Self Management
Chronic condition self-management: Expectations of responsibility

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Abstract

Objective

While self-management may be beneficial for many patients it assumes and encourages a particular conception of responsibility and self-management that may not fit with all patients’ experience of their chronic conditions and their management. It therefore warrants further examination.

Methods

We examine the concept of self-management and responsibility from a range of standpoints, focusing on the Australian context.

Results

Attempts to meet people's needs run the risk of imposing specific conceptions of how people should live their lives. While self-management appears to be consistent with placing patients’ needs, values and priorities at the heart of healthcare, ill-defined assumptions about responsibility may confound these goals.

Conclusions

Reflection on social determinants of health, the context in which patients seek self-management support from health services, and how their needs and preferences are listened to by health professionals, is critical for the collaborative self-management partnership between them to be effectively realized.

Practice implications

Providing services without reflecting on the meaning of self-management for the person with chronic conditions creates unintended assumptions about responsibility, engagement and care provision which may serve to alienate and further stigmatise some patients. Often, these are the very patients with complex needs who need such service support the most.

Introduction

“There is not just one good human life, but many. Who is to say what humans need to accomplish all the finest purposes they can set for themselves?” Ignatieff p. 11 [1].

Michael Ignatieff describes the difficulty of accommodating and reconciling the multitude of ways in which people live their lives with support from the State. All attempts to meet people's needs run the risk of imposing, even in subtle ways, specific conceptions of how it is that people should live their lives. This tension is important for ethics and politics and raises issues for those involved in providing services.

While this tension is important in all areas of life where the State attempts to meet the needs of its citizens, it is particularly so in healthcare. Failure to meet healthcare needs can have significant consequences, but attempts to meet needs that are overtly or subtly prescriptive can have the effect of excluding or alienating some people. Further tensions and unintended consequences often lie at the heart of how health services are structured and delivered.

In this paper we argue that self-management assumes and encourages a particular conception of what a ‘self-managing’ patient is. While this conception is the one that appears to be consistent with placing patient's needs, values and priorities at the heart of healthcare and is a concept that will be appropriate for many patients, it might be more problematic for those who do not wish to or cannot exercise the same degree of control over their care. This may be particularly so, for example, for people with significant disabilities or people with mental illness subject to legally imposed treatment orders.

The concept of the ‘self-managing’ patient does not account for patients engaging in the process of learning to become ‘good self-managers’. Patients are at risk of getting caught up in systems and service-driven processes that do not always acknowledge the skills patients bring to the encounter [2], [3]. The service-driven processes do not necessarily facilitate understanding or listening to patients’ needs, nor do they necessarily value preferences and identification of the problems or solutions from the patient's perspective. The term self-management assumes and encourages a particular definition, but the truth is that self-management of a chronic condition goes with the territory. How someone defines that, how they feel about it, what they do about it, how health systems and healthcare professionals support them is another matter entirely.

The expectation that patients should become ‘effective self-managers’ is the central issue of this paper. We do not, by considering this issue, intend to undermine self-management; instead our hope is to alert practitioners to some of the subtleties and assumptions that it embodies. We base our stance on the belief that respect for patient choice is central to encounters with services and that we need to work towards structuring services so that this is facilitated. We also base our stance on the belief that, through reflective practice, the underlying ethical and value base for our practice and those of the systems in which we work, are better understood so patient-centred care is more likely to be realized.

Section snippets

Discussion. Self-management

According to the World Health Organisation, self-management is a process that individuals engage in. It exists within a collaborative system of care involving a range of professionals in partnership with patients [4], [5]. Self-management support is a collection of healthcare services’ attempts to enable those, particularly with chronic conditions, to take greater control of their own care. Self-management attempts to articulate and shift some of the decision-making focus to the patient. This

Patient-centred care

Within the Australian context, encouraging and facilitating patients to take control of and manage their illnesses is seen to be a significant step towards patient-centred healthcare [6]. Rogers et al. define patient-centred care as “responsiveness to patient needs and preferences, using the patient's knowledge to guide actively the interaction and information giving, and shared decision-making” (p. 226) [7]. When patients are genuinely involved in the management of their condition this usually

Health worker–patient relationship

The evidence-based medicine movement is one example where the tension between objective and subjective language within the patient/worker encounter is yet to be resolved. Taylor describes the tension as, “the conflict between the subjective, undifferentiated experience of the patient and the need of the doctor to objectify, code and structure this information”(p. 152) [8]. Within such tensions, the patient's account is often medicalised and their expert experience of living with their health

Responsibility: knowledge and control

One way to unpack what is involved in ‘taking responsibility’ is to think about cases where we excuse someone of responsibility. When people are made to do things or when they do not know what it is that they are doing we are likely to excuse them or not hold them responsible for good or bad effects [10], [11]. So if someone was compelled to live in housing that lacked an adequate water supply because they had no other option, then they should not be held responsible if they or their family

Not being responsible

The literature on self-management paints all patients as wanting a better understanding of their condition but is this actually the case? Do patients have the right to choose to not understand their condition and what would exercising that right imply about them as a person in a context where ‘self-management support’ is offered?

In other medical contexts, for example when giving consent to surgery, it is not unknown for patients to say that do not want to know the details of, or options for

Structural control

McKnight [20] talks of the manufacture of needs in order to rationalize the service economy and the layers of professional bodies embedded within it. Within such a system, individualized need is separated out from its social context and the person becomes ‘the problem’ (p. 113). A process of ‘effective clienthood’ develops involving a process of assuming that people need professional input to define and solve their problems (p. 115). Within the self-management area, the health professional and

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