Doctors' Strategies When Breaking Bad News to Terminally Ill Patients

JOURNAL OF PALLIATIVE MEDICINE Volume 6, Number 4, 2003 © Mary Ann Liebert, Inc.

Doctors’ Strategies When Breaking Bad News to Terminally Ill Patients MARIA J. FRIEDRICHSEN, SRN, B.A., Ph.D.1 and PETER M. STRANG, M.D., Ph.D.2

ABSTRACT Breaking bad news to patients with a terminal disease is a difficult task for physicians. The aim of this study was to study how doctors perceive their strategies when giving information to cancer patients about discontinuing active tumour treatment. Thirty doctors with different demographic characteristics working with patients with cancer in Sweden participated. Semistructured interviews were conducted and analyzed using a qualitative phenomenographic method. The goal when giving this information was described as making the patient understands while being as considerate as possible. However, the strategies for reaching this goal were different: (1) explaining and convincing information, (i.e., giving a long explanation about why treatment has to be discontinued); (2) softening the impact of the information, with the doctor recommending discontinuation of treatment; (3) and preparing either the patient or the physician himself/herself for the information; (4) adapting or tailoring the information to the patient, with the doctor actively seeking knowledge about the patient in order to be able to adapt the information to the patient’s level, or with the doctor briefly describing the situation and then remaining silent, allowing room for the patient’s reactions and questions (i.e., letting the patient take an active part). When giving information, the doctors’ goal was to make patients understand, but the strategies differed depending on the context. INTRODUCTION

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in the area of oncology is a well-studied phenomenon. Several studies have focused on cultural differences and attitudes among doctors in different countries,1 as well as on emotional stress2 and coping strategies. 3 Righetti et al.4 were of the opinion that the doctor’s own anxiety was a central factor in determining whether the patient was informed of the cancer diagnosis/prognosis and the way in which this was done. Studies5,6 have shown, however, that nowadays doctors are more open in relating the news

of a cancer diagnosis but remain less inclined to discuss a terminal prognosis. One study pointed out that the discussion dealt more with biomedical than with emotional issues.7 Patients and clinicians collude to avoid mentioning death or dying.6 Several studies8–10 have reported that patients with an advanced disease want to have information but took less initiative to initiate a discussion.11–13 Previous studies14–16 have also described the patient perspective in the transition to the late palliative phase. Five principles have been proposed to influence the giving of information: the respect for truth, the patient’s rights, the duty to inform, maintaining hope, and the

1 Department 2 Karolinska

of Welfare and Care, Linköping University, Norrköping, Sweden. Institutet, Stockholm, Sweden.

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sanctity of the individual contract between patient and doctor.17 Many studies have focused on the strategies involved in giving information. The strategies used have often been described as opposites (e.g., instrumental with a problem-solving task-focused approach versus the opposite) the affective, socioemotional approach.18 In other studies the strategies have been described as consumer-oriented/paternalistic, 19 passive/active,20 or affiliation/control.21 Studies have also been conducted on information strategies with respect to truth-telling in a palliative context. In the 1960s Glaser and Strauss 22 made a fundamental distinction between telling and not telling a dying patient the truth. Later studies revealed additional strategies,23,24 but they concerned general talks between a doctor and the dying patient rather than an actual information context. The aim of this study was to study the strategies doctors perceive they use when breaking bad news to patients with advanced cancer about discontinuing or not offering tumor-specific treatment because the cancer is incurable, and not expected to respond.

MATERIALS The medical directors of 10 different clinics were asked to assess the doctors at the clinic and then to ask those with different specified characteristics and experience in giving information in this context to participate in the study. The question of participation was brought up in clinical physician meetings as well as in person. The selection was based on a voluntary basis. The physicians were then approached with oral and/or written information about the study via mail or e-mail. Three physicians could not participate because of difficulties finding time for the interview. A maximum variation sampling was used regarding gender, age, speciality, and experience in order to obtain a wide range of variation in the data. The following inclusion criteria were used. The doctors were to: have had experience delivering such information; be Swedish-speaking; and accept tape-recording. Thirty doctors (21 men and 9 women) in the county of Östergötland in Sweden working in different specialities participated in this study. Demographic data are shown in Table 1. Their ages ranged from 29 to 65 years.

TABLE 1.

PARTICIPANT CHARACTERISTICS

Gender Male Female Age Less than 29 30–39 40–49 50–59 60 or older Medical degree Residents Specialists Consultants Specialitiesa Gynecology and gynecology/oncology Internal medicine Surgical specialities Oncology Pulmonary medicine Urology Geriatrics Working in University hospital Other Year working as a physician Less than 5 6–10 11–15 16–20 21 or more How many times giving this information the last year 0 1–5 6–10 11–15 16 or more Perceived experience by giving this type of information Little Moderate Great Education on breaking bad news Yes No Education and training a Basic medical school Clinical education Supervision Course Literature Other Do you perceive this task difficult? Yes, very much Yes, sometimes No a Respondents

21 9 1 5 11 12 1 6 4 20 4 4 9 6 3 3 3 13 17 3 4 4 8 11 1 2 12 3 12 5 7 18 21 9 13 4 5 7 17 3 7 19 4

could report more than one alternative.

METHODS The study was approved by the Research Ethics Committee, Faculty of Health Sciences, Linköping University. The doctors who agreed to

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BREAKING BAD NEWS TO PATIENTS

participate were approached with oral and/or written information about participation. Before the interviews the doctors were asked to select two events from their experience in delivering this specific type of information (one with a positive outcome and one with a negative outcome). Semistructured interviews were conducted by one of the authors (M.F.) at a location the doctors found suitable. Questions were posed about their experience, how they provided information to the patients, what they believed made the information positive or negative and why they wanted to provide the information in the way they did. Data collection took place during the spring of 2001. Interview times varied between 40–120 minutes. The interviews were tape-recorded and then transcribed verbatim.

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Analysis This qualitative analysis was performed with a phenomenographic approach. Phenomenography is a research approach developed in the domain of pedagogic research, where the second order perspective is central. Marton26 describes a distinction between the first order perspective, which explains how things really are (i.e., facts), and the second-order perspective, which describes how people experience and conceive the world.25 Marton 26 also describes a “what” and a “how”-aspect. The “what” aspect corresponds to the object in the experience, the key elements of the explored phenomenon (what is discussed?). The “how” aspect describes the structure of the phenomenon (how is it discussed?). The method aims at a description of people’s varying experiences based on interview data, without in-depth interpretation. The analysis in phenomenography aims at finding out which statements are the most relevant. The categorization in this study has been done according to Dahlgren and Fallsberg’s27 seven steps. 1. Familiarization. The material was carefully read. Comments were made in the margins, with the researchers direct associations, in this step without any detailed strategy. 2. Condensation. The most significant statements were selected, if they were repeated several times, or if patients explicitly stressed single statements. 3. Comparison. The statements were compared to find sources of variation or agreement by focusing on “what” (i.e., what was similar or

diverging) and on “how.” Explicit and implicit statements were also compared. Grouping. Similar answers were put together based on the previous comparison and questioning. Articulation. The statements within respective preliminary groups were critically analyzed and compared, in order to find the central content of the similarity within each groups of answers. The content of each category was to be limited, without too wide variations, and, without obvious overlapping between the categories. Labeling. The found categories were denoted by constructing a suitable expression, either by using an expression directly from the transcripts or, when necessary, by constructing one. Contrasting. The obtained categories were finally compared to each other, considering their mutual relationship, but this time in a more abstract way, using the researchers’ perspective.

Validation To obtain trustworthiness in this study the researchers used face validity to test the results obtained from the participants. Six months after the interviews, the doctors were asked to read the analysis with illustrative quotations and compare it with their own experience, in order to ensure the second-order perspective. Questions were posed about the analysis, if they could find their own strategy when reading the analysis and what strategy/strategies they used. They were also asked to make comments if there were any misinterpretation in the analysis. Twenty-two of 30 (73%) doctors responded. 20 answered that they could find their own strategy in the results, and 17 that they recognized these strategies among colleagues. Physicians who could not find their own strategy in the results mentioned one strategy as they could not recognise and another said that they used all strategies but could not separate them. The most used strategy according to the physicians’ answers was adapting, including the subcategories (Table 2).

RESULTS Strategies The strategy was described as a plan or thought-out approach for how information

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FRIEDRICHSEN AND STRANG TABLE 2.

VALIDATION RESULTS (n 5 22)

Did you find your own strategy in the analysis? Yes, completely Yes, partly No Do not know Do you recognize these strategies among your colleagues? Yes, completely Yes, partly No Do not know Strategies used by the physicians a Explaining and convincing Softening the impact Preparing Adapting Sounding out Verbal reduction a Respondents

4 16 2 — 4 13 2 3 13 6 10 10 3 3

could report more than one alternative.

should be delivered on one particular occasion or over a period of time. A central theme in the doctors’ perceptions was how they were going to provide facts and at the same time make the information easier in a psychological sense. All the strategies were described as being interactive (i.e., the physicians said that they tried to achieve some kind of verbal or nonverbal dialogue with the patient). Main and subcategories are presented in Table 3.

Explaining and convincing Central themes in this perception were explanation, the delivering of facts, and a convincing description of the basis for the decision. The goal was to have a medically well-informed patient and for the doctor himself/herself to stand by the decision in a consistent manner. It would be easier for the patient to understand if the doctor gave a clear, logical, and detailed explanation about the decision, and also repeated this information about the definitive decision. It was easier for the patient if the bad news was delivered in a convincing way, so that the patient was confronted with the bad news in an intellectual manner and was provided with a factual basis for the decision. My standpoint from the beginning was that she wasn’t a candidate for surgery, but that obviously wasn’t only my decision, it had to be hers too. So I talked with her and told her

about the existing possibilities and about what was not possible, and . . . tried in that way to lead up to the idea that perhaps nothing should be done at all. I spent a lot of time on this, convincing her that she shouldn’t be operated on. I think they should understand the line of reasoning, they shouldn’t just be informed about the decision, but they should get enough information so that they finally think it’s as obvious as we do to make this decision. You can’t say that now I’m going in to see the patient and find out what he wants, that’s not the issue here.

Softening the impact and giving vague suggestions Central to this conception were consideration, accommodation, and recommendation. The goal was a satisfied patient. The most important issue when delivering information was to spare the patient from as much suffering as possible. This could be done by vaguely suggesting or recommending the discontinuation of treatment. The doctor’s point of departure was that the patient had a choice regarding treatment, and his/her main task was to support the patient’s own decision, to avoid conflict, for example to agree to continued therapy if that was the patients wish. By avoiding an explicit confrontation involving a definite decision, and instead offering a more merciful suggestion, the doctor could allow the patient to make the choice himself/herself. There can be a patient who says that despite everything, he’s improved during the course of treatment, even though we can see on the X-rays that he’s worse . . . well, then you don’t just cut off the treatments but . . . okay, we’ll try, we’ll give 2–3 more treatments and then we’ll see how you’re doing. TABLE 3. MAIN

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SUBCATEGORIES

Explaining and convincing Softening the impact and giving vague suggestions Adapting Sounding out Verbal reduction Preparing Patient preparation Self-preparation

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It’s pure psychology . . . I don’t want to force a decision on a patient who’s attached some kind of hope to this. Treatment is almost always ended at the patient’s request. The physician could also try to soften the impact of the information by recommending or offering another type of treatment with a symptomatic or psychological focus, or by referring the patient to another department. This softened the impact of the information, as the patient still had something to look forward to and hope for. I feel frustrated at not having anything to offer. Then you try to gloss over it by coming up with some additional examination or treatment that might have some effect. You know the patient will grasp at any straw you offer. If there’s a 5% chance of improvement the patient takes it.

Adapting In this category the doctor wanted to make the message as easy as possible to accept by adapting and modifying the way the information was given according to what he/she thought were the patient’s needs. Central to this perception were patient activation, focusing on the patient, concentration, and adaptation. Sounding out. In order to adapt the information, the doctor could sound out how things were (i.e., actively collect as much information as possible on the patient such as by asking the patient to describe his perception of the illness trajectory and the present situation). The doctor’s main task was to study, analyze, and interpret what the patient said and his/her body language in order to determine the patient’s position, and thereafter to try to adapt to this level. The patient should be given information about the doctor’s decision, but it should be totally adapted to his/her situation. The information could consequently be adapted to different patients and be very different for each of them. It can be difficult to read the person in question. The important thing is to learn to understand the level at which the information should be delivered. You ask what the patient has understood and what they think the tests have shown. Then, by also observing body language you can find the right

level fairly well. If they are very happy-golucky and don’t want to know anything, or if they have understood the situation. Verbal reduction. The doctor could also try to adapt the information by using silence. The strategy was to briefly break the bad news and then remain quiet and wait for the patient’s reactions and questions. After that the patient would mainly direct the conversation. In order to facilitate the patient’s understanding, it was important to reduce the verbal information and respond to what the patient actually asked and wanted to know. If the doctor was verbally passive and allowed time for understanding to sink in, the patient would have a chance to catch up intellectually and emotionally. My thought is that I shouldn’t talk so much, because I have a feeling that the patient has the need to ask questions or talk, so you have to leave room for that. You can wait for questions, because I’m not so sure the patient has heard so much anyway, if you’ve just continued talking. I think they hear more and understand more if they’re allowed to think a little and ask their own questions. It’s important to have plenty of time.

Preparation Central to this perception was process planning and creation of a favorable long-term situation. The strategy was to work in a prophylactic way as a kind of preventive measure. Patient preparation. The strategy was to prepare the patient for the decision in an early phase by getting him/her involved in the disease process. The bad news would thereby be made easier for both parties and finally be delivered in mutual understanding at the final, confirming conversation. The basis for this final delivery of information was that the patient already had a partial or complete understanding of the situation through having been well informed during the illness trajectory. The decision was therefore a logical consequence in the trajectory and was described by the doctors as having grown to maturity through doctor-patient dialogue. I usually start preparing at the first consultation and then maybe you see the patient

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for 6 months, maybe 8 months or a year. And when you come to the point where things aren’t going well, then you’ve already provided a lot of information. You’ve prepared the patient and the family. Maybe I’ve mentally prepared myself as well. Well, you could say that that’s my strategy. A similar strategy could also be used during the initial work-up, before the patient was diagnosed. Here the task was to provide doses of information, and gradually add to that information, over a shorter period of time, and in that way get the patient involved and allow him/her the time to grow in understanding before receiving the definitive information. When it comes to these patients who come in for investigation, you don’t have all the facts right at the beginning, but you have a rather strong feeling about what’s going on. Then I try to give out portions of information, a little bit of information at a time day by day or every other day. Self-preparation. Preparation also dealt with the doctor’s own need to prepare himself/herself cognitively. The doctor would feel more confidence and conviction if the decision was based on fact and thoroughly worked through. Thereby the dialogue with the patient would consequently be facilitated. It’s not only a question of preparing for the discussion, but also of preparing for the decision, trying to find the different pros and cons for the different plans of action. If you’re not convinced, you shouldn’t see patients, because they can see that right away. If you’re even the slightest bit hesitant or if you start to leaf through the patient’s chart again when they ask . . . then you’ve had it. Self-preparation could also deal with anticipating possible reactions and questions from the patient or the family, what could be said, like giving themselves a pep talk to be able to endure the stress that could be involved in delivering the information. When I deliver bad news it’s mentally important for me to feel that I’m also mentally ready to go in to see this patient. To actively


think that this is of value to the patient and family, to give them time for closure and to have a few good weeks toward the end. In the end the information gains the patient and the family, it gives them time to finish things, to have weeks of quality in the terminal phase. You’re going to do something worthwhile . . . go for it. I prepare myself a lot at home. I can spend 15 minutes on this patient during the weekend, if you add up all the time; things pop up now and then . . . about what the son will say, the son who has previously questioned everything. What’s he going to say now, and things like that.

Choice of strategy Some doctors had a main strategy for giving information, but some also mixed different strategies. The strategy used, or a change of strategy, was thought by the doctors to depend on the context (i.e., on the actual situation and how it developed). A change of strategy could occur naturally as well as involuntarily during the course of the discussion or over a period of time. The doctor could feel forced to change strategies in order to reach his goal of having an informed and/or satisfied patient. The intention from the start could be to explain to and convince the patient or to adapt the information but end up with an attempt to soften the impact of the information. And I only gave the treatment for humanitarian reasons so that he wouldn’t go to a treatment centre out of the country. But it went wrong, he perceived it as a kind of psychological hope. Of course I should have been firm and said that, “I’m not giving any more treatments, but of course you can do what you want with your life”. Then at least I would have been honest with him and said what I thought. But I was actually cajoled into this. I felt sorry for the guy and changed strategies during the discussion. I thought it was for his own good, but it wasn’t. Choice of strategy was described primarily as relating to the interaction with the individual patient and his/her family as well as the doctor’s work situation. Factors that were also described as influencing the choice of strategy could be the


previous doctor-patient relationship, expectations and wishes, empathy and feelings, knowledge, experience and time. What is really lacking when you’re short of time is sensitivity and empathy. As soon as you feel under stress, have a lot to do and fall behind, and don’t feel really well yourself.. what disappears then, what you notice, is empathy and sensitivity . . . the focusing. You become more egoistic and then you give objective, correct information, but maybe you’re not sensitive enough. And you don’t have empathy enough to sense how things are. I’m a poorer human doctor, or fellow human being, you could say.

DISCUSSION This study was designed to explore doctors’ own perceptions of their strategies when delivering information and the thoughts behind these strategies. Four main strategies were found. Previous studies23,24 have presented a rather dismal picture of these strategies, where providing information was avoided, with pretence, denial, euphemisms, etc., as the predominant explanations. Physicians has been described as being afraid, vague, blunt, and without basic communication skills. The results of this study are not as negative. The strategy of explaining and convincing may be seen as a hard presentation of facts, without empathy. However, the doctors in this category found it necessary to confront the patient with the decision, as the goal was to make the patient understand. In their study, Todd and Still 23 referred to this strategy as to “try to disclose,” while the present study showed that doctors using this strategy actively wanted to disclose the information, not only to “try to disclose.” Miyajis’ 24 strategy of “telling what the patients need to know” is more similar to our category “explain and convince.” However, Miyaji proposed that the doctor’s own need to provide information was greater than the patient’s need to know, as the doctor is actually the one who decides what the patient needs to know. Another study28 showed, however, that dying patients responded that knowing what to expect about their physical health was important at the end of life. One advantage with the strategy “explaining and con-

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vincing” is that the patient is actually confronted with the information, and is thereby given the chance to understand and work through the information in the long run. This can be an advantage for patients with information-seeking behavior. A drawback might be that this kind of information might be too straightforward and be perceived as offensive, or that it is too fact-oriented and too detailed to be understandable, despite the effort expended in presenting the facts. Studies have concluded that patients do not want to hear facts as statistics and timeframes, 16,29 even if they want to know what is happening. Even if all strategies can be said to be interactive, it is appropriate to question whether this strategy allows for much of a dialogue or empathy. Fact-orientation might scare the patient and hinder him/her asking the most essential and difficult questions.15 Ptacek and Ptacek,30 concluded that special attention should be given to making the environment comfortable, taking plenty of time with the patient, and trying to empathize with the patient’s experiences. Some of the doctors used a conscious strategy of preparation. This strategy is pro-active in that it starts long before the final information is provided. In general recommendations, doctors are often encouraged to prepare the patient at the information situation by giving “warningshots.”31,32 The preparing strategy has many advantages as it mentally prepares both the patient and the doctor over a longer period. The patient’s previous knowledge and pre-understanding facilitates the final information process.15 Such a long-term strategy prepares the patient in a realistic way, providing possibilities for an increased acceptance of the inevitable. Preserving some form of hope was central to the softening the impact strategy, even if it meant that the doctor withheld some central information in order to maintain a positive attitude. The et al.33 described similar behavior (i.e., discussing laboratory results, treatments and symptoms, and thus creating a false optimism both for the patient and the doctor). All parties throughout the illness trajectory, despite a palliative goal, maintained this. Changing from a positive, tumor-focused strategy to a “poorer” strategy of symptom alleviation can be difficult if the strategy during the illness has been to uphold a positive facade. Softening the impact of the information may be a good idea from the beginning, but it also in-

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volves a risk, because the doctor, against his/her own convictions, might provide treatment because the patient is allowed a free choice. In many cases patients will choose an active treatment, despite the small chance of improvement,33–35 because they perceive it as the best alternative in a vulnerable situation. If the doctor takes the easy way out and lets the patient decide, this can negatively affect the patient in terms of unnecessary side effects and shortened survival as a consequence of inappropriate treatment, and that is not going to benefit the patient except mentally and for a short period (i.e., short-term psychological therapy). The patient may also regret his/her choice a few weeks later, which may cause feelings of depression and hopelessness. Another common strategy was to adapt or tailor the information. This strategy is very similar to Miyajis’ “translation of information into terms that patients can take.” However, there is one difference in that the doctors in this study explicitly described their interactive efforts to adapt the information. It can, however, be difficult to understand and interpret patients’ sometimes very subtle signals. Interpreting such signals requires both theoretical knowledge and clinical experience. This strategy is in accordance with the recommendations provided today, where doctors are encouraged to tailor individual information.31,32,36,3 7 This strategy requires openness and personal maturity in order to meet the patient at his/her own level. To achieve a good communication patients’ values and preferences must be acknowledged. For the doctors in this study, responsibility for the final decision-making was central and clearly related to the strategy chosen. Doctors who used the “explain and convince,” “adapting,” and the “preparing strategies” had made a decision ahead of time, whereas the doctors who thought their main task was to soften the impact of the information placed responsibility for the decision on the patient. An “explain-and-convince” doctor could stick to his/her decision even if the patient did not understand it, whereas the “softening the impact” doctor wanted to achieve agreement with a satisfied patient, using the simplest possible way. According to guidelines, doctors are encouraged to try to reach agreement with the patient regarding problems and plans, and they should also encourage the patient to participate in the decision-making according to their own wishes.36


However, in late palliative stages, which were the context of this study, optimal participation is difficult to define. The patient should have a chance to influence the decision, but on the other hand he/she cannot foresee the expected trajectory and might regret a decision where he has been given a free choice. The physician’s professional competence is therefore very important included medical knowledge and experience,38 tolerance, as well as emotional intelligence and empathy. 39 In contrast to previous studies, it was obvious that doctors do not stick to one strategy, but can use different strategies depending on the context. In earlier studies, strategies have often been described without their context.3,23 In the current study the context was very obvious: the doctor could feel forced to change strategies because of demands or anxiety on the part of the patient or the family. It could be very difficult to handle a patient with severe anxiety about death that refuses to accept that there is no longer any reasonable tumor-specific treatment. Time is an important factor in processing information, but it does not always help. Even with repeated information there is a risk of “failure” and the patient could still request further therapy. Obviously some doctors in this situation offer a mild treatment with few side effects as a pragmatic response to a difficult situation, as not all patients can accept impending death. The validation process in this study provided knowledge about the physicians’ assessment of the analysis. According to the phenomenographic analysis we wanted to assure the second-order perspective (i.e., that this analysis was in agreement with the physicians’ perceptions). Most physicians answered that they found their strategies in the analysis, which is a positive result. Only two physicians could not find their strategy in the analysis. This study should be read in its context, which is Swedish health care. In previous studies. 1,40 Nordic doctors have been forerunners in providing honest information to cancer patients. In other cultures doctors might choose to avoid such explicit information.1 There was no such explicit avoidance in this study, possibly due to the fact that it was performed in a Swedish context, or to the fact that the second order perspective (i.e., the doctor’s own perspective) was studied. An observational study might come to another conclusion and provide complementary knowledge.


CONCLUSION This study revealed four different main strategies used by doctors when disclosing bad news to severely ill cancer patients about discontinuing tumor-specific treatment. Choice of each strategy was dependent on the context.

ACKNOWLEDGMENT We extend special thanks to Jane Wigertz for skilful revision of the English text.

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