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Offering choice of surgical treatment to women with breast cancer
ELSEVIER
Patient Education and Counseling 30 (1997) 209-214
Offering choice of surgical treatment to women with breast cancer Lesley Fallowfield” CRC
Communication
and Counselling Research Centre, 3rd Floor, Bland Sutton Institute,
Department 48 Riding
of Oncology, University College London House Street, London WlP 7PL, UK
Medical
School,
Received 1 September 1995; revised 31 July 1996: accepted 18 August 1996
Abstract Much hasbeen written about the psychosocialand sexuaIdysfunction associatedwith the diagnosisand treatment of breast cancer. Hopes that breast conserving techniqueswould lead to a reduction in someof the psychosocial morbidity experienced, have not materialised. Most of the methodologically sound studies reported to date demonstratefew differencesin quality of life domainsbetween women whatever their primary surgicaltreatment. Someresearcherssuggestedthat if womenwere offered an opportunity to selectthe surgicaloption they preferred, then two thingswould occur: (1) women would choosebreast-conservingtechniques,and (2) choice in itself would prevent psychosocialmorbidity. Despite strong support for both of theseassumptions,neither have been borne out. Significant numbers of women, when offered choice, opt for mastectomy and choice in itself does not convey protection from psychologicalmorbidity. The majority of women seemto welcomebeing given clear information about the options available, together with the reasonsas to why a clinician would advise one policy rather than another. However, fewer women than expected wish to take a major role in decision-makingabout their breast cancer treatment. Keywords: Breast cancer; Choice: Participation; Decision-making;Information
1. Introduction The psychosocial havoc and sexual dysfunction associated with the diagnosis and treatment of breast cancer are well known. Despite hopes that the availability of breast conserving techniques would reduce some of this psychosocial morbidity, appro~mate~y 25%-30% of women with the
*Corresponding + 0171 6366151. 073%3991/97/$17.00 PII
author.
Tel:
+ 0171 636 6462; fax:
disease experience significant psychosocial morbidity whatever their primary surgical treatment. In one of the first studies challenging the notion that mastectomy was the cause of psychiatric morbidity, Fallowfield et al. reported similar rates of anxiety, depression and sexual problems in 101 women randomised to either mastectomy or breast conserving surgery (11. This work was criticised on the grounds that women had been randomised to treatment. It was argued that more autonomous women, able to choose their treatment, would (1) show a clear preference for
Copyright @ 1997 Elsevier Science Ireland Ltd. All rights reserved
SO738-3991(96)00947-O
210
L. Fal~ow~eld
I Patienf
Edrtcation
breast-conserving surgery, and (2) have much lower rates of psychological distress. Over the past few years women with breast cancer have been encouraged to become much more involved in the clinical decision-making process. It is timely to step back and examine what benefits, if any, have occurred as a result of this and ask whether or not the assumptions about what women want and need, as far as treatment choices are concerned, are correct. Three inter-related issues are discussed in this paper: first, the psychological impact of being given the choice of different treatment options for breast cancer, second, women’s preferences for participation in decision-making and, finally, the informational needs of women with breast cancer.
2. Choice of treatment
options
Unfortunately, most of the published quantitative data concerning the putative benefits of involving women in decision-making about their primary surgical treatment suffer from a variety of methodological problems, including shortterm follow-up, very small samples, unrepresentative sampling, somewhat scanty assessment of morbidity, as well as incomplete reporting of the data [2-51. Consequently, evidence that choice produces measurable positive outcomes is not compelling. Two very small studies, found little difference between the women given a choice of treatment and those not [6,7]. A study completed in the United States reported that women who were offered a choice and opted for breast conserving surgery, were psychologically worse off [S]. However, follow-up in this study was only 3 months. A prospective study of 269 women under the age of 75 years with Stage I or II breast cancer [9,10] was conducted in the UK. Women were being treated by 22 different surgeons who belonged to one of three groups: those who preferred mastectomy, those with a preference for breast conserving surgery and, finally, those who offered women the choice of surgical treatment whenever possible. The women managed
and Counseling
30 (1997)
209-214
by surgeons who preferred to offer choice had the lowest incidence of psychological distress at all five time-points over a 3-year period [lo]. However, when the data were analysed more closely, it became apparent that choice in itself had not been the major factor influencing psychiatric morbidity. Among the 118 women treated by surgeons who offered choice, 62 were given a real choice, whereas 56 had their treatment determined by the surgeon, based on technical considerations (e.g. a large central lump in a small breast where breast conservation would have given a very poor cosmetic result). There were no significant differences in rates of anxiety or depression between the patients offered choice and those not, who were treated by ‘choice’ surgeons. The answer as to why the ‘choice’ surgeons patients had better psychological adjustment, in comparison to the women treated by other surgeons, could be found when one looked at the satisfaction of patients with information given at the time of diagnosis. Overall 80/26’7 women thought their information inadequate. Almost half the total sample of women in the study who felt poorly informed were anxious or depressed, or both, at 1 year, whereas 26% of the patients who felt well-informed had psychological problems at 1 year (P = 0.005) [9]. Satisfaction with information was significantly greater amongst the patients of ‘choice’ surgeons, irrespective of the eventual treatment they received or whether or not they had been given a real choice. Clearly, ‘choice’ surgeons were perceived as better communicators. The issue of informational needs will be discussed again more fully later.
3. What choices do women make? The fact that in the past many people assumed that breast amputation was the primary cause of psychosocial distress and sexual dysfunction, failing to recognise that whatever treatment received, women still had to confront the fact that they had a life-threatening disease. For many women their predominant concern is not so much breast loss, as fear of cancer and fear of
L. Fallowfield Table Which
1 operation
do women
I Patient
Education
choose?
Author
Date
N
Mastectomy
Breast
Conservation Morris and Royle [j] Wolberg et al. [4] Wilson et al. [2] Fallowfield et al. i9] Cotton et al. [28] Pozo et al. [7]
1987 1987 1988 1990 1991 1992
20 110 153 62 01 39
7 56 99 19 so 24
13” 54 54 43” 41 1s
“Studies quently
where breast conservation than mastectomy.
was chosen
more
fre-
recurrence [1,11,12]. However, breast caficer surgery can be mutilating and breast reconstructive techniques are not always satisfactory. Most studies done, showing no differences in psychiatric morbidity between mastectomy and breast conservation, nevertheless do report benefits to women who have undergone the latter, in terms of preservation of body image. It seems intuitively plausible that when given a choice most women would opt for less surgery. There are at least seven published studies in which this issue was examined and they are shown in Table 1. It is very difficult to compare these data directly as we have little information about the manner in which treatment options were presented, but it does show that, when offered choice, considerable numbers of women will opt for mastectomy. In our own work the most usual reasons given were to avoid radiotherapy and local recurrence, When women are told that the likelihood of local recurrence in breast conservation is approximately 20% [13], many prefer to have a mastectomy.
4. Wome~‘s
participation
in decision-making
The changes in societal attitudes towards individual autonomy in both Europe and the US, over the past few decades, together with the advent of a much more consumerist approach within medicine, have undoubtedly affected medical practice [ 141. In some US states physicians are legally bound to inform women of the different treatment options available [15]. The
and Counseling
30 (1997)
209-214
211
advocates of greater patient involvement in choice have asserted. with much confidence but few data, that choice would lead to improved satisfaction with health care and acceptance of treatment [16]. Others have also assumed that all patients want more involvement in decision-making. However, most of the published data from patients who actually have cancer, rather than lay populations hypothesising about their preferences if they had the disease, reveal that whilst the majority definitely want more information about their disease and treatment [10,17-191 far fewer wish to assume responsibility for decisionmaking [20,21]. In a Canadian study, Degner and co-workers compared the preferences for participation in decision-making of 428 cancer patients with those of 271 people without cancer. A mere 12% of patients wished for active participation, 29% preferred a collaborative role and 59% wished for a passive role. In contrast, 54% of the noncancer sample felt that they would want an active role and only 9% a passive role. Similar numbers (27%) would prefer a collaborative role. In a study of 150 British women with breast cancer, 20% wished to assume an active role in decisionmaking. 28% wanted to share responsibility with the doctor and the majority, 52% preferred a passive role, Interestingly, 200 women with benign breast disease had preferences that lay between those found in a well-population and a group with cancer: 24% wished for an active role, 45% a more collaborative one and 31% a passive role [21]. It seems, on balance, reasonable to argue that the perception of healthy individuals about their desire to participate in decision-making should they develop breast cancer. bears little resemblance to those of people confronting a lifethreatening disease. Women who have had a scare with benign breast disease are less likely to have the more polarised views about participation or non-participation seen in either those with breast cancer or those who are well. None of this means that women with breast cancer should not be invited to be involved in the decision-making where options exist, but choosing treatment does not automatically produce the
212
L. Fallowfield
I Patient
Education
benefits that some have suggested. Hack et al. reported that for patients who prefer a more passive role, pressure to be active in decisionmaking was extremely anxiety-provoking [22]. In a study conducted by this authors group [lo], women who had been offered choice were asked to comment on their feelings about this and how easy they had found decision-making. Almost half (49%) of the patients felt pleased about having been offered choice. The following quotation is a fairly typical reaction of women in this group of patients: “Yes, I did like it - I thought I was in control.” Another said, “I liked very much that I could choose. I actually wrote to him (the surgeon) and said I appreciated being treated as an adult, being able to make my own choices.” However, a fifth of the patients had clear reservations as the next quotation shows. “I think it was the most traumatic thing... I said, but why are you giving me this choice, you’re the expert?” and another commented, “I found it the most horrendous thing, because what do you do if you can’t ask him, because he can’t decide?”
WI.
As far as ease of decision-making was concerned, 37% experienced some level of difficulty, including 13% who felt quite unable to choose and insisted that the surgeon made the choice for them. However, the majority of women (63%) made the decision without difficulty. Interestingly, these figures are very similar to those found in another study of men with prostate cancer, where it was reported that 10% found it very difficult but that 70% of men made their decisions easily [23]. It is naive to assume that all patients necessarily want, and benefit from, active involvement in decision-making. The situation is much more complex and has not been very well informed to date by most of the empirical work. Some research has suggested that patients who want active involvement tend to be younger [l&20] and more highly educated [17,22]. However, age was not a significant variable in work done by ourselves [9,10] and others [22]. More rigorous scientific work is clearly necessary to examine more fully the positive and negative aspects of decision-making. Whatever the outcome of this,
and Counseling
30 (1997)
209-214
both clinicians and the vociferous proponents of choice should recognise three things: that a significant minority of patients do not wish for involvement; that true autonomy means the right to decline decision-making opportunities and that those making a choice must be provided with sufficient information to make an informed decision.
5. Information cancer
needs of women
with breast
Comments have already been made in this paper suggesting that there is little reason for confidence that women are always provided with sufficient information on which to base their choices. Some workers have pointed out that information is often given inappropriately and at the wrong time for women to be able to make truly informed choices [24]. In one retrospective study, reported in the US, of 160 women who had chosen breast conserving surgery with radiotherapy as their breast cancer treatment, 26% said that they were dissatisfied with the pre-operative information given on which they had based their treatment decisions. They claimed that quite basic information, such as the need for axillary clearance and post-operative radiotherapy, had been omitted and 45% said that there had been a lack of information about the need for post-operative arm exercises [25]. It is, of course, possible that the women’s recall about what had been told may have been faulty, nevertheless it demonstrates the point that information needs to be given systematically, at the right time and via several different routes, to maximise the chances for patients to understand the implications of treatment options and make really informed choices. Although the need for specific information may vary between patients, a recently reported study in the UK showed that, in general, patients wish to be well-informed about diagnosis, prognosis, therapeutic options and side-effects. Those patients preferring more limited information are few but their views need respecting also. These results underscore the need for clinicians to assess individual patient’s
L. Fallowfield
needs and elicit
their
information
I Patient
Education
preferences
1351.
6. Conclusion
This article has concentrated on the surgical options for the treatment of breast cancer and not considered the impact of discussing all the other treatment modalities which might be given either as an adjuvant or palliatively. Attempting to provide a straightforward description, in nontechnical language, about the pros and cons of the various combinations of hormonal and cytotoxic chemotherapy, not to mention high dose chemotherapy with stem cell rescue, and all the potential side-effects, to a women already bewildered and anxious about her diagnosis and prognosis, is not an easy task. Controversies about the treatment of breast cancer abound. In order to resolve some of the uncertainties, many clinical trials are being conducted. Sharing these uncertainties with a patient desperate for reassurance is a daunting task and it is not that surprising that many, potentially eligible patients, are not entered into clinical trials. Most trial protocols now insist on excessive disclosure of every possible risk, no matter how remote, and psychological harm could occur from information overload in those who prefer slightly fewer options. These comments are not meant to suggest that difficult, controversial and sometimes uncertain information should be withheld from women, but rather that we need to find reliable methods of detecting those patients who have different informational needs. As Steptoe and colleagues have pointed out, merely providing information and improving communication skills is not sufficient; account has to be taken of patients’ ways of coping with stress which may vary from one extreme of seeking out all possible information, to the other of being more avoidant of information [27]. Some doctors are both reluctant to acknowledge that many women with breast cancer are quite capable of making decisions when approp~ately informed and, furthermore, feel that their professionalism is being undermined
and Counsehg
30 (1997)
209-214
213
by the mere suggestion of more patient autonomy. There are also some clinicians who feel a genuine dilemma about sharing too much information about the uncertainty surrounding different treatments and making patients assume more responsibility for treatment decisions. They often argue that they feel it is unethical to do this and ‘protect’ patients by withholding information. Doubtless, this viewpoint would be regarded as unacceptably patronising by the proponents of choice. No one in the debate can really claim the moral high ground and we still need much more rigorous research on the subject. This might lead to things such as better training in appropriate communication skills for doctors dealing with women with breast cancer. Improvements in basic health education for patients are needed so that people feel more at ease about asking questions about medical issues. Much more use could probably be made of health-care professionals and others trained in patient advocacy. Certainly, the advent of the clinical nurse specialist appears to be a step in the right direction but their interventions are worthy of more thorough evaluation. The use of information booklets, leaflets, audio-tapes and interactive videos are other measures that could potentially relieve patients of some of their anxiety and help them feel more informed. All these interventions need careful development and evaluation, only then will the real issues about involving patients in choice following adequate information giving, become a little clearer.
Acknowledgment
The author wishes to thank the Cancer Research Campaign for their sponsorship during preparation of this paper.
References [I] Faliowfield L, Baum M, Maguire G. Effects of breast conservation on psychological morbidity associated with
L. Fallowfield I Patient Education and Counseling 30 (1997) 209-214
214
diagnosis and treatment of early breast cancer. Br Med J 1986; 293: 1331-1334. [2]
[3] [4] [5]
[6]
Wilson RG, Hart A. Dawes PJDK. Mastectomy or conservation: the patient’s choice. Br Medi J 1988; 297: 1167-1172. Ashcroft JJ, Leinster SJ, Slade PD. Breast cancer patient choice of treatment: preliminary communication. J R Sot IMed 1985; 78: 43-46. Wolberg WH, Tanner MA, Romsaas EP. Factors influencing options in primary breast cancer treatment. J Clin Oncol 1987; 5: 68-74. Morris J, Royle GT. Offering patients a choice of surgery for early breast cancer: a reduction in anxiety and depression in patients and their husbands. Sot Sci Med 1988; 26: 583-585. Leinster SJ, Ashcroft JJ, Slade PD, Dewey ME. Mastectomy versus conservative surgery: psychosocial effects of the patient’s choice of treatment. J Psychosoc Oncol 1989; 7: 179-192.
[7]
[S]
[9]
[lo]
[ll] [12] [t3]
[14]
Pozo C, Carver CS, Noriega V et at. Effects of Mastectomy versus lumpectomy on emotional adjustment to breast cancer: a prospective study of the first year postsurgery. J Clin Oncol. 1992; 10: 1292-1298. Levy SM, Herberman RB, Lee JK, Lippman ME, D’Angelo T. Breast conservation versus mastectomy: distress sequelae as a function of choice. J Clin Oncol 1989: 7: 367-375. Fallowfield LJ, Hall A, Maguire P, Baum M. Psychological outcomes of different treatement policies in women with early breast cancer outside a clinical trial. Br Med J 1990; 301: 575-580. Fallowfield LJ, Hall A. Maguire P, Baum M, A’Hern RP. A question of choice: results of a prospective 3-year follow-up study of women with breast cancer. The Breast 1994; 3: 202-208. Fallowfield L, Davis H (editors). Counselling and Communication in Health Care. Chichester: John Wiley. 1991; 319-340. Pistrang N, Barker C. Disclosure of concerns in breast cancer. Psycho-Oncol 1992: 1: 183-392. Locker AP. Ellis IO, Morgan DAL, Elston CW. Mitchell A. Blarney RW. Factors influencing local recurrence after excision and radiotherapy for primary breast cancer. Br J Surg 1989; 76: 890-894. Richards MA, Ramirez AJ, Degncr LF, Fallowfield LJ, Maher EJ, Neuberger J. Offering choice of treatment to patients with cancers. a review based on a symposia held at the 10th Annual Conference of The British Psychosocial Oncology Group. December 1993. Eur J Cancer 1995: 31: 112-116.
[15] Ganz PA, Schag AC, Lee J, Polinsky ML, Tan SJ. Breast conservation vs. mastectomy. Is there a difference in psychological adjustment or quality of life in the year after surgery? Cancer 1992: 68: 1729-1738. 1161 Brody US. The patient’s rofe in clinical decision-making. Ann Intern Med 1980: 93: 718-722. [17] Cassileth BR. Zupkis RV Sutton-Smith K, March V. Information and participation preferences among cancer patients. Ann Intern Med 1980; 92: 832-836. ]lS] Blanchard CG, Labreque MS, Buckdeschel JC, Blanchard EB. Information and decision-making preferences of hospitalised adult cancer patients. Sot Sci Med 1988: 27: 1139-1145. [19] Sutherland HJ, Llewellyn-Thomas HA, Lockwood GA, Tritchler DL. Till JE. Cancer patients: their desire for information and participation in treatment decisions. J R Sot Med 1989: 82: 260-263. [20] Degner LF, Sloan JA. Decision-making during serious illness: what role do patients really want to play? J Clin Epidemiol 1992; 45: 941-950. [21] Luker K. Leinster S. Owens G, Beaver K, Degner L. Preferences for information and decision making in women newly diagnosed with breast cancer. In: Research and Development Unit, University of Liverpool Department of Nursing, Liverpool, 1993. [22] Hack TF, Degner LF, Dyck DG. Relationship between preferences for decisional control and illness information among women with breast cancer: a quantitative and qualitative analysis. Sot Sci Med 1994; 39: 279-289. [23] Cassileth BR, Soloway MS, Vogelzang NJ. Patients’ choice of treatment in Stage D prostate cancer. Urology 1989; 33: 57-62. [24]
[25]
[26] [27]
f28]
Valanis B, Rumpler C. Helping women to choose breast cancer treatment alternatives. Cancer Nursing 1987: 8: 167-175. Cawley M, Kostic J, Cappello C. Information and psychosocial needs of women choosing conservative surgery/primary radiation for early stage breast cancer. Cancer Nursing 1990; 13: 90-94. Fallowfield LJ, Ford S. Lewis S. Information preferences of patients with cancer. The Lancet 1994; 344: 1576. Steptoe A. Sutcliffe I. Allen B, Coombes C. Satisfaction with communication, medical knowledge, and coping style in patients with metastatic cancer. Sot Sci Med 1991; 32: 627-632. Cotton T, Locker AP, Jackson L, Blarney RW. Morgan DAL, A prospective study of patient choice in treatment for breast cancer. Eur J Surg Oncol 1991; 17: 115-117.
Patient Education and Counseling 30 (1997) 209-214
Offering choice of surgical treatment to women with breast cancer Lesley Fallowfield” CRC
Communication
and Counselling Research Centre, 3rd Floor, Bland Sutton Institute,
Department 48 Riding
of Oncology, University College London House Street, London WlP 7PL, UK
Medical
School,
Received 1 September 1995; revised 31 July 1996: accepted 18 August 1996
Abstract Much hasbeen written about the psychosocialand sexuaIdysfunction associatedwith the diagnosisand treatment of breast cancer. Hopes that breast conserving techniqueswould lead to a reduction in someof the psychosocial morbidity experienced, have not materialised. Most of the methodologically sound studies reported to date demonstratefew differencesin quality of life domainsbetween women whatever their primary surgicaltreatment. Someresearcherssuggestedthat if womenwere offered an opportunity to selectthe surgicaloption they preferred, then two thingswould occur: (1) women would choosebreast-conservingtechniques,and (2) choice in itself would prevent psychosocialmorbidity. Despite strong support for both of theseassumptions,neither have been borne out. Significant numbers of women, when offered choice, opt for mastectomy and choice in itself does not convey protection from psychologicalmorbidity. The majority of women seemto welcomebeing given clear information about the options available, together with the reasonsas to why a clinician would advise one policy rather than another. However, fewer women than expected wish to take a major role in decision-makingabout their breast cancer treatment. Keywords: Breast cancer; Choice: Participation; Decision-making;Information
1. Introduction The psychosocial havoc and sexual dysfunction associated with the diagnosis and treatment of breast cancer are well known. Despite hopes that the availability of breast conserving techniques would reduce some of this psychosocial morbidity, appro~mate~y 25%-30% of women with the
*Corresponding + 0171 6366151. 073%3991/97/$17.00 PII
author.
Tel:
+ 0171 636 6462; fax:
disease experience significant psychosocial morbidity whatever their primary surgical treatment. In one of the first studies challenging the notion that mastectomy was the cause of psychiatric morbidity, Fallowfield et al. reported similar rates of anxiety, depression and sexual problems in 101 women randomised to either mastectomy or breast conserving surgery (11. This work was criticised on the grounds that women had been randomised to treatment. It was argued that more autonomous women, able to choose their treatment, would (1) show a clear preference for
Copyright @ 1997 Elsevier Science Ireland Ltd. All rights reserved
SO738-3991(96)00947-O
210
L. Fal~ow~eld
I Patienf
Edrtcation
breast-conserving surgery, and (2) have much lower rates of psychological distress. Over the past few years women with breast cancer have been encouraged to become much more involved in the clinical decision-making process. It is timely to step back and examine what benefits, if any, have occurred as a result of this and ask whether or not the assumptions about what women want and need, as far as treatment choices are concerned, are correct. Three inter-related issues are discussed in this paper: first, the psychological impact of being given the choice of different treatment options for breast cancer, second, women’s preferences for participation in decision-making and, finally, the informational needs of women with breast cancer.
2. Choice of treatment
options
Unfortunately, most of the published quantitative data concerning the putative benefits of involving women in decision-making about their primary surgical treatment suffer from a variety of methodological problems, including shortterm follow-up, very small samples, unrepresentative sampling, somewhat scanty assessment of morbidity, as well as incomplete reporting of the data [2-51. Consequently, evidence that choice produces measurable positive outcomes is not compelling. Two very small studies, found little difference between the women given a choice of treatment and those not [6,7]. A study completed in the United States reported that women who were offered a choice and opted for breast conserving surgery, were psychologically worse off [S]. However, follow-up in this study was only 3 months. A prospective study of 269 women under the age of 75 years with Stage I or II breast cancer [9,10] was conducted in the UK. Women were being treated by 22 different surgeons who belonged to one of three groups: those who preferred mastectomy, those with a preference for breast conserving surgery and, finally, those who offered women the choice of surgical treatment whenever possible. The women managed
and Counseling
30 (1997)
209-214
by surgeons who preferred to offer choice had the lowest incidence of psychological distress at all five time-points over a 3-year period [lo]. However, when the data were analysed more closely, it became apparent that choice in itself had not been the major factor influencing psychiatric morbidity. Among the 118 women treated by surgeons who offered choice, 62 were given a real choice, whereas 56 had their treatment determined by the surgeon, based on technical considerations (e.g. a large central lump in a small breast where breast conservation would have given a very poor cosmetic result). There were no significant differences in rates of anxiety or depression between the patients offered choice and those not, who were treated by ‘choice’ surgeons. The answer as to why the ‘choice’ surgeons patients had better psychological adjustment, in comparison to the women treated by other surgeons, could be found when one looked at the satisfaction of patients with information given at the time of diagnosis. Overall 80/26’7 women thought their information inadequate. Almost half the total sample of women in the study who felt poorly informed were anxious or depressed, or both, at 1 year, whereas 26% of the patients who felt well-informed had psychological problems at 1 year (P = 0.005) [9]. Satisfaction with information was significantly greater amongst the patients of ‘choice’ surgeons, irrespective of the eventual treatment they received or whether or not they had been given a real choice. Clearly, ‘choice’ surgeons were perceived as better communicators. The issue of informational needs will be discussed again more fully later.
3. What choices do women make? The fact that in the past many people assumed that breast amputation was the primary cause of psychosocial distress and sexual dysfunction, failing to recognise that whatever treatment received, women still had to confront the fact that they had a life-threatening disease. For many women their predominant concern is not so much breast loss, as fear of cancer and fear of
L. Fallowfield Table Which
1 operation
do women
I Patient
Education
choose?
Author
Date
N
Mastectomy
Breast
Conservation Morris and Royle [j] Wolberg et al. [4] Wilson et al. [2] Fallowfield et al. i9] Cotton et al. [28] Pozo et al. [7]
1987 1987 1988 1990 1991 1992
20 110 153 62 01 39
7 56 99 19 so 24
13” 54 54 43” 41 1s
“Studies quently
where breast conservation than mastectomy.
was chosen
more
fre-
recurrence [1,11,12]. However, breast caficer surgery can be mutilating and breast reconstructive techniques are not always satisfactory. Most studies done, showing no differences in psychiatric morbidity between mastectomy and breast conservation, nevertheless do report benefits to women who have undergone the latter, in terms of preservation of body image. It seems intuitively plausible that when given a choice most women would opt for less surgery. There are at least seven published studies in which this issue was examined and they are shown in Table 1. It is very difficult to compare these data directly as we have little information about the manner in which treatment options were presented, but it does show that, when offered choice, considerable numbers of women will opt for mastectomy. In our own work the most usual reasons given were to avoid radiotherapy and local recurrence, When women are told that the likelihood of local recurrence in breast conservation is approximately 20% [13], many prefer to have a mastectomy.
4. Wome~‘s
participation
in decision-making
The changes in societal attitudes towards individual autonomy in both Europe and the US, over the past few decades, together with the advent of a much more consumerist approach within medicine, have undoubtedly affected medical practice [ 141. In some US states physicians are legally bound to inform women of the different treatment options available [15]. The
and Counseling
30 (1997)
209-214
211
advocates of greater patient involvement in choice have asserted. with much confidence but few data, that choice would lead to improved satisfaction with health care and acceptance of treatment [16]. Others have also assumed that all patients want more involvement in decision-making. However, most of the published data from patients who actually have cancer, rather than lay populations hypothesising about their preferences if they had the disease, reveal that whilst the majority definitely want more information about their disease and treatment [10,17-191 far fewer wish to assume responsibility for decisionmaking [20,21]. In a Canadian study, Degner and co-workers compared the preferences for participation in decision-making of 428 cancer patients with those of 271 people without cancer. A mere 12% of patients wished for active participation, 29% preferred a collaborative role and 59% wished for a passive role. In contrast, 54% of the noncancer sample felt that they would want an active role and only 9% a passive role. Similar numbers (27%) would prefer a collaborative role. In a study of 150 British women with breast cancer, 20% wished to assume an active role in decisionmaking. 28% wanted to share responsibility with the doctor and the majority, 52% preferred a passive role, Interestingly, 200 women with benign breast disease had preferences that lay between those found in a well-population and a group with cancer: 24% wished for an active role, 45% a more collaborative one and 31% a passive role [21]. It seems, on balance, reasonable to argue that the perception of healthy individuals about their desire to participate in decision-making should they develop breast cancer. bears little resemblance to those of people confronting a lifethreatening disease. Women who have had a scare with benign breast disease are less likely to have the more polarised views about participation or non-participation seen in either those with breast cancer or those who are well. None of this means that women with breast cancer should not be invited to be involved in the decision-making where options exist, but choosing treatment does not automatically produce the
212
L. Fallowfield
I Patient
Education
benefits that some have suggested. Hack et al. reported that for patients who prefer a more passive role, pressure to be active in decisionmaking was extremely anxiety-provoking [22]. In a study conducted by this authors group [lo], women who had been offered choice were asked to comment on their feelings about this and how easy they had found decision-making. Almost half (49%) of the patients felt pleased about having been offered choice. The following quotation is a fairly typical reaction of women in this group of patients: “Yes, I did like it - I thought I was in control.” Another said, “I liked very much that I could choose. I actually wrote to him (the surgeon) and said I appreciated being treated as an adult, being able to make my own choices.” However, a fifth of the patients had clear reservations as the next quotation shows. “I think it was the most traumatic thing... I said, but why are you giving me this choice, you’re the expert?” and another commented, “I found it the most horrendous thing, because what do you do if you can’t ask him, because he can’t decide?”
WI.
As far as ease of decision-making was concerned, 37% experienced some level of difficulty, including 13% who felt quite unable to choose and insisted that the surgeon made the choice for them. However, the majority of women (63%) made the decision without difficulty. Interestingly, these figures are very similar to those found in another study of men with prostate cancer, where it was reported that 10% found it very difficult but that 70% of men made their decisions easily [23]. It is naive to assume that all patients necessarily want, and benefit from, active involvement in decision-making. The situation is much more complex and has not been very well informed to date by most of the empirical work. Some research has suggested that patients who want active involvement tend to be younger [l&20] and more highly educated [17,22]. However, age was not a significant variable in work done by ourselves [9,10] and others [22]. More rigorous scientific work is clearly necessary to examine more fully the positive and negative aspects of decision-making. Whatever the outcome of this,
and Counseling
30 (1997)
209-214
both clinicians and the vociferous proponents of choice should recognise three things: that a significant minority of patients do not wish for involvement; that true autonomy means the right to decline decision-making opportunities and that those making a choice must be provided with sufficient information to make an informed decision.
5. Information cancer
needs of women
with breast
Comments have already been made in this paper suggesting that there is little reason for confidence that women are always provided with sufficient information on which to base their choices. Some workers have pointed out that information is often given inappropriately and at the wrong time for women to be able to make truly informed choices [24]. In one retrospective study, reported in the US, of 160 women who had chosen breast conserving surgery with radiotherapy as their breast cancer treatment, 26% said that they were dissatisfied with the pre-operative information given on which they had based their treatment decisions. They claimed that quite basic information, such as the need for axillary clearance and post-operative radiotherapy, had been omitted and 45% said that there had been a lack of information about the need for post-operative arm exercises [25]. It is, of course, possible that the women’s recall about what had been told may have been faulty, nevertheless it demonstrates the point that information needs to be given systematically, at the right time and via several different routes, to maximise the chances for patients to understand the implications of treatment options and make really informed choices. Although the need for specific information may vary between patients, a recently reported study in the UK showed that, in general, patients wish to be well-informed about diagnosis, prognosis, therapeutic options and side-effects. Those patients preferring more limited information are few but their views need respecting also. These results underscore the need for clinicians to assess individual patient’s
L. Fallowfield
needs and elicit
their
information
I Patient
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preferences
1351.
6. Conclusion
This article has concentrated on the surgical options for the treatment of breast cancer and not considered the impact of discussing all the other treatment modalities which might be given either as an adjuvant or palliatively. Attempting to provide a straightforward description, in nontechnical language, about the pros and cons of the various combinations of hormonal and cytotoxic chemotherapy, not to mention high dose chemotherapy with stem cell rescue, and all the potential side-effects, to a women already bewildered and anxious about her diagnosis and prognosis, is not an easy task. Controversies about the treatment of breast cancer abound. In order to resolve some of the uncertainties, many clinical trials are being conducted. Sharing these uncertainties with a patient desperate for reassurance is a daunting task and it is not that surprising that many, potentially eligible patients, are not entered into clinical trials. Most trial protocols now insist on excessive disclosure of every possible risk, no matter how remote, and psychological harm could occur from information overload in those who prefer slightly fewer options. These comments are not meant to suggest that difficult, controversial and sometimes uncertain information should be withheld from women, but rather that we need to find reliable methods of detecting those patients who have different informational needs. As Steptoe and colleagues have pointed out, merely providing information and improving communication skills is not sufficient; account has to be taken of patients’ ways of coping with stress which may vary from one extreme of seeking out all possible information, to the other of being more avoidant of information [27]. Some doctors are both reluctant to acknowledge that many women with breast cancer are quite capable of making decisions when approp~ately informed and, furthermore, feel that their professionalism is being undermined
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by the mere suggestion of more patient autonomy. There are also some clinicians who feel a genuine dilemma about sharing too much information about the uncertainty surrounding different treatments and making patients assume more responsibility for treatment decisions. They often argue that they feel it is unethical to do this and ‘protect’ patients by withholding information. Doubtless, this viewpoint would be regarded as unacceptably patronising by the proponents of choice. No one in the debate can really claim the moral high ground and we still need much more rigorous research on the subject. This might lead to things such as better training in appropriate communication skills for doctors dealing with women with breast cancer. Improvements in basic health education for patients are needed so that people feel more at ease about asking questions about medical issues. Much more use could probably be made of health-care professionals and others trained in patient advocacy. Certainly, the advent of the clinical nurse specialist appears to be a step in the right direction but their interventions are worthy of more thorough evaluation. The use of information booklets, leaflets, audio-tapes and interactive videos are other measures that could potentially relieve patients of some of their anxiety and help them feel more informed. All these interventions need careful development and evaluation, only then will the real issues about involving patients in choice following adequate information giving, become a little clearer.
Acknowledgment
The author wishes to thank the Cancer Research Campaign for their sponsorship during preparation of this paper.
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