Chronic illness and the moral obligations of healthcare professionals

大多数当代医学伦理学的工作都集中在医生或其他医疗保健专业人员对患者所做的事情上-例如，对他们进行手术或从他们身上采集血液样本。因此，关于医学伦理学的工作通常将医疗保健专业人员描述为主动的（采取行动的个人），而将患者描述为被动的（采取行动的个人）。然而，当我们将注意力转向医疗保健的其他领域时，这种描述医疗保健专业人员/患者关系的方式是不合适的，例如治疗慢性或长期疾病患者。1型糖尿病患者很可能会采取自己的血液样本，测试这些样本，决定应该提供的胰岛素量，并给自己注射胰岛素。在这样的情况下，患者正在进行医学伦理文献中通常认为由医疗保健专业人员进行的活动，而医疗保健专业人员的角色转变为使患者能够帮助自己并支持患者帮助自己。同样，对于许多医疗保健专业人员来说，帮助患者保护他们未来的健康是他们角色的关键部分。在这方面，病人是需要采取有关步骤的一方，而医护专业人员则提供指导和支持，这种情况并不罕见，但迄今为止，还没有就这种支持和促进作用对医护专业人员道德义务的影响进行过持续和有系统的工作。该项目旨在填补这一空白。这样做很重要，因为当我们的重点从医疗保健专业人员为她的病人做些什么，转向医疗保健专业人员支持她的病人照顾自己时，新的道德挑战就会出现。其中之一是，关于医疗保健专业人员向患者提供信息的义务的说明集中在患者对治疗（或参与研究）给予知情同意所需的信息上。但是，在患者治疗自己的情况下，不需要以同样的方式获得知情同意，因此，这些账户对医疗保健专业人员在这种情况下应该提供多少信息没有任何说明。第二个挑战是，患者并不总是遵循商定的治疗。有时这是因为他们改变了主意是否适合他们，但在其他情况下则不是（例如，患者忘记服用药物）。如何处理这是一个重要的问题，在医疗实践中-提出的问题，如何干预的医疗保健专业人员应该，以及医疗保健专业人员的责任的限制。这些问题是规范性的。他们提出的问题是，医疗保健专业人员应该在多大程度上尊重患者的自主权，这需要什么，以及如何平衡这一价值观与其他价值观（如做对患者最好的事情）。尽管如此，以及关于医学伦理学中的自主权和利益的大量辩论，这些问题尚未得到医学伦理学工作者的解决。该项目的核心目标是解决这些尚未探索的问题，使其与医疗保健专业人员和患者面临的挑战联系起来。

Most contemporary work in medical ethics focuses on things that doctors or other healthcare professionals do to their patients - for example, performing surgery on them or taking blood samples from them. As a result work on medical ethics has generally characterized the healthcare professional as active (the individual who acts) and the patient as passive (the individual who is acted on). However, this way of characterizing the healthcare professional/ patient relationship is inappropriate when we turn our attention to other areas of healthcare, such as treatment for patients with chronic or long-term conditions. A patient with Type 1 Diabetes may well take her own blood samples, test those samples, decide on the amount of insulin that should be provided, and inject herself with that insulin. In cases like this the patient is carrying out activities that in the medical ethics literature are standardly taken to be performed by healthcare professionals, while the healthcare professional's role shifts to one of enabling and supporting the patient to help herself. Similarly, for many healthcare professionals helping patients to protect their future health is a key part of their role. Here again it is not unusual for it to be the case that the patient is the one who needs to take the relevant steps, while the healthcare professional provides guidance and support.There has to date been no sustained and systematic work done on the implications of this supportive and enabling role for healthcare professionals' moral obligations. This project aims to fill this gap. Doing so is important because when our focus shifts from the healthcare professional doing something to her patients, to the healthcare professional supporting her patients to look after themselves, new moral challenges come to the fore. One of these is that accounts of healthcare professionals' obligations to provide information to patients have focused on what information is needed for patients to give informed consent to treatment (or to participate in research). But where the patient treats herself informed consent is not needed in the same way, and as such these accounts have nothing to say about how much information healthcare professionals should provide in such cases. A second challenge is that patients do not always follow agreed treatments. Sometimes this is because they change their mind about whether it is appropriate for them, but on other occasions it is not (e.g. the patient forgets to take their medication). How to deal with this is a significant problem in medical practice - raising questions about how interventionist healthcare professionals should be, and about the limits of the healthcare professional's responsibility. These questions are normative ones. They raise questions about how much healthcare professionals should respect their patients' autonomy, what this requires, and how to balance this value with other values (such as doing what is best for the patient). Despite this, and the considerable debate on autonomy and benefit in medical ethics, these questions have not yet been addressed by those working in medical ethics. It is a central aim of this project to tackle these, as yet unexplored, questions in a way that relates them to the challenges facing both healthcare professionals and patients.