growth of miraculous methods and frightening risks that will make ... In the next 15-25 years, we will learn how to minimize ..... It would probably have amused my.
Medical Etfhics minhe Net 25 Years 0
RICHARD G. TIBERIUS
SUMMARY In the next 10-1 5 years most of the major ethical dilemmas facing family physicians will grow more acute. This is not to imply that things are getting worse. On the contrary, it is the simultaneous growth of miraculous methods and frightening risks that will make the dilemmas more acute. In the next 15-25 years, we will learn how to minimize the risks. Several major ethical dilemmas of medical practice are reviewed from this perspective. Finally, some issues are considered that do not fit this pattern and that have the potential to become a much greater challenge to humanity. (Can Fam Physician 25:73-78, 1979). Dr. Tiberius is an assistant professor in the department of Family and Community Medicine, a research associate in the Division of Studies in Medical Education, and an educational consultant for the Educational Development Office, all at the University of Toronto. Reprint requests to: R. Tiberius, University of Toronto, Division of Studies in Medical Education, 121 St. Joseph St., Toronto, ON. M5S lA1l I RONICALLY, MY MOST useful guide into the misty future of medical ethics is something said to me 25 years ago by my grandfather. He was not a physician but a shoemaker-the Old World kind who made shoes by hand for individual feet. One day, after complaining of aching feet from a new pair of shoes, I asked him if he thought things were better in the old days when shoes really fit because they were all custom made. His answer applies to medical practice today: he said that modern machines and methods have made things better and have made them worse, both at the same time. In his childhood many people could not afford shoes, but those who could got individual attention. Today most people in our country have several pairs of shoes but only by an occasional coincidence does a pair feel as though it were made for one's foot. Our modern health care system rivals CAN. FAM. PHYSICIAN Vol. 25: JANUARY 1979
"A course may teach knowledge about ethics, or understanding of ethical systems, or moral reasoning, but all the moral reasoning in the world is useless in the head of a student who lacks good moral reflexes. Some of the most carefully argued moral schemes have been used to justify murder, cruelty, and geno-
cide."
our industrial complex in the production and delivery of services to the people. But it has grown worse as it has grown better-it is now available to all, but in a more impersonal way. Had my grandfather lived longer he may have envisioned, as I do, a time in the distant future when we may have the advantage of our modern methods
without the disadvantages. Imagine standing for a few minutes in the measuring compartment of a computer-assisted shoe making machine while it designs your shoes, a unique one for each foot, accommodating every bone and bump while correcting for weaknesses. This fantasy may give the impression that I am one of those incurable optimists who believes that the antidote to inhuman technology is more technology or the proper interpersonal context. This impression would be correct. I do feel that although many areas of medical practice 73
will challenge us with contradictions of exciting benefits and frightening costs in the near future, in the distant future we will learn how to minimize the costs.
Technology in Medicine A recent article in The Canadian' was entitled: "Megamedicine: It brings new benefits-and new risks." The author, Andrew Allentuck, points out the danger of doctors becoming so dependent on their computer printouts and test results that they forego clinical judgment based on direct experience with the patient. He cites the sad case2 in which a 14 year old boy died after treatment with a highly concentrated saline solution. The treatment was given because his blood tests showed abnormally low salt. But by the time the results arrived (a day later), the boy had recovered from his vomiting and diarrhea, was eating and drinking normally, and therefore no longer needed the saline. The author's conclusion was that the doctor "was treating the test, not the boy." Modern medical technology has become indispensable to family practice. Complex machinery extends the physician's senses, directly, through techniques like fiber optic examination, or indirectly, through laboratory tests and sensitive monitoring and recording devices. Physicians are increasingly able to obtain more information, of higher accuracy. These technological developments will surely continue in the near future as spinoffs from space technology find their way into medical
application. As long as physicians' tools were simple, and the results of procedures easily interpretable, it was relatively easy for them to control the quality of information they received. However, in the future the tools will become so complex that the tests will be performed elsewhere than in the family physician's office, as is now the case with radiology. The interpretation of the results will require technicians and specialists who may never see more of the patient than a blood or urine sample and who may never communicate with the physician beyond a brief statement of lab results. There will be an increasing danger, then, of family physicians fulfilling the gloomy prophesy of Asimov's physician who
practiced medicine blindly, mechanically applying the tools of his "black bag" . 74
In the future more than ever, there will be a need for someone to check on the quality and relevance of information entering the diagnostic and decision making process. This role will continue as one of the central roles of the family physician, who is in the best position to evaluate the abstract information, applying it to the clinical picture of the individual patient. "Picture" is the correct word. The data has to fit a kind of esthetic harmony-it has to fit the picture, or else it must be challenged. The physician must make judgments such as whether to request a second lab test, or when to ask for a consultation. Each judgment is based on a decision about some piece of information not fitting into the picture or pattern which evolves in the mind of the individual, problem solving clinician. The family physician of the future will not be without help from technology, even in this peculiarly human function. Physicians will be able to enter all their diagnostic information, as well as elements of the patient's history and physical condition, into a computer which is programmed to assist problem solving. Of course, the computer will not make the final decision but it can point out things which the doctor may have overlooked, for example, flashing a warning when the drug suggested by the physician is contraindicated because of allergies, or other drugs the patient is taking, or even the patient's genetic characteristics. Physicians will be able to countermand such warnings if they have reason to believe them inappropriate, but the warnings will still serve to alert the physician to the danger. Medical education in the future must produce physicians who can control the quality of the information entering their decision making process and who can reach clinical decisions about people's problems without becoming overwhelmed by these awesome tools which in themselves have no capacity to understand human beings. An accurate diagnosis and appropriate therapeutic recommendation are only half of medical practice. In the carrying out of the therapy there is another intrusion of rapidly growing medical technology. How does a family physician protect patients from the horrors of powerful therapeutic techniques and yet take advantage of their benefits? Since the techniques are so powerful, a slight oversight, incorrect
adjustment or malfunctioning part can be "suddenly and irrevocably disastrous" as Attentuck points out, like the baby who died when his heart was accidentally punctured because of an erroneous radiology report, or the patient who died on the operating table because of a mix up of gas lines. We must borrow from space technology the machines which monitor machines, providing us with warnings when there is a malfunction or an illogical outcome so that we may be alerted to possible machine error.
Confidentiality of Medical Records Today, especially in rural areas away from large hospitals, patients' medical records are kept by family doctors in office filing cabinets. In these settings the doctors' control over records is immediate and physical. Nurses and secretaries can directly control information to employers, police, or insurance companies, refusing anyone without proper authorization. But computer technology is moving quickly. The advantages of computerized medical records are increasingly pressed on the family physician: facilitation of record based research, quick retrieval and transmission of data to and from hospitals, availability of records for emergency use. Patient accounting is almost completely computerized across Canada because of the health insurance plans. Soon the larger hospitals will all have patient medical histories on computers as well. And, as computers become smaller and less expensive, even individual family physicians will be able to have them in their offices. This technological advancement is a mixed blessing. Accessibility is a two way street. The most important advantages of the computerized medical record are realized when individual record banks are connected with hospital data banks-for example, in anticipating allergic reactions during emergency medical treatment. Unauthorized entry into data banks is more difficult to control as the data becomes more accessible and transferable. The shocking frequency of violations of confidentiality are evident in some of the recent revelations of the Royal Commission on the Confidentiality of Medical Records; for example, doctors preparing health reports for insurance adjusters without first seeking proper authorization to review hospital recCAN. FAM. PHYSICIAN Vol. 25: JANUARY 1979
ords. The reports concerned patients who intended to sue the insurance company.3 The latest surprise is that the RCMP has its own locked office in the Ontario Health Insurance Plan building to facilitate their surveillance of the records. Family physicians, in their role as coordinators of patients' health care, will be at the centre of this controversy. Patients will go first to their family physician if they want to see their medical records, or if they want to refuse permission to have their records transferred or released. What can be done in the future, by both the patient and his or her family physician, to prevent the abuse of medical records? The Krever Commission will soon report its recommendations, laying down the rules governing interconnections between computer banks, access, responsibility, and ownership of data banks. Let us hope that their recommendations will supply the basis for further legislation or for dialogue among the Canadian people. Secondly, there are already creative suggestions toward solutions to these problems arising from the technology itself, for example, storing records in several levels of confidentiality, with fewer health care workers having access to the information at each successive level.
Immunology and Preventive Medicine The dilemma posed by mass immunization is of course a phenomenon of the present, but it will become more acute with increasing use of immunotherapy as rising health care costs force us towards prevention. We are already witnessing some things getting better while others are getting worse. Consider the drug that kills one person out of 1000 although the other 999 greatly benefit from it-should we risk this drug on the general population? After all, there are inherent risks associated with all medical procedures, a built-in level of fallibility which we can never completely eliminate.4 A one in 1000 mistake may be acceptable if the consequence is an upset stomach. But if the one in 1000 consequence is death, we may then have to weigh the value of the drug to several hundred thousand people (over the entire population) against the suffering caused by several hundred deaths. Surely the ultimate aim of medical practice has to be more optimistic than CAN. FAM. PHYSICIAN Vol. 25: JANUARY 1979
to make things better for some while making things much worse for others. How will family physicians of the future reach a decision on the value of a particular immunization policy? They rely on clinical trials to identify the optimal treatment, but "the superior therapy is identified in terms of the proportion of cured or improved patients, though this proportion will rarely reach 100%. Consequently, a treatment selected by clinical trial may be inappropriate for some patients who cannot be identified in advance."5 One answer to this ethical dilemma is to turn our future treatment policy toward individualization. If we can find genetic or other markers to indicate individual disease or drug susceptibility, Cinader5 argues, we can increase the probability of benefit to the individual and also focus more accurately on the subset of the population at risk which needs more selective immunization. When an entire population is immunized, there comes a point at which the risk of the immunization becomes greater than the risk of the disease. The ideal, if impossible, policy for any individual is to have everyone else in the world innoculated except himself. The family physician is put in the unenviable position of having to decide between the interest of the individual patient and that of the community. Further, these decisions have to be made in a climate in which the general population is becoming more sophisticated and more demanding of their physicians. What if patients in large numbers begin to ask their physicians to level with them about immunization: "Is it really benefiting me or the community as a whole?" In the future the resolution of this issue should include relieving the physician of the burden of having to make such decisions, a role which can destroy the patient's trust. One way is by means of legislation, such as that for the reporting of venereal disease. However, we must be careful not to become too zealous in saving patients from themselves. Should we have paternalistic laws giving us the power to force a fair skinned, red-haired construction worker to quit his job to save him from subjecting himself to a high risk of skin cancer?
brought enormous benefit to thousands of patients, it has also brought about some subtle changes, particularly in responsibility for health. I often hear doctors complain of offices filled with bored old people visiting the doctor as a way of getting out of the house and socializing with other patients. Add to this group those who are affected by the so called lifestyle diseases like alcoholism, heavy cigaret smoking and obesity, and you have an enormous burden on the health care system by a group of patients who may not be responsible for their diseases but may be responsible for retarding their recovery through negligence in following their treatment or rehabilitation program. This burden on our health care system will increase in the next five or ten years: we will have a larger pension population, a continual obesity problem, and there is evidence of an increase in the consumption of alcohol and cigarets among the young, despite controls on advertising. We are beginning to realize that our health care system, a source of pride for Canadians, is nevertheless too costly. One solution is to move toward disease prevention rather than cure.6 Does this mean shifting some of the responsibility back on the shoulders of the patient? Should we require victims of lifestyle diseases to pay more medical insurance, or is this 'blaming the victim'? These issues will surely come to rest on the shoulders of the family physicians, although they should be borne by the entire society. Society as a whole rarely makes decisions as helpful and specific as setting priorities for health care. More typically, a budget minded government will change the formula for hospital beds from, say, five in 1000 population to four in 1000 without setting out guidelines for physicians as to who will get the beds or what are the criteria for choice. Family physicians may be left to work out the answers to these questions on their own. Moreover, the financial situation could worsen to the point at which our government would be forced to draft legislation assigning financial responsibility for health care. Smokers and drinkers may then be required to pay more for the care of health problems related to their habits, just as negligent drivers must pay increased insurance rates. If such a system were to evolve we must make certain that family phyResponsibility for Health While Medicare has undoubtedly sicians would not be placed in the role 75
of policing the system against abuse (as they are to some extent in Israel). The benefits of the law may be outweighed by the disadvantages of burdening the physician with two incompatible roles: helping the patient and judging the degree to which the patient 'deserves' health care. The role of judge would strain the patient's trust in his physician. And doctor-patient trust is necessary if they are to develop a shared responsibility for health care. Moreover, trust cannot be legislated; the less we trust, the more we legislate. Therefore, our most hopeful approach toward fostering patient responsibility for their own health care may lie, not in legislation, but in the family doctor's style of practice. Physicians must cultivate a style that fosters trust between them and a litigious, demanding and informed population. Patients will have to be better informed than they are now, and more involved in their own cure. Physicians' decisions will have to be made understandable to patients. Also, doctors will have to be firmly supported by organizations like the Royal College or Ministry of Health perhaps through advertising, in their decisions against patients' unreasonable and costly demands.
Patients' & MDs' Rights A recent article in the Toronto Star entitled "The patients doctors hate to treat" 7 brings attention to the little known fact that doctors are under no obligation to minister to every patient who comes through the door. On the other hand, the physician does have the obligation to minister to a patient under circumstances in which the patient has no options. Increasing mobility and urbanization increase a patient's options; these trends are likely to continue. Patients will therefore have both the awareness of alternatives and the transportation to enable them to take advantage of them. My colleagues tell me that a growing number of their patients in the downtown hospital family practice units come from remote areas of the province. Increased choice is basically beneficial to both patient and physician, since it allows for the possibility of matching patients and physicians in their attitudes toward medical care, religious beliefs, and other characteristics, all of which may foster trust and understanding in their relationship. However, there is also a danger that 76
increased choice can turn medical care into a kind of health market in which the patient shops around until he finds a physician who agrees with him, while the physician, unsupported by any sense of commitment or trust from the patient, may begin to lose the attitude of caring and neglect one of his central roles-shepherding the patient through the complex health care jungle. Related to this issue is the right of physicians to practice as they please versus the rights of patients to receive whatever treatment they request. The physician is not a medical gum ball machine, nor is the physician the keeper of the patient's spiritual and psychological life. The conflict between these sets of rights is essentially the dilemma over the right to control the product of medical technology: who will own medical practice? This will be one of the most difficult issues in the next 25 years. Physicians can already perform or refuse to perform abortions. In Ontario, physicians can not only refuse to perform the abortion but can even refuse to supply patients with the names of physicians who will comply with their request. This delay obviously increases the risk to the patient, since risk increases with days of gestation. In this situation, physicians' rights to their individual style of practice seem to outweigh risk to the patient. However, in other cases, patients have a right to refuse therapy which seems to outweigh the physician's commitment to practice medicine as he or she sees fit. Physicians cannot countermand the rights of certain religious groups to deny a life saving procedure for themselves or their children. Nor can they force any patient to comply with the recommended therapy, no matter what the consequences to the patient. In the next 25 years these conflicts will become more acute as we enter the period of the struggle for the freedom of the human mind. Physicians will not be innocent bystanders in this struggle. They will either enter the struggle or become unwilling servants of political leaders or of some special interest groups. Military or political rulers have already found the medical profession a useful tool in extracting confessions, torturing, and developing weapons of destruction. As medical technology becomes more powerful, such abuses of medicine will become
more tempting. Religious cults are becoming more powerful and aggressive. It is not difficult to imagine a time when they will demand to have their own physicians, supported by their own tax dollars, who will serve them as they wish. Imagine, if all of the people with an amputee fetish8 should organize in order to finance one of their members through medical school so that he could perform the desired surgery?. On what grounds could we reject such a medical student? We will have to restrict our own freedom to be in the moral position to influence physicians to practice in a manner consistent with our concept of a dignified and free humanity. Another right demanded by workers, including family physicians, is a continual increase in the amount they can produce in a given time, with a commensurate increase in salaryproductivity increases, things get better. Computerized records, automated laboratory testing services, and other technological aids certainly make the physician's work speedier, but there are certain natural limits to the number of patients with whom any health worker can establish sufficiently intimate relationships to allow a thorough understanding of the patients' problems. Therefore, in order for physicians to increase the number of patients they see in a given time, they will have to evolve into the kind of specialist to whom patients will be referred. They will increasingly rely for referral on other health care workers who know and understand the patients on an individual basis. This statement must sound blasphemous to those-and I am one of them-who see the liaison role with the health care system as one of the essential roles of the family physician. But it is probably unavoidable since there is no doubt that patients need, and probably will demand, someone who understands them to guide them through the health care system. Family doctors will be faced with the painful alternatives of having to accept less money for their services or yield this aspect of their practice to allied health care workers. Nothing less than the definition of family medicine is at stake. Another set of conflicting patients' and physicians' rights provoke ethical dilemmas between groups of patients and physicians. For example, the rights of Canadian trained physicians CAN. FAM. PHYSICIAN Vol. 25: JANUARY 1979
to move to the U.S., or blocks of physicians to opt out of the health insurance plan deprive patients of a choice. In the future, patients are likely to demand more say in, their health care, both individually and collectively. If the trend towards criticism of the professions continues in the media, patients will begin to ask more pointedly whether professionals are capable of separating their own interest from that of the patient.
Research If we are to take the Lalonde report seriously, the research that will likely be of most value to family physicians in the near future will be aimed at disease prevention and the fostering of health habits. How do we get our patients to stop smoking and drinking to excess, slim down, take regular exercise, relax, and so on? Family physicians are being encouraged not only to be consumers of this research but also to engage in it-and they are in a good position to do so. However, as family physicians turn more toward research they will face the risk of eroding their patients' trust and confidence unless careful safeguards are taken to assure patients that their care comes first. For example, the doctor conducting record-based research must ensure that patients' anonymity is preserved and that the use of the data is fully explained to patients before they give their consent. With such safeguards, problems of trust are certain to be overcome in the future, since the patient's long term interest is actually served by research. However, there is a much more serious obstacle to realizing the potentially enormous benefit from research by family physicians. The drive for economy is a double edged sword. It has stimulated the new emphasis on prevention while taking away the means of prevention: grants for community and public health research have been permanently terminated, as of September 1978. The selection of this area for reductions in government spending is particularly unfortunate for family medicine, since the parameters controlling healthy habits are discoverable only in the culture and settings of the various Canadian peoples. Other areas of medical research, for example, the study of disease processes and drug effects, may be just as important but the results can frequently be borrowed from other countries and apCAN. FAM. PHYSICIAN Vol. 25: JANUARY 1979
plied to Canadian problems without grandfather if I had suggested that, inadaptation. stead of designing the shoe to fit the foot, we design the foot to fit the shoe. Teaching of Medical Ethics Even in the teaching of medical What would be a good shape for a foot ethics, things are going to get better anyway? Should we design feet so that and worse at the same time until we shoes could be made for them at little learn some difficult lessons. Medical cost? Or should we design the super schools in Canada have a good record foot, one which could carry out all of of flexible response to changes in the its functions with greater efficiency? demands of medical practice. The ap- But why remain within the limitations proach to implementing a new curricu- of the old model? Perhaps we could inlum emphasis, whether it be office vest the new appendage with features management, emergency medicine, that would give it entirely new functraumatology or tropical medicine, has tions. These same questions applied to usually taken the form of setting up a the human species are much more difnew course. For the most part, where ficult. A foot can of course be judged ethics has been introduced into the cur- by its capacity to serve the whole riculum, it has followed this pattern. body, but how can a person be However, if we try to teach ethics in judged? We are rapidly evolving the potenthis way alone we will fail in several of the most important areas: ethical atti- tial to shape the genetic endowment of tudes, emotions, and behavior. A our species. For the first time, therecourse may teach knowledge about fore, we have to raise a new kind of ethics, or understanding of ethical sys- "should" question. All of the other ditems, or moral reasoning, but all the lemmas discussed above are theoretimoral reasoning in the world is useless cally resolvable, because in each case in the head of a student who lacks we are asking what is the best policy to good moral reflexes. Some of the most follow for the health and wellbeing of carefully argued moral schemes have the human body as it now exists. But been used to justify murder, cruelty in this final area we move to a question of policy to determine what the human and genocide. Indeed, we may consider ourselves body ought to be like, or what ought to fortunate if our courses merely fail to be the physical composition of human have an effect. We could reap an even society? This will be a particularly difmore bitter fruit from our well-inten- ficult problem for those who have tioned ethics course: we may find our- taken humankind as the measure of all selves equipping a generation of mani- things. But even for theists, humanity pulative physicians with a new and is more often seen as created in God's more insidious set of tools to use in image, so that even here there seems to maintaining their authority and advan- be no easy external reference point tage over patients. What is needed in- from which to judge the quality of the stead is a permeation of ethical behav- human species in order to improve it. ior and attitudes throughout medical Even if God has given us the power to students' education, from the tinest redesign ourselves, we have not been mouse sacrificed in a second year lab- given the divine blueprint. On what basis should the donors be oratory experiment to the nature and in artificial insemination? At selected quality of the doctor-patient relation"those connected with this acpresent will as which the student observe ship clerk and intern. The sacrificing of a tivity readily admit that often the only laboratory mouse ought never to be criterion required of a donor is that of carelessly performed. It ought to be being a good-looking young man withtaken as the occasion for an ethical les- out apparent defect". 12 Apparently, son in which the strictest procedure of there is very little investigation about humanitarian killing is enforced. Vol- the family history of previous pathoumes have been written distinguishing logical conditions, the donor's behavdesirable from undesirable doctor-pa- ior or his intellectual development. For those of you who feel that artifitient relationships.9' 10 One of the most important ethical aspects of the doctor- cial insemination will not become an patient relationship is its inherent in- issue for the family physician, let me equality and the doctor's role in restor- choose another route into this same dilemma, one that may hit closer to ing equilibrium.11 home. Mrs. R., a 27 year old married Genetic Engineering woman with two daughters, comes It would probably have amused my into your office for a pregnancy test. 77
After determining that she indeed is pregnant, she asks you if it is possible to determine the sex of the child. You explain about amniocentesis and the risks involved. She then states that she must have the procedure because her husband will leave her if she has another daughter. If she is not carrying a male, she wants an abortion. The husband flatly refuses to come into the office to discuss the issue. Today this may not look like an ethical dilemma. Abortion for sex selection is a trivial and unacceptable reason, period. But the clamor has just begun. In the Philadelphia Enquirer Edelson13 writes: "An increasing number of requests for abortions from couples who want to choose the sex of their children is causing more severe ethical problems for obstetricians and genetic counsellors." The family physician specializes in sensitivity to cultural and family factors influencing the patient's problem. This woman is from a culture in which it is morally accept-
able for a husband to leave his wife if she does not provide him with sons. They were a happy family which is rapidly disintegrating because of a problem which is in your power to solve if you are really interested in helping families. I used this example to show how an issue which is currently the problem of a specialty like obstetrics, can enter the domain of family medicine. Family doctors may not be the ones to use the new genetic tools but they will surely be counselling patients and influencing decisions that are made by geneticists on behalf of their patients.
References
1. Allentuck A: Megamedicine: It brings new benefits-and new risks. The Canadian, Nov. 11, 1978, pp. 5-7. 2. Wilcox LD: Where is my doctor?
Toronto, Fitzhenry and Whiteside, 1977. 3. Claridge Thomas: OHIP official got crash case data, commission told. Globe and Mail, April 21, 1978, p. 1. 4. Gorovitz S, Macintyre A: Toward a theory of medical fallibility. Hastings Centre Report 5:13-23, 1975. 5. Cinader B: Individuality in disease therapy. CMA Journal 113:11-14, 1975. 6. Lalonde M: A new perspective on the health of Canadians. Ottawa, Minister of Health & Welfare, April 1974, pp. 1-76. 7. Katz S: The patients doctors hate to treat. Toronto Star, October 21, 1978, p. C4 8. Tayler B: Amputee fetishism. Md State Med J35-39, 1976. 9. Browne K, Freeling P: The doctor-patient relationship. 2nd ed, Edinburgh. Churchill, Livingstone Lyd., 1976. 10. Balint, M: The doctor, his patient and his illness. New York, Pitman Ltd., 1964. 11. Pellegrino ED: Humanistic base for professional ethics. NY State J Med 77:1456-1462, 1977. 12. Genest JCC: Bioethics and the leadership of the medical profession. Ann R Coll Physicians Surg 129-138, 1977. 13. Edelson E: New Abortion Issue: Sex Selection. Philadelphia Inquirer, August 11, 1976, p. 3-A.
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CAN. FAM. PHYSICIAN Vol. 25: JANUARY 1979
