes care. You will need to become the world's expert in your own physiology.
"What I can offer you is my best advice and care, based on the understanding that it might fall short of what you could possibly accomplish with a highly specialized institution.
"There is a price either way. You may find yourself swinging between these options over the course of your life."
Now, suppose this analysis is more or less accurate. Doesn't the same ethical reasoning apply to many conditions? Maybe not for treatments like flu shots, for which excellence consists simply of executing a procedure according to protocol — but certainly this applies across much of the repertory of primary care. Whether it is cardiovascular or cancer risk, sports medicine or marital counseling, — there is certainly someone, somewhere doing it better. So, what?
Some of us master obstetrics, psychiatry, orthopedics, or metabolism. No one is the master of all. The ethical burden on the generalist is not to apologize, but to bring reality into the discussion in a way that recognizes that there truly are competing values at play in health care.
Physician-performance measurement is one of the most problematic issues in health care. Comparing patient experiences between practices is still an infant science. Yet, there are topics throughout the field where common clinical intuition leaves no doubt that some practices or practitioners obtain better results. This imposes a delicate ethical burden on the "average" performer.
It is amazing and gratifying how many people understand and accept this as just another fact of life.
The challenge for the designers of the new health-care system is to distribute proven-best practices as widely as possible throughout the network, without anyone being deceived that care is actually uniform.