Christine K. Cassel MD, MACP1
Ruth B. Purtilo PHD2
1Adjunct Professor of Medicine, University of Pennsylvania, President, American Board of Internal Medicine
2Professor and Director, Ethics Initiative, Massachusetts General Hospital Institute of Health Professions
The authors have no commercial relationships with manufacturers of products or providers of services discussed in this chapter.
In the past, medical ethics was thought to refer solely to proscriptions against physicians advertising their services and fees or engaging in questionable economic arrangements such as fee-splitting. Within the past 20 years, however, medical ethics has evolved into a discipline in which clinicians (physicians, nurses, and other health professionals), philosophers, theologians, and social scientists speak knowledgeably about value conflicts that arise in the practice of medicine.1,2 Physicians have come to recognize the need to be knowledgeable about complex and wide-ranging moral issues as the result of advances in biomedical science and technology; changes in the delivery of health care; changing worldwide demographic trends; epidemics (e.g., the AIDS and severe acute respiratory syndrome epidemics) and new or reemerging infectious illnesses (e.g., avian influenza and Marburg viruses); and a growing understanding of the interconnectedness of individual and public health concerns. The AIDS pandemic has brought awareness that global health threats and cross-cultural contacts can present clinical, epidemiologic, and ethical challenges. For example, what responsibility does the international community have to provide assistance to severely underprivileged, impoverished countries experiencing an AIDS epidemic when treatment of the disease is readily available but out of reach of millions of people who suffer from its ravages?
Ethical issues in the clinical setting persist, and physicians need to be aware of legal decisions and new technologies that affect clinical practice. The rapid, continuing advances of medical technology have raised a host of moral issues around such fundamental questions as when does life begin, when and how does life end, which services can patients require of physicians, and which requests can physicians legitimately refuse. These questions become even more complex in a society as diverse and multicultural as our own, where moral norms may conflict. Respect for the personal values of our patients requires physicians to examine ethical dilemmas carefully and analytically. Consider the following ethical dilemmas and the questions that each one raises for physicians today:
These examples highlight the complexity of ethical dilemmas and the need for a common language by which clinicians and society can openly deliberate about ethical issues. Often, there is not a single right answer to an ethical dilemma; in almost all cases, there are competing values that need to be weighed against each other before a decision is made that most fully upholds the moral values by which physicians must guide their practice. As in many other areas of medicine, there may be a high degree of uncertainty. For that reason alone, it is useful to have a framework for ethical decision making.
A Context and Process for Ethical Decision Making
A conflict of values lies at the center of each ethical dilemma. Most medical ethicists agree that several fundamental ethical norms can be drawn from the overarching principle that patients should be treated with respect. These ethical norms include the responsibility to act in a way that benefits the patient (beneficence); the responsibility, whenever possible, to do no harm (nonmaleficence); the responsibility to acknowledge the autonomy of the patient and his or her right to self-determination; and the responsibility to treat people fairly and equitably. Although it would be hard to argue against any of these values taken individually, they come into conflict with one another every day in medical practice. Three steps are useful for making decisions when ethical conflicts arise.
First, the clinician needs to gather all available relevant information regarding the patient. Inadequate information can result in decisions that do not reflect the interests and desires of the patient. However, the clinician must be aware that cultural differences and language barriers may limit a patient's understanding of the choices that need to be addressed.3 Key information includes not only information about the medical condition of the patient but also information about the patient's values and preferences, the family and social situation, and the realities of the options open to the patient.
Second, ethical dilemmas must be clarified and presented clearly to all those involved in the decision-making process. For example, a spouse of an incompetent patient who argues for aggressive, clinically futile treatment in the face of an imminently terminal and untreatable illness can present the physician with a conflict between respecting the considered wishes of family members and doing what the physician judges is best for the patient.4 Sometimes, enhanced communication between physician, patient, and family helps bring the matter to resolution.5,6 For example, having a discussion with the family that is focused on the likelihood that aggressive measures would only prolong the suffering of the patient may convince them to end life-prolonging interventions. In other circumstances, however, the patient's and family's beliefs may necessitate that the physician take aggressive measures to preserve life at all costs.7,8 It may be important to discuss the spiritual and moral dimensions of the impending decision explicitly. It is often helpful to involve other physicians or nonphysician mediators, such as the hospital ethicists, patient advocates, social workers, and clergy members, in the decision-making process.9 Once values are explicitly discussed and differences clarified, a plan may be agreed upon by which all parties can abide.
Third, once a decision has been made, it is essential that the decision be carried out effectively, compassionately, and with continuing respect for the patient's needs and wishes. For example, if genetic testing is indicated and there are potential consequences regarding the patient's future eligibility for health insurance, the physician must ensure the confidentiality of information about the tests.10,11 If complete confidentiality is not possible, the physician should be sure that the patient understands and accepts the risks.12,13 Whatever the topic at hand, the physician must employ the clinical and interpersonal skills necessary to carry out the patient's wishes respectfully and compassionately.
Areas of Current Ethical Debate
Three broad societal concerns that have important implications for clinical practice lie at the center of many current ethical dilemmas.
DIFFERENCES OF OPINION ABOUT THE MORAL LIMITS OF MEDICAL INTERVENTION IN AN ERA OF TECHNOLOGICAL IMPERATIVES
Modern medicine has been criticized for generating an ethos in which clinicians assume that if an intervention is available, it should always be used. A physician might offer a new intervention as a way of either sustaining hope for the patient and family or avoiding the reality of a poor prognostic situation. In these circumstances, the chances of success can sometimes be overestimated. There are times when the better course is to help patients and families deal realistically with their losses. Physicians' ethics should allow them to consider each medical intervention in the light of their patient's values and wishes and with due regard for the appropriateness of the treatment in that particular setting.14,15 Several questions frame the current debate about the appropriate use of medical technology—among them, questions as to when life begins and ends, what constitutes quality of life, and is it appropriate to withhold interventions in the face of medical futility.
THE ENIGMA OF WHAT CONSTITUTES A PERSON AND WHEN LIFE BEGINS AND ENDS
Physicians sometimes face extreme and unfamiliar situations in discharging their duty to respect a patient's autonomy. Current research in genetics, for example, challenges traditional assumptions of the uniqueness of individual identity and the acceptability of genetic interventions.16 Germline interventions were considered completely ethically unacceptable just a few years ago because of the reluctance on the part of geneticists to create changes that would persist through subsequent generations. However, research has now progressed to the point of growing human stem cells under laboratory conditions, and stem cell research is thought to be one of the most promising new areas for clinical interventions.17 Although the debate has become intensely political and national funding of stem cell research by the National Institutes of Health is strictly proscribed, many in the scientific community are actively supporting stem cell research and are taking steps to address some of the ethical concerns raised by the use of these cells. This shift has occurred in part because stem cell techniques do not create permanent germline changes. Scientific research is ongoing, especially in other countries18; in the United States, interest in the clinical promise of stem cell technology continues to grow. Legislators in California and Massachusetts have created and funded state-level research centers, and other states are considering whether to undertake similar initiatives.
Attempts to promulgate practice guidelines for governing the conduct of stem cell research engender extensive debate; such debate generates rich ethical discourse that addresses the very essence of personhood. Reproductive technologies, including the potential for cloning, have an impact on this issue and have spurred new questions about the ethics of medical intervention in human reproduction. The debate about abortion in the United States continues to encompass many points of controversy that directly affect the practice of medicine, sometimes violently.
At the other end of the continuum of care is the question of when life ends. This question is brought into sharp focus by dramatic life-extending technologies. For example, although rational criteria for brain death have served to guide organ transplantation, the extreme shortage of donor organs and evolving technological capabilities have prompted new ethical considerations regarding organ recovery. As utilization of organ donations from non-brain-dead but irreversibly comatose persons has become an increasingly common practice, commitment to clarifying and addressing the ethical dilemmas associated with the use of such donors remains warranted.19,20 Finally, the debate about assisted suicide raises profound questions of quality of life and the limits of personal choice [see 11:VII Anoxic, Metabolic, and Toxic Encephalopathies and 13:IV Care and Management of the Patient at the End of Life].21,22,23,24
APPROPRIATE APPROACHES TO ASSESSING QUALITY OF LIFE
Discussions of quality of life gain broader clinical relevance as technical advances make it easier to extend life beyond a point where many people would consider it meaningful. When a patient or family member raises the issue, it is important for the physician to learn more about what that person means by “quality of life.” Physicians, family members, and patients may disagree about what constitutes an acceptable quality of life. Often, the phrase is used in the context of how long clinicians should continue attempts to extend life. The ideal setting for gathering this key information is in an ongoing caregiving relationship that allows the patient time to think about the issues, discuss them with those close to him or her, and come back to the physician for a fuller discussion.25 Unfortunately, this ideal relationship is becoming increasingly rare. Crucial decisions must often be made among relative strangers in times of great stress (for example, in an intensive care unit or when the patient is on the brink of having a cardiac arrest precipitated by critical illness).26
For that reason, physicians should try to open the door to these discussions with patients ahead of time whenever appropriate.27Increasingly frequent discussions of death and dying in the popular media have set the stage for patients and families to be receptive to such discussions and to be better informed about the facts and issues involved.
In general, questions related to acceptable quality of life should be answered by the patient.28 Often, however, the patient is unable to speak for himself or herself when the answer is needed.29,30 For example, patients with advanced dementia from Alzheimer disease or with irreversible coma cannot make these decisions, and few such patients have written detailed and specific advance directives. A proxy decision maker, usually a family member or a friend, should be asked about the patient's likely wishes in such a situation. It is crucial to emphasize to a proxy that it is the patient's values, not the proxy's, that should be conveyed in these situations. In addition to providing clear information about prognosis and likely outcomes, it is important for the clinician to recognize that a proxy is in a very difficult position—often in the midst of acute grief or anxiety—and should be provided a comforting context in which to make a decision. A proxy should not be made to feel that he or she is alone in making this decision, especially in the common situation in which the patient is likely to die in any case. Written advance directives—so-called living wills—can be helpful in this regard, mostly as adjuncts to discussions between patient and physician. Assigning a trusted proxy is still recommended, however, because situations are often more complex than can be adequately addressed in a written document.
Traditional Medical Ethics and the Changing World of Medicine
One of the reasons the medical profession has been able to maintain a strong ethical standard for more than 2,000 years is that the standard has been so simple. From the Hippocratic oath to the prayer of Moses Maimonides, statements of medical ethics have required the physician to do what is best for the patient, putting the patient's interest before the physician's own. Admittedly, there have been breaches of the standard. Many physicians became rich selling unproven patent medicines before the advent of scientific medicine. More recently, some have overcharged patients or have ordered unnecessary tests, medications, and procedures to further their own financial interests. Overtreatment can be as unethical as undertreatment, for two reasons: (1) all treatments carry some degree of risk to the patient and (2) rising health care costs contribute to the difficulty our nation faces in extending health care access to the uninsured and underinsured. Generating costs to enhance one's own income, with no benefit to the patient, adds to the barriers facing populations who are underserved by the health care system. Physicians have a responsibility for societal health, as well as the health of their individual patients.31
In the past, the accountability structure for health care was clearly delineated between physician and patient. Today, changes in the economics and delivery systems of managed care have so affected this classic ethical construct of undivided loyalty to the patient that even previously inviolable ethical relationships are being challenged.32,33
Managed care has been criticized for withholding care from patients, and physicians have been seen as the agents of rich insurance companies rather than as advocates for the best health care for their patients. Good managed care, however, allows physicians to limit risk to patients and reduce waste and cost. Physicians are challenged to examine whether their role in such managed care programs is truly in the patients' best interest; to do so could ameliorate the loss of public trust in the profession.34 Studies by the Institute of Medicine and the RAND Corporation have spurred new approaches in the provision of quality care.35,36 Physicians are being asked to measure the quality of their care and make this information available to payers, consumers, certifying/accrediting organizations, and others [see CE:XIII Performance Measurement in Clinical Practice]. Such measures are imperfect but will reveal to patients and others standards for ideal care. How should physicians respond to these new demands for transparency? Understanding the fundamental responsibility of the profession to the welfare of the patient is an important starting point for dealing with any ethical problems arising from social change, technological innovation, and changes in the delivery and financing of health care. The Physician Charter on Medical Professionalism identifies a modern framework that may be used to clarify professional standards in this more complex world.37,38
POPULATION-BASED MEDICINE AND THE RIGHTS OF THE INDIVIDUAL
Although simple in the abstract, the physician's responsibility to the patient is not always clear in actual practice. For example, the traditional standard requires a physician to do everything possible for patients directly in his or her care. Arguing that a more utilitarian standard is needed, some theorists have suggested changes to meet the requirements of population-based medicine, in which some treatments that are potentially beneficial to the individual patient are forgone to benefit larger numbers of patients with the available resources.
Utilitarian considerations are sometimes discussed in the context of a communitarian philosophy, which holds that all members of the society are better off if standards are based on the benefit to communities rather than to individuals exclusively.39 Many European governments base policies on communitarian premises, whereas in the United States, policy makers have traditionally focused more sharply on the rights of the individual. However, it may be that the rights of a far greater number of individuals would be better served with a health care structure that emphasizes more collective responsibility and resolution.
One area where this tension can be seen is in end-of-life care. In recent decades, there has been a presumption and a legal standard in the United States that patients may make their own decisions about the care they receive at the end of life and, in particular, that every person has the right to refuse life-sustaining treatment. This freedom of choice is the thrust of the Patient Self-Determination Act of 1990, which requires hospitals and nursing homes to inform patients of local laws regarding advance directives and to help them prepare advance directives if they choose to do so. In several well-publicized cases (e.g., the Quinlan, Cruzan, and Schiavo cases),40,41 courts supported families or patients who wished to end life-sustaining treatment. However, attention is now being drawn to instances in which patients or their proxies ask for life-sustaining treatment over objections from health care payers and, sometimes, providers. In the relatively few cases in which such conflicts have been brought to litigation, courts, again, have been generally supportive of patients' and families' desires. Interestingly, these cases conflict with the recent judgments that financial incentives to restrict care are acceptable in the context of insurance law.
In recent years, some ethicists have worked to define a standard of medical futility that would give physicians the right to withhold treatment in specific cases.42,43 There is profound disagreement, however, about the definition of futility and its statistical basis. For example, the chances of success with cardiopulmonary resuscitation (CPR) are remarkably small in patients of very advanced age who have debilitating illness and poor functional status, particularly in cases of an unwitnessed cardiac arrest; however, many physicians would be uncomfortable making the decision to withhold CPR without consulting the patient's family.44 From one perspective, this inclination to involve and communicate with patient and family is a sound one, motivated by respect and caring.45 In other cases, however, an insistence on family permission in the context of medical futility is a misguided gesture, perhaps driven by liability concerns. Ethicists have asserted the physician's duty to regain the responsibility of prognostication and decision making inherent in the older paternalistic model of medical practice.46,47 This belief can be supported by two arguments: (1) there is a responsibility to avoid wasteful use of scarce resources and (2) the attitude of caring means to avoid inflicting unrealistic choices on grieving families and to offer reassurances of aggressive palliative care and relief from suffering for patients who are dying.
Outside of the context of life and death, the allocation of medical resources is an area in which the tensions between wasteful expenditure and appropriate care are regularly played out. For example, the high cost of brand-name medications would lead a physician to prescribe equally effective generic agents whenever possible; however, direct-to-consumer advertising and drug detailing to physicians have created a demand for brand-name medications, even when there is no evidence that they are better than older formulations. On the basis of biomedical and clinical evidence, government agencies (e.g., the Centers for Medicare and Medicaid Services, the Veterans Administration, and certain state agencies) and health care plans have created formularies that determine the most cost-effective medications. These formularies are regularly used in the filling of prescriptions covered by health care payers. When these formularies are used, patients may not be given the brand of medication they request; however, they receive a formulation that is equally effective. The savings resulting from the adjustment in prescription allows health care plans to cover the health care costs of larger numbers of people. Patients who prefer the more expensive brand-name medication may have it if they pay for it. In these instances, does the physician's responsibility to avoid waste override the responsibility to respect the patient's values? The Physician Charter calls on physicians to reduce waste and improve quality. The achievement of this dual goal may require concerted effort to educate patients—and possibly policy makers—about the best uses of their health care resources.31,37,38
A BROADER CONTEXT FOR CLINICAL DECISION MAKING
The role of the physician and the nature of the doctor-patient relationship may be challenged, not only by changes in the practice of medicine but also by the increasing interconnectedness of communities and societies and the emergence of public health as a global concern. Regional and national health care systems are commonplace; epidemics can occur worldwide because of widespread international travel, immigration, and dislocation caused by war and civil strife.
The global, multicultural aspect of modern medicine will have increasingly significant implications for ethical decision making in clinical practice in coming years. For example, in seeking to honor a patient's right to autonomy, a physician may have to balance the traditional standard of care with a patient's desire to choose an alternative or complementary therapy; or following the traditional Hippocratic model, a physician may feel justified in using the most powerful antibiotic available to treat a patient's infection, despite the fact that the widespread use of powerful antibiotics leads to the emergence of new and more resistant organisms throughout the world.
Caring for patients in this new environment raises challenges for modern physicians that their predecessors never faced. Physicians must now analyze ethical issues systematically, understand the conflicts modern medicine poses for some traditional Hippocratic precepts, and come to terms with the conflict between their responsibility to their patients and the consequences of individual clinical decisions for the broader population. Even as electronic communication systems evolve to keep physicians abreast of new global realities, the moral and ethical framework of clinical decision making must begin to encompass those realities [see Sidebar Biomedical Ethics Information on the Internet]. It is critical that physicians learn the language of medical ethics and follow its literature closely so that their voices will help shape basic medical values in the future, even as they cope with complex ethical challenges in their daily practice.
Biomedical Ethics Information on the Internet
The National Library of Medicine's database of peer-reviewed bioethics literature.
National Bioethics Advisory Commission
Agendas and transcripts of meetings, online publications, and other information primarily regarding genetics research and research involving humans.
Ethical, Legal and Social Implications Program, National Human Genome Research Institute
Information on policy and legislation, research opportunities, grant products and publications, education and training activities.
American College of Physicians Center for Ethics and Professionalism
Position papers, educational programs, and other resources on end-of-life care, managed care, and other issues related to medical ethics.
American Medical Association Institute for Ethics
Educational and outreach programs for physicians, including the Education for Physicians on End-of-life Care Project.
American Society for Bioethics and Humanities
Consolidation of the Society for Health and Human Values, the Society for Bioethics Consultation, and the American Association of Bioethics; meeting agendas, position papers.
American Society of Law, Medicine & Ethics
Conference agendas, publications, online forum.
Comprehensive guide to international resources in bioethics.
Institutes and Centers
Case Western Reserve University Center for Biomedical Ethics
Program news, events, online newsletter.
Georgetown University Kennedy Institute of Ethics
Information on symposia, publications, and services, including the National Reference Center for Bioethics Literature. (http://www.georgetown.edu/nrcbl)
The Hastings Center
Research and educational programs on ethical issues in medicine, the life sciences, and the environment.
University of Chicago MacLean Center for Clinical Medical Ethics
Comprehensive guide to online resources in biomedical ethics; online newsletter.
University of Pennsylvania Center for Bioethics
Online bioethics tutorial, publications, discussion groups; special sections on genetics, cloning, and physician-assisted suicide.
Practice Guidelines and Consensus Statements
American Society of Clinical Oncology policy statement update: genetic testing for cancer susceptibility. J Clin Oncol 21:2397, 2003
Consensus statement of the Society of Critical Care Medicine's Ethics Committee regarding futile and other possibly inadvisable treatments. Crit Care Med 25:887, 1997
Emanuel LL: A professional response to demands for accountability: practical recommendations regarding ethical aspects of patient care. Working Group on Accountability. Ann Intern Med 124:240, 1996
Ethical considerations in the allocation of organs and other scarce medical resources among patients. Council on Ethical and Judicial Affairs, American Medical Association. Arch Intern Med 155:29, 1995
Fletcher JC, Siegler M: What are the goals of ethics consultation? A consensus statement. J Clin Ethics 7:122, 1996
Karlawish JH, Quill T, Meier DE: A consensus-based approach to providing palliative care to patients who lack decision-making capacity. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians—American Society of Internal Medicine. Ann Intern Med 130:835, 1999
Lo B, Quill T, Tulsky J: Discussing palliative care with patients: ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians-American Society of Internal Medicine. Ann Intern Med 130:744, 1999
Position paper of the Ethics Committee of the International Xenotransplantation Association. Sykdes M, d'Apice A, Sandrin M, et al: Transplantation 78:1101, 2004
Practice parameters: assessment and management of patients in the persistent vegetative state (summary statement). The Quality Standards Subcommittee of the American Academy of Neurology. Neurology 45:1015, 1995
Snyder L, Leffler C: Ethics manual: fifth edition. Human Rights Committee of the American College of Physicians. Ann Intern Med 142:560, 2005 http://www.acponline.org/ethics/ethicman5th.htm
Editors: Dale, David C.; Federman, Daniel D.