Professional Documents
Culture Documents
Introduction
Truth-telling and breaking bad news to patients is one of the most difficult responsibilities in the practice of medicine. Although virtually all physicians in clinical practice encounter situations entailing bad news, medical school offers little formal training in how to discuss bad news with patients and their families. Although the majority of health providers believe that patients and caregivers should be told the truth about the prognosis, in practice, many either avoid discussing the topic or withhold information. However, avoiding the topic can have adverse outcomes, such as patients receiving burdensome and painful treatments and not having sufficient time to prepare for death. Unfortunately, this frequently happens as is clearly illustrated in the following account written by an oncologist (Rockwell, 2007):
Tears rolled down his cheeks as he stood motionless outside his dying sons door. He seemed to be standing vigil. We shook hands. Our eyes met. The lines of his face were etched with grief. I waited for him to speak. "No one told us..." "Im sorry?" I asked. "No one told us Jack was dying," he replied. His tears streamed.
therapeutic benefits of treatment, at relapse and terminal illness. This desire to shield patients from the reality of their situation usually creates even greater difficulties for patients, their relatives and friends and other members of the healthcare team. Although the motivation behind economy with the truth is often well meant, a conspiracy of silence usually results in a heightened state of fear, anxiety and confusion, rather than one of calm and equanimity. Ambiguous or deliberately misleading information may afford short-term benefits while things continue to go well, but denies patients and their family opportunities to reorganize and adapt their lives towards the attainment of more achievable goals, realistic hopes, and aspirations (Fallowfield et al, 2002), and eventually to prepare for death.
Indeed, healthcare professionals often censor their information giving to patients in an attempt to protect them from potentially hurtful, depressing, or so called bad news. There is a commonly expressed belief that what people do not know does not harm them. Analysis of doctor and nurse/patient interactions reveals that this well-intentioned but misguided assumption about human behavior is present at all stages of cancer care. Less than honest disclosure is seen from the moment that a patient reports symptoms, to the confirmation of diagnosis, during discussions about the
Many health professionals (HPs) express discomfort at having to broach the topic of prognosis, including limited life expectancy, and may withhold information or not disclose prognosis. A systematic review (Hancock et al, 2007) was conducted of 46 studies relating to truth-telling in discussing prognosis with patients with progressive, advanced life-limiting illnesses and their caregivers. Inclusion criteria were studies of any design evaluating communication of prognostic information that included adult patients with an advanced, life-limiting illness; their caregivers; and qualified HPs. Results showed that although the majority of HPs believed that patients and caregivers should be told the truth about the prognosis, in practice, many either avoid discussing the topic or withhold information. Reasons include perceived lack of training, stress, no time to attend to the patients emotional needs, fear of a negative impact on the patient, uncertainty about prognostication, requests from family members to withhold information and a feeling of inadequacy or hopelessness regarding the unavailability of further curative treatment. However, the studies reviewed suggest that patients can discuss the topic without necessarily increasing anxiety. Furthermore, avoiding the topic can have adverse outcomes, such as patients receiving burdensome and painful treatments and not having sufficient time to prepare for death. By discussing this information sensitively, and encouraging the patient to share in decision-making, the HP can help the patient reset goals and choose appropriate supportive treatments rather than those that are burdensome. May the common clinical conversation be used to explore whether or not seriously ill patients want to talk about possible limitations of life support? In a study by Lfmark and Nilstuna (2000), a clinical conversation with 20 seriously ill patients was used to identify different reaction patterns among typical DNR patients. Within 1020 minutes of conversation, most patients seemed to be ready to talk about fundamental questions of life and death. It was also quite easy to get an idea of both the patients values and his or her understanding of medical issues. For example, their knowledge about CPR was often very poor. Many patients approved. They also emphasized that it is the doctors duty to give such information to their patients. After talking about their diagnosis and prognosis, most patients said it was natural to talk about possible limitations of life support, and a substantial number immediately indicated that they did not want any life-sustaining treatment. Although their emotional reactions were different, no one seemed to be troubled or upset by talking about such issues. Many but not all patients said that they wanted a family member and possibly also a nurse to participate in the conversation.
patients themselves adequately. In difficult cases, sometimes a close relative (wife, husband, children or a friend) might be in a better position to communicate it. The suffering that results from this gesture is justified by the fulfillment of a final duty. Man needs to be forewarned of the moment of his death so that he can prepare himself with a lucid mind. He may need or want to settle matters with others, fulfill moral, familial, and personal obligations which cannot be delegated. For a seriously-ill and incurable patient but with a certain chance of survival (e.g., primary stage of cancer), the patient should be gradually informed about facts related to his illness. The physician, with the nurses assistance, will judge whether it is advisable to inform the patient immediately or to defer it until a more opportune moment. In this regard, the interest of the patient (personal, professional, familial and religious) should be taken into consideration. (Monge, 1994)
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reactions and empathize with the patient. Encouraging/validating emotionsoffer realistic hope based on the patients goals and deal with your own needs. (Vandekieft, 2001)
Knowledge (K)
Before you break bad news, give your patient a warning that bad news is coming so he/she can prepare psychologically for it. Examples of warning statements include: Unfortunately, Ive got some bad news to tell you. Im so sorry to have to tell you. When giving your patient bad news, use the same language the patient uses. For example, if your patient uses the words growth and spread, try to use these words. Avoid medical jargon or technical terms as they are hard to comprehend and remember during enormous emotional turmoil. Give the information in small chunks and clarify that the patient understands what you have said at the end of each chunk (and you may need to repeat this several times, particularly when the patient looks nonplussed even if they say they understand): For example: Do you see what I mean? or Is this making sense so far? Ask often. Tailor the rate at which you provide information to your patient. If the indication is that your patient understands perfectly so far, move on to the next piece of information. If he or she isnt clear, go over the information again. As emotions and reactions arise during this discussion, acknowledge them and respond to them.
Setting (S)
Ensure privacy. Involve significant others. Sit down. Look attentive and calm. Adopt a listening mode through the communication skills of silence and repetition. Be fully available to this important discussion, making arrangements for the phones to be answered by other staff members, putting mobile phones into silent or meeting mode, and making sure that staff members do not interrupt the meeting.
Perception (P)
Follow the before you tell, ask principle. Before you break bad news to your patients, you should glean a fairly accurate picture of their perception of the medical situationin particular, how they view the seriousness of the condition. The exact words you decide to use depend on your own style. Here are a few examples: What did you think was going on with you when you felt the lump? What have you been told about all this so far? Are you worried that this might be something serious? As your patient responds to your question, take note of the language and vocabulary that he or she is using and be sure you use the same vocabulary in your responses. This alignment is so important because it will help you assess the gap (often unexpectedly wide) between the patients expectations and the actual medical situation. If a patient is in denial, it is often helpful not to confront the denial at the first interview.
Empathy (E)
It is much more usefuland more therapeutic to acknowledge patients emotions as they arise and to address them. The technique that is most useful for this task is called the empathic response, and it comprises three straightforward steps: Step 1: Listen for and identify the emotion (or mixture of emotions). If one is not sure what emotion the patient is experiencing, an exploratory response can be used, such as How does that make you feel? or What do you make of what Ive just told you?
Invitation (I)
Obtain overt permission from the patient if and how much he/she wants to know. This respects the patients right to know (or not to know). Some examples of ways to address this follow:
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Setting (S)
Ensure comfort and privacy; sit down next to the patient. Ask if family members or others should be present. Introduce the subject with a phrase such as: Id like to talk with you about possible health care decisions in the future.
Perception (P)
An informed decision about code status is only possible if the patient has a clear understanding of their illness and prognosis. Ask an open-ended question to elicit patient understanding about their current health situation. It is important to get the patient talking if the doctor is doing all the talking, it is unlikely that the rest of the conversation will go well. Start with phrases such as: What do you understand about your current health situation? What have the doctors told you about your condition? If the patient does not know/appreciate their current status this is time to review that information.
Invitation (I)
Find out what the patient expects. Ask the patient to consider the future. For example: What do you expect in the future? What goals do you have for the time you have leftwhat is important to you? This step allows you to listen while the patient describes a real or imagined future. Many patients with advanced disease use this opening to voice their thoughts about dyingtypically mentioning comfort, family, and home, as their goals of care. If there is a sharp discontinuity between what you expect and what the patient expects, this is the time to clarify. Listen carefully to the patients responses; most patients have thought a lot about dying, and only need permission to talk about what they have been thinking. Respond with clarifying and confirming comments such as: So what youre saying is you want to be as comfortable as possible when the time comes? What youve said is you want us to do everything we can to fight, but when the time comes, you want to die peacefully? Whenever possible, ask patients to explain the values that underlie their decisions: Can you explain why you feel that way?
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Share the Information. Discuss a Do not Resuscitate (DNR) order. Use language that the patient will understand. Give information in small pieces. Dont introduce cardiopulmonary (CPR) in mechanistic terms (e.g. starting the heart or putting on a breathing machine). Never say: Do you want us to do everything? Everything is euphemistic and easily misinterpreted. Using the word die helps to clarify that CPR is a treatment that tries to reverse death. To most lay-people, when the heart and/or lungs stop, the patient dies. If the patient and doctor mutually recognize that death is approaching and the goals of care are comfort, then CPR is not an appropriate medical intervention and a clear recommendation against CPR should be made. You can say: We have agreed that the goals of care are to keep you comfortable and get you home. With this in mind, I do not recommend the use of artificial or heroic means to keep you alive. If you agree with this, I will write an order in the chart that if you suffer a cardiopulmonary arrest, no attempt to resuscitate you will be made. If the clinical situation is more ambiguous in terms of prognosis and goals of care, and you have no clear recommendation, the issue of DNR can be raised by asking: If you should suffer a cardiopulmonary arrest in spite of all of our efforts, do you want us to use heroic measures to attempt to bring you back? How do you want things to be when you suffer a cardiopulmonary arrest?
Empathize (E)
Respond to emotions. Strong emotions are common when discussing death. Typically the emotional response is brief. The most profound initial response a physician can make may be silence, providing a reassuring touch, and offering facial tissues
Table 1. S-P-I-K-E-S Strategy in Breaking the Bad News and Discussing Code Status
S Setting o o o o o o DISCLOSURE (BREAKING THE BAD NEWS) Privacy Involve significant others Sit down Look attentive and calm Listening mode: silence and repetition Availability ADVANCE DIRECTIVES (DISCUSSING CODE STATUS) o Privacy o Involve significant others o Sit down o Look attentive and calm o Listening mode: silence and repetition o Availability o Introduce the subject: Id like to talk with you about possible health care decisions in the future. Find out how much the patient knows. o What do you understand about your current health situation? o What have the doctors told you about your condition?
P Perception
Find out how much the patient knows. o What did you think was going on with you when you felt the lump? o What have you been told about all this so far? o Are you worried that this might be something serious?
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K Knowledge
E Empathy
Ask probing questions: o How does that make you feel? o What do you make of what Ive just told you? Respond to emotions. Identify the emotion and its origin. o Hearing the result of the bone scan is clearly a major shock to you. o Obviously, this piece of news is very upsetting. o Clearly, this is very distressing. Validate or normalize feelings: o I can understand how you can feel that way. Summarize the information. Give the patient an opportunity to voice any major concerns or questions. Plan the next steps that need to be taken and the roles the doctor and the patient will play in taking those steps.
Find out what the patient expects o What do you expect in the future? o What goals do you have for the time you have leftwhat is important to you? o So what youre saying is you want to be as comfortable as possible when the time comes? o What youve said is you want us to do everything we can to fight, but when the time comes, you want to die peacefully? o Can you explain why you feel that way? Share the information. Discuss a CPR or DNR order. Give warning statements: o We have agreed that the goals of care are to keep you comfortable and get you home. However, if you should suffer a cardiorespiratory arrest in spite of all of our efforts, do you want us to use heroic measures to attempt to bring you back? o How do you want things to be when you suffer a cardio-respiratory arrest? If you are asked to explain heroic measures, then describe the purpose, risks and benefits of CPR or DNR in greater detail. Check perception. o With this in mind, I do not recommend the use of artificial or heroic means to keep you alive. If you agree with this, I will write an order in the chart that if you suffer from cardio-respiratory arrest, no attempt to resuscitate you will be made. Respond to emotions. Identify the emotion and its origin. The most profound initial response a physician can make may be silence, providing a reassuring touch, and offering facial tissues
Summarize the information. Give the patient an opportunity to voice any major concerns or questions. Clarify the orders and plans that will accomplish the overall goals discussed, not just the CPR or DNR order: o We will continue maximal medical therapy to meet your goals. However, if you suffer a cardio-respiratory arrest, we wont use CPR to bring you back. o It sounds like we should move to a plan that maximizes your comfort. Therefore, in addition to a DNR order, Id like to talk further with you how we can best do that.
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Conclusion
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Despite the challenges involved in communicating bad news and discussing code status, physicians can find tremendous gratification in providing a therapeutic presence during a patients time of greatest need. A growing body of evidence demonstrates that physicians attitude and communication skills play a crucial role in how well patients cope with bad news and that patients and physicians will benefit if physicians are better trained for this arduous task. Patients cannot always be cured and the goals of care would shift towards palliation and comfort measures only. These are precisely the times that professionalism and compassion most acutely call the physician to provide hope, and to accompany the patient, to comfort the relatives, and to help them face the illness until the terminal phase, with empathy and real concern for them.
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References
1. Rockwell L. (2007) Truth Telling. The Art of Oncology: When The Tumor Is Not The Target. Journal of Clinical Oncology, Vol 25, No 4: pp. 454455 L J Fallowfield L, V A Jenkins V, Beveridge H (2002). Truth may hurt but deceit hurts more: communication in palliative care. Palliat Med vol. 16 no. 4 297-303 Monge M (1994). Telling the Truth to the Patient. In Ethical Practices in Health and Disease. Manila: Sinag-tala Publishing Inc. (pp. 169-180).
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