Faith, hope, and charity

Abstract

Objective To explore why cancer patients do not want or seek information about their condition beyond that volunteered by their physicians at times during their illness. Design Qualitative study based on in-depth interviews. Setting Outpatient oncology clinics at a London cancer center. Participants 17 patients with cancer diagnosed in previous 6 months. Main outcome measures Analysis of patients' narratives to identify key themes and categories. Results While all patients wanted basic information on diagnosis and treatment, not all wanted further information at all stages of their illness. Three overarching attitudes to their management of cancer limited patients' desire for and subsequent efforts to obtain further information : faith, hope, and charity.Faith in their doctor's medical expertise precluded the need for patients to seek further information themselves. Hope was essential for patients to carryon with life as normal and could be maintained through silence and avoiding information, especially too detailed or “unsafe” information.Charity to fellow patients, especially those seen as more needy than themselves, was expressed in the recognition that scarceresources—including information and explanations—had to be shared and meant that limited information was accepted as inevitable.Conclusions Cancer patients' attitudes to cancer and their strategies for coping with their illness can constrain their wish for information and their efforts to obtain it. In developing recommendations, the government's cancer information strategy should attend to variations in patients' desires for information and the reasons for them.

INTRODUCTION

Over recent years, communication and information have increasingly been considered important in helping people to cope with cancer.^1,2,3,4,5,6A diagnosis of cancer may invoke uncertainty, fear, and loss that can be alleviated by information.^7,8,9Research has indicated that the majority of cancer patients want to be informed about their illness.⁵ It is also recognized, however, that patients vary in how much information they want and that this may change during their illness. These attitudes are reflected in the efforts that patients make to obtain further information or to resist information that is offered to them.¹⁰ In 1980, when he was an oncologist and editor of the New England Journal of Medicine,Ingelfinger reported that when he discovered he had cancer, he did not wan tall available information nor have to face the uncertainties of the different treatment choices offered to him.¹¹ This hints at the complexity of providing information in oncology ; information may be ignored or avoided by patients, regardless of their prior knowledge or occupation.

For those who provide care to cancer patients, the challenge is finding away of providing information that is appropriate for patients who may benefit from knowing something about their illness and its treatment but may not wish to know everything about it at all times. This challenge is particularly important in light of the government's current commitment to build on the work of the Calman-Hine Expert Advisory Group to improve cancer care.¹² Recent developments include plans for a national cancer information strategy, the details of which have yet to be agreed. It is likely that such an initiative could include “core information packages” for all patients (NHSInformation Authority, draft consultation document of cancer information strategy). In light of the move toward more formal provision of information, there is an urgent need to understand the ways that and the reasons why patients may choose not to seek or may resist further information about their cancer. This paper reports the findings of a study that explored patients' reasons for not wanting further information.

Summary points

• Although cancer patients want to be informed about their illness, not all patients want extensive information about their condition and treatment at all stages of their illness

• Reasons why patients vary in how much they want to know relates to their strategies for coping with their illness

• Faith in doctor's medical expertise precluded the need for further information

• Hope is considered essential for coping and could be maintained by avoiding potentially negative information

• Charity to fellow patients included recognizing that scarce resources had to be shared

PARTICIPANTS AND METHODS

Between November 1998 and February 1999, 3 physicians from a cancer center identified patients whose cancer had been diagnosed in the previous 6 months and who were judged well enough to be interviewed. The first 24 patients who met these criteria were asked to participate in our study. Four of the patients declined (3 men), and 3 others (2 men) were too ill to be interviewed on the day of the appointment. Our study was approved by the ethics committee of the study site.

Sociodemographic data were collected using a brief pre-interview questionnaire. In-depth interviews, focusing on the patients' experiences of information about their illness from first symptoms through to diagnosis and treatment, were carried out in the patient's home or the hospital. Each lasted between 45 and 90 minutes. Interviews were audiotaped, transcribed, and analyzed according to the methods of framework analysis.¹³ Developed by a specialist qualitative research unit called Social and Community PlanningResearch, framework analysis involves a systematic process of “sifting,charting and sorting material according to key issues and themes.”¹³ Transcripts were read repeatedly to identify the key themes and categories, which were then developed into a framework for coding the body of interview data. Multiple coding by 3 of us (GML, MB, and CM) tested the acceptability and reliability of the designated categories, and the validity of the coding was checked through deviant case analysis.¹⁴

RESULTS

Sample characteristics

Of the 17 patients who completed the interview, 11 were women and 6 were men ; 10 were non-manual workers, 3 were manual workers, and 4 were not classified ; and 10 were white British, 5 were white other, and 2 were blackBritish. Their median age was 55 years (range 28 to 79). The primary cancer diagnosed was breast cancer (4 cases), lymphoma (4), non-Hodgkin's lymphoma(2), lung cancer (2), and 1 case each of cancer of the colon, bladder, skin, brain, and liver. Two patients had a history of cancer.

Information about cancer and its treatment

All 17 patients interviewed had wanted basic information about diagnosis, treatment options, and common side effects of treatment. The timing of the desire for this information varied, however, as did the level of detail and content. Six patients had made efforts to obtain as much information as possible, but the remaining 11 patients reported minimal efforts to obtain information additional to that offered by hospital staff. All the interviews revealed a variability in attitude toward further information : patients did not want information about everything all of the time, but, at different times since their diagnosis, had wanted more or less information about particular aspects of their condition and its treatment.

Patients' attitudes toward seeking or accepting further information were based on their attitude to the management of their cancer. Systematic analysis of patient narratives revealed three overarching attitudes associated with a limited desire for and use of further information : faith, hope, and charity.Elements of faith, hope, and charity were present in all transcripts and affected information need and information-seeking behavior differently at different times.

Faith

To differing degrees, patients displayed faith in their doctors, and this contributed to their attitude toward seeking information beyond that volunteered by health professionals in routine interactions. Often such faith reflected an understanding of the complexity and medical uncertainty surrounding cancer and its treatment and ultimately reflected a will to live (see box, quote 1). Belief in the maxim that “doctor knows best”sometimes negated the perceived value of additional information, and patients believed (and some found) that additional information could confuse their situation. Having faith in their doctors' ability to successfully deploy what were often perceived as impressive and modern medical technologies often precluded information seeking.

Faith was clearly linked with the view that medical knowledge was difficult to understand. This was particularly the case among older patients, who, because they felt their knowledge and understanding of medicine was limited, believed that additional searching could be dangerous and exacerbate an already difficult situation (see box, quote 2).

Some who spoke of their faith in their doctors' expertise expressed concern that information seeking might be perceived as transgressing their incumbent role as patient. Being a good patient was construed as “doing as you are told” and being a “good customer,” as opposed to knowing alot and being inquisitive (see box, quote 3). For most patients, this perception of themselves as apparently disempowered was rationalized and placed in a favorable light by relying on and having faith in their doctors' expertise. For most, placing their faith in their doctors' hands was hands was a strategy that could change at a later stage depending on various factors, including the course of the disease and the need to maintain a sense of hope (see box, quote 4).

Faith

1. “I didn't know what to expect with the treatment, I was optimistic. I couldn't even think about how I could do chemotherapy. I prepared my mind for whatever it takes, [to] follow the rules of the experts ; they have said that this is what I've go to do to get better, and I've got to—whatever way, shape, or form—get better.” (Interview 10 : 45-year-old man with lymphoma.)

2. “To be honest, when they said to me it's cancer, I thought I'll put it in their hands now because sometimes it can be a dangerous thing when you start listening and looking. We only have a certain amount of intellect, and we only have a certain amount of education. There is nothing like an ignorant man trying to learn and know every little thing about it. With regards to medicine and the like, the less you know, the better.” (Interview 12 :74-year-old man with skin cancer.)

3. “Maybe they don't tell you everything—all the side effects—because they think it will frighten you. But if you read it yourself, they probably think, `Clever woman,' for finding out. They probably think, `She should be listening to us.' I don't think they particularly like you bringing up ideas, not that much, not really.” (Interview 11 :64-year-old woman with brain cancer.)

4. “I don't want to use information lines and things like that at the moment. I'm working on my principle that ignorance is bliss. I am not denying the situation I am in, but I am not speaking to people like that at the moment, I don't feel I need to. At the moment, I get what I want, but not too much detail. Further down the line, it may change, depending on which way it goes, if it's bad.” (Interview 5 : 44-year-old man with liver cancer, melanoma of the eye 7 years earlier.)

Hope

A sense of hope pervaded all 17 narratives, and for some this was closely linked to fear. Patients created a facade of hopefulness, often in the most advanced cases (see box, quote 1). Hope was indispensable for survival, and this interacted with information seeking in a complex way. For some, it meant avid searching for information, particularly about alternative treatments, but for others, it meant limited searching for or even avoidance of new information. Immediately after diagnosis, patients needed to be enabled to ask questions and search for information ; without basic diagnostic information, attempts to find out additional information were often thwarted (see box, quote 2).

At different times during their illness, patients halted their information seeking because of fearful and contradictory information, often a consequence of genuine medical uncertainties. These periods of self-censorship functioned to preserve hope by avoiding negative information about their illness and in turn helped to manage their fears associated with the potential of a negative outcome (see box, quote 3).

Contradictory information was a source of anxiety for most patients, as it often confused treatment decisions already made. Weighing evidence and deciding on the best course of action was difficult, even with a medical background. Depending on the immediacy of the issue, some patients resolved the conflict of contradictory information by calling on other patients and lay contacts (including medical friends) to judge between conflicting accounts (see box, quotes 3 and 4).

Women patients often valued the knowledge and experience of other cancer patients more than medical information, and this personal experience often proved invaluable for making a decision about treatment. By contrast, the men rarely spoke of relying on the experience of other patients ; once they left the outpatient clinic or treatment room, they preferred a policy of“life as normal” in which cancer could be forgotten (at least superficially).

Additional information could exacerbate fear and threaten to undermine patients' hopes. Even basic introductory booklets could be frightening ;consequently, some patients truncated their efforts to find out more (see box, quotes 2 and 5). Patients were also aware that literature produced for patients “in general” was not necessarily relevant to every individual, and the difficulty of discerning information germane to their own individual situations was clearly frustrating (see box, quote 6).

To avoid the risk of uncovering information that could threaten their hope, some enlisted the help of others in finding out new material. Not everyone had access to proxy informants, however, and those too fearful to assimilate additional information avoided all information sources. Emotive media coverage of “cancer victims” such as Linda McCartney rendered avoidance difficult at times and for some constituted an unwelcome threat to hope (see box, quote 7).

The expression of hope often entailed presenting a brave face to others, and this could itself make it difficult to talk about or seek information regarding cancer. Getting on with life and maintaining a positive outlook was perceived as the approach to managing illness that was most respected by hospital staff, friends, and family. Asking for information beyond the basic details of the diagnosis and side effects of treatment could undermine patients' positive appearance. The pressure to present a hopeful facade also related to a fear of using up any reserve of sympathy and support from friend sand relatives (see box, quote 8).

The pressure to preserve a brave face and the linked pressure to avoid information about the illness was more common among men, who maintained hope through silence. Men in particular preferred not to ask questions of the medical profession, or people in their wider social networks, so as to avoid discussions of disease recurrence and, ultimately, death. Efforts to maintainhope could thus drive out interest in finding out further information.

Hope

1. “Fortunately, I've got the slow-growing one ; the counselor drew a diagram for me (shows diagram to GML). So she said there was the tumor there [breast], there's the other one there [lung], and then they found a very small one on the top [brain]. So I could actually feel where everything was, which was good, but then also in the fluid going round the brain and down the spinal cord. The doctor said there are other [treatments] if this one doesn't work, so the way I am looking at it is, it's either going to be good, and I don't know what happens after that, or if it isn't, there are other options. Where there are other options, there is still hope.” (Interview 3 :54-year-old woman with primary breast cancer and multiple metastases.)

2. “I found out what I had by reading my notes on the way up to X-ray. A high- or low-grade, T or B cell lymphoma. It's no good anyway, because I don't know the difference. Information is difficult in the beginning because I couldn't look at the relevant bits, so it's better to be told your exact diagnosis as soon as possible, otherwise even general booklets are too scary and too detailed—my boyfriend looks for me.” (Interview 2 :28-year-old woman with non-Hodgkin's lymphoma.)

3. “In the end, I got so confused and one woman had such an influence on me that I was moving very fast in the direction of thinking I would have chemotherapy, and I wasn't too keen to get too much input that was going to suggest I shouldn't. I think I consciously censored myself. I didn't look chemotherapy up on the Internet ; I just have recently, and it's really shaken me.” (Interview 1 : 48-year-old woman with breast cancer.)

4. “It's very difficult making treatment decisions because of the contradictory information, and it's very difficult not being a medical person.It was this woman in the end who helped me decide. She didn't try to persuade me, but it was something about the reasons she gave, you know, regretting not doing it in the future if I get cancer again. Secretly, I think I knew I was going to do it [have chemotherapy], and I didn't want to find out too much negative information.” (Interview 1 : 48-year-old woman with breast cancer.)

5. “The thing with these leaflets—I mean, I did start to read afew—but then when you read them you get information, but I think they give you a bit too much about what it's going to do and where it can go. I know I have it, and that's all I want to know.” (Interview 9 :60-year-old man with liver cancer.)

6. “I was trying to find information about what treatments are available and things like that, but I kept on finding that every person is different, soI found that trying to find out the different grades and things was difficult.I don't think you can find an answer actually that will satisfy you..... I think I've found my way of coping through God—just pray, pray, pray.” (Interview 4 : 46-year-old woman with breast cancer.)

7. “Trouble was, I used to buy a newspaper every day in hospital, and every day cancer—always somebody who had bravely died of cancer. I was a bit cross, and I nearly wrote to the [newspaper] because it was every day, andI thought, “Well, what about all those people who bravely live ? '” (Interview 6 : 64-year-old woman with non-Hodgkin's lymphoma.)

8. “Friends and family expect you to be depressed and talk about it, but if you're all doom and gloom, people won't want to come near you, and you need people. This is why you tend to switch off a bit and just have a good laugh when people come to see you, because then they'll want to come back to see you.” (Interview 3 : 54-year-old woman with primary breast cancer and multiple metastases.)

Charity

Even in the face of their adversity, all the patients reported having been influenced by thoughts of others whom they perceived to be worse off or more needy than themselves. As with other health system resources, information—or access to those who could provide it—was seen as a limited resource, rationed among all patients (see box, quote 1).

Frequent references were made to the usefulness of the clinic consultation for getting reassurance, which was vital for maintaining hope, and obtaining help in interpreting additional information from independent sources.Nonetheless, patients expressed concern about taking up too much of their doctors' time when other patients were waiting to be seen in the outpatient clinic (see box, quote 2). These sentiments were more evident among those patients with close friends or family (most of our sample), who perceived patients without such support to be more needy and deserving of information (see box, quote 3).

By making comparisons with others, patients could see that their situation was better than that of others. This favorable comparison, however, could then be seen as weakening their claim for scarce resources and giving precedence to the claim of others.

Some found it easier to accept information obtained by friends and relatives because they had not personally used a scarce resource. Similarly, patients clearly found information easier to accept when it was verbally offered by hospital staff rather than having to ask for additional information themselves. Others, however, pointed to the legitimate needs of their fellow patients in explaining their reluctance to make further demands on the time and resources of doctors and nurses in the clinics.

Charity

1. “I got information on home nursing, and they came round, but I stopped them in the end. Not because I didn't want them, but after I started on my chemotherapy, they used to pop around to see how I was, but I seemed to be doing okay... so I said to them, it's best to just' phone me. I said there's probably other people who needed to see them more than me.” (Interview 9: 58-year-old man with liver cancer.)

2. “The consultant said, `Have you got any questions ?' and I had, but I felt that there was this huge waiting room filled with people. I had written them down, but I then felt very conscious of the fact that the consultant had this enormous pressure of people outside. There was a lot of talk among the nurses about how many people there were, so I knew I had to rush.”(Interview 1 : 48-year-old woman with breast cancer.)

3. “I haven't used telephone lines or anything like that. I have support from the family, and there are people who have got nobody at all, so why should I bother them when I've got people that I can call on ?”(Interview 12 : 74-year-old man with skin cancer.)

DISCUSSION

We have investigated an observation commonly made by those who provide care to cancer patients that not all patients want extensive information about their condition and treatment at all stages of their illness. Although not based on a statistically representative sample, this study provides insights into the reasons underlying patients not seeking for information at particular times during their illness within 6 months of diagnosis.

Limitations of the study

Qualitative methods often dictate small samples, and personal interviews could skew the sample toward patients who find it easier to talk about their illness. The constraints imposed on the recruitment process by the setting of a busy clinic in a cancer center meant that it would have been impossible to sample purposively. Fortunately, however, the final sample comprised patients with a range of sociodemographic backgrounds, cancer types, and experiences of illness. The similarities between some of our core themes and those found in other studies¹⁰permits confidence in the validity of our data and analysis of the data.

A longitudinal, prospective study could avoid the limitations of single retrospective interviews. A longitudinal approach could also maximize the ability to explore and map out the fluid and changing nature of patients' orientations to the management of their cancer and their subsequent efforts to obtain (and avoid) additional illness information over time. A survey study to assess the generalizability of some of the key findings from this interview study, in particular the determinants of information perference and access to information, such as gender and age, will be reported at a later date.

Reasons for not seeking information

Our study shows that in our apparently “patient-centered” era, some patients (particularly older patients and men) still adopt a nonparticipatory role in the management of their illness.^1,15,16In the 1950s, Parsons argued that the nature of the roles of patients derived from the faith placed in doctor's medical expertise.¹⁷ These perceptions still exist and influence patients' need for and seeking of information. Wanting to be seen as a “good customer,” trusting what a doctor says, and “ignorance” and the consequent (perceived) inability to assimilate medical information are important reasons for patients' non-use of information. Arguably, older patients would have grown up in an era characterized by “doctor-centered” practice,¹⁸ and this may help to explain the greater use of independent information services by younger patients.^19,20

Men seemed to be less likely to access additional information services, and the next phase of our research will focus on these sex differences. Men maintained hope through silence and, more generally, “strength insilence” (C Moynihan et al, Strength in Silence : Men andCancer, British Psychosocial Oncology Conference, Royal College ofPhysicians, London, 1999), and this influenced their desire for information at different times during their illness. The value of hope in the management of chronic illness is well established,^21,22but our study has shown the complexity of the relationship between hope and a patient's desire for information.²³ Hope and fear are intertwined, and patients oscillate between the desire for more information and the avoidance of new information. Hope might be accomplished and maintained through silence, periods of self-censorship, and not searching for information or searching by proxy, and these strategies enable patients to circumvent negative information about their illness, which poses a constant threat to hope. As Pinder found in her study of Parkinson's disease,“knowledge of what the clinical facts mean is not always the priceless resource other writers [suggest]. Sometimes it is too threatening.¹⁰

Finally, we found that patient's behavior was influenced by consideration of the needs of other patients. This attitude of charity reflected patients' perceptions of a rationed health service and helped to rationalize their having minimal information. This attitude has received little attention in the context of cancer patients (S Morris, Medical Sociology Conference, York,1998) and should become an increasingly important consideration as rationing becomes more widely acknowledged.

Patients' preferences for information derives from the coping strategy or attitude they have to managing their cancer. While all patients have the right to information, they will wish to use this right to varying degrees at different times. Health service providers need to continuously assess whether each individual patient wants only limited information or whether external constraints such as a language barrier, clinic organization, or the attitudes of health professionals deny them access to the information they want.

CONCLUSIONS

The factors affecting patients' uptake of information services are complex.Patient orientations toward faith, hope, and charity may mean, at points on the illness path, that patients may prefer to avoid disease-related information and may choose to not use cancer information services. An understanding of the reasons why patients may want only limited information can help to ensure that the national strategy being developed is flexible and responsive to individual's coping strategies and information choices.