Patient and surgeon decision-making in risk-reducing mastectomy: an ethical and empirical analysis

乳腺癌是英国最常见的癌症之一，2006年报告了38279例新病例(38004名女性)。家族性和遗传性分析技术既可以评估个人面临的风险，也可以评估具体干预措施的风险降低前景。降低风险乳房切除术(RRM)是切除健康的乳房组织，以降低未来患乳腺癌的风险。对侧RRM(CRRM)是指经历过癌症的患者切除对侧乳房的组织，BRRM涉及癌症高危女性的双侧乳房，这些女性通常没有亲身经历过癌症。我们预测和手术降低风险的能力也造成了一个两难境地。乳房手术可能会产生不利的医疗和心理影响，需要在降低风险的好处之间取得平衡。我们的初步研究表明，潜在的CRRM患者在决策时不会考虑手术或未来癌症的风险。相反，他们的偏好是由他们对癌症可能性的痛苦程度决定的。外科医生似乎对这种痛苦表现出了同情，并普遍同意了CRRM的请求。从表面上看，我们担心在这些决定中，患者痛苦的主要作用和客观风险的次要作用可能不符合患者的最佳利益，甚至不符合道德。然而，这些发现的意义是可以解释的。来自风险认知文献的证据表明，痛苦并不一定会阻碍健全的决策。事实上，女性和外科医生使用当前痛苦的强度和持续时间来判断如果不做手术，女性会有多痛苦。因此，进行手术以减轻患者的痛苦可能被认为是合理的和合乎伦理的。从外科医生的角度来看，尚不清楚他们是帮助患者形成对手术的看法，还是质疑他们认为做得不好的决定。事实上，外科医生应该鼓励患者决定他们的治疗过程，而外科医生试图影响或凌驾于患者选择之上的伦理依据还远不清楚。这些问题并不是乳腺癌独有的。最近利用侵入性程序降低风险的方法的发展意味着，这些困境在一系列医疗领域变得普遍，而且可能会在复杂性和数量上增加。为了澄清和帮助解决这些问题，我们打算进一步审查妇女及其外科医生的个人和联合决策过程，以更好地了解每个人对关键问题的看法，以及这些观点如何影响决策结果。通过对患者和他们的外科医生的一系列定性访谈，我们将研究患者如何形成支持和反对RRM手术的偏好，以及外科医生如何处理这些偏好。为了更好地理解在这些情况下可能采取的适当行动，我们将根据当代生物伦理学和决策方面的思想来解释我们的发现。作为回报，我们期待我们从这一研究领域得出的结论将有助于这些生物伦理学和决策方面的更广泛文献的发展。

Breast cancer is one of the most common cancers in the UK, with 38,279 new cases (38,004 female) reported during 2006. Familial and genetic profiling techniques permit the estimation of both risk faced by individuals and the risk-reduction prospects of specific interventions. Risk Reducing Mastectomy (RRM) is the removal of healthy breast tissue to reduce the future risk of breast cancer. Contralateral RRM (CRRM) is the removal of tissue in the opposite breast in patients who have experienced cancer and BRRM involves to both breasts of women at high risk of cancer who have usually not personally experienced cancer. Our ability to predict and surgically reduce risk also creates a dilemma. Breast surgery can have adverse medical and psychological effects which need to be balanced against risk reduction benefits. Our pilot research indicates that potential CRRM patients do not consider the risks of surgery or future cancer in their decision-making. Instead, their preferences were determined by the degree to which they were distressed by the possibility of cancer. Surgeons appeared to show empathy to this distress and generally assented to CRRM requests. On the surface, we are concerned that the primary role of patient distress, and minor role of objective risk, in these decisions may not be in patients best interests or even ethical. However, the meaning of these findings is open to interpretation. Evidence from the risk perception literature suggests that distress does not necessarily inhibit sound decision-making. Indeed, women and surgeons use the intensity and duration of current distress to judge how distressed women will be if they do not have surgery. Thus, conducting surgery to reduce patient distress might be considered to be reasoned and ethical. From surgeons' perspectives, it is unclear whether they assist patients to form opinions about surgery or whether they question decisions that they feel are poorly made. Indeed, surgeons should encourage patients to determine the course of their treatment, and the ethical grounds on which surgeons can attempt to influence or over-rule patient choices are far from clear. These issues are not unique to breast cancer. The recent development of methods to reduce risk using invasive procedures means that these dilemmas are becoming common in a range of medical areas and are likely to grow in complexity and number. To clarify and help to resolve these issues, we intend to further examine processes of individual and joint decision-making by women and their surgeons to better understand how the key issues as viewed by each and how these views influence the decision outcome. Using a series of qualitative interviews with patients and their surgeons, we will examine how patients form preferences both for and against RRM surgery, and how surgeons deal with these preferences. To develop a better understanding of what might be appropriate actions in these situations, we will interpret our findings in the light of contemporary thought in bioethics and decision-making. In return, we expect that the conclusions that we reach from this area of research will assist in the development of these broader literatures in bioethics and decision-making.