THE DISCLOSURE OF THE DIAGNOSIS OF CANCER

CANCER SCREENING AND DIAGNOSIS

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THE DISCLOSURE OF THE DIAGNOSIS OF CANCER John W. Carnes, PhD, and H. James Brownlee, Jr, MD

From the patient's point of view, receiving a diagnosis of cancer may be an indelible and traumatic experience. The process of learning one's diagnosis often sets the stage for future care and treatment and represents the beginning of a life-altering adaptation. During the process, the patient must often assimilate a plethora of information relative to the diagnosis, prognosis, treatment, and the events that will follow in the clinical course. The manner in which patients comprehend this information and psychologically adjust to bad news is often the result of a combination of their previously held beliefs and expectations about cancer and its treatment and the manner in which they are informed and supported by their practitioner. Therefore, during the initial workup, it is important for physicians to be mindful of the psychological status of their patients. The patient's questions, responses to suggestions, demeanor, and attitude are all indicators of psychological status and eventual management needs. Sensitivity to the psychological needs of cancer patients at this time is important because many patients report that the period of time between confirmation of diagnosis and initiation of treatment is the period of greatest psychological disturbance. A number of articles have documented the extraordinary change in physician behavior regarding the decision whether or not to inform patients of a diagnosis of cancer.'O Between 1953 and the mid-1970s, physicians in the United States changed from rarely telling cancer patients of their diagnosis to informing nearly all patients of diagnosis, the main treatment options, and prognosis of their disease. It would also From the Department of Family Medicine, University of South Florida College of Medicine, Tampa, Florida

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appear that this is an evolving universal trend. That is, as of 1990, there seems to be a shift in attitudes in favor of telling cancer patients their diagnosis throughout Europe, Russia, and Asia.2 A variety of practical and philosophical reasons explain this shift in clinical practice. Perhaps the most salient is the awareness that the advantages of increased patient coping and treatment compliance appear to outweigh the risk of emotional distress associated with being told one’s diagnosis.2 Such awareness is also supported by the realization that many laypersons in the United States are now more sophisticated about health issues and treatment options. Although the word cancer continues to carry a significant emotional charge, a growing segment of the population now realizes that cancer comes in a variety of forms, many of which are treatable, if not curable in some cases. Ironically, this increased awareness has been brought about in part by the shifting role of the physician-patient relationship. Patients are now regarded as consumers, and patient (consumer) satisfaction is emerging as a significant criterion in the managed-care marketplace. Patients often now expect full disclosure of treatment alternatives, and the doctrine of informed consent has virtually become the law of the land. Indeed, several court decisions have assigned punitive damages against physicians who have failed to reveal a medical diagnosis to a patient. Thus, the practical realities are that patients appear to adjust well when better informed and now expect disclosure of fundamental information relative to their diagnosis and treatment alternatives. The ethical forces supporting the disclosure of a dreaded diagnosis are no less compelling. Fundamentally, every patient needs an understanding of issues and choice to cooperate reasonably in treatment or to make an informed refusal of care. This concept is true regardless of whether the diagnosis implies a hopeful situation or a poor prognosis. Specifically, because of the increased medical sophistication of the population, many cancer patients have a strong suspicion of their diagnosis when they present to their physician. Consequently, the physician’s effort to protect the patient from the truth paradoxically produces a need for all members of the family, including the patient, to live with their fears in isolation. Saunders5 sums the ethical imperative for disclosure with simple eloquence: ”[A] patient needs the chance to handle his experiences in a way that will make them significant, or at least bearable to him, and it is he who should decide how he will do this.” Finally, open disclosure of the diagnosis eliminates the potential devastation inherent in such a fragile secret. In reality, the patient may easily discover the diagnosis inadvertently from overheard conversations or signing informed consent papers for treatment. Many patients are astute enough to recognize suspicions of cancer if the physician recommends computed tomography or magnetic resonance imaging scans, biopsies, or elaborate hematologic investigations. The reaction of the patient under such circumstances is often justifiable anger and betrayal at a time when emotional support may be most critical.

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Although physicians have ethical and fiduciary responsibilities to inform patients of their diagnosis, what about the situation in which the physician believes strongly that communicating the diagnosis is contraindicated? Informed consent test cases involving nondisclosure suggest that it is permissible to avoid revealing the diagnosis if the patient’s emotional reaction would be of such severity to preclude dispassionate consideration of the risks and benefits of accepting treatment. Another consideration would be if the disclosure would be distressing enough to precipitate a suicidal act. Under such circumstances, documentation of the thought processes involved in the decision is imperative. Confirmation of the decision by a second opinion may be helpful, and discussion with the patient’s family, unless it constitutes a clear violation of physician-patient confidentiality, is extremely important. WHO TELLS THE PATIENT AND WHAT NEEDS TO BE SAID?

Stedeford8 stated, ”poor communications causes more suffering than any other problem except unrelieved pain. It is also the easiest to treat.” From the perspective of continuity of care and effective communication, who delivers the diagnosis is often as important as the actual words chosen. Often, this responsibility falls on the family physician, not only because of a preexisting physician-patient relationship, but also because of the family physician’s role as coordinator of care and patient advocacy. Unless a specialist, who may provide the definitive diagnosis, has such a relationship with the patient, it is psychologically more desirable for the family physician to be the person to communicate with the patient. A number of studies have investigated patients’ preferences regarding the delivery of distressing information.’, 3, 4, Findings from these studies support three general principles: Communicate clearly, share emotion, and be gentle. Studies consistently reveal that patients desire more communication of information and feeling by their physician at the time of the delivery of bad news. The timing and delivery of information, however, require consideration of each individual’s needs. Cunningham and Sloper’ discovered that parents found it difficult to absorb anything but the most basic information at the time of diagnosis. The majority of parents wanted to be informed of the diagnosis and then provided with an opportunity to receive more specific information within 24 hours. In terms of sharing feelings, the study by Sharp and others7revealed that patients prefer physicians to show concern and caring while allowing the patients to talk. According to Quine and Pahl,4 physicians who attempted to control the conversation, without allowing much expression of emotion, were generally met with dissatisfaction. Insofar as being gentle is concerned, Shafer6 states that regardless of other tactics used in the delivery of distressing information, it is

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important to “view the process of breaking the bad news as an emergency, one that cannot fit into a time slot.” Physicians must have the flexibility to allow the time that is necessary and the courage to stay with the patient during his or her time of need. DELIVERING THE BAD NEWS

Informing patients of undesirable information, even when it represents confirmation of considered possibilities, demands advance preparation by the physician. Indeed, because the physician is usually the one to receive the news first, it may be necessary for the physician to grieve before meeting with the patient or family. This is especially the case in relationships characterized by strong bonds of time and friendship. The remaining needs requiring preparation represent initial goals for the first patient encounter and then form a backdrop against which emerging medical and interpersonal needs must be played. It is important to remember that, similar to rapport, attention to these needs is a process that must continue beyond the first critical contact with the patient. Minimize Isolation

This simple outcome must characterize the first and subsequent meetings with the patient. Given the reality that the first stages of diagnosis and treatment are times of greatest psychological disturbance, all health care providers involved with the patient facing a diagnosis of cancer need consciously to demonstrate the qualities of compassion, support, hope, and determination. Cultivate a Mutual Perception of the Problem

A mutual understanding of the prognosis and treatment and their impact on the patient’s life is essential. This impact is likely to change with time. Nonetheless a clear understanding of the hopes and realities of the situation must characterize the entire process. Respond to Initial Information Needs

Similar to hope, information needs change with the course of illness. Ultimately, patients need information relative to the disease, especially its prognosis. They require reassurance relative to their physician’s availability and must find a way to assimilate the reality of cancer into the perceptions of their families, their careers, and themselves. Simultaneously the physician has a set of pragmatic informational

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needs. Specifically, physicians must be sensitive to the emotional and cognitive responses to the initial diagnosis and treatment outcomes. This includes the risk of suicide, which is likely to be greatest shortly after the diagnosis and may recur if treatment appears to be ineffective. Respond to Immediate Discomforts

Anxiety, pain, and insomnia are likely to accompany the initial diagnosis. The physician, however, must not allow expectations of predictable reactions to inhibit appropriate responses to distress. Experiencing some emotional pain when coming to grips with bad news is probably necessary. If, however, medications are used to reduce this distress, they should be used in limited amounts and with some consideration given to the reality of suicide risk. OPERATIONAL ISSUES

1. Keep it simple. Patients are typically much more interested in the prognosis than details of the diagnosis and treatment. It is incumbent on the physician to confirm the accuracy of the diagnosis and to have basic information relative to the medical implications of the condition. 2. Timing. Distressing information should be provided in a face-toface encounter in a private setting that allows all concerned to absorb and respond to the information at hand. Parents usually want to receive bad news together and often request some time to be alone afterward. 3. Empathize. Imagine the patient’s cognitive and emotional reactions. The advantage of a preexisting relationship with the patient is that it may provide information relative to the patient’s strengths, weaknesses, and support systems. The physician needs to attempt to anticipate the meaning of the diagnosis to the patient, especially because it may be substantially different from the physician’s. 4. Anticipate questions. Some patients have immediate questions and react to the diagnosis in an extremely intellectual fashion. Other patients withhold requests for specific information and may even avoid asking specific information about the diagnosis. Unless the patient specifically requests not to be informed of the diagnosis, it is reasonable to allow the patient to control the initial flow of information. It may be possible to ask the patient such questions as ”what thoughts have you had about results of the test since we last met?” Eventually the physician must provide the information in a clear, compassionate manner. 5. Respect the patient’s initial defense mechanisms. This may include denial, which may present as a continuum from absolute rejection

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of the diagnosis to requests for repeated consultations and tests. Normally, however, denial emerges in the form of ”I can’t believe this is really happening.” It may take the form of avoidance and should not be a major obstacle to treatment, unless it specifically motivates the patient to reject clinical interventions. 6. Do not destroy all hope. Attempt to combine the bad news with some form of hope. Hope changes during the course of treatment and is paced by the outcome of interventions. Thus, it may begin with hope that the cancer is curable and may conclude with a hope that one’s life has had some meaning and that one is not going to be forgotten. Often, statements offering reassurance of pain control, continuity of care, and the like can ameliorate some of the initial distress of a bad diagnosis. 7. Be truthful. Given the potential of a previous relationship with the patient, it is possible to negotiate advance agreements relative to how and when to share the results of diagnostic testing. Often, those deliberations can include plans to have significant others with the patient at the time of delivery of results as well as the amount of detailed information desired by the patient. 8. Focus on immediate issues. Physicians are appropriately concerned about the diagnostic and prognostic accuracy of the information given to patients at the time the diagnosis is revealed. Most physicians believe that false hope is dysfunctional at best and tend to err on the side of portraying a less optimistic picture as an effort to guard against false hope. At the time of diagnosis, most patients want to know the diagnosis and immediate prognosis and need assurance that the physician will stay with them through the course of treatment. It is suggested that statements about the patient’s condition be focused on immediate issues, with less emphasis on the likely outcome. Even if the patient faces a fatal prognosis, it is important to focus on immediate issues such as pain relief, support, and Hospice care. CONCLUSION AND SUMMARY

Before significant efforts relative to patient education and subsequent informed decision making can occur, it is essential to assess the patient’s perceptions and emotional responses to the diagnosis. The direction and depth of this exploration are likely to be determined by such factors as quality of the previous relationship with the patient, the patient’s belief and support system, and the patient’s previous experience with trauma. Other determining factors are the sense of urgency with which medical decisions need to be made and the interpersonal skills of the physician. It is important at the time of diagnosis to understand and respond to the patient’s cognitive and emotional responses to the diagnosis. The sensitive physician allows time to acknowledge and legitimate those

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responses. It is often important to allow the ventilation of those reactions before further education and decision making can occur. By accepting and acknowledging the patient’s reactions, the physician can reduce the patient’s feelings of isolation and helplessness. The quality of such a relationship then becomes the foundation on which the patient and family and physician can begin to attend to the issues before them. References 1. Cunningham CC, Sloper T: Parent of Down’s syndrome babies: Their earlier needs. Child Care Health 3:325-347, 1977 2. Holland JC, Marchini A, Tross S: An international survey of physician practices in regard to revealing the diagnosis of cancer [abstr no. 39641. Fourteenth International Cancer Congress Abstracts of Lectures and Symposia. Basel, Karger, Free Communications, 1986 3. Lynch EC, Staloch NH: Parental perceptions of physicians’ communication in the informing process. Ment Retard 26:77-81, 1988 4. Quine L, Pahl J: First diagnosis of severe mental handicap: Characteristics of unsatisfactory encounter between doctors and parents. Occup Sci Med 22:53-62, 1986 5. Saunders C: Telling patients. District Nursing Sept:4, 1965 6. Shafer JP: Breaking bad news. Physician March/April:14-15, 1990 7. Sharp MC, Strauss RP, Lorch SC: Communicating medical bad news: Parents’ experiences and preferences. J Pediatr 121:539-545, 1992 8. Stedeford A: Couples facing death 11. Unsatisfactory communication. BMJ 283:10981107, 1981 9. Svarstad BL, Lipton HL: Informing parents about mental retardation: A study of professional communication and parent acceptance. SOCSci Med 1k641-645, 1977 10. Woodard LJ, Pamies RJ: The disclosure of the diagnosis of cancer. Prim Care 19:657663, 1992

Address reprint requests to John W. Carnes, PhD 500 7th Street, South St. Petersburg, FL 33701