Case-Based vs. Collective Bioethics: Finding Common Ground in Moral Principles
Abstract—A divide currently exists in bioethics between individuals advocating a broader interpretation of advocacy at local and global levels, and case-based bioethicists whose work applies primarily to wealthier, insured communities. With time, the divide between these two areas of interest may become dangerously pronounced. Some argue that an excess amount of attention is paid to bioethics that pertains to case-based issues, and this attention, they argue, should be better spent considering access to health issues and instances where the poor and powerless suffer from lack of treatment and struggle from rigid class structure. Other bioethicists value the consideration of individual, clinical-based cases of ethical judgment in addition to evaluating societal concerns. As the medical field advances and more options of care become available, important questions arise as to who will be able to benefit from the advances of technology. At current time, and very pointedly in the future, the bioethicists, physicians, nurses, and hospital staff must reflect on the importance of clinical-based bioethical judgment in light of inadequate healthcare allocation in the United States and in the international realm. Ultimately, it is the hope of the medical community that the overarching goals of morality and serving a patient’s interest apply to both individual and society bioethics.
In the field of bioethics, there is a struggle between individual, case-based bioethics, and collective, societal bioethics. With time, the divide between these two areas of interest will become dangerously pronounced. Some argue that an excess amount of attention is paid to bioethics that pertains to case-based issues that are only accessible to the wealthy and privileged. This attention, they argue, should be better spent considering access to health issues and instances where the poor and powerless suffer from lack of treatment and struggle from rigid class structure. Other bioethicists value the consideration of individual, clinical-based cases of ethical judgment in addition to evaluating societal concerns. As the medical field advances and more options of care become available, important questions arise as to who will be able to benefit from the advances of technology. At current time, and pointedly by the year 2020, the bioethicists, physicians, nurses and hospital staff must reflect on the importance of clinical-based bioethical judgment in light of inadequate healthcare allocation in the United States and in the international realm. Ultimately, it is the hope of the medical community the overarching goals of morality and serving a patient’s interest apply to both individual and society bioethics.
Some argue that the field of bioethics has essentially become a source of entertainment, and that it neglects important issues. Leigh Turner, assistant professor at McGill University writes, “Ambitious researchers in bioethics know that if they want to obtain research funds and draw attention to their work they should focus on such topics as embryonic stem cell research, germ line gene therapy and therapeutic and reproductive cloning. These topics practically sell themselves” (Turner 175). In this manner, Turner argues that the topics commonly discussed in bioethics are those that are most popular. Turner continues his argument to state that the 1980s and 1990s marked a time when doctors, philosophers and lawyers addressed topics such as the withdrawal of fluids and nutrition, surrogate decision making, medical futility and physician assisted suicide. Turner argues that these topics no longer have the novelty they once had, and that urban poverty and inner-city violence are rarely addressed. Turner writes, “If clinicians recommend withdrawing treatment from a gunshot victim, and the family wants medical care to continue, then perhaps bioethicists become interested. However, bioethicists rarely engage the legal, economic and social conditions underlying violence in poor communities” (Turner 175). In this manner, Turner criticizes the focus of current bioethicists on the grounds that they neglect the importance of community health and social circumstances. Turner adds to his perspective: “Greater consideration of global ethical issues related to health, illness, and suffering might generate a richer, more meaningful research agenda for bioethics. Otherwise bioethics risks becoming a source of entertainment and spectacle in wealthy societies whose inhabitants overlook the poverty and suffering found throughout most of the world” (Turner 175).
Turner suggests that bioethical issues such as surrogate decision making and withdrawal of fluids and nutrition has lost the novelty that it once had during the 1980s and 1990s. However, in analyzing this argument one notes that it does not recognize the lasting importance of such individual bioethical issues. For example, to a patient whose family is deciding how to proceed in an end-of-life issue, the ethics behind the decision to be made is of serious importance. The patient whose fate is in question, is likely not “overlooking the poverty and suffering found throughout most of the world,” as Turner suggests. Rather, the individual question of how to proceed with the patient’s treatment is important, as it affects the patient’s life in a significant way. Although Turner argues that certain bioethical issues have been discussed during the 1980s and 1990s, these topics remain both relevant and important, having a serious impact on individuals and families receiving care. One can imagine that as the technological aspect of the field of medicine advances, new options will arise that can have life-saving benefits. It can be anticipated that bioethicists such as Turner will be able to point to the lack of resources in places of need contrasted to the excess in places of wealth.
The commonly addressed bioethical issue that Turner refers to includes euthanasia. Euthanasia is a component of bioethics discussed in the academic arena. For example, when one searches Santa Clara University’s Markkula Center for Applied Ethics, one finds case-based bioethical issues based on similar situations that physicians have experienced in the past. In one scenario, a woman has been diagnosed with motor neuron disease five years ago. The disease destroys motor nerves, making control of movement impossible, while the mind remains unaffected. People with motor neuron disease normally die within four years of diagnosis from suffocation due to the inability of the inspiratory muscles to contract. The patient’s condition has been declining steadily. She is worried about the pain she will experience leading up to her death, and is not expected to live through the duration of the month. She asks her doctor to give her diamorphine for pain if she begins to suffocate or choke. This treatment lessens her pain, but it will also expedite her death.
This scenario raises several important questions such as: Does the patient have the right to make the choice to receive diamorphine? Is the amount of time she is expected to live relevant in the decision-making process? Should there be a difference in treatment when a patient is expected to live six hours versus six months? This situation also raises interesting economic concerns. Would legalizing euthanasia create conflicts of interest for the patient or doctor—will patients feel pressured to end their lives earlier in an effort to save money for their families? These are serious questions, with complicated answers that require thoughtful and meaningful discussion and consideration. In this manner, devoting time to the study of clinical, case-based bioethics is warranted, because decisions affect a patient, the patients, family, and ultimately the scope of clinical practice as a whole over time. For while case-based bioethics considers the circumstances of one patient at a given time, each decision contributes to a larger picture of clinical medicine that influences society’s health.
Paul Farmer, a world-renowned authority on tuberculosis treatment and control and attending physician in infectious diseases and Chief of the Division of Social Medicine and Health Inequalities at the Brigham and Women’s Hospital in Boston, has written extensively on bioethics and the right to health as a human right. Dr. Farmer works half of the year in Brigham and Women’s Hospital and the other half as Medical Director of a small hospital, the Clinique Bon Sauveur, in rural Haiti. The hospitals where Dr. Farmer works in Boston are among the best in the United States, while the town he works in Haiti has suffered from violence, dictatorship and infectious diseases. Due to his work in such different settings, Farmer is able to formulate striking observations. For example, Farmer served on the ethics service of Boston teaching hospitals with which he is affiliated. While he considered each case seriously, he realized that the consults were often about too much care, realizing that he was called to examine cases in which care is painful, expensive and prolonged beyond the point of efficacy.
In his work Pathologies of Power, Farmer explains that it is natural for him to make connections between the surfeit on one side—too much care—and the paucity on the other during the time he spends at a clinic in Haiti (Farmer 203). He writes, “As an infectious-disease consultant, I feel that my job in Haiti is to say ‘Quickly, start the antibiotics,’ whereas my job in Boston often comes down to saying, ‘Stop the antibiotics.’ In Haiti I am called to explain, to those who come begging for assistance, that effective treatments for HIV are not ‘cost-effective,’ whereas in Boston I spend much of my time begging patients with AIDS—some of them originally from Haiti—to take these same medications. In Boston I might be alone in witnessing this painful irony, if not for the transnational Haitian janitors who keep the hospital clean” (Farmer 204). Through the irony of encountering Haitian janitors who can relate to the dilemma in unequal access to treatment, Farmer underlines the inequity in global health, calling for more attention to be paid to access to health care. One can imagine that access to health care in Haiti, a country plagued by years of war and dictatorship, differs from Boston in the United States, and Dr. Farmer finds himself in the unique position where he is able to compare the status of health care between the two locations.
In contrast to Leigh Turner, Paul Farmer recognizes the achievements of bioethicists, but promotes an understanding of bioethics that extends beyond clinical cases to include a societal basis of justice in medicine as well. In Farmer’s work Pathologies of Power, he cites ethicist Larry Churchill: “It is not too immodest to claim that bioethicists have had some influence…replacing medical paternalism with patient self-determination and serving as a constructive force in the establishment of more rights and protections for research subjects. Advocacy for a fair system of health care, however, has failed miserably, at least so far” (Farmer 174). Thus, Farmer expresses his agreement with Churchill’s view that bioethicists have made great strides in making health care more ethical in advocating patient rights and providing more protection for research subjects. Through this example, it is clear that Churchill respects the work of case-based bioethics, and realizes its important implications on treatment and the overall picture of health care. Patient self-determination refers in part to the Patient Self-Determination Act passed by Congress in 1990 that requires hospitals, nursing homes, hospice programs and HMO’s to give adult individuals certain information about their rights at the time of admission. This information includes the right to participate in and direct their own health care decisions and the right to accept or refuse medical or surgical treatment. The act further prohibits institutions from discriminating against a patient who does not have an advance directive, or living will. The act also requires institutions to provide ongoing community education on advance directives. The Patient Self-Determination Act therefore illustrates that bioethicists have made strides to improve medicine for a great number of patients.
Churchill’s assertion that “Advocacy for a fair system of health care, however has failed miserably” (Farmer 174), refers to the inability of many individuals to access needed treatment. In this manner, Churchill is suggesting that while progress has been made in making medicine a more ethical practice, only those who have access to medicine and treatment are able to benefit from such achievements. Churchill is referring to the fact that many people are uninsured and are suffering from diseases that can be treated, yet are not able to access care. For example, the number of uninsured Americans is steadily increasing, and is estimated to include forty-seven million people (Goodnough). This means that while patients may be afforded more rights and that while work is being done to consider cases such as end-of-life care, the uninsured population is only able to receive treatment if they are financially able to pay for the treatment themselves. This can become a serious issue when one considers that major surgeries can cost tens of thousands of dollars. For example, researchers examined the costs of treating 12,017 patients undergoing coronary artery bypass graft surgery at five U.S. hospitals, and found that the average bypass-procedure cost was $20,673 (Barry). This is a significant sum of money and patients in need of such a surgery may not be able to receive treatment for their condition, if not financially capable.
In this manner, one can argue that the health care system has “failed miserably” in that forty-seven million people must self-pay for their treatment in the United States, with the possibility that the cost of treatment will exceed their means, resulting in a lack of care. In addition to domestic health care in the United States, when one considers the picture of global health, one notes a world that is ridden with AIDS, malaria and tuberculosis. These diseases, however, are not as prevalent in the West as they are in other parts of the world. One may argue that the bioethical rights and concerns of individuals afflicted by these serious diseases abroad are not adequately addressed, and should be incorporated in a more substantive manner into medical school curricula and the realm of bioethical debate. Leigh Turner’s perspective as pointed out earlier, feels that case-based bioethics neglects to discuss global and societal concerns. However, when one explores case-based bioethics and the societal ethics, including the need to discuss global health concerns and the uninsured population, one realizes that both topics are important, and that discussing one topic does not undermine the importance or value of the other.
While Farmer recognizes the value of case-based bioethics, he also supports the idea that societal-based ethics in general is not adequately addressed. He writes, “[The formulation of case-based bioethics] assumes a great many givens—a wealth of clinical alternatives, a battery of life-support mechanisms, access to potentially unlimited care. These are the quandaries of the fortunate. But in working for the health of the poor, we are faced with a different set of moral issues. Will this patient get any treatment at all? Will her survival be considered less precious than a fourteen-dollar savings in basic medicines? These are not typically quandaries that the well-instructed medical ethicist can resolve by deciding when or where to flip a switch” (Farmer 175).
Farmer ironically calls commonly discussed bioethical issues “quandaries of the fortunate.” This means that the scenarios that arise in discussing case-based bioethics assume the patient whose fate is to be determined is already in a privileged position, as the patient is receiving care. Farmer does not undermine the importance of providing such a patient with ethical, considerate care, but simply points out that from the moment that such a scenario is discussed, the patient is in a privileged circumstance. As Farmer’s discussion continues, he states that the concerns of the poor are quite different from those who can readily access health care. For the poor patient, such as the patients Dr. Farmer treats in Haiti, access to treatment cannot be assumed, simply because it is not always available. Through this example, it becomes clear that the fields of case-based bioethics and societal bioethics are indeed different in that they address topics that involve a different set of assumptions and goals. As Farmer writes, “These are not typically quandaries that the well-instructed medical ethicist can resolve by deciding when or where to flip a switch.” Yet, in pointing out the differences between his experiences in Boston versus his experiences in Haiti, Farmer overall emphasizes the importance of providing just care and access to health care to society as a whole, while simultaneously recognizing the importance of case-based bioethics as he treats his patients in Boston. In this manner, Farmer does not devalue the importance of case-based care, but encourages that more attention be paid to social justice issues in bioethics.
In analyzing the efforts of case-based bioethics and societal bioethics, one realizes that the two fields overlap, and in fact, rely on one another. Societal bioethics is a crucial component in advocating the rights of patients to receive treatment. Once a patient is able to receive treatment, the concerns of case-based bioethicists become important. These concerns determine the patient’s fate and must be treated with great concern and care. As physicians like Dr. Paul Farmer seek to work for the poor in Haiti to provide treatment to patients, bioethicists, physicians and philosophers in other areas work to ensure that patients receiving care are properly informed and are treated fairly. Thus, the combination of societal care and case-based care provides the optimal foundation of morality in medicine. However, it is also important to consider that the needs of the poor, as address in societal based bioethics, are not discussed as frequently in the realms of bioethics. Thus, societal bioethics and case-based bioethics are of equal importance, and both prove themselves worthy of serious and informed discussion between philosophers, clinicians, and advocates of social justice and equality.
As the former editor of the New England Journal of Medicine, Dr. Joseph Garland once wrote, “There is no more place in this country than in any other for self-congratulation on the quality of medical care that has been developed until the utmost has been achieved in making it available to all levels of society, in all places and at all times.” With the ongoing research in the medical field, and anticipated breakthroughs in the near future, one must consider not only the future of medicine for the American with health insurance, but one must also reflect upon the health of those unable to receive care. This description may manifest itself in the tens of millions of uninsured Americans—and with the current healthcare crisis can neither predict nor necessarily meaningfully assuage fears that this number will increase. Without serious implemented change in the healthcare industry, serving all patients will remain a distant goal. It is for this reason that both future clinicians and policy makers actively try to meet the needs of all patients and find measures to provide care to all.
This scenario also has important implications abroad, as the future of epidemic diseases such as AIDS and malaria will persist. While great advances are being made for AIDS vaccines, important questions arise: Will poor patients in Africa have access to the scientific innovations of the Western World? Will the ongoing research be used to truly reach and alleviate the pain of those most in need? In our ever-changing and advancing world, the broader implications of research and advancement are critical points of interest. However, health care professionals must also maintain a balance in realizing the application of important medicines to patients who are capable or receiving care, to ensure that what is right medically and in the needs of the patient is carried out. Thus, it is a combination of individual care and societal care that makes for the most appropriate understanding of bioethics. Societal concerns include providing health care to a great number of individuals, as case-based bioethics ensures that moral standards are upheld once care is available. Ultimately, the considerations in caring for a society’s health and an individual’s health overlap in a profound way. The fundamental values of morality, truth and justice, apply in both circumstances, and bioethicists should strive to maintain these ideals in the face of complicated and difficult to discern circumstances that will inevitably arise by the year 2020.
Barry, Theresa. “Heart Surgery costs 83% More in US than in Canada,” 2005. http://www.bloomberg.com/apps/news?pid=10000082&sid=a4J.ER8r4CrM&refer=canada
Farmer, Paul. Pathologies of Power: Health, Human Rights, and the New War on the Poor. University of California Press, 2005.
Goodnough, Abby. “Poverty Rate Falls, but More Are Uninsured.” The New York Times, 2007.
Turner, Leigh. “Bioethics Needs to Rethink its Agenda.” British Medical Journal, January 17, 2004.