with early stage breast cancer attending a regional cancer centre in Southwestern .... call from a member of our research team who would explain the objectives.
Sociology of Health & Illness Vol. 20 No.1 1998 ISSN 0141–9889, pp. 71–95
Doing nothing is no choice: lay constructions of treatment decision-making among women with early-stage breast cancer Cathy Charles,1,2,3,5 Cristina Redko,4 Tim Whelan,1,5,6,7 Amiram Gafni1,2,5 and Leonard Reyno5,6,7 1
Department of Clinical Epidemiology and Biostatistics, McMaster University 2 Centre for Health Economics and Policy Analysis, McMaster University 3 Associate Member, Department of Sociology, McMaster University 4 Department of Anthropology, McGill University 5 Supportive Cancer Care Research Unit, McMaster University 6 OCTRF – Hamilton Regional Cancer Centre, Hamilton, Ontario 7 Department of Medicine, McMaster University
Abstract Open-ended personal interviews were conducted with 20 women with early stage breast cancer attending a regional cancer centre in Southwestern Ontario. We explored three related issues: (1) the extent to which these women perceived that they had treatment options; (2) their understanding of treatment benefits and risks; and (3) the role they wanted for themselves and their oncologists in treatment decision-making. We found, first, that many women who were presented with the choice to undergo some form of adjuvant treatment versus no treatment felt that ‘doing nothing was no choice’. Second, when interpreting probabilistic information on treatment benefits and risks, some women retained the idea of probability but thought that they personally would beat the odds. Others transformed the information to make it more personally meaningful, and still others assessed their risk status by comparing themselves with friends or relatives having the same disease. Third, many women preferred some form of shared treatment decisionmaking process with their oncologists. Women perceived treatment decisions as either ‘right’ or ‘wrong’ which raised the issue of blame for a ‘bad’ decision should the cancer return. Implications of these findings for clinical practice and for models of treatment decision-making are discussed. © Blackwell Publishers Ltd/Editorial Board 1998. Published by Blackwell Publishers, 108 Cowley Road, Oxford OX4 1JF, UK and 350 Main Street, Malden MA02148, USA.
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Keywords: shared decision-making, risk, patient preferences, lay perspectives, physician-patient relationship, breast cancer
Introduction Breast cancer is a common and potentially life-threatening disease with several critical decision points at which difficult and important treatment choices need to be made (e.g. lumpectomy versus mastectomy, adjuvant chemotherapy versus no chemotherapy). In the past, physicians working in this area often made treatment decisions with minimal, if any, patient input (Levine et al. 1992). More recently, it has been advocated that patients be provided with information about their disease and treatment options, as well as opportunities actively to participate in treatment decision-making (Hughes and Larson 1991, Emanuel and Emanuel 1992). The 1993 Canadian National Forum on Breast Cancer, for example, identified as important themes, increased communication between physicians and patients, support for the provision of information to patients, and shared treatment decision-making (National Forum on Breast Cancer 1994). Patient participation in treatment decision-making is advocated for several reasons. First, informed consent, now legally and ethically ensconced as a patient right seems to imply at least a minimum of shared decisionmaking in the form of the patient being informed about and consenting to treatment prior to any intervention (Sutherland et al. 1989). The principle of informed choice, i.e. disclosure of treatment alternatives, which goes beyond informed consent, has recently been endorsed at several government levels in Canada and the U.S. (Evans 1987, Greene 1992, Ontario Ministry of Health 1994, Nayfield et al. 1994). Second, patient participation is seen as a way to increase patient autonomy and/or control over treatment decisions that affect their well-being (Haug and Lavin 1983, Charles and DeMaio 1993, Haug 1994, Llewellyn-Thomas 1995). Third, because treatment options will often vary in their impact on patients’ physical and psychological well-being, and treatment outcomes are uncertain in the individual case, patient participation is seen as a means to ensure that the treatment selected is consistent with each patient’s values and preferences (Hurley et al. 1992, Levine et al. 1992, Charles et al. 1997, Gafni et al. 1997). Finally, patient participation in treatment decision-making has been linked to better health outcomes (Greenfield et al. 1985, Greenfield et al. 1988). Various normative models of the physician-patient relationship in treatment decision-making have been developed and advocated (Szasz and Hollander 1956, Veatch 1972, Quill 1983, Emanuel and Emanuel 1992, Cockerham 1993, Deber 1994, Weiss and Lonnquist 1994). These models may or may not correspond to patients’ and physicians’ actual experiences of treatment decision-making in real medical encounters. In this study, our © Blackwell Publishers Ltd/Editorial Board 1998
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aim was to explore the experience of treatment decision-making as seen through the patient’s eyes. We focused on three related issues: (1) the extent to which women with early stage breast cancer perceived that they had treatment options; (2) their understanding of the risks and benefits associated with different treatment options; and (3) the role they wanted for themselves and for their oncologists in the treatment decision-making process.
The setting Patients for this study were recruited by two oncologists at a regional cancer centre in Ontario, Canada serving the central west region of the province. Approximately 400 women with early stage breast cancer are referred here each year. Typically, these women are referred to the centre by their surgeon following treatment by mastectomy or lumpectomy. At the cancer centre, a consultation is held with a medical or radiation oncologist to discuss the benefits and side effects of adjuvant therapy and to make a treatment decision. At this consultation, the oncologist outlines the treatment options and their benefits and risks. The treatment decision may be made at the same consultation or at a follow-up appointment with the same oncologist. Patients are assigned to a specific oncologist at their first visit to the centre. They usually stay with the same oncologist for the duration of their treatment and follow-up unless the course of their disease changes. Oncologists treating patients at this centre are likely to be atypical in the extent to which they support and incorporate shared decision-making into their practice, because they are part of an academic environment with a strong clinical culture supporting this approach.
Methods Research design This is an exploratory and descriptive case study. According to Yin (1994) this design is appropriate when the focus of the study is on how and why questions (e.g. how women with early stage breast cancer perceive the treatment decision-making process with their oncologists), when the investigator has little control over events (i.e. the study involves no manipulation of people or variables), and when the focus of the study is on some real life phenomenon (e.g. treatment decision-making). Sampling method and sample characteristics A total of twenty women with stage I or II breast cancer (i.e. disease limited to the breast or axillary lymph nodes) attending the regional cancer centre for consultation regarding adjuvant therapy following surgical treatment © Blackwell Publishers Ltd/Editorial Board 1998
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were approached to participate in the study. Women eligible for the study included those who had: a histologic diagnosis of invasive carcinoma of the breast, clinical stage I or II; been treated by modified radical mastectomy or lumpectomy plus axillary dissection; Women were excluded from the study if they: had serious co-morbidity which would preclude adjuvant therapy (radiation therapy or chemotherapy) were unable to speak or read English fluently; were mentally incompetent, or had psychiatric or addictive disorders; had a previous diagnosis of breast cancer; failed to provide informed consent A purposive sample was used in this study. Eligible women were recruited consecutively from the case-loads of the two oncologists on the research team. Immediately after a consultation with their oncologist, eligible women were asked by the former if they would be willing to receive a phone call from a member of our research team who would explain the objectives of our study and solicit patient participation. Some women were newly referred to the cancer centre by their surgeon and were consulting with their oncologist about whether to undergo some form of adjuvant therapy. Other women were already in treatment for adjuvant therapy at the centre and were visiting their oncologist for a scheduled visit. Women were offered the choice of where they would feel most comfortable being interviewed. All but one chose to be interviewed at the hospital and a quiet room was located for this purpose. One woman chose to be interviewed in her home. The interviews were limited to 20 women largely because of time and resource constraints. However, we also found that informational redundancy was reached by this point. The twenty women had a mean age of 55.6 years. The age range was from 42 to 78. Eighteen of the women had undergone a lumpectomy and two had undergone a mastectomy. Eleven were being seen in the cancer centre for radiation treatment and nine for chemotherapy. Several women in each group were also seen regarding use of hormonal therapy (tamoxifen). The sample included ten women who were homemakers, four secretaries, two school teachers (one was retired), one social worker, one store manager, one industry worker, and one domestic worker. Eighteen of the women were married, one was divorced and one was single. The two participating oncologists were male. In addition to their clinical practice, both oncologists had research and teaching obligations and took leadership roles in the centre’s supportive cancer care activities. © Blackwell Publishers Ltd/Editorial Board 1998
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Data collection A qualitative approach to data collection and analysis was used because our primary objective was to explore the treatment decision-making process in depth and from the perspective of women with breast cancer, as well as to understand the meaning these women attributed to probability statements of risk. ‘Meaning seeking’ research such as this (Pearlin 1992) is more amenable to a qualitative approach within an interpretive paradigm than it is to more quantitative approaches which decontextualise women’s interpretations and experience (Mechanic 1989, Patton 1990, Neuman 1991, Chalmers and Thomson 1996). Following Blumer (1986), we conceptualise meanings as ‘social products’ that are developed through a formative process of interpretation, and hold that individuals’ definitions of a situation are important guides to their behaviour. Data were collected through open-ended, in-depth personal interviews with each patient at one point in time. Permission was gained to audiotape the interviews and patients were assured that all information would be kept confidential. The aim was to explore each patient’s experience and narrative account of her treatment decision-making process regarding adjuvant therapy within the overall context of her illness experience (Conrad 1987, Kleinman 1988, Charmaz 1990, Good et al. 1990, Saillant 1990, Charmaz 1991, Mattingly 1991, Good et al. 1994). Each interview started with a very broad question, for example, how did it all start for you? For each woman, this began her story at the point at which she was most comfortable. We wanted to elicit patients’ stories in their own words and from the perspective of the meaning they attached to this process. Because the study was exploratory, we did not develop hypotheses before the interview; nor did we set an explicit agenda of questions. The interview process was fairly nondirective, but we did have in mind three ‘sensitizing concepts’ of interest (Blumer 1986, Denzin 1989, Strauss and Corbin 1994). These were: decision-making, information, and doctor-patient relationship. Once the interview began, we found that most women were eager to tell their stories. Women usually started by describing the discovery of their first symptoms, then pathways that led them to the surgeon, the decisionmaking process with the surgeon, the referral to the cancer centre, their decision-making process regarding adjuvant therapy, and their hopes and fears for the future. As the interview progressed, the interviewer used probes to clarify issues, to obtain more detailed information on a particular topic the patient had raised, or to introduce a topic found in earlier interviews to be salient to women’s perceptions of treatment decision-making but which had not yet been raised in this specific interview (Charmaz 1990). Each interview lasted approximately 45 minutes and all interviews were undertaken by the same interviewer (a member of the research team) who was trained in both sociology and anthropology and had prior experience of conducting qualitative interviews with cancer patients. © Blackwell Publishers Ltd/Editorial Board 1998
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Data analysis All data were transcribed verbatim. Coding of the data was undertaken by the interviewer. Initially, the data were categorised according to the three sensitising concepts referred to above. Later, the analysis involved the recognition of categories emerging from the data, their patterns, meanings and relationships (Charmaz 1990). Data segments were reviewed within the context of the entire interview in order to develop meaningful codes. Data segments applicable to each code were compared with each other. Subsequently, data segments were compared with the properties of the codes that were generated from the initial data comparisons (Glaser and Strauss 1967). Examples of emergent categories included: ‘right’ and ‘wrong’ decisions, perceptions of choice, and positive attitude. Data were analysed with the help of NUD*IST a software programme specifically designed for qualitative analysis (Richards and Richards 1994). NUD*IST facilitates the tasks of coding data, and retrieving coded segments. It helps maintain a historical record of the insights and ideas generated during data analysis. The taxonomic tree structure of NUD*IST assists in analysing the relationship between higher and lower order categories since ‘children of any node can be treated as specialisations, in some sense, of the parent concept’ (Richards and Richards 1994: 460). On-going weekly de-briefing sessions with the research team were held throughout the data collection and analysis process (Glaser and Strauss 1967). In addition, a second member of the research team, trained in qualitative research, read all the transcripts, retraced the analytic steps involved in thematically coding data segments, and reviewed various versions of the tree structure analysis undertaken using NUD*IST. This audit trail of the steps involved in data analysis was undertaken to check for consistency in the interpretation of the data by a different member of the research team. While this study was underway, a second qualitative study, focusing more generally on the needs and concerns of women with early stage breast cancer was being undertaken at the same regional cancer centre (Willms et al. 1995) but with a different sample of women with early stage breast cancer. Even though the objectives of this latter study were broader and more open-ended than ours, there was some overlap in focus since in both studies, women were personally interviewed about their treatment decisionmaking experiences. This enabled us to compare and cross-check the consistency of information collected for the two different studies. The comparison was undertaken to help confirm the credibility of our findings and interpretations (Lincoln and Guba 1985, Denzin 1989, Willms et al. 1990) by exploring whether themes emerging in our study around the issue of treatment decision-making were consistent with themes found in the second study. Quotes presented in this paper are from women in our study. Patient pseudonyms are used to protect patient confidentiality. Quotes were selected because they were typical or illustrative of patients’ perspectives © Blackwell Publishers Ltd/Editorial Board 1998
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concerning the themes of interest. We have italicised certain segments of the quotes presented in order to emphasise passages that we feel are particularly relevant to the specific theme being discussed.
Results Patient’s perceptions of treatment options In the treatment of early stage breast cancer post surgery it is generally agreed by physicians that treatment options exist: e.g. radiation versus no radiation; chemotherapy versus no chemotherapy (Levine et al. 1992, Whelan et al. 1995). If there were no treatment options, there would be no choice to be made. Those who advocate patient participation in treatment decision-making do so in large part because they want to ensure that the treatment chosen is consistent with each patient’s values and preferences (Hurley et al. 1992, Charles and DeMaio 1993). Decision aids recently developed in the area of breast cancer, and used in the study cancer centre, are designed to provide patients with current evidence-based (research) information on the risks and benefits of various treatment options, and to help structure the decision-making process for choosing among alternatives (Levine et al. 1992, Whelan et al. 1995, Gafni et al. 1997). From the perspective of the oncologists working at the cancer centre, women with early stage breast cancer referred to them for consultation regarding adjuvant therapy had choices. However, this was not how most women in our study perceived the situation. The choice frequently presented to these women was either to have a particular treatment (e.g. chemotherapy) or not to have the treatment. From the oncologist’s perspective, presenting information about these two options allowed the patient to evaluate the risks and benefits of treatment versus no treatment and to make an informed choice. But, from the patient’s perspective, these two options were not perceived as of equal value. A choice could be made only when there were meaningful treatment options to choose from. When the options presented were limited to ‘doing something’ versus ‘doing nothing’, most women did not perceive this as a meaningful choice; rather, they felt that their illness gave them no choice but to undergo treatment. As Joanne stated: ‘doing nothing is no choice’. Samantha illustrates this same point: Samantha: But once he explained to me what the chemo is going to do to me, there was no way I felt I could refuse it. Because if I know something is going to help me to get at these cells, that is not going to be running wild in my body, and you know, getting cancer over . . . that was my next step . . . I feel there was no choice but to take it. Some women felt they had to undergo all relevant treatments available in order to reassure themselves that they had done everything possible to © Blackwell Publishers Ltd/Editorial Board 1998
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‘fight’ their cancer. This was perceived not so much as a choice but rather as the only decision that they could make in order to allay any feelings of doubt that they could have done more. The decision to do everything possible also helped them to maintain a positive attitude: Beth: By having chemo and radiation I have done everything that I can do now. So because I have done everything I have to live with the thought, I have done it, I am going to live. If I get it again . . . I start again. But I am really not looking for a recurrence. I am . . . I am looking at a positive outlook. I have done everything, it has ‘cured’. There is no cure, not a 100 per cent cure, but that is the best you could do. You’ve done all the treatments, then you’ve taken every step you can . . . to protect your future. Need the hope. The perceived need to maintain a positive attitude was a theme that permeated almost all of the women’s narratives: Kate: Hmm . . . you know, you try to take the positive approach that I mean, this is all going to work out and this is going to be fine. Natasha: . . . I lie here thinking about these things and I think, Okay, I’ve gotta be positive. Women believed that it was not sufficient to remove the cancer from their breast; they also had to remove it from their minds as well, which meant no negative thinking: Joanna: . . . and we will live with it and . . . I’m not going to let this get me down. Theresa: . . . I didn’t start doing the actual thing that I wanted to do, which was to learn how to . . . to think in another time and space . . . and to think beyond and to . . . I guess abolish the bad thoughts when they come . . . This emphasis on maintaining a positive attitude was also found by Willms et al. (1995) in their study of women with early stage breast cancer conducted at the same regional cancer centre as our study. They also found that not having a positive attitude was interpreted by some women as bringing on or stimulating disease recurrence. Assessing treatment benefits and risks In order to make informed choices patients need information, usually obtained from their physicians, about the benefits and risks of various treatment options. This patient-centred approach to information transfer is a relatively recent phenomenon in North America. In the past, many physicians adopted a more paternalistic approach, withholding information from © Blackwell Publishers Ltd/Editorial Board 1998
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patients on the grounds that they would not understand the complexities of medical diagnoses and treatment (Katz 1984, Bégin 1991) or that they should be protected from ‘bad news’. Withholding information has also been viewed as a form of social control (Freidson 1970, Zola 1972). In the current climate of legislated patient rights and increasing emphasis on the need for patient participation in treatment decision-making (Cockerham 1993, Weiss and Lonnquist 1994), disclosure of information about treatment risks and benefits has become much more prevalent. In the study cancer centre, this type of information was conveyed to the patient directly by the patient’s oncologist, who sometimes used a decision board consisting of written material and visual aids to provide the patient with information about her treatment choices, potential outcomes, and the quality of life associated with different treatment outcomes (Levine et al. 1992, Whelan et al. 1995). Much of the information conveyed to patients was in the form of probabilities; e.g. the probability of recurrence or of survival with various treatments. Our concern in this study was to explore women’s understanding of the treatment benefits and risks communicated to them in the medical encounter and the meanings they attached to this information. Throughout the narratives of the women interviewed, the language of ‘risks’ appeared, but the word ‘risk’ was seldom used. Women talked instead about percentages, odds and rates of survival and recurrence. Often they interpreted the scientific information that was learned from the physicians in such a way as to portray it in a more positive light or to show how ‘lucky’ they were to have a good prognosis. Deborah, for example, noted that she was pleased that her physician had used a decision board to inform her of the advantages and disadvantages of going through radiotherapy. She felt it was important to learn about the treatment options she had. This type of attention also made her believe she was being cared for in a special way. But she was perplexed by some of the information presented. She understood the basic message that radiotherapy would help prevent local recurrence, but would not increase her survival rate. However, she wondered why the survival rate should remain the same. Deborah added her own interpretation to the information presented in the decision board by speculating that future breast cancer trials would refute the evidence that radiotherapy does not increase survival: Deborah: No, no. The chemotherapy ah . . . obviously ups my odds of survival rate and not . . . having the cancer recur. I mean, that is a big plus. Unfortunately, the radiotherapy didn’t give the same odds . . . by having radiation doesn’t help your odds . . . of survival. Which I find very unpleasant [lowers voice tone]. Maybe some of the research that will be going on . . . will . . . ah . . . find that this is not the case. Like many of our study patients, Natasha believed she had no choice but to undergo all possible cancer treatments to increase her survival time, even if © Blackwell Publishers Ltd/Editorial Board 1998
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the chances of getting a real benefit from chemotherapy seemed ‘small’. Adopting a positive attitude, she interpreted the information conveyed in an optimistic light by believing that she might well be one of those few women who would benefit from chemotherapy and beat the ‘high’ probability of recurrence. Giving herself more survival time was also a way to allow more time for a cure for cancer to be discovered: Natasha: I think you want to give yourself every opportunity . . . prolong your survival you know and even though . . . you realise that the percentages are only maybe three or four per cent . . . I could still be that three or four per cent. Like, that could just give me that much more extra time. And time is important because they are making so many advances now in research that . . . God maybe . . . another year will make a difference in terms of, you know, something that they’ll find to . . . to help ummm . . . so going through chemo I guess was not . . . it wasn’t so much a decision. Louise declined chemotherapy based on the information she received about the small benefit that this treatment was expected to give her. She was willing to take the risk that she would do just as well with radiation as with chemotherapy, even though the latter was associated with a six per cent greater chance of survival. However, she was not sure if she had made the ‘right’ decision. Louise thought that the same six per cent could have a very different connotation if her cancer recurred: Louise: It was just, you know, a surprise. And ah . . . so when the physician said . . . I think the way he figured that there was maybe ah . . . six to an eight per cent better chance of survival rate with chemo. I didn’t know whether that . . . Interviewer: What does this six per cent mean to you? Louise: I know! I know! [emotional tone]. Interviewer: Is it little . . . is it large . . . Louise [sighs]: That is a good question. I am still not sure. Perhaps . . . you know, if something crops up, if a problem crops up, then I think maybe you know, maybe I wasn’t too smart [nervous laugh]. But the physician himself . . . the chemo physician felt . . . that it was ok to go for the radiation [only]. Between the two of us, we . . . so I went out of there feeling ok. But ah you know, there it was filed in the back of my head. While the above women spoke in terms of probabilistic notions of risk, some women simplified and transformed these numerical probabilities of © Blackwell Publishers Ltd/Editorial Board 1998
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risk into more basic categories that were personally meaningful to them and that were less uncertain. Beth, for example, did not retain the idea of risk reduction of cancer recurrence. She transformed the meaning of those percentages into her willingness to continue to live for the next 30 years: Beth: My physician found, I found a lump. My physician looked at the lump, he suggested the surgery, the specialist suggested the chemo and radiation. So I go! I did not question their . . . well I questioned radia . . . I questioned chemo, but . . . Interviewer: How did you question the chemo? In which sense? Beth: Is it necessary? Are you sure it is going to make it better? Are my odds definitely better? Interviewer: Are . . . were they, or are they? Beth: According to the surveys . . . the odds are better. It reduces the chances of recurrence. Interviewer: Do you know . . . Beth: From 70 per cent to 30 per cent . . . so that is a substantial difference. So because of that you have to look at . . . ok . . . do I live 10 years or do I live 30 years, so take your choice! Do you want to live or do you want not to live? Some people might choose 10 [years] if they don’t like their husband, they don’t like their kids. For Natasha, the information that the survival rate was 70 per cent was not personally meaningful because there was no way she could know in advance which group she would be in. It was easier for her to think in terms of dichotomous categories, i.e. someone either survives or dies from breast cancer. She tried to believe she was one of those who would survive: Natasha: I know intellectually in my head the numbers don’t mean a thing because . . . so what if it’s . . . 70 per cent chance of five-year survival, you know like I could be the 30 per cent that doesn’t last five years you know. Like I know . . . all this is in my head. But you say okay but there it is . . . it’s like the glass that is half empty or half full. I’m always sort of an optimist I usually think it’s half full. I’d like to think that . . . I’m gonna be the 70 per cent you know. Theresa assessed her ‘risk’ of dying of cancer by recalling acquaintances who had either survived or died of this disease. She knew several acquaintances who had died, and this made her afraid: © Blackwell Publishers Ltd/Editorial Board 1998
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Theresa: Well then just a statistic with . . . with cancer, it has to be treated. I feel very afraid. I feel very afraid . . . hum . . . because I’ve seen my two friends die . . . because another friend lost a good friend of breast cancer. Because it is such a deadly disease, because it does travel. Hum . . . I know many cancer patients. Not many. I know half a dozen cancer patients, one who lost her breast thirty years ago. They are fine. And they say, that you have to keep thinking about all the ones who got better. But I am afraid. I feel fear, like the fear I used to fear when I was coming home to the mad man I lived with . . . It grips me. It is like something tangible that grips me in its teeth [small pause] and it holds me there . . . and I can’t get away from it. And I said to Dr. S. right at the very beginning, that I felt that it might be better to die now. Barbara was also frightened because she was caring for her brother dying of cancer in the hospital when she discovered she had the disease herself. Hence, cancer had a very present meaning of death and suffering to her. It was also difficult for her to think about chemotherapy as a reasonable treatment option because when she was visiting her brother, she saw other patients suffering and dying while on this treatment. Cognitive psychologists would label Theresa’s and Barbara’s experience as an expression of the ‘availability bias’ (Tversky and Kahneman 1974). Both assessed their probability of survival based on their personal knowledge of an acquaintance who had already died of cancer rather than on the probabilistic concept of risk. The patient’s role in treatment decision-making Different models of treatment decision-making have evolved over time: e.g. the paternalistic, the shared, the informed and, the physician-as-patientagent model (Ryan 1992, Charles et al. 1997, Gafni et al. 1997). Each of these models portrays different roles for physicians and patients in terms of the amount of their involvement in the treatment decision-making process. In this study we wanted to explore the treatment decision-making process in terms of the role that patients wanted for themselves and for their oncologist. Most women wanted some form of shared process with the right to make the final decision; a few preferred that the oncologist decide. Many women in our study emphasised that doctors should have a role in treatment decision-making because ‘they are the experts’. They felt that these decisions required expertise, knowledge and clinical experience with cancer patients. Some women felt that they themselves should not be involved in the decision-making process because they lacked this latter essential knowledge: Beth: Do we know enough to make any decision? If you have no background how can you make a decision. The physicians see it every day, they know. But we don’t know so we probably should not make decisions. We should be told. You get up, you go to school, you come home and . . . really. Because what do we base it on? We have no prior know© Blackwell Publishers Ltd/Editorial Board 1998
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ledge of cancer, unless you have family members . . . and even then every circumstance is different. So should we make the decision? I would say perhaps we should not because we really don’t know enough about it. We don’t read the books, and we don’t study the statistics, and see the patients who have, and the patients who don’t. Other women felt that while physicians had the best knowledge to make the decision, their role was to provide a ‘recommendation’ or ‘advice’ while the women themselves would have the final say: Andria: Oh yes I would always want to make the final decision myself! . . . ah it means that I am in charge! In charge of my life. And if ever came the day I could not make the decision, I would like my husband to make the decision. I wouldn’t like the decision to come from a physician. I think the physician can advise you . . . but it is up to you to take his advice . . . or to say no. Deborah: And that was important for me too, to be informed. Not just from one telling me this is what you should do. Or this is what you shouldn’t do. But for me to know that having the medical team look at my charts and my files and present this . . . that was their recommendation. Now the choice was mine to make. Linda’s narrative also suggested that treatment decision-making was something to be done ‘together’ with physicians. Even though she believed that decisions should be ‘shared’, she also wanted the final say: Linda: It is my body. I’ve got only one crack, one chance of being around here . . . but we will make it together (decision-making with physician). But it will be my decision. Interviewer: What does this mean: to make it together? Linda: Well they are professionals. They know more about it than I do. I really don’t know a damn thing about cancer other than the fact that it is going to get you in the end, something is going to get you. Marie’s narrative illustrates that it is sometimes difficult for patients to engage in a decision-making process with physicians. She was reluctant to question her physician, (e.g. ask for information she did not understand well) because she viewed this as a sign of distrust. She feared that if she questioned the information given by physicians, she would also lose her conviction that she made the ‘right’ decision: Marie: I like to think that they (physicians) know what they are doing. And that I had the best information available to make this decision. © Blackwell Publishers Ltd/Editorial Board 1998
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Because that is the only way I could live with it. I have to believe that I made the best decision. And that there is no other option. So I have to trust those people. I have to trust Dr. R. And I have to trust Dr. S. so you don’t even question them sometimes. It is just, no . . . I trust them. While Marie’s narrative suggested a reluctance to participate in a decisionmaking process with physicians, Natasha talked about the importance of her participation. It gave her a sense of ‘control’ over her cancer and the positive feeling that she was involved with her treatment, even though she believed there was not really any decision for her to make: Natasha: I think most times your decisions are already made for you. But at least being told [emphasis on ‘told’] that you have that choice and making that choice . . . ummm . . . gives you some control . . . ummm . . . about what’s done to you. Being told something and being able to decide for your self [changes thought quickly] it’s like I guess it’s now that they’ve just kind of clicked it’s like being treated like a child or being treated like an adult . . . you know if somebody comes in and says . . . this and this and this uh you have to do this and this and this or this is going to be done to you . . . ummm . . . puts you in a position of . . . being like a child again. And I think I am old and mature enough to make my own decisions . . . and I would probably choose exactly what the physicians were to do, but . . . at least . . . you’re involved. The ‘right’ decision versus the ‘wrong’ decision was a recurrent theme that emerged throughout the narratives of the women interviewed. These women recognised that what is apparently a ‘right’ decision can evolve into a ‘wrong’ decision if the cancer recurs. But the dilemma they faced was how to know in advance what was the ‘right’ treatment decision. Moreover, these decisions were categorised definitively as ‘right’ and ‘wrong’; there was no place for uncertainty: Kathy: And when he (radiation oncologist) said that . . . later on . . . another time I have been back to him and I said . . . I said you know I said . . . it has bothered me, did I make the wrong decision? That was bothering me an awful lot [crying voice] and I said I have not accepted it . . . that I have cancer . . . I keep on thinking . . . I am going to wake up, it was only a dream. Louise also expressed this dilemma. She believed that physicians have to discuss treatment alternatives with patients so they will not be blamed for future bad outcomes: Louise: I’d say it was 75 per cent my choice. Ya. . . . I guess you have to say that is good because . . . ah . . . you got to sleep at night. And I feel © Blackwell Publishers Ltd/Editorial Board 1998
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sorry for the doctors because they can’t, they can’t just say ‘take this or take that’. And then if it doesn’t turn out well, we can blame them. Can’t we? For everything [crying softly]. These findings suggest that women in our study viewed treatment decisions as highly value laden, embedded in a normative language of ‘right’ and ‘wrong’. In a shared process, however, these women were confused as to how to allocate blame should the decision later turn out to be ‘wrong’. Louise’s narrative suggests that this dilemma does not occur when the physician is the sole decision-maker because responsibility is then concentrated in the ‘expert’ and the patient can blame him/her for ‘bad’ outcomes.
Discussion In this analysis we have explored three related issues: (1) the extent to which women with early stage breast cancer perceived that they had treatment options; (2) their understanding of the benefits and risks of various treatment options; and (3) the role they wanted for themselves and for their oncologist in the treatment decision-making process. In relation to the first question, we found that the treatment choice often presented to women was in the form of a ‘something’ versus ‘nothing’ choice, i.e. either to have a particular treatment, or not to have that treatment, rather than a choice between two treatment options. Many women did not subjectively experience the former as reflecting a meaningful choice situation between equal alternatives. In the post-surgery period, women were preoccupied with avoiding the possibility of disease recurrence. Many felt that the only decision they could make was to accept the treatment offered. By this means, they could reassure themselves that they had done everything possible to maximise the chances of avoiding disease recurrence. This finding suggests that, from the patient’s perspective, developing decision aids for situations in which the decision to be made is between two alternative treatments may be more helpful than those for situations where the choice is between one treatment versus no treatment. Women in our study expressed the importance of maintaining a positive attitude in preventing disease recurrence. The idea that a positive state of mind will fend off cancer while less positive states may cause its onset or recurrence has been a popular cultural belief in North America for several decades (Sontag 1977, Good et al. 1990, Saillant 1990). Women in our study attempted to demonstrate a positive attitude in several ways: by adopting an interventionist treatment strategy; by reassuring themselves that everything possible had been done to fight the disease; by believing that they would beat the odds – i.e. that (low) patient population-based probabilities of survival or (high) patient population-based probabilities of © Blackwell Publishers Ltd/Editorial Board 1998
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disease recurrence would not apply to them personally; and by transforming the meaning of uncertain probabilities into more elementary, and definitive categories that they could understand, relate to personally, and that could incorporate personal motivation as a factor affecting disease outcomes (e.g. the will to live). There is some evidence to suggest (although not from this study), that physicians tend to reinforce the broader cultural norm of thinking positively because they believe it positively influences patients’ illness experiences and views of their physicians (Good et al. 1990). This suggests that maintaining a positive attitude is a learned behaviour which patients are socialised into adopting. Interventionist as opposed to watchful waiting strategies provided women in our study with a sense of control over a disease which they saw as dangerous, frightening, unexpected, invasive, mysterious, and having the potential to spread rapidly throughout their bodies (as one woman commented: ‘running wild’ in her body). Taking action, doing something as opposed to doing nothing, may have been one of the few ways that the women could both feel and assert a sense of control over their illness. This may also have accounted for the view among many that they wanted the final say in the treatment decision. Taking aggressive treatment steps now was also seen as a way to reduce uncertainty and to alleviate the possibility of experiencing decision regret later that something else could have been done to promote a successful outcome. Gifford (1986) found in her study that some women with benign breast disease chose to undergo prophylactic mastectomy rather than to live with the risk of developing breast cancer in the future. The second issue we addressed was patients’ understanding of the benefits and risks of treatment options offered to them by their oncologists. Treatment decision making is usually seen as requiring two components: (1) scientific information about treatment benefits and risks (Evidence-based Care Resource Group 1994) and (2) patient preferences and values (Charles et al. 1997). While the scientific information usually resides in the physician, the values and preferences reside in the patient. This creates the challenge of how to bring the two components together to make a treatment decision (Charles et al. 1997). Oncologists at our study cancer centre attempted to resolve this dilemma by transferring the relevant scientific information to the patient. This information combined with the patient’s values and preferences would then enable her to make the treatment decision.1 This ‘rational actor model’ of research transfer (Table 1) assumes that patients will internalise the evidence-based information provided to them, fully digested and as stated. In this model, clinical epidemiologists produce the research evidence on treatment outcomes and synthesise and publish their findings in academic journals to be read by practising physicians. Scientific evidence in the form of probability statements (Douglas 1990) is then communicated (transferred) to the patient by the practising physician, or by the physician, with help from increasingly popular decision aids. The © Blackwell Publishers Ltd/Editorial Board 1998
Table 1 ‘Rational Actor Model’ of Physician-Patient Research Information Transfer Process (2)
(3)
Gathering the information
Communicating the information
Understanding and applying the information
- physician in clinical practice acquires scientific information on benefits and risks of different treatment options produced through clinical epidemiological research and published in academic journals.
– physician in clinical practice communicates scientific information to the patient, increasingly with the help of decision aids.
– patient increases her knowledge of treatment options and the benefits and risks of each; – patient feels more ‘informed’ and ‘empowered’; – patient increases her involvement in treatment decision-making.
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patient, perceived as a passive and empty vessel, is ‘filled up’ with this information. Once filled, she is thereby transformed into an informed and empowered decision-maker, ready to engage in the decision-making process.2 Taken to the extreme, evidence based decision-making has been equated with rational decision-making. In this view, choices made by patients which deviate from the scientific evidence are labelled as irrational decisions from which the patient must be protected by the physician (Brock and Wartman 1990). Paternalism comes full circle. This model leaves no active role for the patient in interpreting the scientific information or in trying to make it personally meaningful. In contrast to this model, we found in our study that women developed their own lay constructions of the scientific information on treatment risks which took several different forms. First, some women retained the language of probability when thinking about risks and benefits but added their own interpretation to the information in order to portray their risk status in a more positive light. Similar results have been found in quantitative studies (MacKillop et al. 1988, Siminoff et al. 1989). Second, some women transformed the probability information given to them in order to make it more personally meaningful. One woman, for example, transformed the meaning of a percentage risk reduction associated with a particular treatment into a willingness to live for the next 30 years. Others attempted to reduce uncertainty by transforming probabilistic information about survival rates into a more simple categorical description of two definitive outcomes: death or survival. The predominant perception among these women was that they would beat the odds, perhaps reflecting what Douglas (1985) describes as a sense of ‘subjective immunity’. Finally, some women assessed their chances of survival by assuming that their prognosis would be similar to a highly selected reference group of individuals personally known to them who also had cancer. These comparisons resulted, in our study, in a less positive outlook because the ‘availability bias’ was in the direction of knowing other patients who had negative outcomes (Tversky and Kahneman 1974). Our results suggest that patients are not a tabula rasa upon which scientific information can simply be imprinted. The meaning of the information is not inherent in the numbers themselves. ‘Rather, patients bring their own beliefs, values, understandings and everyday experiences to the tasks of assessing their personal risk status and interpreting treatment benefits (Gifford 1986, Parsons and Atkinson 1992, Adelsward and Sachs 1996, Chalmers and Thomson 1996, Williams and Calnan 1996). These beliefs and values serve as filters through which scientific information is interpreted, made understandable and given personal meaning. Table 2 depicts an ‘interpretive model’ of physician-patient transfer of scientific information which incorporates a more active role for the patient (and the physician) in interpreting the research evidence. This model also recognises that the meaning which lay individuals attach to treatment benefits and risks, and the ways in which they assess these, may well differ from those of © Blackwell Publishers Ltd/Editorial Board 1998
Table 2 ‘Interpretive Model’ of Physician-Patient Research Information Transfer Process (2)
(3)
(4)
Gathering the information
Communicating the information
Making the facts personally meaningful
Understanding and applying the information
- physician in clinical practice acquires scientific information on benefits and risks of different treatment options produced through clinical epidemiological research and published in academic journals.
– physician in clinical practice interprets and communicates scientific information to the patient, increasingly with the help of decision aids.
– the patient interprets the information provided and tries to make it personally meaningful; – the patient’s interpretation is influenced by her beliefs, values and social context.
– the patient’s interpretation of the scientific information is what gives the information personal meaning; – the meaning is not inherent in the facts themselves; – the patient’s interpretation may or may not result in her feeling more empowered, informed and likely to participate in treatment decision-making.
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physicians (Brown 1995, Gabe 1995, Grinyer 1995). Where the two world views come together in the medical encounter, clinical information which physicians hope to transfer to patients may be lost, transformed, or interpreted in a different way from that intended (Whelan et al. 1995). How to bridge the lay and medical world views poses multiple challenges to clinicians who, in the case of breast cancer, must also balance two potentially contradictory goals: promoting scientific accuracy in patients’ understanding of treatment benefits and risks, and helping patients maintain a positive attitude about their illness, treatment and prognosis. Table 2 also shows that increasing patients’ information in order to ‘correct’ for the latter’s knowledge deficit does not necessarily increase their level of participation in treatment decision-making. This is an empirical question. Studies have found that patient preferences for information and for participation in treatment decision-making are often not highly correlated (Ryan 1992). Some patients have high preferences for information but still do not want to participate in treatment decision-making (Charles et al. 1997). Other patients may be informed and want to participate in treatment decision-making but be prevented from taking an active role because of other barriers (e.g. physician practice styles). The third issue we investigated was what role women with early stage breast cancer preferred for themselves and for their physicians in the treatment decision-making process. Most women in our study wanted some form of shared decision-making process with their physicians, primarily because of the skills, knowledge and clinical experience imputed to the latter. Women tended to use a normative language of ‘right’ and ‘wrong’ when thinking about treatment decision-making. This was because a seemingly ‘right’ decision at one point in time could subsequently turn out to be a ‘wrong’ decision if the disease recurred. The potential for a ‘wrong’ decision, in turn, raised the issue of blame. In our society, blame is often assigned to individuals who are thought to bring health risks upon themselves through behaviours such as excessive smoking or drinking (Lupton 1993, Douglas 1994, Grinyer 1995). In our study the issue of blame was salient to women within the context of treatment decision-making because women were afraid of making the ‘wrong’ decision for which they might blame themselves or be blamed by others. At the same time, there was no way of knowing when the treatment decision was made, whether it would turn out to be ‘right’ or ‘wrong’. Sharing the decision-making process with physicians was one way to alleviate the burden of sole responsibility for treatment decision-making while broadening the responsibility for potentially ‘bad’ outcomes. In a shared process, however, it was not clear to these women what decision rule they should use to apportion blame should ‘bad’ outcomes occur. To our knowledge, the potential stress for patients of having to make an important treatment decision concerning a serious illness has not been commonly recognised by those who advocate an informed model of treatment © Blackwell Publishers Ltd/Editorial Board 1998
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decision-making where the patient is the sole decision-maker and the physician’s role is limited to transferring scientific information to the patient (Eddy 1990). Moreover, in our study, most patients seemed to prefer a role for their physician that went beyond information transfer to include as well provision of a treatment recommendation. The results of our study were based on the experiences of women with early stage breast cancer in one academically affiliated cancer treatment setting. As noted earlier, the regional cancer centre from which these patients were drawn is likely to be atypical in terms of the extent to which oncologists are motivated to practice shared treatment decision-making. Nonetheless, we think the study has value in terms of both describing the treatment decision-making experiences of these women (from their perspective) and in generating ideas that can be addressed in future research. For example, as part of a larger programme of research, we are exploring the meaning of shared treatment decision-making among women with early stage breast cancer and among physicians who treat them, patient and physicians’ preferences for shared decision-making and barriers to its implementation that patients and physicians perceive. Address for correspondence: Cathy Charles, Centre for Health Economics and Policy Analysis, Department of Clinical Epidemiology and Biostatistics, McMaster University, HSC 3H5, 1200 Main Street West, Hamilton, Ontario, L8N 3Z5, Canada Acknowledgements We would like to thank Mita Giacomini, John Eyles, Dennis Willms and members of the Health Polinomis Research Group at McMaster University for helpful comments on an earlier draft of this paper. We also thank two anonymous journal reviewers for their thoughtful and constructive comments. To Sharon Molnar and Carol Siksay who typed several versions of this paper we express our appreciation. The authors take responsibility for any errors in or omissions from the text.
Notes 1
2
For example, women will have different preferences regarding the trade-off between an X per cent decrease in the probability of a cancer recurrence with a specific treatment which is associated with uncomfortable side effects, versus foregoing the estimated future benefit by not having the treatment and avoiding the immediate side effects. Beck (1992: 57–8) describes a parallel ‘rational actor model’ of how experts view public perceptions of risk which deviate from scientists’ determination of risk. He states: This division of the world between experts and non-experts also contains an image of the public sphere. The ‘irrationality’ of ‘deviating’ public risk ‘per© Blackwell Publishers Ltd/Editorial Board 1998
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Cathy Charles, Cristina Redko, Tim Whelan, Amiram Gafni, Leonard Reyno ception’ lies in the fact that, in the eyes of the technological elite, the majority of the public still behaves like engineering students in their first semester. They are ignorant, of course, but well intentioned; hard-working, but without a clue. In this view, the population is composed of would-be engineers, who do not yet possess sufficient knowledge. They only need to be stuffed full of technical details, and then they will share the experts’ viewpoint and assessment of the technical manageability of risks, and thus their lack of risk. Protests, fears, criticism, or resistance in the public sphere are a pure problem of information. If the public only knew what the technical people know, they would be put at ease – otherwise they are just hopelessly irrational.
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