ABSTRACT: The purpose of this Committee Opinion is to discuss issues related to end–of–life care, including terms and definitions, ethical principles, legal constructs, physician–patient communication, and educational opportunities pertinent for specialists in obstetrics and gynecology. Assumptions about the objectives of care—which may be understood differently by the patient and her caregivers—inevitably shape perceptions about appropriate treatment. Because unarticulated commitments to certain goals may lead to misunderstanding and conflict, the goals of care should be identified through shared communication and decision making and should be reexamined periodically. A good opportunity to initiate the discussion of caregiving goals, including end–of–life care, is during well–patient care. Physicians must be careful not to impose their own conception of benefit or burden on a patient. End–of–life care is particularly challenging for pregnant women, whose autonomy is limited in many states. Many apparent conflicts will be averted by recognizing the shared interests of the woman and her fetus. When interests diverge, however, pregnant women's autonomous decisions should be respected.
|*Update of "End-of-Life Decision Making" in Ethics in Obstetrics and Gynecology, Second Edition, 2004
Obstetricians and gynecologists, including those in training, care for women throughout their life span and not infrequently need to participate in end–of–life decision making. Tragic accidents occasionally threaten the life of a pregnant woman and her fetus, and terminal outcomes occur for some patients with gynecologic cancer. As a result, physicians are expected to present options and guide patients as they make decisions in the face of such events. Life–threatening situations are never easy to deal with, even for the well trained. The purpose of this Committee Opinion is to discuss issues related to end–of–life care, including terms and definitions, ethical principles, legal constructs, physician–patient communication, and educational opportunities pertinent for specialists in obstetrics and gynecology.
The Ethical Basis of Medical Practice
The moral foundation of medicine includes three values central to the healing relationship. These are patient benefit, patient self–determination, and the moral and ethical integrity of the health care professional (1, 2).
The obligation to promote the good of the patient is a basic presumption of medical caregiving and a defining feature of the physician's ethical responsibility. The ethical principle of beneficence upholds the physician's duty to seek to promote the patient's good, providing care in which benefits outweigh burdens or harms. Providing benefit at the end of life when further medical intervention may be deemed futile may at first seem challenging, but further consideration suggests that the principle of beneficence may be manifested in many dimensions. In some situations, it may be manifested by providing treatment to improve health or prolong life. In other situations, it may be exhibited through the elimination of false hope, avoidance of unwarranted tests and therapies, and assistance for patients and their families in reconciling themselves to the limitations of available medical options and achieving peace of mind. Indeed, in considering end–of–life care, benefits are understood only relative to the goals that the patient and physician hope to achieve through medical care. At times, what is beneficent in the patient's eyes may seem to the physician to cause more suffering or involve the inappropriate use of medical resources. These complicated issues of futility are addressed further elsewhere (3).
The inherent value of individual autonomy or self–determination is one of the fundamental principles of democracy and represents the basis for many individual rights and protections in the United States. In health care, the value of individual autonomy is affirmed in the ethical and legal doctrine of informed consent (4, 5). Under this doctrine, the patient has a right to control what happens to her body. This means that in nonemergent situations, no treatment may be given to the patient without her consent (or, if she lacks decision–making capacity, the consent of her valid surrogate). Treatment otherwise given to the patient without her consent may be judged in some cases to be assault and battery. A patient's right to informed consent or refusal is not contingent on the presence or absence of terminal illness, on the agreement of family members, or on the approval of physicians or hospital administrators.
In the medical context, physician respect for patient self–determination consists of an active inclusion of the patient in decisions regarding her own care. This involves frank discussion of diagnoses and prognoses (an essential part of an informed consent); the relative risks and benefits of alternatives, including the option of refusing all curative treatments; and, based on these discussions, a mutual identification of the operative goals of care. Studies suggest that most patients want to know the reality of their conditions and benefit from an honest communication with the physician (6, 7). It is unethical for a physician to deny patients important information in order to avoid physician–patient interactions that are difficult or uncomfortable. Moreover, appropriate regard for patient autonomy involves respecting the patient's considered choice to change therapeutic modalities to better meet her current goals of care. The patient's choice may be conveyed through an instructional directive or a surrogate with power of attorney (see box). Advance directives will be discussed in later sections.
Ethical Integrity of the Health Care Professional
Because physicians, like patients, are autonomous agents, they usually cannot be compelled to violate personal ethical or religious commitments in service to the patient (8). If physicians have moral reservations about providing certain forms of caregiving or about stopping treatment, they should (if appropriate to the circumstances) make that known at the outset. Physicians must not stand in the way of patients' desires to seek other caregivers and should, where possible, help guide the transition.
An advance directive is the formal mechanism by which a patient may express her values regarding her future health status. It may take the form of a proxy directive or an instructional directive or both:
- Proxy directives, such as the durable power of attorney for health care, designate a surrogate to make medical decisions on behalf of the patient who is no longer competent to express her choices. The terms health care proxy, health care agent, and surrogate can be used interchangeably. The term surrogate is used in this Committee Opinion.
- Instructional directives, such as living wills, focus on the types of life–sustaining treatment that a patient would or would not choose in various clinical circumstances.
The profession of medicine is guided by its moral commitment to avoid subjecting a patient to harms that are greater than potential benefits (the principle of nonmaleficence). On this basis, physicians have a presumptive obligation not to provide treatments that are untested, contraindicated, or useless. For this reason, a patient's demand for care that she deems desirable is not sufficient to impose on providers an absolute obligation to provide care that is futile or likely to be harmful without offering corresponding benefit.
Legal Developments That Bear on End–of–Life Decision Making
In addition to the emotional and medical challenges that accompany decisions at the end of life, care in such situations may be shaped by statute and legislation. Laws governing such situations vary from state to state. In the 1990s, there were a number of developments in law that influence end–of–life decision making.
First, in June 1990, in Cruzan v. Director of the Missouri Dept. of Health, the United States Supreme Court affirmed that patients have a constitutionally protected right to refuse unwanted medical treatments (9). The ruling also affirms the states' authority to adopt procedural requirements for the withdrawal and withholding of life–prolonging medical interventions.
A second legal development was the passage of the federal Patient Self–Determination Act (PSDA), which went into effect December 1, 1991 (10). The PSDA requires Medicaid– and Medicare–participating health care institutions to inform all adult patients of their rights "to make decisions concerning medical care, including the right to accept or refuse medical or surgical treatment and the right to formulate an advance directive." Under the PSDA, institutions that receive Medicare or Medicaid reimbursement are legally required to provide this information to patients on admission for care or on enrollment in a health maintenance organization. The institution must note in the medical record the existence of an advance directive and must respect these directives to the fullest extent under state law. Put simply, the aim of the PSDA is to empower patients to make decisions regarding their medical care.
A third development is found in legislation and legal rulings concerning the autonomy of the pregnant woman to refuse treatment. Although courts at times have intervened to impose treatment on a pregnant woman, currently there is general agreement that a pregnant woman who has decision–making capacity has the same right to refuse treatment as a nonpregnant woman (11). When a pregnant woman does not have decision–making capacity, however, legislation frequently limits her ability to refuse treatment through an advance directive. As of 2006, 31 states had living will statutes that explicitly forbid the withholding or withdrawal of life support either from all pregnant patients or from pregnant patients whose fetuses could become, or currently are, viable (12). Only four states specifically permit a woman to choose to refuse life–sustaining treatment if she is pregnant. The other states either have no living will statute or make no mention of pregnancy. Similar types of restrictions exist in some states with respect to a surrogate who is appointed to make decisions on behalf of a pregnant woman (11). Statutes that prohibit pregnant women from exercising their right to determine or refuse current or future medical treatment are unethical. (An ethical framework for addressing end–of–life decisions in pregnant women is discussed later in this Committee Opinion.)
A final development pertains to euthanasia and physician–assisted suicide. Euthanasia refers to the administration of drugs with the intention of ending a patient's life at her request (13). Physician–assisted suicide refers to supplying a patient with drugs or a prescription for drugs knowing one is enabling a patient to kill herself. Oregon's 1997 Death With Dignity Act, which permits physicians to write prescriptions for a lethal dosage of medication to people with a terminal illness, was upheld January 2006 by the Supreme Court. No other state in the United States allows such acts, but other countries that authorize physician–assisted suicide or euthanasia include Belgium, The Netherlands, and Australia.
In contrast to the previous decisions and legislation, some have argued that irrespective of the individuals' specific circumstances, support should be offered to maintain life. These arguments were made perhaps most prominently in debate and legislation surrounding the care of Terry Schiavo. As discussed in the following section, more than perhaps anything else, this case illustrated the advantage of all individuals providing advance, written instructions concerning their wishes for end–of–life care.
Physician—Patient Communication and the Goals of Care
The practice of obstetrics and gynecology involves many different types of care. These include but are not limited to preventive care; periodic examinations; family planning; the provision of prenatal and delivery care; medical and surgical intervention for conditions that threaten a patient's fertility, life, or quality of life; long–term care for patients with chronic illness; and palliative care for patients whose illnesses offer no chance of cure or remission. The combination of medical and surgical treatment approaches, as well as the intimate nature of the specialized care offered by obstetrician–gynecologists, allows for a long–term close relationship with many opportunities for communication with patients. Questions about the use of specific therapeutic modalities become meaningful often only in relation to the goals of management for a particular patient (14). Goals of care in obstetrics and gynecology include:
- Relief of symptoms, pain, and suffering
- Achievement of cure or remission
- Achievement or prevention of pregnancy
- Optimization of pregnancy outcomes
- Prevention of illness in a woman or her fetus or both
- Maintenance or restoration of biologic function
- Performance of palliative surgery or chemotherapy
- Maximization of comfort
- Achievement or maintenance of a certain quality of life
- Education of the patient about her medical condition
The ultimate goals of care are properly identified through a process of shared and ongoing communication and decision making between the patient and physician (15–17). Skilled, honest communication is key in this process. Explicit discussion about the goals of care is important for a number of reasons. First, assumptions about the objectives of care inevitably shape perceptions about the appropriate course of treatment. Second, these objectives may be understood differently by the patient and her caregivers. Third, unarticulated commitments to certain goals may lead to misunderstanding and conflict. Finally, the goals of care are fluid and may evolve and change in response to clinical or other factors.
A comprehensive and ongoing process of communication not only advances patient self–determination but also is the basis for "preventive ethics"; that is, the establishment of a moral common ground that may prevent ethical conflict and crisis (18). The benefits of engaging in and becoming skilled at such conversations are many and include optimizing care, diminishing family burden, diminishing stress among members of the health care team, and utilizing resources more effectively. Inadequate communication, whether from inappropriate training, personal provider discomfort with death, or differences in personal or cultural values, has the potential to impair the process of informed consent and may result in overtreatment, pain and suffering, undue burden on the patient and family, misuse of resources, and loss of the peace of mind that can result from including interdisciplinary care such as hospice and palliative care departments.
The well–publicized and discussed case of Terri Schiavo emphasizes the need to discuss these issues with loved ones and also the need to put them in writing. In this case, the diagnosis of a permanent vegetative state and the unwritten wishes of the patient contributed to painful conflicts between the patient's husband and her parents regarding the effort to keep her alive by tube feedings (19). Even if patients do all they can to make their wishes known, conflicts may still occur.
Shared Decision Making Regarding the End of Life
The process of decision making regarding the end of life may take place under two different circumstances. In the first, decisions are made in an acute situation of present health crisis; these are immediate choices that determine actual end–of–life treatment. In the second, decisions are made that proactively provide for possible future end–of–life situations; these decisions are expressed through advance directives. In practice, however, the distinction may not be drawn sharply, and such decision making often is more appropriately thought of as an ongoing process or conversation. Because circumstances may change, goals also may change over time and will need to be readdressed with all involved parties on a regular basis.
Communication Regarding Immediate Health Status
An ongoing process of informed consent requires physicians to communicate information regarding the patient's health status and comparative risks and benefits of treatment (including no treatment) so that she or, if she lacks decision–making capacity, her surrogate may determine goals of her care. If the patient decides that the maximization of comfort is her desired goal of care, the practitioner's responsibilities will focus on palliative strategies, such as pain relief, attentive and responsive communication with the patient about her health status, and the facilitation of communication with the patient's involved family and loved ones. These components of care are essential to the physician's positive therapeutic role and are often the most valuable services that can be offered. The expression "nothing more can be done" is misleading shorthand that improperly equates care with cure and, in so doing, ignores the importance of the physician's role in providing comfort to the dying patient (20–22).
If the patient or surrogate and physician finally disagree on the goals that should guide care, a clearly defined process of discussion and consultation should be followed to resolve the disagreement. Examples of a process are available (3, 23). In many institutions, such disagreements are first addressed by an ethics consultation service or an ethics committee. By using consultative services to clarify the cultural, religious, or personal considerations that shape decision making, the parties may be able to resolve apparent conflict. The specific details of this process may vary by institution and locality.
Results of such a consultation may include the transfer of care to another physician. In other circumstances, the assistance of a palliative care team to bridge the transition to palliative care may be helpful. Some patients who are near the end of life and who anticipate ever–increasing pain and suffering may inquire about the alternative of physician–assisted suicide. It currently is not legal for physicians to participate in physician–assisted suicide in states other than Oregon. When a patient inquires about physician–assisted suicide as a possible option, the physician should explore with her the nature of her fears and her expectations and should be prepared to offer reassurances regarding palliative care plans for relieving distress at the end of life. Physicians should be aware that a request for physician–assisted suicide may be a marker for treatable depression or inadequately treated pain.
Communication Regarding Future Health Status: Advance Directives
In many cases, it is the obstetrician–gynecologist who not only acts as the principal physician for female patients but also has the most contact with them throughout their lives. For these reasons, the obstetrician–gynecologist is in an ideal position to discuss with the patient her values and wishes regarding future care and to encourage her to formulate an advance directive (see box).
A good opportunity to initiate the discussion of caregiving goals, including end–of–life care, is during well–patient care, either at the time of the periodic examination or during pregnancy. Because a patient's wishes regarding care might change over time or under different conditions of illness, these discussions should include occasional reexamination of values and goals and, if necessary, updating of her advance directives and other documentation. Decision making should be treated as a process rather than an event.
To facilitate the initiation of these discussions, the patient history form could contain questions about a patient's execution of an instructional directive and her designation of a surrogate or next of kin as her medical proxy. If the patient has an instructional directive or durable power of attorney or both, they should become part of her medical record. If the patient does not have an advance directive, assistance in executing one might be provided by the social services or nursing staff of a hospital or clinical practice.
Ideally, these discussions serve an educational purpose for both patient and physician. For the physician, these discussions establish a basis for future care and provide an opportunity for the candid expression of personal values regarding care. For the patient, the discussions provide the opportunity to learn about advance directives, to formulate and articulate her values regarding the goals of care, and to understand the compatibility of these goals with the values of the health care provider.
Although it is the physician's responsibility to educate patients about possible future health status and rights regarding medical care, it is the responsibility of the patient to thoughtfully assess her values and goals and to make them clearly known to those involved in her care. Again, the explicit discussion and continued reevaluation of caregiving goals provides an optimal mechanism for shared decision making.
Potential Physician Influence
In the face of end–of–life decision making, physicians trained to prize interventionist strategies must be especially careful not to impose their own conception of benefit or burden on a patient or to use coercive means to establish or achieve goals that are not shared by the patient. The obstetrician–gynecologist should recognize that the harms associated with prolonged attempts at cure may not be acceptable to some patients. However, neither the presence of a "do not resuscitate" order nor specific directives regarding limitation of other treatments remove the responsibility for providing palliative care. Moreover, the physician should not rely on the presence or absence of a do–not–resuscitate order to make assumptions about the appropriateness of other treatment but rather should be guided by the explicitly identified goals of care.
There is considerable evidence that sociocultural and gender differences between patients and their physicians may subtly influence the style and content of physician–patient communication and the care that patients receive (24–31). Physicians who are aware of these potential problems can guard against the influence of bias in judgments concerning patient choices. Differences in gender and in ethnic, social, religious, and economic background between patients and physicians may complicate communication, but they should not compromise care.
An additional area of potential conflict is research. The dual role that physicians often assume as research scientists and clinical practitioners can be challenging because the goals and priorities of science and clinical practice may be different (32). For example, one should not overlook the potential conflict that may arise during a patient's end–of–life transition when the primary physician is also a primary investigator for an oncology trial for which the patient is eligible. Both the researcher and the primary caregiver should guard against inflating the patient's perception of the therapeutic benefit expected from participating in clinical trials. Studies have shown that research participants tend to believe, despite careful explanation of research protocols, that they will likely benefit from participation or that the level of actual benefit will be greater than stated in the consent process (33). A patient's decision to participate in research should be consistent with her end–of–life goals.
Surrogate Decision Making
If the patient who lacks decision–making capacity has not designated a surrogate, state law may dictate the order in which relatives should be asked to serve in this role. The individual selected should be someone who knows the patient's values and wishes and will respect them in his or her role as surrogate decision maker. If there is conflict regarding the designation of a surrogate, it may be appropriate to seek the advice of an ethics committee or consultant or, possibly, the courts. The benefit of choosing a surrogate is immeasurable because this individual has the same authority the patient would if she were able to make decisions. The surrogate has the legal right to all confidential medical information and ideally would be someone trusted and chosen by the patient herself. Proactively choosing a surrogate allows the opportunity to discuss pertinent religious or moral beliefs with that individual. One additional precaution a patient can take to be sure her wishes are respected is the execution of a living will.
The surrogate decision maker is ethically obligated to base decisions on the wishes and values of the patient. If these wishes and values have been explicitly stated, either in writing or in oral discussion, the surrogate has to interpret and apply them in the current situation. If wishes and values have not been explicitly stated beforehand, the surrogate has to attempt to extrapolate them from what is known about the patient. In some cases (for example, a never–competent patient), the surrogate will have to decide entirely on the basis of what is in the best interests of this particular patient.
Pregnant Patients and End–of–Life Decisions: Preventing Conflict
For the overwhelming majority of pregnant women, the welfare of the fetus is of the utmost concern. This concern motivates women to modify their behaviors for months at a time and to undergo the discomforts and risks of pregnancy and delivery. This maternal interest in fetal welfare traditionally has been the basis of the fundamental ethical commitment of obstetrician–gynecologists: that they are responsible for both the pregnant woman and her fetus and that they must optimize the benefits to both while minimizing the risks to each.
In recent years, some have advanced the view of the "fetus as patient"–an ethics framework that highlights questions about what should be done in cases in which the pregnant woman's decisions about her own health seem unlikely to optimize fetal well–being. Many of these apparent conflicts will be averted by recognizing the interconnectedness of the pregnant woman and fetus with an approach that emphasizes their shared interests. For cases in which their interests do diverge, however, candid discussion of these matters in advance of a situation, conflict, or crisis is important. Pregnant women's autonomous decisions should be respected, and concerns about the impact of those decisions on fetal well–being should be discussed in the context of medical evidence and understood within the context of the women's values and social context (11).
Within the context of obstetric care, situations rarely arise when a dying pregnant woman must decide between caregiving goals that emphasize palliative management for her own illness or an interventionist strategy, such as cesarean delivery, for the sake of her fetus. Likewise, she might be forced to decide between a curative strategy, such as chemotherapy, for her metastatic breast cancer and a course that poses less risk to her fetus but offers her less anticipated benefit. In either case, it is safe to assume that having been provided with all of the clinical information necessary to make her decision, she regards the choice as a difficult, possibly excruciating one and one that she wishes she did not have to make. The patient with a life–threatening condition identifies treatment goals by considering her beliefs and values in the context of obligations and concerns for her family, her fetus, and her own health and life prospects.
The obstetrician–gynecologist, as the woman's advocate, should attempt to ensure that the wishes of the pregnant patient are followed. Even if the patient is no longer able to make her own decisions, her previously expressed wishes and values (whether expressed as an instructional directive or through the appointment of a surrogate decision maker) should guide the course of treatment, whenever legally possible. When this is not possible, clinicians should advocate changes in the law (34, 35).
The need for effective end–of–life education for physicians in training is obvious, not only for the benefit of patients but also for physicians, to avoid burnout and to help them manage anxiety with issues of mortality. In a survey of six medical schools, only 22–53% of fourth–year medical students felt prepared by the end–of–life education they received (36). A study of 157 first–year internal medicine residents (interns) identified very little classroom teaching, clinical observation, or clinical experience with end–of–life communication and, perhaps as a consequence, reported low self–perceived comfort and skill in this area (37). Finally, in a study of general surgeons, 84% reported receiving no education in palliative care in residency, and 44% indicated that they had not had sufficient continuing medical education on the topic (38).
One particularly beneficial educational example is that of the Giving Bad News script (39), but also helpful are courses such as the Healer's Art, designed by Rachael Naomi Remen (40), and techniques such as Narrative Medicine (41), designed for physicians to remain self–reflective about issues of humane caring and differences in their own concerns about life and death.
Effective proactive communication between the patient and the physician is the cornerstone of the therapeutic relationship. Explicit identification of the operative goals of care is important for four reasons:
- Assumptions about the objectives of care inevitably shape perceptions about the appropriate course of treatment.
- These objectives may be understood differently by the patient and her caregivers.
- Unarticulated commitments to certain goals may lead to misunderstanding and conflict.
- The goals of care may evolve and change in response to clinical or other factors.
In the course of providing comprehensive care, obstetrician–gynecologists are in an excellent position to encourage women to formulate advance directives. The discussion of the advance directive should be regarded as integral to the ongoing process of communication to be initiated by the health care provider. Special attention should be given to the discussion of treatment wishes with pregnant women facing end–of–life decisions, especially in view of current state restrictions on the application of advance directives during pregnancy.
Sometimes the maximization of comfort is the chosen therapeutic goal. In this case, the care offered by the physician can continue to benefit the patient in a number of important ways by providing humane and supportive care at the end of life.
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