Ethics and Chronic Illness

Tom Walker

• Publisher: Routledge
• Year: 2019
• ISBN:
  9780429559884
• Edition: 1
• Topic: Philosophy
• Subtopic: Ethics & Moral Philosophy

This book provides an account of the ethics of chronic illness. Chronic illness differs from other illnesses in that it is often incurable, patients can live with it for many years, and its day-to-day management is typically carried out by the patient or members of their family. These features problematise key distinctions that underlie much existing work in medical ethics including those between beneficence and autonomy, between treatment and prevention, and between the recipient and provider of treatment.

The author carries out a detailed reappraisal of the roles of both autonomy and beneficence across the different stages of treatment for a range of chronic illnesses. A central part of the author's argument is that in the treatment of chronic illness, the patient and/or the patient's family should be seen as acting with healthcare professionals to achieve a common aim. This aspect opens up unexplored questions such as what healthcare professionals should do when patients are managing their illness poorly, the ethical implications of patients being responsible for parts of their treatment, and how to navigate sharing information with those directly involved in patient care without violating privacy or breaching confidentiality. The author addresses these challenges by engaging with philosophical work on shared commitments and joint action, responsibility and justice, and privacy and confidentiality.

The Ethics of Chronic Illness provides a new, and much needed, critical reappraisal of healthcare professionals' obligations to their patients. It will be of interests to academics working in bioethics and medical ethics, philosophers interested in the topics of autonomy, responsibility, and consent, and medical practitioners who treat patients with chronic illness.

1 The Problem

Ethics and Chronic Illness

1.1 Introduction

Suppose someone turned to either medical ethics or healthcare ethics as a way to learn what doctors, nurses, and other healthcare professionals do. What would they find? They would learn a lot about interventions at the start of life (new reproductive technologies, abortion, genetic modification), and at the end of life (assisted dying, euthanasia, palliative care). They would learn a lot about medical research. They would learn a lot about procedures to protect patients, such as those governing informed consent. They would learn about the things healthcare professionals do with information obtained from both patients and the samples taken from them—and about the challenges of protecting privacy and maintaining confidentiality when doing so. They would learn about public health policy and how to prevent illness.

That would all be very useful. But the resulting picture would be incomplete. They would find out little, if anything, about the treatment of incurable conditions that patients generally live with for months or years: things like diabetes, asthma, arthritis, Parkinson’s disease, and some cancers. They might end up unaware that much of medicine is delivered by the patient him or herself, rather than directly by a doctor or other healthcare professional. They might not notice the ways healthcare professionals support and assist those patients to treat themselves. They might end up with only a limited understanding of the work frontline healthcare professionals do in preventing illness, and in advising their patients. They might not understand that respecting patients’ privacy is not simply a matter of data protection. These are things that ethicists have not said much about.

They are, however, important in healthcare delivery. For example in England and Wales, the Department of Health reported in 2010 that patients with long term conditions accounted for over 50% of all General Practitioner appointments, over 65% of outpatient appointments, and over 70% of both inpatient bed days and the total health and social care budget (Department of Health, 2010, p. 4). This is not just a feature of high income countries. Globally, non-communicable or chronic diseases are the leading cause of death (with cardiovascular diseases, cancers, respiratory diseases [including asthma], and diabetes playing by far the largest role) (World Health Organization, 2014, p. 9). The prevalence of diabetes, for example, has increased significantly over the past three decades—up from 4.7% of adults globally in 1980 to 8.5% in 2014 (World Health Organization, 2016, p. 25). This increase has occurred in all WHO regions, and means that in 2014 an estimated 422 million adults worldwide were living with diabetes. Diabetes is not equally prevalent in all regions. But even in Africa, the WHO region with the lowest prevalence, an estimated 25 million adults were living with diabetes in 2014—a prevalence of 7.1% (up from 3.1% in 1980). This is not significantly lower than the prevalence in either Europe (7.3%) or the Americas (8.3%) (World Health Organization, 2016, p. 25). Even though not everyone with diabetes is receiving treatment, these figures indicate that around the world considerable healthcare resources are being used to do just that. The same is true for other chronic illnesses.

While the proportion of both healthcare professionals’ time and health service budgets devoted to treating those with chronic illness is already high, it can reasonably be expected to grow over the coming years. There are two reasons for this. First, in 2013 member states of the World Health Organization agreed that a set of basic technologies and medications should be available in 80% of cases by 2025. These technologies and medications include (among other things) aspirin, a statin, insulin, a steroid inhaler, a bronchodilator, and equipment to measure blood pressure, blood sugar levels, and blood cholesterol (World Health Organization, 2014, p. 105). As progress is made towards meeting this target healthcare professionals worldwide will have the resources to treat patients with chronic conditions who would currently go untreated.

Second, chronic diseases are, in most cases, more common among older adults than among those who are younger (though of course people can experience them at any age). A significant proportion (40%) of the increasing prevalence of diabetes between 1980 and 2014, for example, was directly attributable to population ageing (with another 32% attributed to interaction effects between population ageing and increasing age-specific prevalences) (World Health Organization, 2016, p. 25). Conditions such as osteoarthritis are also much more prevalent among older age groups (Martin and Buckwalter, 2002). Worldwide the population is continuing to age (World Health Organization, 2015). It is thus foreseeable that the number of people living with chronic disease, and hence with chronic illness, will increase. Furthermore, those people are also likely to live longer once they have contracted those diseases—something made possible by improved access to treatment. All of this means that while treating and caring for those with chronic illness is already an important part of healthcare provision worldwide, it will become even more significant in the future.

What then explains the mismatch between what ethicists spend their time looking at, and what healthcare professionals increasingly spend their time doing? One possible explanation is that ethicists focus on those areas of healthcare that raise challenging ethical problems, and not all areas do. There is something to be said for this. If we trace the development of healthcare ethics as a discipline, we see it responding to new technologies, contentious social issues, and ethical malpractice (Jonson, 1998). The most pressing ethical problems have arisen in particular areas and those needed to be dealt with first. But that does not explain the continuing neglect of chronic illness. Healthcare professionals treating those with these illnesses face distinctive, inherently ethical, challenges. Were they to turn to either medical ethics or healthcare ethics to help them resolve these challenges they would largely look in vain. This book aims to fill that gap.¹

1.2 What Makes Chronic Illness Different?

You might, however, wonder whether there is much of a gap to be filled. There exists a considerable body of work on the ethics of treating those whose condition is either curable or terminal. And, you might think, this work can be fairly easily adapted to cover the treatment of those with chronic illnesses. The aim of this chapter is to show that it cannot. In order to do that I need to start by saying something about what chronic illnesses are, and how they might differ from other types of illness. Doing so is not straightforward. Within the medical literature there are different accounts of what makes a disease, or an illness, chronic (for an overview see Bernell and Howard, 2016). Some of these attempt to provide a definition, others are a list of conditions that count as chronic. In this book I will be taking it that chronic illnesses share three features: 1. they are currently incurable, 2. they are not immediately life threatening when appropriate treatment is given, and 3. they are long lasting. That is, as I will be using the term chronic illnesses are ones that people live with, not those from which they are cured.² In this section I want to say a bit more about these illnesses and what can be done for those with them. This is necessarily selective. It does not, and does not attempt to, give a comprehensive account of either chronic illness or chronic disease. The aim is rather to highlight those features that will be important for the ethical analysis in the rest of the chapter.³

In thinking about both chronic disease and chronic illness it is useful to draw a distinction between the patient as an organism (a body) and the patient as a person (see Richman, 2004; Parens, 2017). To say that chronic diseases cannot be cured is to say that they involve an irreversible change in the organism that affects its functioning.⁴ In diabetes, for example, the process by which insulin moves glucose (obtained from food) out of the blood into cells where it is broken down to produce energy ceases to operate effectively. This can happen for three reasons: 1. the body’s immune system attacks the insulin producing cells in the pancreas meaning no insulin is produced (type 1 diabetes), 2. the pancreas does not produce enough insulin (type 2 diabetes), or 3. the body cannot effectively use the insulin it does produce (type 2 diabetes). In Parkinson’s disease the loss of dopamine producing nerve cells in the substantia nigra (a part of the brain) means that less dopamine is available for the parts of the brain that control movement. That, in turn, means those parts cannot operate as well as they used to. In asthma, inflammation of the tubes that carry air into and out of the lungs can cause them to temporarily narrow. When that happens breathing becomes more difficult. In osteoarthritis the cartilage lining the joints (most commonly those in the hands, spine, knees, or hips) thins and roughens. And, in rheumatoid arthritis the body’s immune system targets the joints, which over time can lead to the joint breaking down. None of these physical changes can currently be reversed. It is not possible, for example, to ‘fix’ the pancreas or replace lost cells in the substantia nigra.⁵

That it is not possible to reverse these changes in the organism, however, does not mean that nothing can be done for the patient as a person. Without treatment many chronic diseases, including asthma and diabetes, can kill. This can happen, for example, when a diabetic’s body breaks down fat to obtain energy, releasing ketones, because too much glucose remains in the blood over a long period (known as diabetic ketoacidosis). In these cases emergency interventions are needed to keep the patient alive. But treatment can also mean these life-threatening situations do not occur in the first place—for example, by keeping the diabetic patient’s blood glucose levels close to normal. So one thing that can be done for patients with chronic illness is to prevent the underlying disease killing them (or at least make it less likely that it will do so). Even where untreated chronic illness does not directly threaten a patient’s life, it can increase their chances of getting other conditions (some of which are themselves life threatening). Diabetes again provides a good example. In most cases untreated type 2 diabetes will not cause diabetic ketoacidosis. But it will increase, sometimes substantially, the risk of (among other things) heart disease, stroke, nerve damage, kidney disease, foot ulcers, sexual dysfunction, and diabetic retinopathy (damage to the retina that can lead to blindness). By keeping a patient’s blood glucose levels close to normal these increased risks can be avoided. Doing so does not mean a patient will avoid these problems, but it does prevent their diabetes making them more likely. Here again is something that can be done for at least some patients with chronic illness.

Not all chronic illnesses are life-threatening even if left untreated. Untreated osteoarthritis, for example, will not kill anyone in either the short or long term. But this does not mean nothing can be done for those with these conditions. The symptoms of chronic disease can be debilitating and interfere with the patient’s ability to live their life as they choose. Osteoarthritis is painful and makes movement difficult. Asthma causes breathlessness. Parkinson’s disease causes tremors, slow movement, and muscle stiffness. In all these cases the patient’s illness makes it harder for them to move around, perform everyday tasks, and do the things other people do—things like going to work, visiting friends and family, and living in their own home. Which things it makes harder, and how much harder it makes them, will vary depending on the type of illness and its severity. Whether we are concerned with arthritis, Parkinson’s disease, or asthma, the right treatment can (at least to some extent) prevent, alleviate, or minimise these effects. That will not cure the patient as an organism, but may well benefit them as a person. Furthermore, many chronic illnesses—including Parkinson’s disease, type 2 diabetes, and rheumatoid arthritis—are progressive, with symptoms getting worse over time. In some cases appropriate action can slow the rate of progression. While that will not benefit the patient in the short term, it may well do so in the long term. Their life in the future will not be as compromised by their illness as it would otherwise have been.

We can now see one way chronic illnesses differ from other conditions—the aims of treatment. With chronic illness the aim is not to cure the patient, nor necessarily to prolong their life. It is to prevent future illness and/or manage the patient’s symptoms. Which of these plays the biggest role, and the balance between them, will vary from case to case. For example, prevention may be the main aim when treating a patient with type 2 diabetes, whereas symptom management may be the focus where the patient has asthma. Recognising these different aims should affect how we think about two things: what it is to benefit a patient, and how prevention fits into clinical ethics. Symptom management, as we will see in more detail later, often benefits the patient by making it easier for them to live their life despite being ill. That is, treatment benefits the patient by enhancing their autonomy (on some accounts of autonomy). Linking benefits and autonomy in this way, however, may seem problematic—particularly given the prevalence of accounts, such as the four principles approach, that categorise these as independent and distinct values (Beauchamp and Childress, 2009; Gillon, 2003). In healthcare ethics, accounts of the benefit of treatment have also tended to focus on the short term, rather than on the long term, benefits of preventing future ill health. Discussion of ethics and prevention has to date largely been the preserve of public health ethics (with its focus on healthcare policy). But where treatment is prevention a different approach is needed. To date that is not something that ethicists have provided.

If its aims distinguish the treatment of chronic illness, so too does the way it is delivered. While the details vary considerably, in many cases regular (often daily) action is needed over a long period. Much of this action is performed, not by a healthcare professional, but by either the patient or members of the patient’s family. A couple of examples will help to illustrate this point. As we have seen treatment for diabetes aims to keep blood glucose levels close to normal. What that requires varies with the type of diabetes, and (in the case of type 2 diabetes) its severity. The amount of glucose in a patient’s blood is affected by what they eat and how much exercise they take. For this reason controlling diet (reducing the amount of fat and sugar, increasing the amount of fibre) and exercise have an important role to play in managing diabetes. For some patients with type 2 diabetes they are all that is needed. Where they are not, medication will also be required. While diet and exercise are also important for patients with type 1 diabetes, they also require insulin—delivered either by daily injections or by a pump that allows insulin to flow continuously into the bloodstream. All this requires action and monitoring on a day by day basis. For practical reasons that has to be done by either the patient or members of their family. That does not mean there is no role for healthcare professionals. Both insulin and the medications used to control type 2 diabetes are typically prescription only, and so must be supplied by them. Typically they will also both carry out regular blood tests to monitor how stably blood glucose levels are being maintained, and provide advice and support for patients who are managing their own condition. Finally, they have an important role when things go wrong. If the patient has diabetic ketoacidosis, they will usually need hospital treatment. Where blood glucose levels fall too low (hypoglycaemia) because too much insulin has been injected, immediate action is also needed. While in this case the necessary action will normally be performed by the patient or those close to them (such as family and friends), explaining what to do when this happens is part of the healthcare professional’s’ role.

As with diabetes the treatment of asthma involves coordinated action by healthcare professionals and patients. And, also as with diabetes, what is required will vary depending on the details of the case, including the severity of the condition. Treatments for asthma aim at either relieving or preventing symptoms (or both). While short-acting reliever inhalers as the name suggests relieve symptoms at the time they occur, prevention requires a different response. The symptoms of asthma, such as breathlessness, are often experienced in response to triggers (things like fur, pollen, cigarette smoke, and sudden changes in the weather). Where a patient’s triggers can be identified, avoiding them can help prevent these symptoms. But that is not always possible, and where it is possible it is not always sufficient (even when combined with the use of a short-acting reliever inhaler). In these cases a different type of inhaler, a preventer inhaler or combined preventer and long-acting reliever inhaler, may be needed. Avoiding triggers and using the inhaler are things the patient must do themselves, though the inhalers must be provided by healthcare professionals. For some patients even these methods are not enough. As such, other forms of treatment are needed. Depending on the details these may involve the patient taking tablets every day, being given injections every few weeks, or in a few cases having an operation (bronchial thermoplasty—where some of the muscles around the airways are intentionally damaged by inserting a tube, which is then heated, into the lungs via the mouth or nose).

This brief overview of treatments for two different conditions highlights that treating chronic illness requires a variety of approaches (and we might have seen even more if we had looked at other conditions—for example, physiotherapy is sometimes part of the treatment for Parkinson’s disease and rheumatoid arthritis). Some of these—taking blood samples and performing operations—are familiar within both medical and healthcare ethics. Others—enabling and supporting the patient to treat him or herself—are not. It should be possible to slot the former into existing ethics frameworks without too much difficulty. But what about the latter? Can they also be incorporated into those frameworks? As John Harris has pointed out we should not assume that what we say about one type of treatment can be extended to cover other types of treatment (Harris, 1985, p. 63). Furthermore do these different types of treatment even raise any ethically interesting or challenging questions? It is to these questions that we must now turn.

1.3 The Importance of ‘When?’

So far I have merely described some features of chronic illnesses. While that was important it does not in itself show there is a gap in the ethics literature. Doing that requires more direct engagement with that literature. For that reason I want to start by looking at a topic that is very familiar in healthcare ethics—consent (or as it is more normally called, ‘informed consent’). However I want to approach it from a somewhat unusual angle. My reason for doing so is to highlight some of the problems that occur when we take tools developed to deal with ethical challenges arising in the treatment of acute conditions (where consent is of great importance) and apply them to other areas of healthcare. Doing this will reveal that specific ethical questions and challenges arise when treating patients with chronic illness—ones that can be hard to see with more conventional approaches. It is useful to begin by noting that all medical treatment, whethe...

Table of contents

• Cover
• Half Title
• Series
• Title
• Copyright
• Contents
• Preface
• 1 The Problem: Ethics and Chronic Illness
• 2 Working Out What Will Benefit Patients
• 3 Is an Informed Patient’s Choice Good Evidence That the Option Chosen Is What Is Best for Him?
• 4 ‘It should be up to the patient what happens to her’
• 5 Consent and the Treatment of Chronic Illness
• 6 How to Respond to Non-Adherence
• 7 Broadening Our Vision: The Role of Families and Others
• 8 Changes Over Time
• 9 Conclusion
• References
• Index