Chronic illness and the moral obligations of healthcare professionals

Lead Research Organisation: Queen's University of Belfast
Department Name: Sch of Politics Int Stu and Philosophy

Abstract

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.

Planned Impact

There are two main (overlapping) groups outside the academic research community who are potential beneficiaries of this research: 1. healthcare professionals working with patients who have chronic and/or long-term illnesses; 2. healthcare professionals whose role includes working with individuals to protect their future health.

In carrying out either of these roles healthcare professionals frequently have more than one option open to them. These options can differ both in how much potential benefit they would provide to the patient, and in how intrusive they are in the patient's life. Where the option that is best for the patient is also the least intrusive option, deciding what to do is relatively straightforward. But when this is not the case the healthcare professional has to navigate the line between two competing moral values. More specifically she or he must balance considerations of what is best for the patient with respecting the patient as an agent with his or her own priorities, values, and aims; as well as navigating the line between allowing the patient to manage his or her own life as he or she sees fit (respecting the patient's autonomy) and not being negligent in abandoning a patient who is potentially at risk of serious harm. How to do this is not of purely academic interest. In their professional lives healthcare professionals need to make decisions about how to deal with patients who are not complying with agreed treatment regimes, or about when to step in where a patient is not managing her own illness well. However, in contrast with other areas of medical practice (such as, surgery, medical research, fertility treatment, and palliative care) there is little in the way of practical guidance or resources to support healthcare professionals in navigating these challenges when it comes to chronic or long-term illnesses.

The research to be carried out as part of this project aims to provide the first systematic and sustained investigation into how this should be done. On the basis of this theoretical investigation it will also seek to develop tools to help healthcare professionals navigate the conflicting moral demands they face when dealing with chronic or long-term illnesses. These tools will provide the analogue to those that are currently available to help professional decision making in other areas of medical practice. They will be developed and disseminated to healthcare professionals in two main ways. First, written resources devoted to three practical issues facing healthcare professionals - what information to provide to patients with chronic illnesses, responsibilities of healthcare professionals in ensuring adherence to agreed medical treatment, and obligations to provide information about risks to future health - and aimed at those working in medical practice will be prepared. Second, the project will work with healthcare professionals to develop training resources based on these tools, and to make those resources widely available.

Publications

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Walker T (2018) Taking a Systems Approach to Chronic Illness in Old Age. in The Hastings Center report

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Walker, T. (2019) Ethics and Chronic Illness

 
Description The research funded by this grant has developed a new approach to thinking about the obligations of healthcare professionals that is specifically adapted to cases of chronic illness. This is the first framework developed for this purpose. In developing it, the research identified three reasons existing frameworks in healthcare ethics cannot simply be extended to cover what healthcare professionals should do when treating those with chronic illnesses: 1. treatment for chronic illness is often not aimed at curing the patient, but at preventing their condition deteriorating or causing additional complications in the future; 2. treatment is in many cases largely delivered by the patient or members of the patient's family; and 3. treatment takes place over an extended period of time (a period in which the patient's world does not remain static). Because existing ethics frameworks frequently treat treatment as a discrete intervention carried out by a healthcare professional, they thus have little to say about the distinctive ethical challenges healthcare professionals face when treating patients with chronic illness. For example, they have little to say about how to deal with cases where a patient is not managing their own condition well.
The framework developed by this research is centred around seeing treatment as a joint activity carried out by healthcare professionals, the patient, and members of the patient's family. In this framing patients are integral parts of the treatment team, and need to be treated with the respect owed to them as members of that team. That affects what healthcare professionals can ethically do and what they are ethically required to do. This joint activity takes place in a specific context and is aimed at minimising as far as possible the negative effects of a patient's illness on their ability to live their life on their own terms. As such, benefitting the patient and respecting them as an autonomous person (with their own life to lead) are closely intertwined. That challenges the sharp distinction between these values found in other areas of healthcare. It also challenges the extent to which respecting patients can be reduced to ensuring their informed consent is obtained before treatment. Treating a patient with respect in this context requires much more than this, and cannot be limited to respecting their autonomy. It must include respecting them as a person to whom certain things are important, but who cannot do everything by themselves. Doing that poses particular challenges when dealing with patients who have chronic illnesses, in part because such patients are often older adults and the surrounding context reflects negative stereotypes about the abilities of both older adults and those who are ill. The research thus reveals the limitations of currently widely used accounts of what healthcare professionals' moral obligations are, and proposes ways to overcome those limitations. In doing so it shows that a rethink of central ideas in healthcare ethics is needed if it is to cover all areas of healthcare, including the treatment of those with chronic illness. The full outcomes of the research are set out in a monograph 'Ethics and Chronic Illness' published by Routledge in May 2019.
Exploitation Route The framework developed in the research could be used to develop specific guidance and educational materials covering the ethical challenges that arise in dealing with features specific to different chronic illnesses - for example, on dealing with patient non-adherence, on respecting family members involved in treatment, of on treating older patients with respect. These could usefully supplement the existing ethics education of healthcare professionals. The research could also be taken forward academically by working through the implications for policy makers of the research, particularly for developing ethical policies for the treatment of chronic illness in ageing populations. That would require investigation of what the research finding mean in detail in different cultural contexts.
Sectors Healthcare