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38，279例新病例（38，004例女性）。家族和遗传特征分析技术可以估计个人面临的风险和特定干预措施降低风险的前景。风险降低乳房切除术（RRM）是切除健康的乳房组织，以降低未来患乳腺癌的风险。双侧RRM（CRRM）是在经历过癌症的患者中切除对侧乳房的组织，而BRRM涉及通常没有亲身经历过癌症的癌症高风险女性的双侧乳房。 我们预测和手术降低风险的能力也造成了一个困境。乳房手术可能会产生不良的医疗和心理影响，需要与降低风险的益处相平衡。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，他们的偏好取决于他们对癌症可能性的痛苦程度。外科医生似乎对这种痛苦表示同情，并普遍同意CRRM的要求。从表面上看，我们担心的是，在这些决定中，病人痛苦的主要作用和客观风险的次要作用可能不符合病人的最佳利益，甚至不符合道德。 然而，这些调查结果的含义是开放的解释。风险认知文献中的证据表明，痛苦不一定会抑制正确的决策。事实上，妇女和外科医生使用当前痛苦的强度和持续时间来判断妇女如果不做手术会有多痛苦。因此，进行手术以减少病人的痛苦可能被认为是合理的和道德的。从外科医生的角度来看，目前还不清楚他们是否帮助病人形成对手术的意见，或者他们是否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否决患者选择的伦理基础还远未明确。 这些问题并非乳腺癌所独有。最近发展的方法，以减少风险，使用侵入性程序意味着这些困境正在成为常见的一系列医疗领域，并有可能在复杂性和数量上增长。为了澄清和帮助解决这些问题，我们打算进一步研究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所看到的关键问题以及这些观点如何影响决策结果。 通过对患者及其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思想解释我们的研究结果。作为回报，我们期望我们从这一研究领域得出的结论将有助于生物伦理学和决策方面更广泛文献的发展。

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.