Euthanasia, the ending a human life to avoid suffering, is controversial, as, like abortion, it confronts our belief in the sanctity of human life. Because of advances in medical technology and increased longevity, we can now preserve and extend life in a variety of ways, even when someone is critically ill—and as a result, we face new and difficult end-of-life decisions. Many families now grapple with the issues of euthanasia and physician-assisted suicide. Euthanasia translated from Greek simply means “good death.” Euthanasia can be either passive or active. In passive euthanasia, treatment is withheld or withdrawn with the expectation that a patient will die sooner than they would with continued medical intervention. In active euthanasia, a patient’s life is terminated using medical interventions (e.g., administering a lethal dose of medication). In addition, euthanasia can be voluntary, when it is at the patient’s request, or nonvoluntary, when a patient is incapable of voluntarily expressing their wishes (e.g., a patient in a persistent vegetative state) and the decision must be made by someone else acting in their best interests. Figure 10.3 What role should the field of medicine play in end-of-life decisions? Should modern medicine facilitate termination of a patient’s life in at least some situations? These are ethical concerns that did not face our ancestors, who did not have the technology to make these questions possible. (credit: “100614-A-2082K-024” by U.S. Army Photo/David Kidd/Flickr, CC BY 2.0) While voluntary active euthanasia is illegal in the United States, in countries such as Switzerland, the Netherlands, Belgium, Luxembourg, and Canada, various laws mandate dosages for lethal injection for the terminally ill who request help with this form of euthanasia (Ashford 2019). Voluntary passive euthanasia is legal in the United States and involves the withholding of lifesaving or life-sustaining measures with the consent of the patient. The most common form of this kind of euthanasia is an advanced directive known as a DNR, or “do not resuscitate,” order, in which a person provides written instructions ahead of time, in the form of a “living will,” not to restart the heart if it stops and/or not to put the person on a respirator if they cannot breathe on their own. Nonvoluntary passive euthanasia is the same withholding of treatment but without consent of the patient. This form of euthanasia can occur when a person has not made a living will, another form of advanced directive, and is not conscious or competent to make the decision about whether to extend care on their own behalf. Physician-assisted suicide (PAS) refers to a practice in which a physician provides the means (i.e., a prescription for a lethal dose of medication) and/or information to assist a patient in ending their own life. The American Medical Association has denounced physician-assisted suicide as unethical and is aligned with some significant court cases in its position (AMA 2016). Though a controversial practice, the passage of “death with dignity” laws has legalized the practice of physician-assisted suicide in California, Colorado, the District of Columbia, Hawaii, Maine, New Jersey, New Mexico, Oregon, and Washington (Death with Dignity 2021). Physician-assisted suicide is distinguished from euthanasia because the patient terminates their own life, whereas euthanasia involves the active or passive termination of the patient’s life by a physician. Utilitarian Views of Euthanasia Utilitarian philosophers generally advocate seeking the greatest happiness for the largest number of people. Utilitarians weigh the benefits of keeping a person alive against the suffering of the patient and their loved ones and the expense and opportunity costs of caring for the individual. Opportunity cost refers to what is lost by choosing one option over another. For example, choosing to keep a patient alive on a respirator means that this respirator cannot be used by another patient. A utilitarian would argue that if the patient on the respirator has no chance of recovery while other patients who may recover need the respirator, the respirator should be given to those with hope of recovery. In such a system of considerations, the benefits of keeping a patient alive may include the extra time the patient or the loved ones need to prepare for death and/or the preservation of the sanctity of life as a value within the community. Australian moral philosopher Peter Singer (b. 1946), arguing from the utilitarian point of view, supports euthanasia in most of its forms. In Singer’s view, whether euthanasia is morally permissible depends in part on whether a person’s life is still worth living, whether they still have quality of life. Singer holds that it is moral to help someone avoid the unnecessary pain of a prolonged death and immoral to withhold assistance when a person has voluntarily and consciously waived their right to life. The only form of euthanasia Signer opposes is involuntary euthanasia. Euthanasia is involuntary when the decision to euthanize is made without patient input and against their interests. Other Philosophical Views on Euthanasia American ethicist James Rachels (1941–2003) famously challenged the conventional view that active euthanasia is morally wrong whereas passive euthanasia is (at least sometimes) morally permissible. Rachels pointed out that in both active and passive euthanasia the intent is the same, to end suffering, and the result is the same, the termination of the patient’s life. The difference, however, is that active euthanasia causes the immediate cessation of patient suffering, whereas passive euthanasia may result in prolonged suffering for the patient because death is not immediate. Passive euthanasia results in greater suffering than active euthanasia. Therefore, Rachels argued not only that active euthanasia is permissible in all cases where passive euthanasia is permissible but that active euthanasia is preferrable because it brings an immediate end to patient suffering. Some philosophers believe that euthanasia should be morally prohibited. They argue that the ethical harm to the community done by permitting euthanasia is greater than the benefit of ending suffering. They focus on the wrongness of killing, the physician’s role, and the potential slippery slope if euthanasia were widely practiced. Those who oppose active euthanasia argue, for example, that it is wrong to kill another person or that killing is incompatible with our concept of what it means to be a physician. In cases of active euthanasia, a physician must take action to cause the termination of their patient’s life. Physicians, however, first and foremost aim to help others and above all do no harm. Practicing active euthanasia seems to therefore be at odds with the very idea of a physician. Additionally, the practice of active euthanasia carries with it the potential for misuse or abuse. Clinical Trials In order to test new medical interventions and establish a drug’s dosage, determine possible side effects, and demonstrate efficacy, scientists run clinical trials. Clinical trials can involve both animal and human subjects. While it is essential to determine whether treatments are safe for general consumption, clinical trials, especially those using human subjects, have been a source of ethical dilemmas. Since the Enlightenment, many societies have adopted the Kantian value that humans should not be treated as a means to an end. Many societies have likewise embraced the view, grounded in social contract theory, that all individuals have natural rights, which make everyone equal before the law. (For more on social contract theory, see the chapter on political theories.) These ethical and political values have consequences for clinical trials. They have raised issues related to, for example, informed consent, access to medical resources, and whether the ends of using human subjects justify the means. Identifying and debating these ethical issues can promote, where applicable, changes to the way trials are conducted to address areas of concern. Figure 10.4 Ongoing clinical trials nationwide as of November 14, 2021. (source: National Library of Medicine; attribution: Copyright Rice University, OpenStax, under CC BY 4.0 license) Equipoise and Double-Blind Methods In randomized clinical trials, a random process determines the treatment each participant receives. Randomization is used to ensure that researchers don’t influence data by assigning treatments based on clinical assessment or other factors. Double-blind methods in clinical research refer to trials in which information about the treatment a participant receives is not disclosed to either the patient or the researcher. Randomization and double-blind methods create potential ethical issues because they seem to favor producing good data over patient interests. In other words, such methods seem to value the science more than the individual lives and health of the participants. The principle of clinical equipoise offers a way to conduct randomized trials in a way that balances the interests of participants and aims of science. A trial satisfies the principle of clinical equipoise when (1) there are no treatments that exist that are better than the ones being used in the trial and (2) clinical evidence does not favor the use of one of the treatments in the trial for the participants involved. If it obtains, clinical equipoise suggests that a trial does not sacrifice the interests of participants in the pursuit of scientific information and data. It balances the interests of trial participants and scientific interests in a clinical trial so one isn’t pursued at the expense of the other. Four Guiding Principles Trials involving human subjects have historically been a source of difficult ethical issues. There are four main ethical principles that can guide our thinking whenever faced with ethical issues in physician and patient or researcher and participant relationships, namely the principles of autonomy, beneficence, nonmaleficence, and justice. Principle of autonomy: The principle of autonomy states that in clinical settings, patients have a right to exercise agency or self-determination when it comes to making decisions about their own health care. In clinical trials, participant autonomy is protected when potential participants are entered in a trial only after giving their informed consent. Informed consent means an individual is provided all the relevant information about a trial to make their own decision about whether to participate. Participant autonomy and informed consent protect participants from exploitation. Principle of beneficence: The principle of beneficence proposes that we should act in ways that benefit others or that are for the good of others. In research settings involving human subjects, researchers satisfy beneficence by considering the interests of participants, ensuring participants are treated fairly, and considering the good of research subjects in addition to advancing science (see clinical equipoise above). Principle of nonmaleficence: The principle of nonmaleficence states that we should act in ways that do not cause harm to others. In clinical settings, nonmaleficence requires that patients are not unnecessarily harmed. In some cases, a procedure, treatment, or test may result in some harm to the patient. Physicians practice nonmaleficence when any potential harms are considered and patients are subjected only to those that are necessary for effective treatment. In research trials, nonmaleficence requires that trials are designed in ways to limit harm to participants as much as possible. The principle of justice: The principle of justice insists that the distribution and practice of health care should be equitable or fair. In clinical settings, the way patients are treated and the care they receive should be similar in relevant circumstances, and similar cases should be treated similarly. In clinical trials, the principle of justice dictates that researchers treat all participants fairly and equally. Researchers should not, for instance, give special treatment to some participants. Additionally, trial design and participation requirements should be fair and promote the impartial treatment of participants. In the arena of human experimentation, modern safeguards and guidelines were created in response to historical cases of exploitation and abuse. The Nuremburg Code, for example, represents the first attempt to establish guidelines for clinical trials created in response to the abuses and horrors perpetrated by Nazi physicians during World War II. The creation of institutional review boards (IRBs) was another method to mitigate ethical issues posed by clinical trials. IRBs comprised of experts in science, medicine, and the law are tasked with reviewing and vetting parameters of trials to protect participants and identify potential issues. Clinical trial guidelines and IRBs aim to promote that all trials with human subjects adhere to the four ethical principles above and protect participant privacy and confidentiality. Human Trials in Historically Marginalized Communities Historically marginalized communities and members of vulnerable populations have been especially susceptible to exploitation when participating in trials and research involving human subjects. Vulnerable populations have been particularly susceptible to coercion. Coercion, whether explicit or implicit, undermines a person’s autonomy because it makes informed consent and the exercise of agency impossible. It can occur, for instance, in cases where researchers do not explain the parameters of a trial or misrepresent it in some way to elicit consent from prospective trial participants. In the United States, the Tuskegee syphilis study (1932–1972) is perhaps the most notorious example of a trial that exploited individuals from marginalized communities. Over a period of 40 years, researchers tracked the progression of syphilis in a group of some 400 Black men to determine whether it differed in any way when compared to its progression in White men. The subjects were Black sharecroppers who, like many Americans, were experiencing increased hardships and difficulties because of the Great Depression (1929 to late 1930s). The desperate situation of potential subjects was exploited by recruiters who used the allure of free food and medical care to get their consent to participate in the study. The trial aimed to study the progression of untreated syphilis in human subjects. Researchers not only withheld the fact that participants had syphilis but also intentionally withheld treatment as well. Even when a treatment for syphilis was discovered in 1947 (penicillin), subjects in the Tuskegee experiment still received no treatment. The interests and rights of trial participants (e.g., their health, well-being, autonomy, and life) were ignored and abused for the sake of science (Taylor n.d.). The Tuskegee experiment and experimentation conducted by Nazi physicians on human subjects during World War II are examples in which vulnerable populations are exploited and treated as expendable in the pursuit of scientific knowledge. When subjects are recruited in exploitative trials, their “consent” is often a consequence of coercion, whether explicit or implicit. Issues of coercion occur when recruiters, for example, withhold important information about the trial, misrepresent trial goals, take advantage of participants’ desperate situations, and fail to adequately bridge language barriers to ensure trial parameters and participation requirements are understood. Normative Moral Frameworks Applied to Clinical Trials The four main ethical concepts discussed above can (and should) guide decision-making in a clinical setting. Not only do normative moral frameworks provide additional and more robust guidance for moral decision making and conduct, but their application to specific issues can also shed light on why we support the adoption of ethical practices. Utilitarians like Jeremy Bentham (1748–1832) and John Stuart Mill (1806–1873) proposed that the rightness of an action is determined by its consequences, by what it produces. They argued that we act morally when our actions produce the greatest happiness for the greatest number. In clinical trials, the utilitarian emphasis on consequences and, in particular, happiness provides a framework that may help us balance scientific/research goals and the interests of human research subjects. Mill argued that we should assess the morality of an action from the standpoint of an impartial, benevolent spectator. We are impartial when we consider everyone’s happiness, including our own, equally and don’t give preference to some individuals’ or some groups’ happiness or interests over others. We are benevolent when we strive to choose those actions that produce the most overall happiness and do not sacrifice the happiness of some for the happiness of others. Clinical trials ought to weigh the interests of human subjects carefully and be conducted in ways that do not sacrifice the subjects’ interests for the sake of science. Research is often funded by the private sector. Companies pursuing new treatments and interventions must balance their interests in profits, the costs associated with research and clinical trials, the aims of science, and the interests of the human subjects in their trials. If decisions are not made with these interests in mind, it is possible that choices in how clinical trials are conducted may be made not based on producing the greatest overall happiness but rather to increase overall profits for certain individuals or private groups. Connections The chapter on normative moral theory provides a framework for the philosophy of utilitarianism and deontology. A deontologist like Kant would examine the relevant rules and norms that apply to clinical trials. For Kant, an important rule that must be considered when using human research subjects is the imperative to always treat all persons as ends in themselves, never as means only. In other words, Kant believed that all people have inherent worth and value that is not dependent simply on usefulness for some end or goal. Kant’s ethics emphasizes the rights of human subjects and makes clear that potential research subjects must make an informed, free decision whether to participate in a clinical trial. Additionally, human beings’ rights cannot be ignored or denied because some other end (e.g., the goals of science, profits, or even greater human interests) is deemed more valuable. A Kantian approach would affirm the rights, choice, and autonomy of trial participants. Care ethics takes a character-centered approach, but it makes the values of caring central in our moral deliberation and decision-making. Care ethics uses the caring relationship as the ethical paradigm and thus highlights the importance of subjective and concrete factors when evaluating the rightness of certain actions and choices. In clinical trials, care ethics reminds us to value all humans and consider the importance of virtues like compassion and empathy when interacting with and treating patients. Connections The chapter on normative moral theory provides a framework for care ethics.