Our society loves common sense. We love it in our politicians. In fact, it is the basis of our political system. Democracy relies on the idea that people can make meaningful decisions about complicated issues based on practical reasoning rather than specialized knowledge. But despite the fact that we admire this mental faculty so much, we have a hard time defining exactly what we mean by “common sense”. Here it is: common sense is a response that applies basic logic to immediate fact to resolve an immediate circumstance. It stands in opposition to analysis, both in the problems it is suited to examine and in its weaknesses as a method. The key is time frame. Common sense is good at dealing with problems that don’t have a big history and don’t have a big future.
A good example is confrontation with a snake. If one is walking through the grass and finds a snake in front of them, common sense says, “don’t pick up the snake”. The problem is limited. Who knows what could have been done to avoid the snake in the first place? What future is there in picking up the snake when it is unknown whether or not the snake is venomous? The immediate risk is being bitten. The alternative is not being bitten. The more complicated issue is whether or not to kill the snake. Though many would apply common sense there too, that question may not be so amenable, because killing the snake involves an action which reaches far into the future. A dead snake means more mice, bad news if the one confronting it is a farmer or even if he is not as it increases the risk of rodent borne disease. On the other hand, leaving the snake alive might meant tolerating a venomous creature risking a future bite, especially if the animal is territorial. Overall, making a good call on whether or not to kill the snake requires some knowledge about snakes beyond the fact that they bite and some are poisonous. This is no longer the domain of common sense, it requires some analysis. The weakness of analysis is, of course, that by the time you go back in the house, find your field guide to North American reptiles, figure out whether or not it’s worth killing the snake, go back out and assemble the equipment necessary to accomplish the task, the snake will likely be gone. This is not the sort of thinking or behavior that is most highly valued in our society.
This is why Americans love science. Science looks like common sense. It defines a problem strictly and narrowly, then it attempts to find a practical (based on measurable physical evidence) solution: hypothesis-prediction-test-answer. Science poses its questions carefully, after much prior analysis, to stay within the limits of the method, the simpler the better. The evidence that science accepts is the evidence of our senses and the means we use to extend our senses. Properly employed, science answers the question how. Even though we commonly ask scientific method ‘what’ and ‘why’ the answers we get back are all about how. When we ask “What is the color red?” we’re not going to get back an answer about the meaning of the color to an artist, a truck driver or a bullfighter, we’re going to get back an answer about how that perception gets to the minds of those individuals, an answer about mechanism and composition, not quality. Like common sense, this is a very powerful process. Once the mechanism of a phenomenon is understood, it can be manipulated and either immediately or through time and effort, controlled. Nothing in the natural world is truly beyond our understanding and influence by this method. Nonetheless, scientific method, like a knife, is a humble tool and requires humility from its user. Because it is specific and limited, it does not allow for any incautious use. But because we have come to love it like we love common sense, we use it very incautiously. People have become used to inducing from existing scientific knowledge to whatever desired end, and scientific method and its results have become a panacea.
This has happened partly because humans have it in their nature to use knowledge this way. Our ancient ancestors and indeed our children today, have survived not through careful use of analysis, but through the liberal application of common sense. Burn your hand on the stove or get bitten by a dog and you are not prone to pursue an extensive series of experiments involving stoves or dogs. The common sense response is avoidance. Here is the rub. The fact of the experience, the injury itself, is not the only or even the most prominent fact considered. The quality of the experience, whether it was fearful or painful, is included, and will determine if and how the individual will extrapolate the common sense response to the initial experience to fires, cats, space heaters, lizards, etc. We naturally consider how comfortable or uncomfortable the experience was right along with the actual physical consequences. We have inherent trouble separating these emotional facts from physical facts. So we have trouble knowing how to employ both common sense and scientific knowledge not only because they are inordinately effective in their realms, but also because they feel safe and comfortable. This basic, inborn prejudice is reinforced when these methods get widely misapplied.
Take the problem of malaria. Mosquitoes spread malaria. Common sense says eliminate Mosquitoes and the problem is solved. This lead to widespread use of DDT sprayed onto surface water. Malaria rates did improve in the short-term, but the environment, and possibly individual people, suffered the consequences of the treatment in the long-term. Looked at from the proper perspective, the spraying program was effective. This has prompted some to advocate reinstituting a modified version of it today. The population of certain parts of Bangladesh suffered from disease due to lack of clean water. Common sense said, drill some wells. The incidence of water-borne illness went down. From a carefully limited perspective, the program was a success. However, the ground water was contaminated with arsenic, and the people began to suffer from chronic arsenic poisoning as a result. Genes are destiny. If man is to control his destiny, he must take control of his genes. This is the guiding principle of eugenics. No more needs to be said about the consequences of that endeavor. Those who carried out these projects were not crazy or stupid. They acted on their emotional facts, their benevolent impulses. This allowed them to choose the comfortable, satisfying, wrong method and the method itself then determined how they viewed the outcome. They weren’t standing around while children died of malaria or diarrhea. Their method had the appeal of expediency. They didn’t need to back track or reevaluate their actions, dithering, because the results were clearly visible. In the first two cases, the programs were never reevaluated in terms of the original premise: our actions will improve the health of the population. In the last case, eugenicists never asked what is human and why is it worth controlling human destiny. They substituted the questions for which they already had answers: how is a human composed and how can we improve that composition.
You can’t get the right answers if you don’t ask the right questions. That has become our creed, and we have settled upon it to reconcile physical facts with emotional facts. We choose premises that are amenable to a practical approach, a comfortable approach. The result is a kind of generalized fundamentalism, for what is fundamentalism but a system of thought closed around an initial set of axioms? Medicine labors under such a system. Picture a group of trainees and attending physicians gathered around a patient in the ICU. The patient suffers from end-stage emphysema. “End-stage”- that means that all available medical interventions cannot alter the course of the disease and that course leads to death. The patient is failing and all the doctors can do now is put her on the respirator. The doctors do not want to take that action. They know the patient will never get off the respirator. They know the patient will develop complications and die of the intervention rather than the disease. The family, however, has hope. They have been told to always have hope. They have heard stories of persistence and medical miracles. They want the patient on the respirator. The attending physicians come to an unspoken, unanimous conclusion – ethics consult. When they announce their conclusion, the members of the group will experience a spectrum of emotional responses concomitant with their level of training. The medical students will nod gravely and feel reassured. The residents will groan. The attending physicians will feel a mix of satisfaction and resignation. The medical students think the ethicist will come in with new insights and provide the wisdom to resolve the situation based on consideration of life’s meaning and value and leave everyone involved with a better sense of their own place in the world, their relationship to their own mortality, and the true significance of their actions on the patient’s behalf. The residents know that the ethicist will provide a cost/benefit analysis for all involved, leaving their initial conclusion unchanged, delaying what they already know must be done. The attendings know the same thing, but they know the ethicist will be a valuable liaison to the family, giving them the best chance to carry out their predetermined course of action.
Medical ethics will ask how, as in “how much will it cost and how can I pay for it?” Medical ethics will not ask what or why, as in, “what should I buy and why am I buying it?” No surprises here, every fundamentalist system functions thus. Once a person determines that the only valid source of knowledge is scripture the only real question can be, “what does scripture say about it?” Asking What in such a system will inevitably get back an answer about how. This does not happen because those answering the question are fools, but because their frame of reference allows only one interpretation of the question. Ask a watchmaker, “What is a watch?” and he will likely tell you,”A watch is a portable mechanism for telling time.” The answer does not really tell what a watch is, but how it works, a functional definition. Ask a watch wearer. “What is a watch?” and he will more likely tell you, “a watch is a mechanism I use to organize my activities.” Both responses are accurate, but answer very different questions. The same thing happens to the question “why”. When a person comes to a medical clinic seeking treatment, one of the most important questions the clinician can ask is “why did this patient come in today?” Frequently, neither the doctor nor the patient can answer that vital question. For the patient, some hope exists; there is little for the doctor.
Take the diabetic patient who comes in with an infected leg. He has decided to come in based on his answer to the question, “why do I walk?” If he is a hunting guide, he may feel that walking is an integral part of being human and one of the primary ways humans experience and understand the world. He has come in for his leg. If he is an astronomer, he may feel that walking is a means to get our minds to new information. He has come in for the infection. The doctor, however, does not need to ask the question. His path is clear. The patient has come in for his health. A functional leg is part of being healthy, so the doctor must try to preserve the leg’s function. But if the infection is too deep and spreading so it threatens the whole, then he must amputate. In his fundamentalist system, the patient’s whys are irrelevant. The doctor’s range of actions is constrained by his guiding axiom and his question comes down to, “how much does it cost and how can we pay for it?” He will treat the astronomer and the hunting guide the same way, according to the same guiding principle. Despite the distance between their points of view, conflict between doctor and patient is very unlikely. In this case, as in most, the path from their respective origins converges for a long way. Only at the end, when limbs must be severed, dialysis started does the conflict become obvious. Then the doctor will have to explain his reason for taking the actions he wishes to take and the patient either reconcile himself to that path or reject it.
The doctor may need some help from an ethicist at that point because he may not be able to state the premise for his decisions. He has probably never had it laid out to him in simple terms. The premise of medicine is tough to state because medicine was not delivered unto us like the word of god, it grew. It started as an adjunct to our other survival strategies. As society became more complex, medicine retained the simple premise of a survival strategy – you can’t do nothin’ if you’re dead – and layered upon it various maximizing principles. All of this was an organic rather than a planned process. To summarize, the premise of medicine as it stands today is thus: The physical integrity of the human organism is basic, therefore our goal is to establish and maintain the physical integrity of the human organism. This founding principle seems innocuous. It is common sense. But it is an axiom. Like the Ten Commandments, it twists and tangles as it gets applied to the vagaries of the real world. The premise remains despite those pitfalls because it has the same appeal as other fundamental principles. It looks harmless. In a world of uncertainty where everything is finally an educated guess, it is clear and comprehensible. As such, it allows decisive action, eliminates moral discomfort, and limits conflict. The problem is that it does not eliminate conflict, it merely puts conflict aside.
All encounters with the medical system start at the harmonious end of the spectrum. When a patient comes in with an undiagnosed set of signs and symptoms, they have a limited problem. Their initial interest is in knowing what is wrong and the doctor’ interest is the same. Once the diagnosis is made, things may change. Consider the person who comes in with foot pain. If the diagnosis is a stress fracture, the doctor will prescribe treatment, the patient will devote a limited amount of his time, attention and resources to that treatment, and he will get better. If, however, the patient has pain from diabetic nerve damage, he will not get better. The doctor, though, will not adjust his strategy. Treatment will start with medicines to control blood sugar, blood pressure, cholesterol, and pain. Along the way, lasers will destroy the patient’s peripheral vision to try to save his central vision. Eventually, he will have surgery for his heart disease and more medicines to keep him alive through debilitating heart failure. Antidepressants will treat his feelings of hopelessness as he becomes immobile. He will need surgery for ulcerated feet and dialysis for wrecked kidneys. Throughout this process, the patient, as in the case of the stress fracture, will need to devote time, attention and resources to treatment. But in this case, that devotion is not finite. The disease will require more and more from the patient until it consumes the total of his reserve. At last, his primary, overwhelming occupation will be preservation of his existence in the face of his disease. This chain of events is consistent from the doctor’s standpoint. He acts in accord with his guiding axiom all along the way, in the case of diabetic nerve damage as in the case of the stress fracture.
For the patient, a necessary transition occurs during this process. At some point, he must become mostly about his disease. Furthermore, he must accept the shift in his relationship with medicine. It now preserves rather than facilitates his life, as well as his new purpose. The transition requires a decision, active or passive, on his part. At this point, conflict may arise. However, the process has advanced so far in a step-wise fashion based on common sense rationale that the conflict is ameliorated by the prior investment on the patient’s part. His extensive participation in his medical care serves as its own justification, for him and the physician. The proper emotional facts-on-the-ground are established. Though it does not allow those facts conscious consideration, the medical system drives this process forward and it does so purposefully.
Could it be that this is due to well-intentioned overreaching rather than fundamentalism? An examination of our system’s approach to screening and health maintenance will clear up that confusion. One of the primary screening tests recommended for everyone at age 50 is for colon cancer, specifically colonoscopy. From a patient’s perspective, this is a very good test. It is costly, but it is over quickly and can find and eliminate precancerous polyps. This means that the test offers the possibility of not only preserving life, but of avoiding illness.
Another cancer screening test in wide use today is the PSA blood test for prostate cancer. This is not such a good test from a patient’s perspective. When used as recommended, it may attenuate risk of death from prostate cancer, but it makes illness surer. Unlike the colonoscopy, it aims to detect established disease early, when treatment can be successful. Successful treatment means that the treated disease does not kill you. Certain interventions are necessary to achieve this result, though. Those interventions carry a complication rate so that frequently the patient trades the possibility of illness and death due to the disease for the likelihood of illness due to the intervention.
A third screening promoted widely today is for cholesterol. Surprisingly, this one isn’t such a great deal from a patient’s perspective either. In the average case, when a person discovers through a screening blood test that he has high cholesterol, he will have to take a medicine for the rest of his life, since diet and lifestyle changes are rarely effective. Even in the worst case, he starts out with an 80% chance that over 10 years, nothing bad will happen to him because of his high cholesterol. Even if he takes the medicine, he will still have a 5-10% chance that something bad will happen to him because of his high cholesterol. So the benefit is not detectable on an individual basis. But why not take the medicine anyway? Well, the money could be used for something else, it takes time to acquire and take, and it costs mental energy to remember and worry about. However small, the medicine is a limitation on what the person can do with his current resources. No wonder that at 5 years, half of the people diagnosed with high cholesterol and started on medicine have stopped taking it.
The doctor sees these three scenarios from a different perspective, the perspective of his guiding axiom. In essence, these three screening tests look the same to him; the only difference lies in their risk to benefit ratio. The risk for cholesterol screening is very low. Therefore it is universally recommended. Guidelines suggest starting at age 25 for men. With every revision of the guidelines, target numbers for bad cholesterol go down as subsequent sets of experiments show that lower levels can reduce a 5% risk of something bad happening to a 2.5% risk of something bad happening, lower levels yet can reduce a 2.5% chance to 1.25% and so forth. There is no target level of risk; no one has really considered that from the outset. The target risk is actually 0 by default. This is because the effort to reduce heart disease is driven by adherence to medicine’s guiding axiom, precluding outside considerations in forming the initial intent. The drive to lower cholesterol targets will continue until it bumps up against risk of harm from the treatment or prohibitive economic realities.
Colon cancer screening is also universally recommended, though less strongly than cholesterol screening. The average person’s risk of colon cancer is already low and the procedures involved in screening carry some risk to be balanced against the benefit. Because of the limited nature of the intervention, the test does not put doctor and patient at crossed purposes, except on an economic basis, because the most widely recommended test is colonoscopy. There are other proven tests for colon cancer, the most significant being fecal occult blood testing. This test is cheap, has no complications and is easy to do. Colonoscopy is promoted more widely for several reasons. It does make more money for the people who do the test, but that is not the principal motivation. The occult blood test must be done yearly, so people will be more likely to skip it. Positive tests must be followed up with colonoscopy; another chance to fall through the cracks. If everyone had a colonoscopy they would have the maximal opportunity to have precancerous lesions detected and removed, established cancers diagnosed, with fewer “missed opportunities” in the process. The scope has a higher rate of serious complications, but those are usually manageable, a known risk which can be traded for the unknown individual risk of colon cancer. It is also about 5 times more expensive, over 10 years, than the occult blood test. However, it offers the best opportunity at a single encounter to establish and maintain the physical integrity of the person standing before the doctor, so it is the most widely recommended test.
PSA screening for prostate cancer is the least recommended cancer-screening test of the three. The problem is that prostate cancer is most often an indolent process. Most of the time it won’t cause the bearer any harm. In a minority of cases, it is a rapidly progressive disease resulting in severe symptoms and death. The screening test cannot distinguish between these entities. Even the biopsies that must follow a positive screening test can’t predict the outcome of the disease with a high degree of certainty. As a result, many people who would have remained asymptotic until they died from other causes must receive treatment for prostate cancer to catch those cases that would have progressed if left alone. The treatments are far from benign. All can result in chronic problems with bowel, bladder and sexual function. Therefore the lukewarm recommendation while the medical community works to devise better tests and less harmful treatments. In the meantime, the actual screening rate, with current tests and treatments, for men in the target age group is about 50%. This rate is about the same as the much more highly recommended colon cancer-screening rate. This is not easily explained on the basis of patient acceptance and cost alone.
All these guidelines bear the mark of ethical fundamentalism’s influence on medical science. Individual physicians’ behavior fully reflects the power of that influence. A 2006 survey revealed that 87% of male physicians in the target age group had PSA screening. To the individual physician, these tests look much the same, because the doctor bases his evaluation on principle rather than statistics. Each test may detect a maximal (fatal) threat to the physical integrity of the patient before him. The tests involve risks of lost function, which are well defined, manageable, and sub-maximal. The screening process trades a small, unknown, uncontrollable, catastrophic risk for the risk of a more certain, treatable impairment. This is entirely in keeping with the doctor’s guiding principle, taken from a fundamentalist’s perspective. The tendency is to recommend all screening tests which have demonstrated any significant utility.
So, medicine’s premise since it is the basis of a fundamentalist system, does not act as a loadstone indicating the general direction of travel, but as a black hole, drawing all action toward itself in a gentle, but inescapable arc. The longer an individual remains in its pull, the closer they come to the singularity, where they become defined by their role as a patient.
As a thought experiment, imagine a similar situation arising in a highly empowered president’s council on physical fitness. Tired of laboring in obscurity and flush with money and power, the council decides to scrap its old mission statement and take on a new statement of purpose: Everyman an Olympian. As the project begins, sports and physical education in the schools expand. Recreational facilities in communities improve. These changes produce a huge increase in fitness for the population. For each individual, this means increased energy and fewer health problems to slow them down. This is the point of facilitation. The project has improved the participant’s capacity to pursue their life’s purpose, whatever that may be. With increased availability of training, many people who would never engaged in sports become accomplished athletes. The participants are happy. But the project managers are not. Because their goal is absolute, they are frustrated with the low number of Olympic level performers produced. The next step is a study to find out who is failing, who is succeeding, and how (not why) these successes and failures happen. To convert everyone to the methods of the successful, the managers redouble their efforts, requiring participants to devote a proportionally larger chunk of their resources to the project as well. Soon, the maladies of high level competitive sport begin to afflict the populace: overtraining, burn out, performance enhancing drugs. Eventually, an adverse effect on population fitness will show up in the data.
However, that effect will show up only as the whole project approaches collapse. Until that point, the statistics will show apparent improvement. Increased efforts will produce improvements at the margins that will offset the effects of the harms. The harms considered by the project in terms of its goal. The harms outside those considerations are limited only by the ability of the managers to recruit more resources from society and the participating individuals. That ability will tend to expand as the project expands due to a normative effect. Part of this is economic, “in for a dime, in for a dollar”, but part of it is social. As success in sports gains increasing recognition, people become increasingly motivated to succeed in sports. The project begins to create its own demand. Suggestions for moderation no longer seem moderate. Proponents of the Everyman an Olympian effort may now say. “They want the chance to be Olympic athletes, so what are you going to do?”. This is the point of “optimalization”. At this point, achieving the project’s goal requires gradual abandonment of other purposes by participants in pursuit of the goal until that pursuit becomes their singular purpose.
Of course, this state of affairs would be ridiculous. No one has to be an Olympic athlete, and no society would adopt such a silly purpose for itself, much less allow such fundamentalist devotion to that purpose. But this situation is analogous to the situation in our medical system, a situation that also serves as its own reductio ad absurdum. “Do no harm”. Most think of this as the basis of medical ethics. It is not, nor was it ever. Maintaining the physical integrity of the human organism has always been the guiding purpose of medicine. Early proscriptions against harmful techniques were simply acknowledgement of technical limitation. As more effective techniques presented themselves, practitioners readily adopted them, despite those techniques’ invasiveness and manifest immediate harms. An ethic of harm versus benefit displaced the old “do no harm” principle as a logical progression rather than a revolutionary change.
In reality, medicine’s guiding axiom is a practical ethic, unconcerned with the watch-wearer’s version of the questions: “What is harm?” and “What is benefit?”. Interventions receive a limited evaluation on their own terms. Over the course of the intervention, how does it affect the physical integrity of the individual? Does it get them closer to an Olympic medal or doesn’t it? Just as in the Everyman an Olympian experiment, the end point is “optimalization”. This is precisely the situation in medicine. To participate in the system, one must sign on to the premise. The only way to limit progression toward that end point is to limit participation. In the end “patient” and “autonomy” are not truly compatible terms.
Just as the Council on Physical Fitness co-opts and elaborates on a cultural institution (recreational sport) to further its ends, medicine, too, co-opts the venerable belief in health as a reflection of morality in service of its goal. Of old, illness was seen as a curse and health, a sign of divine favor. Remnants of that belief persist in our language and in the way we think about health. Medicine has grown in that soil. But it has never made a concerted effort to transcend its roots, as they offer a pool of sentiment which can serve the goal of the project. Again, the issue was moot when medical interventions were limited, but no longer.
Most preventive treatments, both primary and secondary, entail real and immediate harms in exchange for delayed and uncertain benefits. So, it is very helpful if the promise sustaining the system is moral as much as material. Non-compliant and non-adherent are pejorative terms at their core. If you comply with treatment, put up with the side effects, fight your cancer, sacrifice parts of your personal identity in favor of your identity as a patient, you will not just survive, you will triumph over illness. Not that medicine is concerned with that end. Its goal remains establishment and maintenance of physical integrity. The moral reward is merely a means to that end. The moral reward allows people to sign on to real sacrifices for the sake of the statistical likelihood of a benefit.
But once one appeals to emotional facts, it is hard to keep from being ruled by them. People expect a survival rate from CPR with return to previous function of 50% or greater. That number is durable across time and multiple groups sampled. In reality, the average survival is 10% or less. This statistic bears a direct relationship to the individual case; it is not a complex exercise in clinical epidemiology. However, it gets lumped with every other statistic pouring into peoples’ minds. These statistics and the arguments derived from them flow from a culture of expertise, a world of watchmakers. As such, many of these arguments and their supporting statistics, which come from the world of systematic, scientific empiricism, do not meet the test of personal empiricism. Dead people do get resuscitated. We hear their stories. There is a conflict. The solution is Jim-Bob’s razor, and people use it to cut through the dilemma of scientific rationale and ethical fundamentalism in medicine.
Orthogonal to Occam’s razor, this logical short cut comes from repeated contact with evidence from the world of experts that appears to clash with personal experience. This is how it goes: I have been baffled by bullshit, therefore, everything baffling is bullshit. Once the statistical evidence is labeled for rejection rather than reconciliation, individuals refer to basic principles instead to guide their decisions. Evidence of this response is visible in other perplexing behavior. Despite repeated counseling on the difference between viral and bacterial infections, many people insist on antibiotic prescriptions for cold symptoms. They do this based on personal empiricism. The doctor gives them a complex, nuanced explanation involving microbiology and epidemiology. They know they have taken or someone they know has taken an antibiotic for the same symptoms and then got better. They don’t want the medicine because they have devised an alternative to infectious disease theory or because they are stupid, they have simply applied Jim-Bob’s razor and gone with the answer it gave. The popularity of alternative medicine is due to the same thought process. Rather than an impenetrable research base with qualified conclusions, alternative medicine offers a clear set of claims and values personal empiricism over scientific empiricism. One needn’t adopt the associated philosophy to become a devoted user of reiki or moxibustion; one need only use the razor.
But the impact of this method on the inappropriate use of antibiotics and alternative medicine is nothing compared to the impact it has in promoting moral basis for personal medical decisions. As the tradition of viewing health as a moral good gets used as a reference for making choices, it moves from the realm of vague notions, like fairness or the work ethic, to the realm of real things, like kinship and financial obligations. People begin to view health as a moral obligation and an end that we as a society ought to try to guarantee. This notion leads to the idea that healthcare is a social right, but it is distinct. Understanding that distinction makes many of our schizophrenic healthcare policies and practices understandable as well.
If pursuing health is morally right, then no treatment, however costly or debilitating is unreasonable in principle. Fighting cancer always makes sense. If the decision to seek medical care is a moral one, society should not intercede in that decision for the individual. Without the opportunity to see to their own health, a person loses their chance to be good. So, prevention and health maintenance fall to the individual, but if the individual cannot accomplish those tasks and presents with acute illness, he then gets maximal care. Because the acute care reflects on collective morality, that principle holds even when the individual doesn’t want maximal care. A Jehovah’s Witness may refuse a blood transfusion, but not without a fight.
Medicine labors under these attitudes as a burden, but it rides upon them as well. The notion that health is right justifies medicine as a social institution. This idea links medicine’s premise to the larger world of social and cultural values. But it is linked as a separate entity. In addition to medicine pursuing an internally consistent policy of zero risk, implying that health is not just right, but is possibly an inherent right, it is the autonomous patient who expects a 50% recovery rate from CPR, a cure for their metastatic cancer, life free and clear. As long as medical care adheres to the premise, the physicians, nurses, hospitals, administrators and all are willing to go along as the concept of health as morality loops back on them. We allow that the physical integrity of the human organism is not just a means to an end but a moral good itself. Piecemeal decisions are the standard method. Brick by brick, we can pave the way from amputating a diabetic toe to a hemicorpectomy. Medicine aims to establish and maintain the physical integrity of the human organism.
To most people, however, physical integrity finally is a means rather than an end. Society as a whole hesitates to assert that relationship because our traditions value the beating human heart as a good in itself. Medicine is happy to pursue the heartbeat over the personality from an ethical perspective, as long as the patient or their surrogate goes along. For example, the options medicine offers in advance directives are technical contracts, not ethical contracts. The meaningful ones ask the patient if they want artificial respiration, CPR, feeding tubes or IV fluids. The medical community sits back, arms folded, minding its business while the patient picks through the complex options available. The patient’s use for his health is no part of that business. End of life decisions are the most dramatic example of this process, but it holds across the board.
Epidemiological information is without inherent content. Like a photograph of a landscape, it is strictly representational by nature, our interpretation gives it broader meaning. Take, for example, mortality statistics in the developed world versus the third world. High death rates from infectious disease are seen as primary social problems. The infrastructure must change to correct high rates of infectious disease, and the branch of medicine involved is public health with the infectious disease specialists fighting a delaying action at the rear. High death rates from cardiovascular disease are seen as primary medical problems. The cardiologists are in the lead, while public health plays a minor supporting role. In each case, the medical community will validate its interpretations of these two sets of data based on future trends in death rates. In each case, the trends will indicate success.
For individual members of the two societies, the results differ profoundly. The person growing up in the third world will not succumb to diarrhea as an infant, and will not contract AIDS or TB as an adult. Medicine has facilitated his development as an individual. The developed world person will experience an extended life as well. Along the way, he will develop diabetes and heart disease, but the medical system will manage those conditions ever more effectively. His longevity entails progressive restriction to patienthood. Has medicine facilitated his development as an individual? If it has, it was certainly less effective than in the case of the third world man.
A medical system guided by a real ethic rather than fundamental adherence to a subconscious axiom would see the first and third world in the same light. It would provide the first world population with a cheap, readily available “polypill”, treat the cardiac surgeon as an unfortunate last resort, and focus on changing the infrastructure to improve public health. This situation exemplifies the discord at the root of medicine’s relationship with the individual patient, and possibly offers the start of a solution.
The physician’s decision making process is not the same as the patient’s decision making process. The premises themselves are different. The physician wants to sustain life, and the owner of that life wants to live it out. Without reconciliation, medicine will remain adversarial, expensive, intermittently harmful, and paternalistic. Medicine must achieve that reconciliation; society at large cannot, it is too invested in the morality of health. Medicine, having ridden along on that investment, must endure the true consequence, the one behind the dysfunctional decision-making and unrealistic expectations. Medicine must answer ‘why’ for itself. Though that would be a disruptive process, it would also offer a unique opportunity.
Medicine’s current concept of patient autonomy is broad in principle but narrow in fact. The patient may choose, but only among a series of “how”s; the “why”s are off-limits. Thus the DNR checklist with its menu of procedures really is the best that we can do right now. True, patients will frequently check yes to CPR and no to intubation or defibrillation. No matter how little sense those choices make from a practical standpoint, medical professionals are much more likely to adhere to those specific “how”s than a more general statement of intent. Looks like common sense. But it leaves for the patient to sort out on their own the underlying questions regarding what these procedures may do for the patient, why the patient might want that desired outcome, and what sacrifices that outcome entails.
So patients resort to familiar knowledge and principles (common sense, morality, Jim Bob’s razor), make the piecemeal decisions which medicine is positioned to accept, validate medicine’s concept of autonomy along with it’s underlying axiom via their participation, and allow medicine to maintain a comfortable sense of neutrality. The medical community is like a man standing at the edge of a pit of quicksand with his hand extended while another struggles in the mire. “See how he struggles,” says the man at the edge, “if only he could reach my hand.”
To change that situation, maybe the medical community should put its ethicists front and center rather than in the back offices of the ICU and demand some dynamism from them, some tears and shouts rather than a back rub and a number to three significant digits for the quantity of angels dancing on the pinhead. Maybe the profession should formulate a statement of purpose to guide its actions. Maybe the scientific data should get an ethical review before it goes to the watchmakers.
Medicine must do this for itself. This means disavowing the emotional facts which have helped sustain medicine as an institution, but warped its relationship to the individuals it wants to help. Revising the role of ethics also means revising the current concept of autonomy. To avoid the pitfalls of our ingrained thought processes and to avoid an inevitable slide back into fundamentalism, medicine must start to offer choices based on why rather than how. To accomplish that end, medicine must say for itself what it will and will not do based on a definite ethical purpose. Starting from that point, both parties can get to that most vital question in the exam room, ‘Why is this person here today?’. Joint decision-making is then truly possible. Patients can then have a real basis for questioning their care as well, rather than the current, pitiful situation where patient input resulting in avoidance of a medication error or incorrect surgical procedure is deemed a triumph.
This sort of change is risky; it amounts to leaning over the edge of the quicksand pit, holding out a stick. It may lead to fragmentation and subsequent conflict between the various subsets of the medical community. But that is beginning to happen already over economic considerations; at least a redefinition of medical ethics would yield a higher, more self-conscious level of dispute. Worse, the medical profession may find itself subjugated to the same forces that it passively allowed to pull it along. It may get yanked into the quicksand pit of common sense, comfortable fundamentalism, and cultural tradition regarding health with which the lay public struggles. If so, we return to the current situation with a better sense of our own place in the world and the true significance of the medical systems actions on patients’ behalf. We will all be in the quicksand together, which is the truth anyway. But that is another problem altogether.