Family Practice Vol. 20, No. 6, 724-729
© Oxford University Press 2003, all rights reserved.
Article |
Who decides about prostate cancer treatment? A qualitative study
General Practitioner, Elizabeth House Practice, Warlingham, Surrey and a Professor of Applied Health Care Research, Peninsula Medical School, Exeter
Correspondence to Dr Howard Cohen, Elizabeth House Surgery, 515 Limpsfield Road, Warlingham CR6 9LF, UK; E-mail: email{at}drhowardcohen.com
Received 10 February 2003; Revised 25 June 2003; Accepted 14 July 2003.
Cohen H and Britten N. Who decides about prostate cancer treatment? A qualitative study. Family Practice 2003; 20: 724–729.
 |
Abstract |
|---|
 Top Abstract IntroductionMethodsResultsDiscussionReferences |
|---|
Background. Shared decision-making between patients and health professionals has been promoted as ethically and clinically desirable. Patients vary in their willingness to participate in decision-making, while clinicians identify practical barriers to greater participation, such as time and communication skills. A paternalistic approach to treatment decisions remains common even in an area of clinical uncertainty. The willingness of patients to participate in decision-making varies over time during the course of an illness but patients may not be given the opportunity to revisit clinical decisions with their specialists after the initial consultation.
Objectives. To gain an in depth understanding of the perspectives of men recently diagnosed with localized prostate cancer, and to explore the value of decision-making models in the setting of NHS practice.
Methods. The study design was a qualitative analysis of semi-structured interviews. Nineteen men recently diagnosed with localized prostate cancer were included from patients attending a British District General Hospital.
Results. The interviews suggested that the respondents' treatment plans were mostly decided on their behalf by their clinicians. Whilst initially accepting this paternalistic approach, the interviewees over time wished to revisit the decisions. Patients' barriers to shared decision-making included fear of appearing disrespectful to their doctors and of taking responsibility for the outcome of treatment. The structure of patient follow-up did not afford the men an opportunity to discussion treatment decisions further.
Conclusions. The paternalistic decision-making model remains the chosen approach in this situation. The patients' willingness to become actively involved in choosing their care varies over time. Barriers to shared decision-making can be identified both in the nature of the doctor-patient relationship and the structure of the clinical follow-up.
Keywords. Decision-making, physician-patient relations, prostate neoplasm.
|
Introduction |
|---|
|
TopAbstractIntroductionMethodsResultsDiscussionReferences |
|---|
There has been a growing interest in how doctors and patients make decisions together. Forming partnerships with patients has become an important theme in the medical literature.1 Theoretical models have been advanced which have elucidated the differing levels of participation that the clinician and the patient might adopt.2,3 A shared decision-making style, with an interchange of both information and attitudes between both parties, has been advocated as an ethically desirable approach, which may lead to improved clinical outcomes.4 Little however is known about patients' changing preferences for participation in treatment decisions over time.5,6
Individual patients vary in their willingness to be actively involved in the consultation.7 Older patients have been shown to prefer a passive style.8,9 Clinicians also vary in their willingness to adopt a flexible consulting style. Practical barriers have been identified which inhibit a participative style, particularly time constraints and a lack of communication skills.10
Localized prostate cancer is a common and important condition. Its natural history is uncertain, as is the most appropriate and effective treatment.1112–13 Men newly diagnosed with prostate cancer need to make difficult decisions with their doctors against a background of uncertainty. Treatment choices involve a trade-off between potential benefits and the risk of complications and side effects, particularly incontinence and impotence.14
The aim of this paper is to gain an in depth understanding of the perspectives of men recently diagnosed with localized prostate cancer, and to explore the value of decision-making models in the setting of NHS Practice.
|
Methods |
|---|
|
TopAbstractIntroductionMethodsResultsDiscussionReferences |
|---|
Recruitment
Two pilot interviews were conducted with patients of HC's general practice at the beginning of the study. Both these patients (the pilot group) had recently been diagnosed with localized prostate cancer, one of whom had consulted previously with HC. Patients of HC's Practice were then excluded from being recruited to subsequent parts of the study.
The pathology department records of a single District General Hospital were then used to identify a group of men with a positive prostate cancer biopsy during 1999. Out of 119 positive biopsies, 90 patient records were examined and 74 prostate cancer patients were identified, 47 of whom had localized disease. The permission of these 47 patients' GPs was then sought, to invite the patients to join the study. Permission was granted in 38 cases and 13 men agreed to be interviewed about their experiences. A further 4 men were recruited directly from a survey of referral letters to the Urology department, and were interviewed both before and after their hospital consultations. The resulting group of men (n = 19) were of varying age and background, and received a range of treatments (Table 1). Their post diagnosis interviews were analysed as a single group as the men's views were found to be similar, regardless of the recruitment method. The time interval between diagnosis and interview varied according to respondent, the influence of this delay was considered in the analysis.
|
Interviews and analysis
The respondents were interviewed by HC, a GP, either in their homes or at HC's surgery. HC introduced himself to the respondents as a medical scientist with an interest in prostate cancer. In half of the interviews the respondents directly asked about HC's professional background as a GP. The status of the interviewer being a GP will have had an influence on the nature of the interviews, which was considered in the analysis.15
The interviews were semi-structured, using open-ended questions, facilitated by a topic guide. The men were encouraged to recollect their experiences of being diagnosed with prostate cancer and of having their treatment planned. They were asked to discuss their concerns and perceptions, as well as the factual details of their cases.
The interviews were audio taped and transcribed. After a period of familiarization and immersion in the transcripts, a coding structure was developed by HC. NB, as project supervisor, independently applied the coding structure to three of the early interviews to ensure reliability. The application of the codes was discussed and minor adjustments were made before the coding structure was applied consistently across all the interviews.
Responses in each of the codes were collected and organized using Atlas Ti software, allowing detailed description of key themes. A respondent validation exercise was carried out, with a summary of the description of the key emergent themes being sent to respondents for their comments. The respondents consistently endorsed the summary as accurately representing their views. Although the respondent validation suggested broad agreement, the value of such exercises can be limited by the respondents' reluctance to be overtly critical.16 This study was granted ethical approval by the Croydon Local Research Ethics Committee
|
Results |
|---|
|
TopAbstractIntroductionMethodsResultsDiscussionReferences |
|---|
The interviews revealed a range of recollections, feelings and opinions, which recurred over most of the interviews. The emphasis of this paper is the men's recollections of their involvement in the planning of their treatment. These accounts are described in three areas:
- the respondents' descriptions of the consultations when their treatments were planned;
- their recollections of their concerns and feelings at that time; and
- their subsequent reflections on the decision making process.
The treatment planning consultation
The men's accounts of the process of care were broadly consistent. The treatment plans were usually formulated at the same consultation as the news of the diagnosis was given. Interviewees recalled that the discussion of the possibilities was led by the clinician, whose style was perceived by the respondents to have been for the most part directive and paternalistic. Neither the scope of the consultation nor the decision-making process were discussed or negotiated between the consultant and the patient.
The specialist decided whether the condition required active treatment or if a watchful waiting policy could be adopted. When active treatment was advocated, the patients felt that the clinician advanced their chosen option, mentioning other possibilities in order to explain their inappropriateness and to justify the preferred choice (Box 1).
| BOX1 Decision-making styles Respondent 10 (aged 65). "The treatment choice was entirely their decision. I had no choice... I wasn't asked." Respondent 16 (aged 77). "Nobody asked me what I wanted, although I seem to remember that I read somewhere that ‘the treatment is generally discussed and decided between you’. No-one gave me an alternative. I've no complaint, I'm quite happy with what I am getting." Respondent 12 (aged 67). "They said that surgery is an option, but they pointed out the downfalls on surgery, that you can end up incontinent, can't you by a slip of a knife, you can. And it can affect your sex drive, later on. So they assured me that surgery was not the answer." Respondent 1 (aged 58). "Sorry, you've got cancer and it's been confirmed. You've got the option of surgery and radiotherapy, and I do not recommend the surgery!"
|
When, on occasions, a less directive approach was initiated, the clinician was often reported to revert to taking the lead in response to questions raised by the patient.
How did the men feel at the time of diagnosis?
Men's recollections about their feelings at the time of the consultations were dominated by the shock of receiving a cancer diagnosis. This threatening bad news overshadowed the rest of the consultation at which the treatment options were considered. Some found it difficult to concentrate on the detail of the discussion.
Often, men expressed their need for time to make sense of the news and to appraise the degree of threat that prostate cancer held for them. The nature of the proposed treatment was taken as an important cue as to the seriousness of the diagnosis (Box 2).
| BOX2 Reaction to diagnosis Respondent 1 (aged 58). "They talked to you all the time but you don't absorb it. You know, I think you're so wound up that you can only take in bits and not all the information you're getting. Hopefully, you can go back and you can ask them again and they'll go through it all again for you." Respondent 17 (aged 79). "I was told the bad news and the good news: there was some prostate cancer there, but it wasn't very serious, I could be fixed up with some pills or something." Respondent 5 (aged 82). "Any way, I had this...and then he said unfortunately there was a touch of cancer, but someone tells me that in most cases in this prostate, you know, a lot of blokes have all got a touch of cancer or something. Any way, he did say ‘Don't worry about it. This is a thing we can contain now’." Respondent 18 (aged 79). "You think they're not giving you any treatment, if they're not giving you any medicine, not giving you anything good for it, so it mustn't be nothing to worry about. I mean if there was something to worry about there, straight away they'd offer me an operation, or steroids, or you've got to have something. So that puts your mind at rest as far as that's concerned, don't you think?"
|
Most men felt that the directive role assumed by the clinician was appropriate and welcome. The treatment decision was perceived as a technical one, which required expertise and experience. The men expressed a high degree of trust and respect for the clinicians, as well as a hope that the professional would act virtuously and competently on the patient's behalf.
There was generally a high degree of satisfaction with the consultation, both in the style and the content. They felt that they were given enough information to justify the choices made. Concerns expressed focused mostly on the uncertainty of the prognosis of the disease and frustrations about the delivery of care, rather than the nature of the relationship with the health professionals (Box 3).
| BOX3 Initial feelings about consultation Respondent 6 (aged 84). "Well the trouble is in ignorance you don't know how one choice is better than the next...if I was offered choices, I would try and rely on the information I got from the doctor, the specialist." Respondent 9 (aged 59). "I was quite happy with their recommended treatment and I am prepared, at this stage, to take their word for it, and as I say they've been proved right at the moment, because it is working." Respondent 18 (aged 79). "But you've got to believe in them [the doctors] and wait until it happens, that's how I see it." Respondent 9 (aged 59). "I suppose it's the old cliché, you put your life into their hands." Respondent 6 (aged 84). "But then you have to say you're in the right hands with the right people, they know what they're doing. They certainly know more than I know about what they are doing."
|
Later reflections
During the study interviews, the respondents were encouraged to reflect on the consultations when the diagnosis was confirmed and the treatment planned. The interviews took place a number of months later and the men were able to contrast how they felt at the time of diagnosis, with how they felt at the time of interview.
The men described a process of coming to terms over time with their new diagnosis. As they did so, most felt that they understood their condition better. This brought with it a realization of the complexity of the prostate cancer, and the uncertainties surrounding its treatment. Some expressed dissatisfaction that these complexities had not been explored in the consultation. The men had a continuing need to understand how their treatment was chosen, whilst remaining content with the choice that had been made. The decision-making process was criticized rather than the outcome.
On reflection, the men acknowledged that treatment choices would have been influenced by a range of factors, apart from the clinical features of their cases. They were concerned that care might be rationed on the basis of age, disease progression or the availability of technical resources. Comparisons were often made with care that they thought might have been available in the private sector or in other parts of the world, particularly in the USA. Unease was evident about how clinicians balance the competing needs of the individual patient with the demands of the system in general.
The respondents justified their passive role in the consultation in terms of their lack of technical competence. The men expressed anxieties about taking responsibility for the outcome of treatment if they had been more actively involved in making choices. It was felt to be important to be viewed as a ‘good patient’ by the consultants. Adopting a more questioning approach risked being considered as a difficult or disrespectful patient.
By the time of the study interviews, some of the men had had follow up consultations with their specialists. Some had hoped to revisit the decision making process at this subsequent consultation, to clarify the reasons behind the choices that were made or, on occasions to revise the treatment plans. It was, however, uncommon for the follow-up to include such discussions. Some men felt uneasy as a result, but most did not actively challenge the clinician, opting to continue to accept the treatment plan. Some speculated that they would seek a more active review if their situation changed, that is to say that the satisfaction was conditional on continuing success of the treatment (Box 4).
| BOX4 Later reflections Respondent 8 (aged 77). "...looking back on it, I would have liked him to have said ‘Well now you're faced with this situation. You can do...you can either have the operation, which would entail so-and-so, or you could have radiotherapy and the effects of that would be, or we can go on as we're going on and keep an eye on it, and if at a later date it becomes necessary, we'll do so and so’. I think that he could have been more explicit and had more discussion on it than he did. Yes, I think it was his decision and that was it. So I've had no opportunity to discuss with him how I felt about it." Respondent 16 (aged 77). "I don't know how he came to that [the treatment choice]. Whether there's an age cut off where they decide not to operate, because apparently the most successful method is an operation to have it taken away." Respondent 9 (aged 59). "If I were absolutely certain that they knew exactly what they were doing and their success rate was as good as say the Americans....that somebody competent and knew what they were doing, you'd take it [surgery] on, by all means get rid of it." Respondent 1 (aged 58). "Well obviously, if you were diagnosed and they said, ‘These are the options...’ it would be very difficult decision. I'm just pleased that that in a way I never had to go through that, because I think it would have been a real torment." Respondent 19 (aged 78). "If I say [a different treatment preference] to the doctor, maybe the doctor wouldn't be happy, because of his profession, he might think more or less that I'm telling him his job. So I don't think I would say it to him. I think he might feel that I'm insulting him."
|
|
Discussion |
|---|
|
TopAbstractIntroductionMethodsResultsDiscussionReferences |
|---|
This study has described how a group of men diagnosed with localized prostate cancer recalled their hospital consultations and how they felt about those recollections. Conclusions from these accounts should be made with care, particularly as the respondents were drawn from a single District General Hospital. This methodology enriches our understanding of the patients' perceptions rather than recording patients' or doctors' behaviour in the consultation. By restricting the analysis to the patient's experience we have tried to illuminate aspects relevant to wider medical practice.
With the passage of time recollections and perceptions are adjusted and re-appraised, with the men giving a ‘public face’ to their feelings.17 Just as these men valued the importance of being seen as a ‘good patient’,18 they might equally have valued being perceived as a ‘good study respondent’ and tailored their accounts accordingly, particularly as the interviews were with a medical practitioner.15 They were nonetheless able to say how the consultations might have been improved.
The decision-making process was perceived by these men as clinician-led, with themselves as passive recipients. At the time of the initial consultation such a paternalistic approach was felt to be appropriate by the respondents. A process of adaptation to the changed status of being a prostate cancer patient occurred over time, and alongside this, the patients' orientation to their participation in the planning of their care also changed.
The growing literature on decision-making in the consultation has provided us with a framework for analysing the process.1,5,19 There has also been research on the competencies required for effective shared decision-making.10,20 Many studies rely however on informants' considering their responses to hypothetical situations, whereas this study explores real decision-making experiences. The consultation cannot be viewed as a meeting of two individuals, with fixed and predictable psychological styles and sets of beliefs and attitudes. Having had time to think things over, the interviewees felt that their needs had changed, which left them wanting to revisit the decision and the way that it was made. Decision-making can be viewed as a complex social interaction, subject to a range of changing internal and external influences, which vary and develop. The process and outcome of decision-making may need to be revisited at different stages of the patients' illness.
Do clinicians have the flexibility in their consultation styles to respond appropriately to the changing needs of their patients over time? The accounts of these men would suggest that the opportunities to revisit decisions are rare. Powerful social pressures might be placing patients at a disadvantage when seeking to play a more active role in determining their care. Maintaining a good relationship with one's doctor might be given a higher priority than challenging the clinician's style.18 Patients may be reluctant to challenge their doctor and feel inhibited about what they can say. A successful outcome might be valued more highly than a satisfying process. Striking the balance between being an active participant and taking responsibility for the result creates anxiety.8,21,22
With such a complex process, conclusions and recommendations can only be made with caution. Clinicians might profitably reflect on the subtleties of their consultations, realising that if a shared approach is desirable, we might need to create the environment for it to flourish. Checking and negotiating the objectives of the consultation at differing stages of the patients' illness career might go some way to tailoring our style to suit the patient's needs. A willingness to vary our approach, calling on a range of styles, will be demanding both in time and personal skills. Sharing with patients how we might go about deciding their care may be the key first stage to effective shared decision-making.
|
Acknowledgments |
|---|
The Authors gratefully acknowledge the active support of the men who agreed to be interviewed of this study. We would also like to thank the clinicians who agreed to their patients being recruited. The research on which this paper is based, was submitted by Dr Howard Cohen as part requirement of the MSc Degree in General Practice, Kings College, London. HC conceived the original study question and design, with supervision from NB. HC recruited the respondents, conducted the interviews, devised and applied the coding structure. NB independently coded a sample of the study interviews. Emergent themes were discussed between HC and NB and conclusions and analysis drawn. Both HC and NB contributed to writing the paper. HC was supported in this study by separate grants from the Scientific Foundation Board of the Royal College of General Practitioners (SFB/1999/20) and from the Prostate Cancer Charity. There were no conflicts of interest.
|
References |
|---|
|
TopAbstractIntroductionMethodsResultsDiscussionReferences |
|---|
1 Charles C, Whelan T, Gafni A. What do we mean by partnership in making decisions about treatment? Br Med J 1999; 319: 780–782.
2 Charles C, Gafni A, Whelan T. Decision-making in the physician–patient encounter: revisiting the shared treatment decision-making model. Soc Sci Med 1999; 49: 651–661.[CrossRef][Web of Science][Medline]
3 Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean? (Or it takes at least two to tango). Soc Sci Med 1997; 44: 681–692.[CrossRef][Web of Science][Medline]
4 Coulter A. Paternalism or partnership? Patients have grown up—and there's no going back. Br Med J 1999; 319: 719–720.
5 Benbassat J, Pilpel D, Tidhar M. Patients' preferences for participation in clinical decision-making: a review of published surveys. Behav Med 1998; 24: 81–88.[Web of Science][Medline]
6 Emanuel E, Emanuel LL. Four models of the physician–patient relationship. JAMA 1992; 267: 2221.
7 Siminoff LA, Fetting JH, Abeloff MD. Doctor–patient communication about breast cancer adjuvant therapy. J Clin Oncol 1989; 7: 1192–1200.[Abstract]
8 Sutherland HJ, Llewellyn Thomas H, Lockwood GA, Tritchler DL, Till JE. Cancer patients: their desire for information and participation in treatment. J R Soc Med 1989; 82: 260–263.[Abstract]
9 Cassileth B. Information and participation preferences among cancer patients. Ann Intern Med 1980; 92: 832–836.[CrossRef][Web of Science][Medline]
10 Towle A, Godolphin W. Framework for teaching and learning informed shared decision making. Br Med J 1999; 19: 766–771.
11 Donovan JL, Frankel SJ, Faulkner A, Selley S, Gillatt D, Hamdy FC. Dilemmas in treating early prostate cancer: the evidence and a questionnaire survey of consultant urologists in the United Kingdom. Br Med J 1999; 318: 299–300.
12 Emberton M. What urologists say they do for men with prostate cancer: aggressive treatment for the younger man and by a specialist. Br Med J 1999; 318: 276.
13 Dearnaley DP, Kirby RS, Kirk D, Malone RJ, Simpson RJ, Williams G. Diagnosis and management of early prostate cancer. Report of a British Association of Urological Surgeons Working Party. BJU Int 1999; 83: 18–33.[CrossRef][Web of Science][Medline]
14 Litwin MS. Measuring health related quality of life in men with prostate cancer. J Urol 1994; 152: 1882–1887.[Web of Science][Medline]
15 Hoddinott P, Pill R. Qualitative research interviewing by general practitioners. A personal view of the opportunities and pitfalls. Fam Pract 1997; 14: 307–312.
16 Barbour RS. Checklists for improving rigour in qualitative research: a case of the tail wagging the dog? Br Med J 2001; 322: 1115–1117.
17 Cornwell J. Hard-Earned Lives. London: Tavistock, 1984.
18 Leydon GM, Boulton M, Moynihan C et al. Cancer patients' information needs and information seeking behaviour: in depth interview study. Br Med J 2000; 320: 909–913.
19 Guadagnoli E, Ward P. Patient participation in decision-making. Soc Sci Med 1998; 47: 329–339.[CrossRef][Web of Science][Medline]
20 Elwyn G, Edwards A, Kinnersley P, Grol R. Shared decision making and the concept of equipoise: the competences of involving patients in healthcare choices. Br J Gen Pract 2000; 50: 892–897.[Web of Science][Medline]
21 Charles C, Redko C, Whelan T, Gafni A, Reyno L. Doing nothing is no choice: lay constructions of treatment decision-making among women with early-stage breast cancer. Sociology of Health and Illness 1998; 20: 71–95.[CrossRef]
22 Schneider CE. The practice of autonomy: patients, doctors, and medical decisions. New York: Oxford University Press, 1998.
CiteULike 
Connotea 
Del.icio.us What's this?
This article has been cited by other articles:
|
|
 |
|
  R. Mohan, H. Beydoun, M. L. Barnes-Ely, L. Lee, J. W. Davis, R. Lance, and P. Schellhammer Patients' Survival Expectations before Localized Prostate Cancer Treatment by Treatment Status J Am Board Fam Med, May 1, 2009; 22(3): 247 - 256. [Abstract] [Full Text] [PDF]
|
|
|
|
 |
|
 J. L. Oliffe, B. J. Davison, T. Pickles, and L. Mroz The Self-Management of Uncertainty Among Men Undertaking Active Surveillance for Low-Risk Prostate Cancer Qual Health Res, April 1, 2009; 19(4): 432 - 443. [Abstract] [PDF]
|
|
|
|
 |
|
 K. Pollock Maintaining face in the presentation of depression: constraining the therapeutic potential of the consultation Health (London) , April 1, 2007; 11(2): 163 - 180. [Abstract] [PDF]
|
|
| ||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||||