INTRODUCTION
With the passage of time, attitudes about how much information is to be divulged to patients about their medical conditions have evolved. In Decorum, Hippocrates wrote, “… conceal most things from the patient while you are attending him. Give orders with cheerfulness and serenity, turning attention away from what is being done to him [because] a forecast of what is to come can cause a turn for the worse.” In 1847, when the American Medical Association (AMA) published their First Code of Medical Ethics they agreed stating that “The life of a sick person can be shortened not only by the acts, but also by the words or manner of a physician. It is, therefore, a sacred duty to guard himself carefully in this respect, and to avoid all things which have a tendency to discourage the patient and depress his spirits.”
There has been a dramatic change in attitudes and practice patterns in this regard among physicians. In 1961, 90% of physicians preferred not to share a cancer diagnosis with their patients. In 1990, the data showed an upward trend in disclosure with 97% of surveyed physicians telling patients about their unfavorable diagnosis. This could be partly due to the improvement in treatment regimens for chronic diseases, such as cancer and AIDS, over time; with these advances, it has become easier for physicians to give bad news to patients while simultaneously offering the hope for effective treatment necessary to sustain them through their illness. However, along with treatments come treatment failures, recurrence of disease and what may be irreversible side effects of those treatments, requiring physicians to explore these less favorable scenarios with patients. Unfortunately, the literature has shown that most doctors receive little or no training in communicating bad news to patients, and even those who do it regularly are unsure of their ability to do it effectively.
COMMUNICATING BAD NEWS
Bad news is defined in the literature as “any information which adversely and seriously affects an individual’s view of his or her future.” Objectively, bad news can be a serious condition, particularly cancer, but could also include other fatal or serious diagnoses, the death of a loved one, treatment failures, or transitions in care (i.e., to hospice). It is important to remember that bad news is a subjective experience that depends on the patient’s expectations and understanding of the situation. It is hard to know how news will affect a person without this personal knowledge, but effective communication can help a patient to better understand and move forward with the information tailored to their particular clinical situation.
Common sense dictates that there are better and worse ways to offer bad news to patients. This type of conversation is delicate and challenging and has implications for both the provider and the recipient, yet most physicians are not trained in the art of this kind of communication. In one survey, only 5% of oncologists said that they learned to give bad news through a formal teaching program; most had either learned by sitting in on other clinicians giving bad news or had no formal teaching at all. Others learn by doing or by relying on their intuition and prior experience in breaking bad news to patients. However, research shows that communication skills do not improve with experience alone (see Chapter 1). Cultural and ethnic variables further complicate the process and will be discussed further toward the end of this chapter.
THE IMPORTANCE OF THE BAD NEWS DISCUSSION
Optimal communication in relaying bad news leads to better outcomes for both the physician and the patient. As providers feel more comfortable with their communication skills, they report less job stress, higher levels of personal accomplishment, higher levels of confidence, and less emotional stress and burnout. Patients will often feel encouraged to participate in difficult decision making when they are connecting with their physician, which can result in higher quality medical decision making. Good, open communication encourages trusting relationships to develop between doctor and patient, and patients report better outcomes, better satisfaction, improved understanding of their condition, and better adherence to treatment plans. Significant decreases in rates of litigation occur when patients feel that they were involved in a conversation that they felt was clear, honest, and empathic.
When communication surrounding the bad news discussion goes poorly, it can negatively affect the patient’s view of humanity; of the medical field, in general; and of their particular medical-care providers. Patients may see a poorly run conversation as a breach of the patient–physician partnership, which ultimately could affect their compliance with the treatment plan, level of hopefulness, and subsequent psychological adjustment to their disease. When the patient’s quality of life suffers, so could their health outcomes. There have been many studies to show that the inability of oncologists to deliver bad news effectively leads to short courses of futile, unnecessary chemotherapy being administered at the end of life.
The delivery of bad news is a complex interaction. Providers need to arrange the verbal component of actually giving the bad news, while simultaneously eliciting and responding to the patient’s emotions, dealing with the stress created by patients’ expectations for cure, involving patients in decision making, involving as many family members as are present, and all while trying to provide them with hope in the face of a potentially bleak situation. With such an emotionally charged environment, the opportunity for miscommunication is enormous. Given all of the issues surrounding breaking bad news to patients, it quickly becomes evident why learning communication as a skill is important for everyone involved.
Patient-centered communication is an approach in which attention is placed on using verbal and non-verbal behaviors to establish partnerships with patients. Physicians should help create and maintain patient-centered communication by clarifying with patients, in advance, how much information they would like to know before discussing it with them. Using the six-step approach described below—initially created by Dr. Robert Buckman and others—to establish patient-centered goals can smooth the progress in transitions of care.
SPIKES: A PROTOCOL FOR THE DELIVERY OF UNFAVORABLE NEWS
Buckman created a six-step protocol for giving unfavorable information to patients. In a review of the literature on Breaking Bad News published in the Journal of American Medical Association, most authors agree that following the SPIKES framework reduces stress on the patients receiving the bad news as well as the physicians charged with delivering the bad news (Table 3-1).
Physicians may have several goals on entering a discussion in which they plan to divulge bad news to a patient: they may wish to gather information from the patient in terms of what they know already of their illness as well as how much they want to know; to provide information to the patient that is clear and within the boundaries of what they desire; to support the patient by responding to emotional needs that arise during the conversation; and to develop a treatment strategy with the help of the patient. These are no small goals, but the SPIKES protocol can assist professionals in realizing them.
Set up the interview | Advanced preparation, pay attention to the physical setting: sit down, make eye contact, avoid interruptions, and invite patient to ask family to stay |
Assess patient’s Perception | “Tell me how you are doing.” “What do you understand about what’s happened so far?” |
Obtain the patient’s Invitation | “Is it okay to speak freely about the information that I have here?” “Is there anything that you wouldn’t want to know?” |
Give Knowledge and Information to the patient | “I’m afraid that I have bad news for you.” “The biopsy confirmed cancer.” |
Address the patient’s Emotions with empathic responses | “I wish I had better news for you.” “I can see that you’re upset. Tell me more about what you’re feeling.” |
Set goals | Summarize the conversation and make a plan to go forward |
Step 1 of the six-step SPIKES protocol (Set up the interview) involves advanced preparation for the discussion and choosing an appropriate physical setting in which it will occur. Mentally rehearse what you will tell patients and anticipate what they may ask or how they may react. Remember that although the conversation that is ahead will be challenging to hear for everyone, it will be important to communicate the information clearly and succinctly to begin preparing patients to plan their future. Consider where the conversation will happen. The space chosen for this purpose should be private, quiet, comfortable, and convenient for everyone involved. Identify the key players that should be present, this includes family or friends whom the patient identifies as being close supports, as well as practical additions to the team, such as nurses, interpreters, social workers, and consultants who know the patient well. Having a supportive colleague present during the discussion may also potentially bolster the comfort level of the provider when the news is particularly bad. In a hospital, the physical setting adds another level of complexity to an already difficult discussion. Finding a space to have a private conversation where the patient can comfortably attend—while maintaining the peaceful, supportive environment required to openly discuss sensitive information—often proves difficult. Seeking out empty family rooms or offices in advance can be helpful. In the outpatient setting, the physical space may not be as much of a problem as the time constraints. It is recommended in this step of the SPIKES protocol to set aside a large amount of time where one does not feel pressured to truncate the conversation in favor of other responsibilities. Many experienced clinicians find that time set aside at the end of a patient-care session is most convenient for this discussion. If possible, providers should hand off their pagers to another colleague and ask staff to hold telephone calls or other interruptions until the conclusion of the bad news discussion.
In addition to the optimal physical setting, physicians should prepare for the conversation by finding out the medical information necessary to answer any anticipated questions. Talking to consultants about specific diagnoses or test results in advance will help when formulating the treatment plan with the patient.
Something else to consider before escorting the patient into the conversation is who should be present and who should be delivering the bad news. There is no single right answer, but the healthcare provider who knows the patient best is the right person in most cases. The use of an interdisciplinary team helps in preventing discrepancies in information presented to the patient, and potentially aids in identification of patient needs. Nurses can also be helpful in acting as a supportive liaison between patients and physicians. Social workers can provide essential services such as talking with patients on how best to communicate with doctors, setting up interpreters, and arranging meetings with key people.
When entering into a discussion, in which sensitive information will be divulged, be mindful of body language and non-verbal cues that could be sending additional information to patients. In addition, be vigilant about identifying what information the patient’s body language is providing to you. Sitting down lets the patient know that there is no rush and making eye contact (though sometimes uncomfortable) assists in strengthening rapport between patient and provider.
In Step 2 of the SPIKES protocol (Perception), the goal is to assess the patient’s perception of what has thus far occurred to bring everyone together. Introduce yourself and state your role, and invite everyone else in the room to introduce themselves and state their reason for being there. This is a good time to acknowledge any time constraints that you might have. For example, “I have thirty minutes to meet with you before my next meeting.” Start then by stating the goals of the meeting, such as, “I asked you here today to discuss Mr. Green’s recent test results and how this affects the plan for the future.” An excellent rule of thumb at this point of the conversation is “before you tell, ask.” Find out what the patient and family know and what they want to know. Some patients may choose less-than-full disclosure in regard to their medical conditions, and you cannot know without asking. Some cultures protect their members from bad news by relaying this information to family instead of the patient; these issues must be explored early in the interview to ensure that this is truly the desire of both the patient and the family.Cultural differences in medical care and in discussing bad news are explored in more detail later in this chapter.
Once it is determined that everyone in the room wants to participate in the ensuing discussion, invite the patient to speak freely about their understanding of their experience thus far. Studies have shown that satisfaction in family meetings increases as the proportion of family talktime goes up. Attempt to minimize interruptions and actively listen to what patients and families describe. Invite them to participate freely in the information exchange and to dictate how much information is divulged at this initial meeting. Active listening ensures that nothing is left out of the conversation simply due to over-estimating what the patient and family already know. Step 2, when patients are invited to express what they already know, is a great time also to correct any misinformation that the family or the patient may harbor. It is also a good time to assess whether the patient or their support group are engaging in any sort of denial about their condition. As examples, wishful thinking, unrealistic expectations of treatment or omitting important details of medical care might surface during this time of the interview.
The purpose of Step 3 of the protocol (Invitation