3 ways to tell people they're dying

Telling people about the end of their life can be one of the most difficult things for medical staff to do. Surprisingly, these skills have only really been taught to medical students during the last couple of decades. Previously medical students would  rely on their own skills to navigate such situations, as Atul Gawande reflects on in his book Being Mortal.

“I learned about a lot of things in medical school, but mortality wasn’t one of them. Our textbooks had almost nothing on ageing or frailty or dying. How the process unfolds, how people experience the end of their lives, and how it affects those around them seemed beside the point. The way we saw it, and the way our professors saw it, the purpose of medical schooling was to teach how to save lives, not how to tend to their demise.” 

Thankfully there is a far more empathetic approach now with a number of processes to support it. Many have an acronym (of course they would), coincidentally the ones I have included here all happen to be 6 step processes. 

The most compelling I believe is the BREAKS version as I think it makes the most sense with the least effort and is therefore easier to remember for those using it. 

All the techniques provide interesting perspectives for designing the end of service or product relationships - setting the right environment, gauging what the user knows of the situation, providing lots of opportunity for questions - are just some examples of good practice in closure experiences. 

Below is a chart of the techniques in detail, and further links to their sources.

Framework for Breaking Bad NewsBREAKSSPIKES
Based on a number of people’s work: Brod et al, 1986; Maguire and Faulkner, 1988; Sanson-Fisher, 1992, Buckman, 1994; Cushing and Jones 1995). From Silverman J., Kurtz S.M., Draper J. (1998) Skills for Communicating with Patients. Radcliffe Medical Press Oxford ReferencesBREAKS’ Protocol for Breaking Bad News Vijayakumar Narayanan, Bibek Bista,1 and Cheriyan Koshy2SPIKES—A Six-Step Protocol for Delivering Bad News: Application to the Patient with Cancer Walter F. Bailea, Robert Buckmanb, Renato Lenzia, Gary Globera, Estela A. Bealea and Andrzej P. Kudelkab
Preparation: · set up appointment as soon as possible · allow enough uninterrupted time; if seen in surgery, ensure no interruptions · use a comfortable, familiar environment · invite spouse, relative, friend, as appropriate · be adequately prepared re clinical situation, records, patient’s background · doctor to put aside own “baggage” and personal feelings wherever possible Background An effective therapeutic communication is dependent on the in-depth knowledge of the patient’s problem. The accessibility of electronic media has given ample scope for obtaining enough data on any issue, though authenticity is questionable. It is highly desirable to prepare answers for all questions that can be anticipated from the patient. The physician must be aware of the patient/relative who comes after “googling” the problem. It may not be possible to answer all questions, but all reasonable doubts of the patient as well as his relatives should be cleared. If the physician has not done his homework meticulously, the session should be postponed. Apart from doing an in-depth study on the patient’s disease status, his emotional status, coping skills, educational level, and support system available are also reviewed before attempting to break the bad news. Cultural and ethnic background of the patient is also very important. The physician has to be sensitive to the cultural orientation of the patient, and it should be respected. The individual’s thinking and actions are governed by his cultural orientation. The physical set up is very important in accomplishing this difficult task. The mobile phone must be switched off. All physical barriers must be removed to maintain eye contact. A co-worker’s help for transcribing the conversation is helpful. Emotional breakdown can be expected; hence, the physician may have to console the patient as well. Regressive behaviors need to be tackled with a complimentary transaction. The appointment length should be sufficient to complete the taskSTEP 1: S—SETTING UP the Interview Mental rehearsal is a useful way for preparing for stressful tasks. This can be accomplished by reviewing the plan for telling the patient and how one will respond to patients' emotional reactions or difficult questions. As the messenger of bad news, one should expect to have negative feelings and to feel frustration or responsibility [55]. It is helpful to be reminded that, although bad news may be very sad for the patients, the information may be important in allowing them to plan for the future. Sometimes the physical setting causes interviews about sensitive topics to flounder. Unless there is a semblance of privacy and the setting is conducive to undistracted and focused discussion, the goals of the interview may not be met. Some helpful guidelines: Arrange for some privacy. An interview room is ideal, but, if one is not available, draw the curtains around the patient's bed. Have tissues ready in case the patient becomes upset. Involve significant others. Most patients want to have someone else with them but this should be the patient's choice. When there are many family members, ask the patient to choose one or two family representatives. Sit down. Sitting down relaxes the patient and is also a sign that you will not rush. When you sit, try not to have barriers between you and the patient. If you have recently examined the patient, allow them to dress before the discussion. Make connection with the patient. Maintaining eye contact may be uncomfortable but it is an important way of establishing rapport. Touching the patient on the arm or holding a hand (if the patient is comfortable with this) is another way to accomplish this. Manage time constraints and interruptions. Inform the patient of any time constraints you may have or interruptions you expect. Set your pager on silent or ask a colleague to respond to your pages
Beginning the session / setting the scene · summarise where things have got to date, check with the patient · discover what has happened since last seen · calibrate how the patient is thinking/feeling · negotiate agenda Rapport Building rapport is fundamental to continuous professional relationship. The physician should establish a good rapport with the patient. He needs to have an unconditional positive regard, but has to stay away from the temptation of developing a patronizing attitude. The ease with which the rapport is being built is the key to continue conversation. A hostile attitude has disastrous outcome, so is a hurried manner. It is necessary to provide ample space for the windows of self-disclosure to open up. The patient should be placed in a comfortable position. Present condition of the patient can be enquired through open questions. If the patient is not prepared for the bad news, especially after getting his /her symptoms well palliated, let him finish the reports of well being, and then try to take cues from his conversation to initiate the process of breaking bad news STEP 2: P—Assessing the Patient's PERCEPTION Steps 2 and 3 of SPIKES are points in the interview where you implement the axiom “before you tell, ask.” That is, before discussing the medical findings, the clinician uses open-ended questions to create a reasonably accurate picture of how the patient perceives the medical situation—what it is and whether it is serious or not. For example, “What have you been told about your medical situation so far?” or “What is your understanding of the reasons we did the MRI?”. Based on this information you can correct misinformation and tailor the bad news to what the patient understands. It can also accomplish the important task of determining if the patient is engaging in any variation of illness denial: wishful thinking, omission of essential but unfavorable medical details of the illness, or unrealistic expectations of treatment [56].
Sharing the information · assess the patient’s understanding first: what the patient already knows, is thinking or has been told · gauge how much the patient wishes to know [1] · give warning first that difficult information coming e.g. "I'm afraid we have some work to do...." "I'm afraid it looks more serious than we had hoped...." · give basic information, simply and honestly; repeat important points · relate your explanation to the patient’s framework · do not give too much information too early; don’t pussyfoot but do not overwhelm · give information in small “chunks”; categorise information giving · watch the pace, check repeatedly for understanding and feelings as you proceed · use language carefully with regard given to the patient's intelligence, reactions, emotions: avoid jargon Exploring Whenever attempting to break the bad news, it is easier for the physician to start from what the patient knows about his/her illness. Most of the patients will be aware of the seriousness of the condition, and some may even know their diagnosis. The physician is then in a position of confirming bad news rather than breaking it. The history, the investigations, the difficulties met in the process etc need to be explored. What he/she thinks about the disease and even the diagnosis itself can be explored, and the potential conflicts between the patient’s beliefs and possible diagnosis can be identified. The dynamics of the family and the coping reservoir of the patient are very important in delivering the bad news. Try to involve the significant other people of the patient in the decision-making process, if allowed by the patient. At least few patients may respond in a bizarre way to the bad news. Hence, a careful exploration of all these points should be carried out. A common tendency from the physicians is that they jump into premature re assurances. Premature reassurance occurs when a physician responds to a patient concern with reassurance before exploring and understanding the concerns.[25] Absolute certainties about longevity cannot be given to a patient. The prognosis can be explained in detail; with all available data. A reasonable conclusion based on the facts can be presented STEP 3: I—Obtaining the Patient's INVITATION While a majority of patients express a desire for full information about their diagnosis, prognosis, and details of their illness, some patients do not. When a clinician hears a patient express explicitly a desire for information, it may lessen the anxiety associated with divulging the bad news [57]. However, shunning information is a valid psychological coping mechanism [58, 59] and may be more likely to be manifested as the illness becomes more severe [60]. Discussing information disclosure at the time of ordering tests can cue the physician to plan the next discussion with the patient. Examples of questions asked the patient would be, “How would you like me to give the information about the test results? Would you like me to give you all the information or sketch out the results and spend more time discussing the treatment plan?”. If patients do not want to know details, offer to answer any questions they may have in the future or to talk to a relative or friend
Being sensitive to the patient · read the non-verbal clues; face/body language, silences, tears · allow for “shut down” (when patient turns off and stops listening) and then give time and space: allow possible denial · keep pausing to give patient opportunity to ask questions · gauge patient’s need for further information as you go and give more information as requested, i.e. listen to the patient's wishes as patients vary greatly in their needs · encourage expression of feelings, give early permission for them to be expressed: i.e. “how does that news leave you feeling”, “I’m sorry that was difficult for you”, “you seem upset by that” · respond to patients feelings and predicament with acceptance, empathy and concern · check patient’s previous knowledge about information given · specifically elicit all the patient’s concerns · check understanding of information given ("would you like to run through what are you going to tell your wife?") · be aware of unshared meanings (i.e. what cancer means for the patient compared with what it means for the physician) · do not be afraid to show emotion or distress Announce A warning shot is desirable, so that the news will not explode like a bomb. Euphemisms are welcome, but they should not create confusion. The patient has the right to know the diagnosis, at the same time he has the right to refrain from knowing it. Hence, announcement of diagnosis has to be made after getting consent. The body language of both the physician and patient is very important, and the physician is supposedly a mirror image of the patient. The embarrassment, agony, and fear of the patient should be reflected in the physician (mirroring the emotions), so that the patient will identify the physician as one close to himself. Announcement of the bad news must be in straightforward terms, avoiding the medical jargon completely. Lengthy monolog, elaborate explanations, and stories of patients who had similar plight are not desirable. Information should be given in short, easily comprehensible sentences. A useful rule of thumb is not to give more than three pieces of information at a time.[26 STEP 4: K—Giving KNOWLEDGE and Information to the Patient Warning the patient that bad news is coming may lessen the shock that can follow the disclosure of bad news [32] and may facilitate information processing. Examples of phrases that can be used include, “Unfortunately I've got some bad news to tell you” or “I'm sorry to tell you that…”. Giving medical facts, the one-way part of the physician-patient dialogue, may be improved by a few simple guidelines. First, start at the level of comprehension and vocabulary of the patient. Second, try to use nontechnical words such as “spread” instead of “metastasized” and “sample of tissue” instead of “biopsy.” Third, avoid excessive bluntness (e.g., “You have very bad cancer and unless you get treatment immediately you are going to die.”) as it is likely to leave the patient isolated and later angry, with a tendency to blame the messenger of the bad news. Fourth, give information in small chunks and check periodically as to the patient's understanding. Fifth, when the prognosis is poor, avoid using phrases such as “There is nothing more we can do for you.” This attitude is inconsistent with the fact that patients often have other important therapeutic goals such as good pain control and symptom relief.
Planning and support · having identified all the patient’s specific concerns, offer specific help by breaking down overwhelming feelings into manageable concerns, prioritising and distinguishing the fixable from the unfixable · identify a plan for what is to happen next · give a broad time frame for what may lie ahead · give hope tempered with realism (“preparing for the worst and hoping for the best”) · ally yourself with the patient (“we can work on this together ...between us”) i.e. co-partnership with the patient / advocate of the patient · emphasise the quality of life · safety net Kindling People listen to their diagnosis differently. They may break down in tears. Some may remain completely silent, some of them try to get up and pace round the room. Sometimes the response will be a denial of reality, as it protects the ego from a potential shatter. A gallows humor is also an expected behavior. These are all predictable responses. Adequate space for the free flow of emotions has to be given. Most of the time, patients will not actively listen to what the physician say after the pronouncement of the status. An overwhelming feeling of a grim fate can ignore further explanations and narratives from the physician’s part. Hence, it is advisable to ensure that the patient listens to what is being told, by asking them questions like “are you there?”, “do you listen to me?” etc. It involves asking the patient to recount what they have understood. Be clear that the patient did not misunderstand the nature of disease, the gravity of situation, or the realistic course of disease with or without treatment options. While trying to kindle the emotions, care has to be taken not to utter any unrealistic treatment options. The patient and their relatives will cling on to it, and subsequently feel embarrassed because of its unrealistic nature. Answers have to be tailored to the question, and physician should stay away from lecturing to the patient. Lecturing occurs when a physician delivers a large chunk of information without giving the patient a chance to respond or ask questions.[27] Beware of the “differential listening,” as the patient will listen to only those information he/she wants to hear. Dealing with denial is another difficult task. It may be necessary to challenge denial because the patient may have some important unfinished business to conduct, or because the patient is refusing treatment that might alleviate symptoms. In such situations, attempts to break the defense without mutilating the ego should be attempted STEP 5: E—Addressing the Patient's EMOTIONS with Empathic Responses Responding to the patient's emotions is one of the most difficult challenges of breaking bad news [3, 13]. Patients' emotional reactions may vary from silence to disbelief, crying, denial, or anger. When patients get bad news their emotional reaction is often an expression of shock, isolation, and grief. In this situation the physician can offer support and solidarity to the patient by making an empathic response. An empathic response consists of four steps [3]: First, observe for any emotion on the part of the patient. This may be tearfulness, a look of sadness, silence, or shock. Second, identify the emotion experienced by the patient by naming it to oneself. If a patient appears sad but is silent, use open questions to query the patient as to what they are thinking or feeling. Third, identify the reason for the emotion. This is usually connected to the bad news. However, if you are not sure, again, ask the patient. Fourth, after you have given the patient a brief period of time to express his or her feelings, let the patient know that you have connected the emotion with the reason for the emotion by making a connecting statement. An example: Doctor: I'm sorry to say that the x-ray shows that the chemotherapy doesn't seem to be working [pause]. Unfortunately, the tumor has grown somewhat. Patient: I've been afraid of this! [Cries] Doctor: [Moves his chair closer, offers the patient a tissue, and pauses.] I know that this isn't what you wanted to hear. I wish the news were better. In the above dialogue, the physician observed the patient crying and realized that the patient was tearful because of the bad news. He moved closer to the patient. At this point he might have also touched the patient's arm or hand if they were both comfortable and paused a moment to allow her to get her composure. He let the patient know that he understood why she was upset by making a statement that reflected his understanding. Other examples of empathic responses can be seen in Table 2⇓. View this table: In this window In a new window Table 2. Examples of empathic, exploratory, and validating responses Until an emotion is cleared, it will be difficult to go on to discuss other issues. If the emotion does not diminish shortly, it is helpful to continue to make empathic responses until the patient becomes calm. Clinicians can also use empathic responses to acknowledge their own sadness or other emotions (“I also wish the news were better”). It can be a show of support to follow the empathic response with a validating statement, which lets the patient know that their feelings are legitimate (Table 3⇓). View this table: In this window In a new window Table 3. Changes in confidence levels among participants in workshops on communicating bad news Again, when emotions are not clearly expressed, such as when the patient is silent, the physician should ask an exploratory question before he makes an empathic response. When emotions are subtle or indirectly expressed or disguised as in thinly veiled disappointment or anger (“I guess this means I'll have to suffer through chemotherapy again”) you can still use an empathic response (“I can see that this is upsetting news for you”). Patients regard their oncologist as one of their most important sources of psychological support [63], and combining empathic, exploratory, and validating statements is one of the most powerful ways of providing that support [64-66] (Table 2⇑). It reduces the patient's isolation, expresses solidarity, and validates the patient's feelings or thoughts as normal and to be expected.
Follow up and closing · summarise and check with patient · don't rush the patient to treatment · set up early further appointment, offer telephone calls etc. · identify support systems; involve relatives and friends · offer to see/tell spouse or others · make written materials available Summarize The physician has to summarize the session and the concerns expressed by the patient during the session. It essentially highlights the main points of their transaction. Treatment/care plans for the future has to be put in nutshell. The necessary adjustments that have to be made both emotionally and practically need to be stressed. A written summary is appreciable, as the patients usually take in very little when they are anxious. Offering availability round the clock and encouraging the patient to call for any reasons are very helpful. An optimistic outlook has to be maintained, and volunteer if asked by the patient for disseminating the information to the relatives. The review date also has to be fixed before concluding the session. At the end of the session, make sure that the patient’s safety is ensured once they leave the room. He/she should not be permitted to drive back home all alone, and find whether someone at home can provide support. Patient may even try to commit suicide if he/she feels extremely desperate. Patient should be assured that the physician will be actively participating in all ongoing care plans.STEP 6: S—STRATEGY and SUMMARY Patients who have a clear plan for the future are less likely to feel anxious and uncertain. Before discussing a treatment plan, it is important to ask patients if they are ready at that time for such a discussion. Presenting treatment options to patients when they are available is not only a legal mandate in some cases [68], but it will establish the perception that the physician regards their wishes as important. Sharing responsibility for decision-making with the patient may also reduce any sense of failure on the part of the physician when treatment is not successful. Checking the patient's misunderstanding of the discussion can prevent the documented tendency of patients to overestimate the efficacy or misunderstand the purpose of treatment [7-9, 57]. Clinicians are often very uncomfortable when they must discuss prognosis and treatment options with the patient, if the information is unfavorable. Based on our own observations and those of others [1, 5, 6, 10, 44-46], we believe that the discomfort is based on a number of concerns that physicians experience. These include uncertainty about the patient's expectations, fear of destroying the patient's hope, fear of their own inadequacy in the face of uncontrollable disease, not feeling prepared to manage the patient's anticipated emotional reactions, and sometimes embarrassment at having previously painted too optimistic a picture for the patient. These difficult discussions can be greatly facilitated by using several strategies. First, many patients already have some idea of the seriousness of their illness and of the limitations of treatment but are afraid to bring it up or ask about outcomes. Exploring the patient's knowledge, expectations, and hopes (step 2 of SPIKES) will allow the physician to understand where the patient is and to start the discussion from that point. When patients have unrealistic expectations (e.g., “They told me that you work miracles.”), asking the patient to describe the history of the illness will usually reveal fears, concerns, and emotions that lie behind the expectation. Patients may see cure as a global solution to several different problems that are significant for them. These may include loss of a job, inability to care for the family, pain and suffering, hardship on others, or impaired mobility. Expressing these fears and concerns will often allow the patient to acknowledge the seriousness of their condition. If patients become emotionally upset in discussing their concerns, it would be appropriate to use the strategies outlined in step 5 of SPIKES. Second, understanding the important specific goals that many patients have, such as symptom control, and making sure that they receive the best possible treatment and continuity of care will allow the physician to frame hope in terms of what it is possible to accomplish. This can be very reassuring to patients.

Header image courtesy of Alex Proimos