Patient-Perspective Care

A New Paradigm for Health Systems and Services

Timothy A. Carey

• Publisher: Routledge
• Year: 2017
• eBook ISBN: 9781351227964
• Topic: Psychology
• Subtopic: Mental Health in Psychology
• Index: Psychology

Inappropriate health care is an escalating and expensive problem. It affects high income, middle income, and low income countries and wastes billions of dollars annually as well as harming individuals and communities. Inappropriate care refers to both the overuse and underuse of tests and treatments and, ironically, can occur concurrently within the same health system. Even though patient-centred care is still the prevailing ethos, specifying where patients should be situated geographically has not required health professionals to consider the preferences, values, and priorities of patients when making treatment decisions.

Patient-perspective care demands that the decisions health professionals make are in the service of patient's goals. Health care, ultimately, is helping individuals to live the lives they would wish for themselves. In order to meet this imperative, health professionals must work towards understanding what their patients would like to achieve through their engagement with health services. This book details the extent and scope of inappropriate care and how we have arrived in this position. The necessity for patient-perspective care is outlined and provides a theoretical framework that explains why patient-perspective care is so critical. The implications of this theory are then explored and specific strategies for moving towards a patient-perspective approach are discussed.

This book is entirely original and describes a novel, fresh approach to delivering health services. Many long-standing and expensive problems such as missed appointments will disappear and patients will be more satisfied with the treatments they receive. Health services generally will be more efficient and effective leading to more sustainable and affordable health care.

1

Our global health crisis

Globally, our health systems are in an enduring and escalating crisis. The inefficiencies in our systems, brought about by the provision of inappropriate care, are devouring enormous amounts of financial resources. In some ways, we are the victims of our own successes. While modern medical care has yielded many remarkable achievements and progressed the health of populations around the world, this improvement in health has brought with it an increase in health care spending (Saini, Brownlee, Elshaug, Glasziou, and Heath, 2017). A challenge that is genuinely international is the development and delivery of better value health care – how can health care systems provide improved health per dollar spent (Saini, Brownlee et al., 2017)?

The pervasiveness and cost of inappropriate care

Inappropriate care is a long-standing and pervasive phenomenon (Saini, Brownlee et al., 2017). A paradox that has been relatively neglected can now be identified which affects high-, middle-, and low-income countries. This seemingly contradictory conundrum is the failure to deliver needed services in conjunction with the continued provision of unnecessary services (Saini, Brownlee et al., 2017). In 1998, Chassin and Galvin described the underuse, overuse, or misuse of treatments as a serious and widespread problem in the United States of America (USA) with many people being harmed as a result. Based on conservative estimates, the overall financial waste in USA health care was estimated to be $558 billion in 2011 (Berwick and Hackbarth, 2012), and in 2013, at least $270 billion was spent just on health care that could be defined as overuse (Brownlee et al., 2017). The overuse of medical services is not limited to the USA. According to Brownlee et al. (2017, p. 8), “There is strong evidence for the widespread overuse of several specific medical services in many countries, suggesting that overuse is common around the world and might be increasing”. In both high-income countries as well as middle- and low-income countries, simple and inexpensive interventions are underused, while interventions that are “ineffective but familiar, lucrative, or otherwise convenient services, despite potential patient harms” are overused (Saini, Brownlee et al., 2017, p. 1).

Defining important terms

Chassin and Galvin (1998) provided definitions for the terms “overuse”, “underuse”, and “misuse”. Overuse arises in situations when the potential for harm of providing a health care service exceeds the benefit. Prescribing antibiotics for viral infections or prescribing antidepressants for mild depression could be considered examples of overuse. Underuse is the situation when a health care service fails to be provided when it would have produced a favourable outcome. An uncompleted childhood immunisation protocol is an instance of underuse. Misuse refers to situations when a preventable mishap occurs in an otherwise appropriate service, resulting in the patient not experiencing the full benefit of the service. Avoidable surgery complications or a patient developing a rash after receiving penicillin despite a known allergy to the drug are examples of misuse.

The grey zone

While it is useful to have clear definitions of terms, the direct application of Chassin’s and Galvin’s (1998) definitions is complicated by what has been described as an ambiguous grey zone in health care (Brownlee et al., 2017). For most health services, the probability of benefit or harm is uncertain for any individual (Saini, Brownlee, et al., 2017) and is influenced both by the characteristics and capacities of the individual, as well as environmental contexts within which the individual functions. Patients, therefore, differ in the extent to which they assess their various treatment options as well as the trade-offs that may be required for the chosen treatment (Blank, Graves, Sepucha, and Llyewellyn-Thomas, 2006).

Given these definitional difficulties, direct measurement of appropriate and inappropriate care is less than straightforward. Even within the context of these measurement considerations, however, in high-income countries, across a wide range of services, the high prevalence of overuse is well documented (Brownlee et al., 2017). Furthermore, overuse is detected at increasing rates in low-income countries. The harms of overuse to both the individual and the health system cannot be overstated. Patients can be harmed physically as well as psychologically, and health systems can be harmed through the waste of resources and the diversion of investments in both public health and social spending (Brownlee et al., 2017). While the severity of overuse should not be underestimated, underuse is also associated with serious problems when patients and populations are left in a vulnerable position with respect to avoidable disease and suffering (Saini, Brownlee et al., 2017).

No doubt numerous factors contribute to the existence of the grey zone. Whatever the factors are that led to its manifestation, however, it is the outcomes within the grey zone that are so problematic for the provision of appropriate care. There can be tremendous variability across patients in the amount of benefit extracted from many interventions. The balance between benefits and harms, for example, varies substantially for adolescents who are prescribed antidepressant medication (Brownlee et al., 2017). Compounding the problem is the fact that some interventions, such as glucosamine for osteoarthritis of the knee, can be popular despite offering little benefit to most patients (Brownlee et al., 2017). Finally, services that are backed by scant evidence – many screening tests may fit this category – offer little guidance as to which patients might benefit and by how much (Brownlee et al., 2017).

It is perhaps the ambiguity inherent in the grey zone that makes patient values and preferences so critical for determining appropriate care in many situations (Brownlee et al., 2017). In fact, it is hard to imagine how care could be judged to be appropriate or otherwise without regard to a patient’s preferences, values, and attitudes. The fact that inappropriate care is so widespread strongly suggests that patient values and preferences are not as central to health care service provision as they should be. Engineering the ways in which patient preferences can be brought to centre stage in the context of health care service provision may well be the most pressing problem currently facing health systems. Saini, Brownlee et al. (2017) maintain that a crucial pathway to authentic health care affordability is being able to define the right care as well as understanding the forces that work against it. Failure to navigate this pathway “will leave universal access to high-quality, cost-effective, and compassionate care an ever-receding mirage” (Saini, Brownlee et al., 2017, p. 1).

What defines appropriate care?

The primacy of the patient’s perspective is inescapable when concepts such as “appropriate care”, “inappropriate care”, and “right care” are discussed. Yet even within these discussions, it is possible to gain some sense of the gargantuan chasm that must be spanned to legitimately claim that patient perspectives are being acknowledged, identified, and honoured. The terms “overuse”, “underuse”, and “misuse”, for example, are construed from the perspective of the service provider, not the service consumer. That is, what is currently being considered is the way in which health professionals over- or undertreat, not necessarily the extent to which the services are being over- or underused by patients. This is not a trivial issue. The extent to which patients follow medication protocols as prescribed by their treating physicians can range from 0% to 100% with an average of approximately 50% (Nieuwlaat et al., 2014). When rates of medication in a population are being discussed, therefore, it is extremely important to be clear about whether one is referring to medication prescribing or medication consumption because these are not the same thing (Carey and Salter, 2017).

Accepting the centrality of patients’ preferences and values also has implications for the concept of the grey zone which has just been discussed. The concept of the grey zone is presented in terms of a continuum of the net effect of services with clearly ineffective services at one end and clearly effective services at the other (Brownlee et al., 2017). The grey zone lies in between these two extremes. A service, however, is an inert procedure or substance. It is the interaction between the service and the patient which creates an outcome that lies on the continuum from clearly ineffective to clearly effective. Brownlee et al. (2017, p. 1) hint at the importance of this interaction when they define effective services as “tests and treatments that are universally beneficial when used on the appropriate patient” [emphasis added]. So a test or treatment is not universally beneficial per se. Beneficial tests or treatments are beneficial when used on the appropriate patient. Gotzsche (2013) points out that drugs always cause harm and that, for all drugs, it is essential to find the dose that causes more good than harm for most patients.

The continuum proposed by Brownlee et al. (2017), therefore, is, ultimately a continuum of the interaction between procedures and products and the patients who use them. Even the notion of an effective or ineffective service cannot be divorced from the patient’s preferences and values. The patient, for example, is the best judge of whether a subjective effect of a drug outweighs its side effects (Gotzsche, 2015). An antidepressant may improve a patient’s mood, but if it also introduces akathisia and weight gain, this may not be deemed an effective treatment by the patient. Unfortunately, too often, it can be the case that the patients’ complaints about side effects are ignored, and they are compelled to continue taking medications that they find unpleasant (Gotzsche, 2015).

The patient’s perspective, therefore, is pivotal to the provision of appropriate care or the right health care. There is a great deal more that can be done, however, to position the patient’s perspective as the driving force in health care. The remainder of this book advances the idea of patient-perspective care as a paradigm shift in health care generally and mental health specifically. Currently, “patient-centred” care is the dominant manifesto in health service provision, yet patient-centred care has strayed from its initial position and, ironically, has failed to place patient priorities as the centrepiece of decision making in health.

In the chapters ahead …

In the next chapter, I will explain a little more closely some of the factors that might have been responsible for getting us to where we are at the moment. Then I will present some of the evidence, both implicit and explicit, in the literature, that demonstrates the failure of the patient-centred approach – or at least our failure to fully embrace its original intent. Showing that the patient-centred approach has failed is not enough, necessarily, to justify changing to a patient-perspective paradigm, so in Chapter 4, I will spend some more time demonstrating the importance of the perspective of the patient. Any new initiative should be informed by robust theoretical principles. Perhaps the lack of a solid theoretical foundation is one of the reasons that the patient-centred approach has failed as completely as it has. I will outline Perceptual Control Theory (PCT) as a compelling justification for the necessity of the patient-perspective movement. Much of our current literature is occupied by debates and quibbles about issues such as objectivity, subjectivity, and the nature of reality. The position of PCT is that we are living subjectively in an objective, physical world. From this theoretical basis, I will outline in general terms some of the practical implications for a patient-perspective attitude to health care. Next I will describe a specific example of the redesign of one aspect of health care service provision according to patient-perspective ideals. The impact of this new way of working on waiting times, missed appointments, and referral capacity is discussed. A book about a patient-perspective approach to health care would be incomplete without including actual patients’ perspectives, so Chapter 8 provides the experiences of some people in their roles as patients or consumers of health services. The final chapter considers the kinds of changes in education and training, policy development, and public education initiatives that will be required for the patient-perspective paradigm to pervasively penetrate health systems and services.

The patient-perspective approach is an opportunity for health care provision generally, although my background is in clinical psychology, so at times, the examples and illustrations may have a strong mental health flavour. More than anything, however, it is the principles of patient-perspective care that are important rather than the particular ways this mindset might manifest in any specific health care context. The final blueprint for how a patient-perspective approach will be realised in all health settings is far from established. Perhaps, as you read through these pages, you will develop your own strategies about the most ideal way of applying these principles in the health setting within which you work. I’ll look forward to hearing about your progress in adopting this attitude to the fundamentally important task of helping people achieve their ideal health and well-being.

References

Berwick, D. M., & Hackbarth, A. D. (2012). Eliminating waste in US health care. JAMA, 307, 1513–1516.

Blank, T., Graves, K., Sepucha, K., & Llewellyn-Thomas, H. (2006). Understanding treatment decision making: Contexts, commonalities, complexities, and challenges. Annals of Behavioral Medicine, 32, 211–217.

Brownlee, S., Chalkidou, K., Doust, J., Elshaug, A. G., Glasziou, P., Heath, I., … Korenstein, D. (2017). Evidence for overuse of medical services around the world. Lancet, Published online 8 January. http://dx.doi.org/10.1016/S0140-6736(16)32585-5

Carey, T. A., & Salter, A. (2017). Links between antidepressants and suicide and homicide: Commentary on Bouvy and Liem (2012). Ethical Human Psychology and Psychiatry, 18(3), 258–262.

Chassin, M. R., & Galvin, R. W. (1998). The urgent need to improve health care quality. Institute of Medicine National Roundtable on Health Care Quality. JAMA, 280, 1000–1005.

Gotzsche, P. (2013). Deadly medicines and organised crime: How big pharma has corrupted healthcare. London: Radcliffe Publishing.

Gotzsche, P. (2015). Deadly psychiatry and organised denial. Copenhagen: People’s Press.

Nieuwlaat, R., Wilczynski, N., Navarro, T., Hobson, N., Jeffery, R., … Haynes, R. B. (2014). Interventions for enhancing medication adherence. Cochrane Database of Systematic Reviews, Issue 11 (Art. No.: CD000011). doi:10.1002/14651858.CD000011.pub4

Saini, V., Brownlee, S., Elshaug, A. G., Glasziou, P., & Heath, I. (2017). Addressing overuse and underuse around the world. Lancet, Published online 8 January. http://dx.doi.org/10.1016/S0140-6736(16)32573-9

2

How have we arrived at this position?

It is useful to spend time considering some of the factors that may have steered us to the current situation in which inappropriate health care is commonplace instead of being a rare phenomenon. Understanding these forces might help to ensure that similar mistakes are not repeated when attempts are made to correct the problem. There has undoubtedly been a multiplicity of contributing influences, but one factor in particular that has profoundly affected our beliefs and practices has been our allegiance to Western biomedical science. The conceptualisation of disease as the disruption of biological variables or the deviation of these variables away from the specified “normal” state has led to a myriad of startling successes such as antibiotics, vaccines, and organ transplantation. We are living in an age of unprecedented cleverness when procedures that people would have been considered foolhardy to even dream of a few decades ago are now routine.

The downside to the biomedical model

Our ingenuity, however, has come at a price. In many ways, the scientific enterprise has come to be cherished above all else with a consequent preponderance of reductionist thinking and the lure of the commercial imperatives...

Table of contents

• Cover
• Title
• Copyright
• Dedication
• Contents
• List of Tables
• Preface
• 1 Our global health crisis
• 2 How have we arrived at this position?
• 3 Why has the concept of patient-centred care failed?
• 4 The importance of the patient’s perspective
• 5 The theoretical underpinnings of patient-perspective care
• 6 What patient-perspective care means in practice
• 7 Patient-led appointment scheduling: a practical example of patient-perspective care
• 8 Patients’ perspectives
• 9 Where to from here?
• Index