Discussing Disease Progression and End-of-Life Decisions

The physician-patient relationship is based on effective communication. In oncology, higher expectations for communication are driven by increased media attention to cancer, patient-directed pharmaceutical advertising, and advocacy for patient decision-making and participation. Physicians need to take responsibility for establishing effective communication with their patients.

The goals of communication are to establish rapport between the physician and patient, identify patient’s information preferences, ensure comprehension of information, provide support, elicit concerns, and involve the patient in the medical plan. The benefits of communication are apparent and well described in the literature. These include reduction of stress, resolution of problems, strengthening of coping behavior, and bringing together patients and their care partners.

Need for Better Physician-Patient Communication

Physician-patient communication needs to be improved. Discussing bad news, such as disease progression and end-of-life decisions, is not easy for the patient or the physician. For oncologists, the data clearly demonstrate, as Baile et al report, that nearly 70% of the participants in the symposium on breaking bad news at the 1998 American Society of Clinical Oncology meeting indicated discomfort in responding to patients’ emotional reactions to bad news. Only 5% had had any formal training in this area, and almost 50% rated their ability to break bad news as only poor or fair.

Communication training is neglected in the curriculum of health care professionals. It is counterintuitive, but the literature demonstrates that communication skills do not necessarily improve with experience. On the other hand, the literature provides evidence that strategies for communication can be learned through mentoring and specific targeted approaches.

Baile et al make an important contribution to the literature by providing both a six-step SPIKES protocol and hypothetical dialogues between a physician and a patient with advanced ovarian cancer. This article is a clear, practical, general illustration of effective communication. Although the article focuses on the physician’s role, this protocol is relevant to all health care providers.

Six-Step Protocol for Breaking Bad News

The six-step protocol for breaking bad news provides specific suggestions and language that have broad applicability to clinical situations. The SPIKES protocol has led to increasing confidence in breaking bad news, has been highly rated by oncology practitioners, and incorporates the recommendations of communications experts and patients. Particularly strong aspects of the SPIKES protocol are: (S) setting, (P) perception, (E) emotion, and (S) summary.

S: Setting—The right setting reduces communication barriers by ensuring that the patient and significant others are positioned closely and comfortably. Giving bad news over the telephone, in a setting without privacy, or with the physician standing up should be avoided. The authors discuss how to determine whom should be with the patient when bad news is discussed. They also illustrate how the physician might prepare the patient for bad news by saying, “I’d like to discuss the details of your tests with you.”

P: Perception—In this context, perception means understanding the patient’s perception of the illness at that point in time. One way that the clinician can elicit that information is to ask the patient to “tell me your understanding of the situation or illness so that I know where to begin.”

Understanding what the patient knows and acknowledges and listening carefully to the words that the patient chooses and the emotions expressed are important clues to the patient’s emotional state. These clues should guide the physician in delivering information. Taking the time to start from “where the patient is” is time well spent, even for the busiest practitioner.

E: Emotion—Baile et al stress the importance of providing information in an empathic manner. Concrete suggestions, such as pulling one’s chair closer, offering a tissue, or holding the patient’s hand, are practical steps that can be taken by anyone delivering bad news. These seemingly small gestures convey that the clinician cares about the patient, and recognizes that the response expressed is understood and respected.

·S: Summary—The physician should provide a summary strategy that includes plans for follow-up. The recommendation that physicians use a phrase such as “tell me more” to uncover patients’ real concerns, while ideal, is not always practical in a busy setting. In the absence of this, the authors suggest the use of summary statements, written material, and mobilization of support services to meet the patient’s concerns.

Steps for Disclosing Treatment Failures

Baile et al recognize that the most difficult encounter for the physician may be informing the patient that there are no viable anticancer treatment options. They describe key steps in disclosing treatment failures in sequential stages.

The first step is to assess the patient’s information needs and preferences. This can be done by establishing “ground rules” for the discussion or determining how much the patient wants to know (where total disclosure represents one extreme and minimal or no disclosure, the other). Useful phrases are: “What is your understanding of the situation so that I know where to begin?” or “Now for your questions and concerns.”

The next step is to respond to the patient’s emotional reaction, independent of the verbal content. The physician also needs to be aware of any discordance between the physician and the patient’s family or among family members and other health careproviders.

We found several concepts discussed in this article to be especially helpful. Striking the right balance between conveying hope that things can be done and the reality of a serious situation is reassuring to the patient. Overly optimistic expectations are counterproductive, as are comments such as “nothing further can be done.”

It is also important to recognize that patients’ information needs change over time and that each encounter has to be tailored to the circumstances at hand. Another technique is to normalize the patient’s response by saying, “I hear what you are saying,” or “Many patients feel that way.” The concept of “chunking” (giving information in small blocks) allows the physician and patient to incorporate new information in stepwise fashion.

Summary

This article is a practical, concrete guide to discussing disease progression and end-of-life decisions. As the authors wisely state, these are broad guidelines that need to be adapted to the clinician’s particular style and personality and the individual needs of the patient. Talking to people about life-threatening illness and end-of-life decisions is one of the physician’s most difficult tasks. Baile et al make a significant contribution by presenting a body of knowledge and specific suggestions to make this process better for patients, their doctors, and other health care providers.