Current Issues in Medicine and the Scope of Ethics
by David L. Perry
Lecturer in Philosophy, Seattle University
Davenport College/Smiths Industries Distinguished Visitor, 1993
A speech presented on 16 February 1993 to 80 members of hospital boards in Grand Rapids, Michigan:
The word "ethics" is often used as a synonym for morality or values or ideals. But ethics is also sometimes defined as critical reflection on moral claims and moral beliefs, which themselves pertain to ideas about right and wrong conduct, good and bad motives and intentions, and so on. The scope of ethics is therefore enormous, and the problems and dilemmas theoretically subject to ethical scrutiny are endlessly varied and fascinating. This is no less the case in medicine; it often seems that a new ethical issue arises every time there is a breakthrough in medical technology that gives us powers we didn't have before.
In my remarks this morning, I hope to shed some light on a few key ethical issues currently facing the medical community by examining the core principles of medical ethics.
Thirty years ago, a philosopher at the University of Michigan named William Frankena wrote a dense little book with the straightforward title of Ethics. Today that book is still regarded as one of the finest introductions to the field. Philosophers like to produce order from apparent conceptual chaos, to reduce complex ideas to their bare essentials, to point out where our assumptions are unsound or our arguments invalid. William Frankena tried to see if he could take the diverse moral principles and values to which we refer in everyday life and conversation--values like honesty, kindness, respect, and so on--and establish whether there were any that were truly basic, that served as a foundation for other principles.
Frankena concluded that there were two foundational principles of this kind, namely compassion and fairness. I'm persuaded that Frankena is right, and I'd like now to suggest how other ethical principles more specific to the medical profession can be categorized accordingly.
Many of the traditional values and ideals of the medical profession can be seen to be forms of compassion. 0 Health care professionals have historically seen their primary duties as beneficence and non-maleficence. These general duties in turn translate into more specific commitments to save lives, to restore health, to prevent and cure disease, to heal wounds, and to alleviate pain and discomfort. These commitments are what make medicine a truly noble profession.
From the basic principle of fairness, on the other hand, we can derive a more concrete principle of patient autonomy, which has received more attention in the medical community during the past few decades than it did previously. Respect for patient autonomy has undergirded our present system of laws regarding informed consent, with their requisite duties of professionals to ensure patients' understanding of their diagnosis, their prognosis without treatment, treatment options, risks, side effects, et cetera. Patient autonomy is also the driving force behind "living wills," durable power of attorney, and other measures designed to ensure that patients' preferences regarding medical treatments will be upheld in the event that they become permanently incapacitated.
The philosopher Sissela Bok has written very perceptively on the question of whether it is morally permissible for doctors to lie to patients or to withhold key information about their diagnosis or prognosis. (See her 1978 book, Lying: Moral Choice in Public and Private Life.) Bok points out that doctors choose to distort or conceal information from patients for many reasons, such as: ". . . not to confuse a sick person needlessly, or cause what may well be unnecessary pain or discomfort. . . ; not to leave a patient without hope, as in those many cases where the dying are not told the truth about their condition; or to improve the chances of cure, as where unwarranted optimism is expressed about some form of therapy. Doctors use information," Bok says, "as part of the therapeutic regimen; it is given out in amounts, in admixtures, and according to timing believed best for patients. Accuracy, by comparison, matters far less. Lying to patients has, therefore, seemed an especially excusable act." Bok notes that apparently for reasons like these, a principle of veracity or truthfulness is absent from virtually all the historical oaths and ethical codes of physicians.
Sometimes doctors argue that patients don't want to hear bad news, "that they prefer not to have to face up to serious illness and death." But Bok contends that "when studies are made of what patients desire to know, on the other hand, a large majority [over 80%] say that they would like to be told of such a diagnosis. . . . Lies place [patients] in a position where they no longer participate in choices concerning their own health, including the choice of whether to be a 'patient' in the first place. A terminally ill person who is not informed that his illness is incurable and that he is near death cannot make decisions about the end of his life: about whether or not to enter a hospital, or to have surgery; where and with whom to spend his last days; how to put his affairs in order--these most personal choices cannot be made if he is kept in the dark, or given contradictory hints and clues. . . . The very fact of being so ill greatly increases the likelihood of control by others."
A sense of fairness also drives our dissatisfaction with our nation's present system of allocating scarce medical resources. While recognizing the imperative of setting priorities in the face of mounting financial constraints, we nevertheless seek to ensure that the rights of vulnerable and needy people are not violated. A commitment to fairness entails the development of theories of distributive justice.
In this country, the lack of a comprehensive national health care system has forced individual states to create their own priorities and plans. One of the more interesting and controversial of these is the program created by the State of Oregon.
In 1987, Oregon state lawmakers, facing dramatically increasing health care costs, decided to eliminate Medicaid funding for organ transplants and use the funds saved to increase coverage for pregnant women. In effect, then, the state advocated a theory of distributive justice that affirms some needs to be more important than others. As a result of that decision, a young boy died of leukemia because a bone-marrow transplant that might have saved his life was no longer funded by the state. That event inspired state officials to rethink the whole system of priorities.
The state eventually passed laws intended to guarantee every Oregonian some sort of health benefits. First, most employers would be required by 1995 either to establish a health insurance benefit package for their employees, or to be taxed by the state to an equivalent dollar amount. Second, an insurance pool will be available for people who either don't qualify for Medicaid or who can't obtain health insurance because of pre-existing medical conditions. And third, Medicaid coverage would be extended to all Oregonians living below the federally established poverty line. (Previously only people with incomes less than 50% of that line qualified for Medicaid in Oregon.)
The most controversial part of the Oregon plan is a priority ranking system for medical conditions and treatments to be used to establish a minimum benefit package. The priority system was created by the Oregon Health Services Commission, which was appointed by the governor. That commission took over 10,000 diagnoses and treatments and collapsed them into a more workable 709 items that paired conditions with treatment, such as appendicitis/ appendectomy. Then they outlined 17 categories including "acute fatal," "chronic nonfatal," and "comfort care," placed each of the 709 condition-treatment pairs into one of those 17 categories, and ranked treatments within the categories according to a formula that employed measurements of quality of life and clinical effectiveness.
It's important to note that ever since 1982, the state had encouraged public discussion on how health care should be prioritized, and used public hearings, community meetings, and telephone surveys to solicit comments. The scope of these efforts was criticized for not including enough members of groups who would be most directly affected by the new system, such as Medicaid beneficiaries, minorities, and the working poor. But debate on the plan continued in the state legislature, which was required to decide how far down the list of 709 conditions and treatments the state should provide funding, but which was not allowed to alter the commission's list.
In July 1991, the legislature voted to appropriate funds to cover the first 587 items on the list, meaning that items 588-709 would not be covered by the state. Among the conditions and treatments that would not be funded were chronic bronchitis, surgery for lower back pain, and treatment beyond comfort care for extremely premature babies. As if to respond to the 1987 event that spurred the plan, the priority system did include several types of organ transplants, including most heart, liver and bone marrow transplants, but excluded transplants for alcoholic cirrhosis of the liver.
As an incentive to health care providers to participate in the plan, the law would grant them protection against malpractice suits, professional disciplinary action, or criminal prosecution, in cases where they refused to provide services not covered under the state plan.
Many people strongly objected to certain aspects of the ranking system, especially the judgments of quality of life, such as the placement very far down the list of treatment for newborns weighing less than 500 grams and having fewer than 23 weeks gestation. The reasoning behind that ranking, though, was that such newborns rarely survive even with treatment, and almost always have severe mental and physical disabilities.
Some critics have contended that the state should not have set up any rationing system, but rather should have attempted to lower the costs of health care administration or raised taxes to increase available revenues. Even the supporters of the law admit that it is not terribly fair to ration health care for the poor when the rich still have access to any treatment they can afford. But they point out that health care for the poor is already rationed, and that the present system is worse than the Oregon alternative, since at least the Oregon plan would give all of the state's poor access to most basic health services.
Since the plan involves state uses of federal Medicaid funds, it has to be approved by the Department of Health and Human Services, and so far [i.e., as of February 1993] that hasn't happened. Former secretary Louis Sullivan refused to approve the plan last August, primarily due to concerns raised by disabled people that it would discriminate against them. Oregonian officials then made some changes to the plan, including raising the rankings of some treatments to the level where they would be funded by the state, and it was resubmitted to HHS in November. During the presidential campaign, Bill Clinton expressed cautious support for the plan, and Senator Gore strongly opposed it. As of now, Hillary apparently hasn't made up her mind about it, so it's unclear what will become of Oregon's plan. [Author's update: For current information on the Oregon Health Plan, visit http://ohppr.das.state.or.us/.]
Although the controversy surrounding the ranking system is unlikely to subside in the near future, I think that other states can learn quite a bit from the process of public debate that led to the creation of Oregon's health care priorities. It's clear that our country cannot afford to provide every conceivable treatment to every person having a legitimate need for them, but it's also imperative that our efforts to reform the current system must be guided by the principle of fairness, augmented by considerable community input and discussion.
Even when distributive justice is not at issue, health care professionals sometimes disagree about what is the most compassionate or fair thing to do is in particular cases. This is especially true in regard to incompetent patients like the severely retarded, who may be unable to understand their condition, let alone choose among various treatment options.
Some of you may recall the case of Joseph Saikewicz, a man who spent most of his life in state institutions for the retarded. Joseph's IQ was estimated to be ten, his mental age as approximately two and one-half years. He could communicate only by gestures and grunts, and he responded only to gestures and physical contacts. His health was generally good, though, until 1976 when at age 67 he was diagnosed as having an acute form of leukemia that was invariably fatal. Chemotherapy was able to bring about remission lasting a few months in between 30 and 50 percent of cases of this type, but the results were generally poorer for patients over 60. Of course, chemo also frequently produces serious side effects such as anemia and infections, not to mention violent nausea.
At the request of the institution where Mr. Saikewicz lived, a probate court appointed a guardian ad litem with authority to make decisions regarding his care and treatment. The guardian studied the matter and concluded that it would not be in Mr. Saikewicz's best interests to have the chemotherapy, reasoning that his illness was incurable and that he would not be able to understand the treatment nor the discomfort that it would likely produce. This decision was affirmed by the courts, and Mr. Saikewicz died a few months later.
This is a tragic case, one in which there was no thoroughly good choice. Since Mr. Saikewicz was unable to make an informed decision on his own, others were forced to decide for him. Was it better to spare him the discomfort attending chemotherapy, or impose it on him in order to grant him a few more months of life? Given the fact that his incompetence made him extremely vulnerable, did he have a right to any treatment that would prolong his life? If the diagnosis and prognosis with treatment were for many more years of life, perhaps the treatment would've seemed more appropriate.
Most people are able to put their pain in perspective. Understanding the reasons for pain makes it more tolerable. But Mr. Saikewicz did not have the ability to understand what he would've been forced to endure, and for that reason it probably would've been intolerable for him.
It's important to recognize, though, that cost considerations would be inappropriate in this case. Assuming that chemo would be a treatment made available to competent patients similarly diagnosed if they chose it, the decision whether or not to withhold treatment from Mr. Saikewicz had to be made solely on the basis of this patient's best interests, not by an argument that the money for this man's treatment could be better spent on others. It is all too easy for us to be so overwhelmed by the financial constraints facing our health care system that we run the risk of denying equitable treatment for the most vulnerable members of our society.
Disagreements about what is and is not compassionate treatment also arise in reference to competent patients. Perhaps the clearest example of this is found in the currently raging debate surrounding active euthanasia and physician-assisted suicide. As you're undoubtedly aware, the Dutch parliament last week gave its official blessing to these practices, with the important qualifications that patients must be competent (e.g., not comatose) and understand all the alternative treatments available to them, that they must have repeatedly asked to die, that the doctor must consult with another physician experienced in this area, and that a full report must be made to the coroner to help ensure accountability. Also, unlike our own Dr. Kevorkian's approach, most cases of active euthanasia in Holland are performed by the patient's family physician in the privacy and comfort of their own home.
Proponents of these practices argue that for terminally ill patients experiencing unbearable suffering that cannot be fully treated with painkillers, or for patients diagnosed with terminal illnesses that will eventually destroy their minds, it sometimes seems less cruel to administer a lethal drug at their request than to simply withdraw the technologies that prevent their natural condition from killing them. And yet most doctors in this country apparently do not favor the legalization of active euthanasia or physician-assisted suicide, believing those practices to contradict their basic professional commitments. Even in Holland, where the courts have for many years refused to prosecute doctors in this area, anecdotal reports indicate that although doctors involved in such cases believe it to be the right thing to do all things considered, nevertheless they are said to be highly traumatized by the experience, and are unable emotionally to perform it more than once or twice per year.
Once again, whatever position one takes on the justification of active euthanasia or physician-assisted suicide, it's clear that economic or other utilitarian considerations must play no part in such decisions. Many American ethicists have argued that any steps to legalize these practices should only come after our nation has implemented a more comprehensive system of healthcare insurance. Otherwise, terminally ill patients unable to pay for expensive but life-prolonging treatments or worried about burdening their families with enormous bills might be unduly influenced to choose a quick death instead. This is one advantage that the Netherlands has over the United States: its national health care system does not put its citizens under pressure to choose euthanasia solely because it's a relatively cheap option.
One final issue I'd like to address is that of physician self-referral, the shorthand term for situations where doctors have a financial stake in an external medical facility to which they can refer their patients for testing or treatment. These joint ventures or limited partnerships are often very profitable, showing annual returns as high as 50 to 70 percent. On the other hand, in some isolated rural areas they may also provide a needed service otherwise unavailable.
Ethical concerns were raised about the fact that patients are often not told about their doctor's investment in centers to which they were referred, implying that their informed consent to testing or treatment is not being fully respected. Studies have also suggested that doctors may be tempted by these investments to order tests or treatments that their patients really don't need.
In June 1992, the AMA House of Delegates passed a resolution saying that self-referral was ethical as long as physicians disclosed their investment interests to patients up front. But then in December, they reversed course and declared it to be unethical, except in "underserved" areas where needed facilities are unlikely to be created unless doctors themselves provide the financial backing for them. Apparently the AMA reached the conclusion that most existing joint ventures smelled too much like fee-splitting, and posed a grave threat to the professional duty to uphold patient interests over business interests, and that these concerns outweighed the benefits that patients might enjoy from the extra services made available to them.
I personally remain more sympathetic to the earlier AMA ruling that physician self-referral was ethically acceptable as long as the patient was fully informed about the doctor's financial stake and alternative treatment options, and if the patient was not coerced or unduly influenced by the doctor. I think that the AMA's virtual ban on the practice ends up throwing the baby out with the bath water, doing away with legitimate and important services because of the unscrupulous actions of a minority of doctors. But I understand the desire of the AMA not to allow patient trust to be eroded by the perception that doctors may be improperly influenced by financial interests.
Well, I'm certain that in these brief comments I have not succeeded in resolving to your satisfaction any of the more challenging ethical dilemmas currently facing the medical community. But I hope that I have helped you to see new ways to balance the ethical principles of compassion and fairness in assessing any issue that might arise. Thank you for your attention.
(Copyright for the above speech/article is held by the author. For permission to reproduce it, write to DavidLPerry@earthlink.net.)