Cancer, Ethical Issues Related to Diagnosis and Treatment

views updated



Significant advances in cancer control and prevention have emerged from the front lines of medicine since the 1970s. Sophisticated diagnostic modalities aid in the timely detection of the disease. The benefits of established treatments such as chemotherapy and radiation therapy have been maximized gradually but steadily, and the risks have been minimized. Major changes in other aspects of cancer care have followed. For example, oncology personnel today pay far more attention than did their predecessors to issues such as the frank disclosure of diagnoses and treatment options, long-term quality of life for cancer patients and their families, and ethically complex scenarios that range from gaining consent from incompetent adults to the participation of children in discussions and decision making about cancer clinical trials.

These and other developments also have created new problems and concerns for clinicians, ethicists, and other stakeholders in the struggle against cancer. These issues include complicated questions about the nature, quality, and outcomes of oncologist-patient communication and decision making. Is there a preferred way for an oncologist to disclose a diagnosis of cancer to patients and their families that is frank and compassionate, truthful and hopeful? Should children diagnosed with cancer participate in discussions and critical decisions about their disease and its treatment? Can one envisage a continued role for paternalism in contemporary cancer care, and how effective or realistic are the models proposed as alternatives? Are oncologists responding to the growing ethnic diversity of their patients? What sorts of opportunities and obstacles will confront oncologists as people with cancer organize and inform themselves through online advocacy groups, websites that promote "alternative" treatments, and other high-technology resources?

Cancer and the Oncologist's Ethical Duties: Some General Considerations

An oncologist's ethical responsibilities typically begin with a positive diagnosis of cancer, an event that triggers shock and anxiety in patients and their families. Cancer is associated by many people with disfigurement, dying, and death; therefore, the first ethical duty of an oncologist and his or her team is to convey the diagnosis in a way that balances the reality of the disease and its implications with the overall need to maintain optimism and hope. Whereas the obligation to be honest about the reality of cancer derives from the ethics of truth telling in cancer care and in medicine generally (see below), the duty to foster hope taps several sources (Kodish et al., p. 2974):

  1. The poorly understood relationship between the mind and the body and the ability of the body to respond positively to a positive frame of mind.
  2. The physician's responsibility to attend to the patient's psychological as well as physical welfare.
  3. A need for humility on the physician's part in light of the limitations of her or his ability to predict the future for any individual patient.

How much hope should an oncologist foster in patients and their families? Researchers point out that the language of hope is a critical part of the culture of oncology in the United States. It "articulates fundamental American notions about personhood, individual autonomy, and the power of thought (good and bad) to shape life course and bodily functioning" (Good et al., p. 61). Several factors have to be assessed in promoting hope in a specific case, including the type and stage of cancer, the patient's age, and the point of evolution in the disease and treatment at which the discussion occurs (Kodish et al., p. 2974). Cultural factors also may have to be considered. Cancer carries different connotations in different cultures and may require a discussion tailored to the degree of fatalism, fear, or "social death" that the disease inspires in different ethnic groups (Taylor; Good et al.; Gordon; Good).

From the reinforcement of hope flow other responsibilities: to time the disclosure of survival chances sensitively; to discuss the available treatment options and their respective risks and benefits fully; to discuss, among other rights, the patient's right to withdraw from a clinical trial if one is offered; to encourage patients and their families to ask questions; and to give honest answers to all the questions patients ask. Special attention has to be paid to clarifying key concepts in oncology such as the distinction between remission and cure. Remission means that there is no clinical or radiographic evidence of active tumor and often is accompanied by the hope of a cure. Unfortunately, relapse often occurs and brings a much more grave prognosis. Many oncologists and patients are reluctant to use the term cure because of the implied guarantee that there will be no relapse.

Care must be taken so that patients are neither overburdened with information nor underinformed. To strike this balance an oncologist initially should meet several times with a patient rather than only once and space the meetings to give the patient time to absorb sensitive or complicated information. Institutional review board–approved consent scripts and other written materials on cancer or cancer clinical trials may help literate patients understand their options and rights (Meade; Flores et al., p. 847).

These are some of the key ethical responsibilities that face oncologists in their daily encounters with patients. Many more exist and depend largely for their successful outcome on oncologists' ability to take into account the physical, emotional, and social needs of their patients. Some of those needs may be dictated by the ways in which cancer is conceptualized.

The Concept of Cancer: An Overview

Although the biological, epidemiological, and genetic origins and indicators of cancer are vitally important—they are the frontiers on which the disease is being battled—cancer is more than the sum of its physical parts. It is also a socially imagined disease that is collectively thought about, embellished, and reacted to in ways that mesh with a people's established social and cultural norms. In some African countries, for example, perceptions of cancer as a stealthy, insidious disease mesh with notions of malice and witchcraft (Bezwoda et al., p. 123; El-Ghazali, p. 101). In parts of Italy cancer poses the threat of social as well as physical disruption and death, a viewpoint that meshes with the importance Italians place on defining themselves and their worth in relationship to others (Gordon). In the United States, by contrast, "having" cancer sometimes is considered a personal failing and responsibility, a notion that clearly draws on deeply ingrained concepts of individuality and the individual's role in determining his or her destiny (Good et al.).

Ideas and perceptions about cancer are not, however, unchanging or static. Cancer was widely viewed in pre-nineteenth-century art and literature as a distinctly romantic disease. Susan Sontag has linked this view to evidence that for a long time cancer was confused with tuberculosis, a disease historically infused with a romantic mythology (Sontag). Gradually, however, after tuberculosis was identified in 1882 as being bacterial in origin, cancer developed a separate and far less romantic identity, characterized in Sontag's view by a highly deleterious and stigmatizing image that persists to this day.

In the United States the situation can be made worse by the punitive and often militaristic paradigm of the disease (Sontag, pp. 65–67; Payer). People with cancer are treated aggressively, sometimes without much concern for their quality of life, perhaps partly as a result of the way in which cancer treatment is framed as a "war" that should be "waged" with "weapons" such as chemotherapy and radiation therapy. Such language is widespread and public: Cancer research institutions have worked it into their mission statements, and high-profile cancer "survivors" such as Lance Armstrong use it to encourage others.

So detrimental do some scholars consider this metaphoric expression of cancer that they recommend a shift away from the use of metaphor to understand and define cancer and other diseases (such as AIDS). Writes Sontag: "The most truthful way of regarding illness—and the healthiest way of being ill—is one most purified of, most resistant to, metaphoric thinking" (p. 3). Metaphors can hurt, Sontag suggests; they are a rhetorical means by which diseases can acquire meanings that inflict additional pain and suffering on people with diseases such as cancer and AIDS.

Sontag's argument has to be considered in light of two other observations. First, cancer patients are rarely passive victims of the collective lore or mythology surrounding their disease. One cancer patient, in an advice column published online by the American Cancer Society, rejected the notion of cancer as a purely individual, unshakable disease: "I find myself more comfortable telling people, 'I was diagnosed with cancer' instead of saying, 'I have cancer.' On some deep level, I don't want to 'own' this illness." The writer goes on to offer the following advice to other cancer patients: "Choose language that suits you when you share your news. And keep in mind that there is no one 'right' way of doing this" (Murray).

Individually or as members of self-help organizations, cancer patients can and do actively oppose the aspects of their disease and its conception or management that they consider negative and unfair.

Second, metaphors do not only hurt or damage; they also may help patients cope with cancer. Studies show, for example, that cancer patients frequently draw on religion, nature, art, the military, and many other sources of imagery to help them visualize their diseases, treatments, and recoveries (Skelton; Tompkins and Lawley). Psychologists have reported considerable success working with the many different kinds of metaphors that cancer patients can adopt throughout the course of their disease (Tompkins and Lawley). Ethnographic evidence indicates that even oncologists and other specialists use metaphors to help them understand and confront cancer and "routinize" new technologies and treatments (Koenig; Simon; Skelton et al.).

"In the healing process the most important part of communication takes place at the metaphoric level, " states the medical anthropologist Margaret Lock in Capra's Uncommon Wisdom (1989, p. 289). "Therefore, you have to have shared metaphors" (chapter 19). This may be especially true in the case of cancer because of the seriousness of the disease and the onus on patients and their caregivers to utilize the full range of resources—medical, social, and metaphoric—available to them in their joint effort against cancer.

The Doctor–Patient Relationship in Cancer Care: Four Models

The doctor–patient relationship has particular relevance in the context of cancer. Frequently life-threatening, clinically complex, and requiring sustained, repeated face-to-face interactions, cancer and its treatment raise the fundamental question of what exactly is involved when patients and clinicians enter into a "relationship." For months and perhaps years a cancer sufferer and his or her clinician or clinicians must meet, talk, listen to, and learn from one another in an atmosphere built on mutual trust, good communication and understanding, competency and compassion, and openness. Without these interpersonal characteristics the doctor–patient relationship is likely to be a rocky one, leading to possible patient and clinician dissatisfaction, mistrust, and a compromised quality of care.

The respective roles that patients and clinicians ideally should adopt, however, are not widely agreed on or easily implemented. Different models ranging from strict paternalism to complete patient autonomy have been suggested. Below, four of these models and their relevance to the cancer care setting are reviewed. Although paradigmatic in several important ways, these are not the only models that are relevant to cancer care. Variations on these models and other alternatives have been proposed (Ong et al.; Gattellari et al.).

THE PATERNALISTIC MODEL. Definable as the overriding or restricting of the rights or freedom of individuals for their own good, paternalism entails clinicians ensuring that patients receive the interventions that best promote their health and well-being regardless of the patients' preferences (Goldman). Although many scholars oppose strict paternalism, arguing that it is too coercive, some concede that paternalism has moral validity and limited practical relevance. Paternalism may be useful and necessary in emergency situations in which the time taken to discuss treatment options or obtain informed consent may harm the patient irreversibly (Emanuel and Emanuel, p. 73). Otherwise, strict paternalism rarely is advocated or considered tenable in the treatment of diseases such as cancer.

Nevertheless, patients and/or their families may at times express a desire for a paternalistic approach. In a large behavioral cancer study, for example, the authors audiotaped the parent of a young boy with leukemia in a discussion with an oncologist who was trying to explain the option of enrolling the child in a Phase III clinical trial. The parent interrupted the clinician and said, "Anything you gotta do to fix him! I don't care." The clinician persisted, saying she felt obligated to inform him about the clinical trial. She again was interrupted by the parent, who insisted: "You don't have to tell me all the lingo. Just fix him [the patient]!"

Clearly, a paternalistic approach in which the clinician calls all the shots may be preferred by some healthcare consumers. Other studies have highlighted similar preferences, finding that some cancer patients prefer to relinquish decision-making control in favor of a more passive or deferential role, a phenomenon that may be rooted in the inordinate trust some people place in their doctors or in prevalent cultural norms and values that discourage shared decision making and patient autonomy (Flores).

THE INFORMATIVE OR CONSUMER MODEL. Like all patients, cancer patients can be viewed as consumers, and their clinicians as providers of information and treatment. This model supports a view of the doctor–patient relationship as a neutral and transactional one in which the clinician furnishes, without trying to influence the patient, the facts relevant to the patient's diagnosis, prognosis, treatment options and their risks and benefits, and aspects of care. The goal of this approach is to empower the patient with as much information as possible so that the patient can make a fully informed, autonomous decision about treatment. Although this approach may prove beneficial to patient understanding and informed decision making, it also may lead to information overload and patient dissatisfaction. The burden of choice and decision making falls squarely on patients in this model, an outcome that not all cancer patients find desirable or helpful (Gattellari et al., p. 1867).

THE INTERPRETIVE MODEL. Also based on a view of the clinician as an information provider, the interpretive model suggests that clinicians furnish the facts and go several steps further to help the patient understand them and make a decision about treatment. The clinician may have to act as a counselor of sorts, supplying relevant information, elucidating the patient's values and preferences, and suggesting which treatment options best match the patient's values. An oncologist adopting this role, for example, might listen to a breast cancer patient, articulate the patient's values and then inform the patient that it is important for him or her to fight the cancer but that the treatment must leave the patient with a healthy self-image and quality time outside the hospital. Without recommending a particular course of action, the oncologist might suggest that the patient's values seem compatible with radiation therapy but not with chemotherapy because the former would do better at maximizing the patient's chance of survival while preserving the patient's breast.

Patient autonomy is conceived as self-understanding in this model; the patient "comes to know more clearly who he or she is and how the various medical options bear on his or her identity" (Emanuel and Emanuel, p. 69). Objections to this model include the possibility that clinicians may misinterpret the patient's values or impose their own values under the guise of articulating those of the patient.

THE DELIBERATIVE MODEL. From the standpoint of this model the clinician acts as the patient's teacher or friend, helping the patient deliberate on various aspects of the disease, prognosis, and treatment options. The clinician aims at most for moral persuasion, not coercion, and tries to engage the patient in a dialogue about what treatment is best in light of the patient's condition and health-related values. An oncologist adopting this role might begin by pointing out the facts, articulating the patient's values, and then balancing the options with the patient in a discussion of their risks and benefits and potential impact on the patient's life. This model supports an oncologist who goes on to recommend a particular course of action, suggesting, for example, that radiation therapy may be the best option because it offers maximal survival with minimal risk, disfigurement, and disruption of the patient's life (Emanuel and Emanuel, p. 71).

In contrast to the interpretive model and its emphasis on self-understanding, the deliberative model conceives of patient autonomy as "moral self-development" (Emanuel and Emanuel, p. 69). A major criticism of the deliberative model is that clinicians should not be entitled to act as moral teachers or guardians; their role is to heal without regard to a patient's personal values or morals. However, this criticism is subject to the counterargument that many people may not want or expect their clinicians to be simply mechanistic healers and may desire help—especially when faced with the prospect of cancer treatment—in developing a personal moral foundation for their long-term health and well-being.

In their classic work on the subject Thomas Szasz and M. H. Hollender make the point that the doctor–patient relationship is a relatively novel concept in modern medicine. Instead of fostering its relationship with patients as people, they argue, medicine has cared primarily about its relationship to such "things" as anatomic structures, cells, lesions, bacteria, and viruses (p. 278). Certainly this characterization rings true for oncology during the early and intermittent phases of the "war on cancer" (Proctor). Patients' rights, truth telling, and other ethical components of cancer care that are taken for granted today were not always high on the agenda in much of the twentieth century, when efforts were directed primarily toward developing a basic understanding of cancer and options for treating it. Before 1970 the paternalistic model was widely accepted, entitling oncologists to decide unilaterally what sorts of information and treatment their patients should get.

As different models of patient autonomy in cancer care are developed and debated by experts ranging from medical sociologists and anthropologists to oncologists and research nurses in oncology, the doctor–patient relationship in cancer care increasingly is undergoing scrutiny and refinement. Few experts still advocate the paternalistic model. The debate centers more on whether the model for cancer care should be informative, interpretive, or deliberative or should involve some combination of these models and their respective strengths. At the same time researchers across a spectrum of disciplines increasingly are consulting cancer patients and their communities for input on the merits or drawbacks of particular ways of gaining information, making decisions, adhering to drug regimens, and developing effective coping mechanisms for cancer. Such informant-based, empirical research will continue to play a vital role in understanding and developing the oncologist–patient relationship in ways that promote quality of care and quality of life for people with cancer.

Telling the Truth about Cancer and Its Treatment

In the United States attitudes toward truth telling in cancer care have changed markedly in the last few decades. In 1946 Charles Lund wrote that a patient diagnosed with cancer should not be told the "whole truth." He advised physicians to use a "loosely descriptive word" such as cyst or lesion in place of the word cancer and to give patients only "some rough idea" of the extent of treatment. That was sufficient information, Lund felt, on which to base a diagnostic discussion and consent to treatment. In the same vein, a 1961 survey reported that 90 percent of 219 Chicago doctors did not tell patients the truth about a diagnosis of cancer (Oken). Maintenance of hope, in contrast, was considered the single most important factor for physicians to take into account when discussing cancer with a patient. By contrast, 97 percent of physicians surveyed at the same Chicago institution in 1979 reported a preference for telling cancer patients the truth about their diagnoses, a dramatic reversal of earlier findings (Kodish et al., p. 2974). Since that time it has become widely accepted that patients should be told the truth about their diagnoses and prospects, although not all studies find that this happens in practice. Omission or concealment of the truth remains an issue in cancer care because of the traditional and cultural resonances of dread associated with the disease (Freedman, p. 572).

Studies reveal a number of benefits associated with an open, truthful approach to a patient's diagnosis of cancer, chances of survival, treatment options, and progress over time. Honest disclosures build trust and ameliorate conflict between clinicians and patients and their families. They satisfy legal and ethical norms of patient autonomy. Truthfulness also ultimately may help patients understand and cope with cancer. Nevertheless, a clinician should take into account several factors before initiating a frank discussion with a cancer patient.

Foremost among these factors is whether the patient has been diagnosed with cancer for the first time. Such patients may require a more sensitive approach than do relapsed patients or patients with long-standing symptoms, who generally will be less surprised and more prepared for a diagnosis of cancer. Also "the truth" must be balanced against the fact that a clinician can share openly with a patient only what is clinically knowable. The natural history of a particular cancer and the way a patient will respond cannot always be predicted at the time of diagnosis. This may add to a discussion an element of uncertainty that can make the truth appear murky and confusing as well as uncomfortable for patients. Finally, a frank approach to a cancer diagnosis may not be welcomed by all patients and their families. Comparative studies illustrate, for example, that the culture of oncology may vary from country to country. Cancer patients in parts of Italy, for example, fear that disclosure of the true nature and implications of their disease may lead to "social death" (Gordon). Similarly fearful, some Latino and Japanese immigrants in the United States consider American styles of disclosure and prognosis cruel and unnecessary (Good et al.).

In light of these and other contrasting cultural norms, oncologists practicing in diverse ethnic environments may need to approach their commitment to truth telling with special sensitivity and "cultural competence" (Flores). They may have to enlist the support of social workers, interpreters, and other appropriate support personnel to counteract the fear of social isolation and loss of hope that may strike some cancer patients harder than others.

Childhood Cancer and Its Ethical Challenges

Cancer kills more children than does any other disease. Recent data show that after unintentional injury, childhood cancer continues to be the most common cause of death for children ages one to nineteen years in the United States (Hoyert et al., p. 257). Beyond the impact on mortality, the disease burden of childhood cancer is very significant. The quality of life of an afflicted child and his or her family are affected profoundly. The time of a new diagnosis is a particularly difficult period, with parents reporting tremendous stress and emotional turmoil (Dahlquist et al., p. 111; Levi et al., p. 244).

Unlike most areas of clinical medicine, randomized clinical trials are the norm for pediatric oncology (Hirschfield et al., p. 256). Most often the "standard" therapy for a particular disease is determined by a previous study and then embedded in the randomized design of clinical trial along with one or more alternative regimens. Children in typical pediatric oncology randomized clinical trials may be assigned to the "standard" arm or to an "experimental" arm that is generally either more intensive (with hopes of improving the cure rate with tolerable toxicity) or less intensive (with hopes of maintaining the cure rate with less toxicity than the "standard" arm). If a parent or an older child declines study participation, the treating oncologist generally will elect to provide the "standard" therapy without collecting data for the research study.

Ethical issues in childhood cancer are complex and potentially difficult to resolve. Until recently children were compared to incompetent adults, for whom treatmentrelated decisions are made by a close family member. Ethicists now point out that this comparison fails to acknowledge a key distinction between children and incompetent adults: The former are different because in most cases their competency is still in a state of growth or evolution. In most prominent legal cases, by contrast, incompetent adults were never expected to regain competency (Truog et al., p.1411). This places most children in a category different from that of incompetent adults, one that challenges doctors to preserve their future autonomy as opposed to the former autonomy that doctors strive to respect when offering multiple treatment options to incompetent adults. In light of this critical difference, how involved should children be in discussions and decision making about the treatment they will receive?

Answers to this question typically make use of the concept of "assent" for treatment, which first was proposed for pediatric patients in the 1970s by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (Truog et al., p. 1412). The commission proposed that children between ages seven and fourteen be asked for their assent to medical treatment, whereas older children would be presumed to have full decision-making capacity. The American Academy of Pediatrics sanctioned this approach in 1995, with its Committee on Bioethics adding that physicians should take the following steps to assure assent:

  • Help the patient achieve a developmentally appropriate awareness of the nature of his or her condition.
  • Tell the patient what he or she can expect with tests and treatments.
  • Make a clinical assessment of the patient's understanding of the situation and the factors influencing how he or she is responding (including whether there is inappropriate pressure to accept testing or therapy).
  • Solicit an expression of the patient's willingness to accept the proposed care.

The last of these four requirements is perhaps the most controversial in the context of childhood cancer, in which the unwillingness of a child to accept treatment most likely would be considered insufficient grounds to forgo that treatment. For this reason the American Academy of Pediatrics is careful to account for situations in which children will receive a particular treatment despite their objection, noting that they should be told that and not be deceived (Truog et al., p. 1412). Although this approach helps ensure that children do not naively forgo treatments that could save their lives, it also raises questions about the sincerity of "assent" as a concept that is intended to foster patient autonomy. Also, achieving assent in practice may have unintended effects. Although more research is needed on the topic, at least one study of children with leukemia suggests that the consent process may be compromised when children and parents participate in the same discussions. With the oncologist typically focusing her or his comments and attention on the patient, the parents may ask fewer questions and display lower levels of understanding than do parents whose children are approached separately and who receive the undivided attention of their oncologists. These findings suggest an urgent need for further research on the practical compatibility of assent and parental permission.

Other Ethical Dilemmas in Pediatric Oncology

Parents sometimes express the wish that their children not know the diagnosis or severity of their disease. At one time this sentiment would have received support in most segments of the pediatric oncology community, in which the culture of nondisclosure widely included the notion that children had to be protected from the psychological trauma of finding out about cancer and their chances of survival (Truog et al.). However, evidence indicates that children cope remarkably well with the shock of a diagnosis such as cancer and may adjust better psychologically to their disease and its treatment if they are informed early (Slavin et al.; Truog et al., p. 1412). Oncologists may legitimately use such findings to convince reluctant or fearful parents of the importance of disclosing to their children the nature of their disease.

The refusal by some parents to consent to any kind of medical intervention for their child poses another dilemma for oncologists. Cancer is typically a life-threatening illness, and oncologists subsequently display a relatively low level of tolerance for parents who deny them permission to treat a child diagnosed with the disease. Court orders usually are obtained to override such parental decisions. The situation can become more complicated, however, when a parent's decision not to treat a child biomedically is backed by a community whose values and life views differ dramatically from the mainstream, such as the ultraconservative segments of the Amish community in the Midwest. Careful negotiation aimed at building mutual trust and confidence may be required in such instances so that the best interest of the child and the community can be served.

Cancer and End-of-Life Care

In the past oncologists typically greeted with foreboding and mistrust the prospect of relinquishing treatment in favor of palliative, end-of-life support such as hospice care. That open opposition has been replaced in most cases with careful circumspection. Many oncologists recognize a threshold beyond which continued treatment does more harm than good even though they may struggle to unite that recognition with the Hippocratic imperative to heal. This threshold, however, may not always coincide with patient or family preferences.

An oncologist may be asked to taper off or stop treatment at a juncture where the oncologist foresees, with statistical and collegial support, that continued treatment is still likely to benefit the patient. In equally problematic situations the reverse may occur. Crawley and her colleagues cite as an example an African-American man with metastatic colon cancer who angrily rejected his physician's suggestion that they had reached a point where the interventions would be costly and would serve only to prolong the man's suffering (Crawley et al., pp. 673–675). The patient demanded that he receive every medical test and procedure available regardless of the cost. This insistence, the physician felt, was based on the man's inability to grasp the limitations of the technological options still available to him.

The provision of good end-of-life care for cancer patients frequently is complicated by disagreements, poor communication, and cultural differences. However, there are strategies that oncologists can adopt to alleviate end-of-life pain and suffering among their patients. Foremost is a willingness by a physician to probe beneath the surface for explanations of why patients and/or families may or may not desire an option such as hospice care. Investigating the case mentioned above further, Crawley et al. discovered that the physician, a European-American, consulted an African-American colleague for advice. As an ethnic "insider, " the colleague was able to point out that African-Americans who have suffered discrimination may fear neglect if they do not insist on maximal care. The colleague also stated that many patients seek aggressive treatment because they value the sanctity of life, not because they misunderstand the limits of the technology available to them, as the patient's doctor had suspected (Crawley et al., p. 675). Enlightened by this and other information, the doctor met again with his patient and reopened the discussion with greater understanding about the patient, his cultural background, and his preferences.

A unique problem in end-of-life care arises when the physician's best-intentioned efforts appear to resemble physician-assisted suicide or euthanasia. The classic case involves the terminally ill patient whose death may be hastened by high doses of morphine. Discerning clinicians and ethicists usually can recognize whether a physician's goal in such cases is to relieve pain or respiratory distress—a fundamental clinical obligation in the eyes of many—or whether the objective is to hasten the patient's death, a goal that remains ethically controversial (Kodish et al., p. 2979).

The growing worldwide hospice movement provides an important avenue for improving end-of-life care for cancer patients. Hospice philosophy calls for providing patients and their families with medical, psychological, and spiritual support as they encounter terminal illness. The primary goal is palliation of symptoms and improvement of the quality of life. Antineoplastic therapy may be a part of hospice care, but cure of cancer is no longer attainable and the focus is on comfort. Although tension between the goals of cancer treatment and the goals of hospice care may arise, they need not be incompatible. Patients who develop a trusting relationship with an oncologist may feel abandoned if their care is transferred abruptly to a hospice team. For this reason oncologists should remain active in the care of patients with terminal cancer, using hospice services as an adjunct rather than a replacement for providing excellent care.

Cancer Care and the Future

Future developments in cancer care will be affected by advances in the clinical control and prevention of the disease. Ongoing genetic and molecular research promises not just more effective treatments for cancer but also less invasive procedures for patients, greater patient autonomy, and improved quality of life. Potential problems may include a compounding of concerns about informed consent for cancer clinical trials and genetic susceptibility testing, as well as more "macro" issues such as the inequitable distribution of cancer care resources in the United States and globally. Also, current trends suggest continued growth in "informal" cancer care resources ranging from online information networks to holistic alternatives to conventional cancer care. Many of these resources have the potential for linking together and empowering cancer patients but also of misinforming them or undermining the oncologist's authority and purpose through the exposure of patients to multiple, conflicting messages. Surveys and other kinds of behavioral research may be needed so that providers of cancer care may better grasp the pluralistic knowledge- and treatmentseeking tendencies of their patients and the way in which they affect physician-authority, treatment adherence, and other key clinical issues.

Finally, demographic trends at the beginning of the twenty-first century strongly suggest that cancer care will be provided amid growing ethnic and cultural diversity in the United States and elsewhere. Already many providers of cancer care feel the impact of this diversity through their daily struggles with language barriers, conflicting expectations, lack of treatment adherence, and other problems. Learning more about patients and their backgrounds provides an important way to address these and other problems. Clearly, however, it is unrealistic to expect caregivers to identify the countless cultural norms and behaviors that may affect their patients' preferences and decisions. An approach tailored to a particular institution's patient demographic is needed, and for this there are handbooks and other tools that may assist a cancer caregiver practicing in any region of the United States. Leading cancer care institutions also increasingly hire professional, culturally astute interpreters who can help oncologists and patients bridge the cultural and linguistic differences that may hinder effective communication and understanding. Conferences and workshops on "cultural competence" and "cultural sensitivity" increasingly are organized for researchers, ethicists, and caregivers to use in response to growing patient heterogeneity.

christian m. simon

eric d. kodish

SEE ALSO: Alternative Therapies; Autonomy; Beneficence; Clinical Ethics; Double Effect, Principle or Doctrine of; Grief and Bereavement; Healing; Informed Consent; Life, Quality of: Quality of Life in Clinical Decisions; Life Sustaining Treatment and Euthanasia; Palliative Care and Hospice; Surrogate Decision-Making


American Academy of Pediatrics Committee on Bioethics. 1995. "Informed Consent, Parental Permission, and Assent in Pediatric Practice." Pediatrics 95: 314–317.

Bezwoda, W. R.; Colvin, H.; and Lehoka, J. 1997. "Transcultural and Language Problems in Communicating with Cancer Patients in Southern Africa." In Communication with the Cancer Patient: Information and Truth, ed. M. Zwitter. New York: New York Academy of Sciences.

Capra, Fritjof. 1989. Uncommon Wisdom: Conversations with Remarkable People. NY: Bantam Books.

Crawley, L. M.; Marshall, P. A.; Lo, B.; et al. 2002. "Strategies for Culturally Effective End-of-Life Care." Annals of Internal Medicine 136(9): 673–679.

Dahlquist, L. M.; Czyzewski, D. I.; Copeland, K.G.; et al. 1993. "Parents of Children Newly Diagnosed with Cancer: Anxiety, Coping, and Marital Distress." Journal of Pediatric Psychology 18(3): 365–376.

El-Ghazali, Sawsan. 1997. "Is It Wise to Tell the Truth, the Whole Truth, and Nothing but the Truth to a Cancer Patient?" In Communication with the Cancer Patient: Information and Truth, ed. M. Zwitter. New York: New York Academy of Sciences.

Emanuel, E., and Emanuel, L. 1992. "Four Models of the Physician-Patient Relationship." Journal of the American Medical Association 267: 2221–2226.

Flores, Glenn. 2000. "Culture and the Patient-Physician Relationship: Achieving Cultural Competency in Health Care." Journal of Pediatrics 136(1): 14–23.

Flores, Glenn; Milagros, Abrue; Schwartz, I.; et al. 2000. "The Importance of Language and Culture in Pediatric Care: Case Studies from the Latino Community." Journal of Pediatrics 137(6): 842–848.

Freedman, Benjamin. 1993. "Offering Truth: One Ethical Approach to the Uninformed Cancer Patient." Archives of Internal Medicine 153: 572–576.

Gattellari, M.; Butow, P. N.; Tattersall, M.H.; et al. 2001. "Sharing Decisions in Cancer Care." Social Science and Medicine 52(12): 1865–1878.

Goldman, Alan. 1999 (1980). "The Refutation of Medical Paternalism." In Ethical Issues in Modern Medicine, ed. J. D. Arras and B. Steinbock. Mountain View, CA: Mayfield.

Good, Byron J. 1994. Medicine, Rationality, and Experience: An Anthropological Perspective. Cambridge, Eng.: Cambridge University Press.

Good, M. J. Delvecchio; Good, B. J.; Schaffer, C.; et al. 1990. "American Oncology and the Discourse on Hope." Culture, Medicine and Psychiatry 14: 59–79.

Gordon, Deborah R. 1990. "Embodying Illness, Embodying Cancer." Culture, Medicine and Psychiatry 14: 275–297.

Hirschfield, S.; Shapiro, A.; Dagher, R.; et al. 2000. "Pediatric Oncology: Regulatory Initiatives." The Oncologist 5(6): 441–444.

Hoyert, D. L.; Freedman, M. A.; Strobino, D.M.; et al. 2001. "Annual Summary of Vital Statistics: 2000." Pediatrics 108(6): 1241–1255.

Kodish, E.; Singer, P. A.; et al. 1997. "Ethical Issues." In Cancer: Principles and Practices of Oncology, ed. S. A. Rosenberg. Philadelphia and New York: Lippincott-Raven.

Koenig, Barbara. 1988. "The Technological Imperative in Medical Practice: The Social Creation of a Routine Treatment." In Biomedicine Examined, ed. D. Gordon. Boston: Kluwer.

Levi, Rachel B.; Marsick, Rebecca; Drotar, Dennis; and Kodish, E. D. 2000. "Diagnosis, Disclosure, and Informed Consent: Learning from Parents of Children with Cancer." Journal of Pediatric Hematology/Oncology 22(1): 3–12.

Lund, Charles C. 1999 (1946). "The Doctor, the Patient, and the Truth." In Ethical Issues in Modern Medicine, ed. J. D. Arras and B. Steinbock. Mountain View, CA: Mayfield.

Meade, Cathy D. 1999. "Improving Understanding of the Informed Consent Process and Document." Seminars in Oncology Nursing 15(2): 124–137.

Oken, D. 1961. "What to Tell Cancer Patients: A Study of Medical Attitudes." Journal of the American Medical Association 175: 1120–1128.

Ong, L. M.; de Haes, J. C.; Hoos, A.M.; et al. 1995. "Doctor-Patient Communication: A Review of the Literature." Social Science and Medicine 40(7): 903–918.

Payer, Lynn. 1996. Medicine and Culture. New York: Henry Holt.

Proctor, Robert. 1995. Cancer Wars: How Politics Shapes What We Know and Don't Know about Cancer. New York: Basic Books.

Simon, C. 1999. "Images and Image: Technology and the Social Politics of Revealing Disorder in a North American Hospital." Medical Anthropology Quarterly 13(2): 141–162.

Skelton, J. R.; Wearn, A. M.; Hobbs, F. D.; et al. 2002. "A Concordance-Based Study of Metaphoric Expressions Used by General Practitioners and Patients in Consultation." British Journal of General Practice 52(475): 114–118.

Slavin, L. A.; O'Malley, J. E.; Koocher, J. P.; et al. 1982. "Communication of the Cancer Diagnosis to Pediatric Patients: Impact on Long-Term Adjustment." American Journal of Psychiatry 139: 179–183.

Sontag, Susan. 1989 (1977). Illness as Metaphor and AIDS and Its Metaphors. New York: Farrar, Straus and Giroux.

Szasz, Thomas, and Hollender, M. H. 1997. "The Basic Models of the Doctor-Patient Relationship." In The Social Medicine Reader, ed. Gail E. Henderson, Nancy M. P. King, Ronald P. Strauss, Sue E. Estroff, and Larry E. Churchill. Durham, NC: Duke University Press.

Taylor, Kathryn M. 1988. "Physicians and the Disclosure of Undesirable Information." In Biomedicine Examined, ed. D. Gordon. Dordrecht, Netherlands: Kluwer Academic.

Tompkins, Penny, and Lawley, James. 2002. "The Mind, Metaphor, and Health." Positive Health vol. 78.

Truog, R. D.; Burns, J.; et al. 2002. "Ethical Considerations in Pediatric Oncology." In Principles and Practices of Pediatric Oncology, ed. D. G. Poplack. Philadelphia: Lippincott Williams and Wilkins.


Murray, Lorraine V. 2002. "Breaking the News about Your Diagnosis: Tips from a Breast Cancer Survivor." American Cancer Society. Available from <>.