Warranting the decision-maker, not the decision: How healthcare practitioners evaluate the legitimacy of patients' unprompted requests for risk-reducing mastectomy.

OBJECTIVE: Shared decision-making exists to reconcile healthcare practitioners' responsibilities to respect patients' autonomy whilst ensuring well-made decisions. Patients sometimes make unprompted requests for procedures that carry medical and other risks, such as risk-reducing mastectomy (RRM). Faced with pre-formed decisions into which they have had little input, it is unclear how practitioners can reconcile respecting autonomy with ensuring well-made decisions. METHODS: Qualitative study of linked patient-practitioner interviews in a breast unit in North-West England. We examined how 10 practitioners addressed 19 patients' unprompted requests for RRM. RESULTS: Practitioners empathised with patients' distress about cancer risk, regarded RRM as legitimate to help, but were wary of choices made 'emotionally'. Practitioners did not seek to establish whether choices were well-made but, instead, 'warranted' patients by satisfying themselves that patients were 'sensible' and 'informed' decision-makers, and thus their decisions could be trusted. Practitioners provided information, and tested patients' resolve by delaying decisions and presenting 'what if' scenarios depicting failure or harm from RRM. CONCLUSION: Patients who present emotionally and with resolution can receive RRM without evidence of a well-made decision. PRACTICE IMPLICATIONS: Argumentation theory proposes an ethically robust and clinically practicable approach, whereby practitioners elicit, examine and, where appropriate, challenge arguments underpinning patients' decisions.

Qualitative analysis of how patients decide that they want risk-reducing mastectomy, and the implications for surgeons in responding to emotionally-motivated patient requests.

OBJECTIVE: Contemporary approaches to medical decision-making advise that clinicians should respect patients' decisions. However, patients' decisions are often shaped by heuristics, such as being guided by emotion, rather than by objective risk and benefit. Risk-reducing mastectomy (RRM) decisions focus this dilemma sharply. RRM reduces breast cancer (BC) risk, but is invasive and can have iatrogenic consequences. Previous evidence suggests that emotion guides patients' decision-making about RRM. We interviewed patients to better understand how they made decisions about RRM, using findings to consider how clinicians could ethically respond to their decisions. METHODS: Qualitative face-to-face interviews with 34 patients listed for RRM surgery and two who had decided against RRM. RESULTS: Patients generally did not use objective risk estimates or, indeed, consider risks and benefits of RRM. Instead emotions guided their decisions: they chose RRM because they feared BC and wanted to do 'all they could' to prevent it. Most therefore perceived RRM to be the 'obvious' option and made the decision easily. However, many recounted extensive post-decisional deliberation, generally directed towards justifying the original decision. A few patients deliberated before the decision because fears of surgery counterbalanced those of BC. CONCLUSION: Patients seeking RRM were motivated by fear of BC, and the need to avoid potential regret for not doing all they could to prevent it. We suggest that choices such as that for RRM, which are made emotionally, can be respected as autonomous decisions, provided patients have considered risks and benefits. Drawing on psychological theory about how people do make decisions, as well as normative views of how they should, we propose that practitioners can guide consideration of risks and benefits even, where necessary, after patients have opted for surgery. This model of practice could be extended to other medical decisions that are influenced by patients' emotions.

How do women at increased breast cancer risk perceive and decide between risks of cancer and risk-reducing treatments? A synthesis of qualitative research.

OBJECTIVE: Risk-reducing procedures can be offered to people at increased cancer risk, but many procedures can have iatrogenic effects. People therefore need to weigh risks associated with both cancer and the risk-reduction procedure in their decisions. By reviewing relevant literature on breast cancer (BC) risk reduction, we aimed to understand how women at relatively high risk of BC perceive their risk and how their risk perceptions influence their decisions about risk reduction. METHODS: Synthesis of 15 qualitative studies obtained from systematic searches of SCOPUS, Web of Knowledge, PsychINFO, and Medline electronic databases (inception-June 2015). RESULTS: Women did not think about risk probabilistically. Instead, they allocated themselves to broad risk categories, typically influenced by their own or familial experiences of BC. In deciding about risk-reduction procedures, some women reported weighing the risks and benefits, but papers did not describe how they did so. For many women, however, an overriding wish to reduce intense worry about BC led them to choose aggressive risk-reducing procedures without such deliberation. CONCLUSIONS: Reasoning that categorisation is a fundamental aspect of risk perception, we argue that patients can be encouraged to develop more nuanced and accurate categorisations of their own risk through their interactions with clinicians. Empirically-based ethical reflection is required to determine whether and when it is appropriate to provide risk-reduction procedures to alleviate worry.

Are patient-nurse relationships in breast cancer linked to adult attachment style?

AIMS: The aim of this study was to ascertain if patients with breast cancer who have positive attachment models of 'self' and 'other' perceive higher levels of support from nurses than do patients with negative attachment models. BACKGROUND: Attachment models of 'self' and 'other' develop in childhood and affect relationships throughout life. People with negative attachment models tend to perceive themselves as unworthy of receiving support and to perceive others as incapable or unwilling to offer support. Attachment processes are activated when individuals feel threatened and seek support from those close to them. Breast cancer may represent such a threat and relationships between patients with breast cancer and nurses may therefore be influenced by patients' attachment models. DESIGN: A between-subjects cross-sectional design was used. Explanatory variables were indicators of patients' attachment models. Response variables were patient ratings of nurse support. Covariates were patient age and patient distress levels. METHOD: One hundred and fifty-three patients with breast cancer, diagnosed 1-3 years previously, were recruited when attending follow-up oncology appointments over 51 weeks in 2010-2011. Participants completed questionnaires assessing attachment models, distress and perceived support, from the nurse who was available to support them through their cancer. The hypotheses were tested by logistic regression analysis. RESULTS: Patients with more positive models of 'self' perceived more support from nurses. CONCLUSIONS: Patients' perceptions of nurses when being treated for breast cancer are influenced by patients' own models of attachment. Knowledge of this would help nurses further to individualize the emotional support they give patients.

'You're putting thoughts into my head': a qualitative study of the readiness of patients with breast, lung or prostate cancer to address emotional needs through the first 18 months after diagnosis.

OBJECTIVE: To investigate the readiness of patients to address emotional needs up to 18 months following a diagnosis of breast, lung or prostate cancer. METHOD: Patients (N = 42) attending pre-treatment, treatment and follow-up clinics were provided with information designed to help them manage their emotional reactions to cancer. Patients were interviewed 3-4 weeks later about their emotional experience of cancer and their attitudes towards managing emotional problems. Qualitative data analysis followed a constant comparative approach. RESULTS: Patients early in the cancer trajectory, who had not yet been engaged in chemotherapy or radiotherapy, described emotional distress as a temporary and understandable reaction that did not warrant professional intervention. They valued knowing that support was available, but did not want to use it, and were reluctant to acknowledge or address emotional needs. Conversely, patients currently or recently engaged in treatment readily acknowledged their emotional needs and welcomed help to address these. CONCLUSIONS: Drawing on social cognitive and other theories, we suggest that engagement in physical treatment and care allows patients to address emotional needs following a cancer diagnosis. Guidance that emotional needs should routinely be assessed and addressed at key points in the cancer trajectory should therefore be implemented cautiously when patients are only recently diagnosed; psychological intervention may be less appropriate at this time than later.

The influence of childhood abuse and adult attachment style on clinical relationships in breast cancer care.

OBJECTIVE: In a previous report, breast cancer patients reporting a history of childhood abuse were less likely to feel fully supported in their relationships with clinical staff than were patients who did not report an abuse history. Our aims were to replicate this effect, to test whether surgeons' difficulties in these relationships mediated the relationship of abuse to patients feeling less supported, and to test whether patients' attachment style mediates the influence of abuse on patients' or surgeons' experience of the relationship. METHOD: Women with primary breast cancer (N = 100) completed self-report questionnaires around the time of surgery to assess: emotional distress; adult attachment (models of self and other); sexual, physical and emotional abuse before age 16; and childhood parental care. After consultation three weeks post-operatively patients and surgeons completed self-report questionnaires to measure, respectively, patients' perceptions of support from the surgeon, and surgeons' perceptions of difficulty in their relationship with the patient. RESULTS: Patients recalling abuse were more than seven times more likely to feel incompletely supported by the surgeon than those not recalling abuse, after controlling for emotional distress. Surgeons reported greater difficulty in relationships with patients recalling abuse than with non-abused patients. Attachment (poor model of self) mediated the relationship of abuse with patient perceptions of incomplete support, but not the relationship with surgeon ratings of difficulty. CONCLUSION: The damaging effects of childhood abuse on adult relationships extend to relationships with surgeons in cancer care. While effects of abuse on attachment can explain the damage that patients experience, mediators of the difficulty that surgeons experience need further research.

Patients' sense of relationship with breast cancer surgeons: the relative importance of surgeon and patient variability and the influence of patients' attachment style.

OBJECTIVE: We examined to what extent variability in breast cancer patients' sense of relationship with their surgeons was attributable to patient vs surgeon variation and we examined the role of one patient characteristic: attachment style. METHODS: Women (N=133) due to undergo surgery for breast cancer with one of six surgeons self-rated their relationship with the surgeon, using the Working Alliance Inventory, and indicated their adult attachment style (secure vs insecure). Multilevel analysis of alliance scores quantified variance components at patient and surgeon levels and tested the relationship with attachment. RESULTS: Variability in alliance was overwhelmingly at the patient level. Alliance was greater in securely than non-securely attached patients, although this influence was small. CONCLUSION: Variability in quality of clinical relationships after breast cancer diagnosis largely reflects variation between individual patients, not surgeons. Although patients' attachment style is significant, its role is modest. More influential patient characteristics need to be identified. PRACTICE IMPLICATIONS: Breast cancer patients report a strong relationship with their surgeons. Because differences between surgeons make only a small contribution to variability in relationship, it should be a priority to identify and address the characteristics or behaviours at the level of individual patients that are associated with poorer relationships.

Anger and childhood sexual abuse are independently associated with irritable bowel syndrome.

OBJECTIVES: Irritable bowel syndrome (IBS) presents in the absence of identifiable organic pathology. Clinical and research literature has suggested that both childhood abuse and anger are linked to functional gastrointestinal conditions including IBS. The present study tested the predictions that IBS patients, when compared to patients with an organic bowel disease (Crohn's disease), have higher levels of trait and suppressed anger, and that these mediate the link between abuse and IBS. DESIGN: The study was a cross-sectional multivariate comparison between groups of patients with IBS and Crohn's disease. METHOD: Levels of self-reported trait and suppressed anger and recalled childhood abuse in patients with IBS (N=75) or Crohn's disease (N=76) were compared, using self-report questionnaires and controlling for other psychological characteristics (anxiety, depression, and dissociation). RESULTS: Trait and suppressed anger were greater in IBS patients, and differences in trait anger remained significant after controlling for other psychological variables. Childhood sexual abuse was more prevalent in IBS than Crohn's disease patients but was unrelated to trait anger. CONCLUSIONS: Higher levels of anger characterize IBS patients when compared to an organic bowel disease group, but do not explain the link between childhood abuse and IBS.