Research paper
The development of a model of dignity in illness based on qualitative interviews with seriously ill patients

https://doi.org/10.1016/j.ijnurstu.2012.12.014Get rights and content

Abstract

Background

While knowledge on factors affecting personal dignity of patients nearing death is quite substantial, far less is known about how patients living with a serious disease understand dignity.

Objective

To develop a conceptual model of dignity that illuminates the process by which serious illness can undermine patients’ dignity, and that is applicable to a wide patient population.

Participants

34 patients with either cancer, early stage dementia, or a severe chronic illness were selected from an extensive cohort study into advance directives.

Method

In-depth interviews were carried out exploring the experiences of seriously ill patients with regard to their personal dignity. The interview transcripts were analyzed using thematic analysis and a conceptual model was constructed based on the resulting themes.

Results

We developed a two-step dignity model of illness. According to this model, illness related conditions do not affect patients’ dignity directly but indirectly by affecting the way patients perceive themselves. We identified three components shaping self-perception: (a) the individual self: the subjective experiences and internally held qualities of the patient; (b) the relational self: the self within reciprocal interaction with others; and, (c) the societal self: the self as a social object in the eyes of others.

Conclusions

The merits of the model are two-folded. First, it offers an organizing framework for further research into patients’ dignity. Secondly, the model can serve to facilitate care for seriously ill patients in practice by providing insight into illness and dignity at the level of the individual patient where intervention can be effectively targeted.

Introduction

During recent decades, medical advancements have taken flight, resulting in numerous forms of life-prolonging intervention and treatment. One of the potential side-effects of this medical progress is that patients with serious illnesses tend to live longer, often in ill-health, and are frequently confronted with the harsh reality of physical deterioration of the body, loss of functional ability and dependency on others. These illness-related conditions may give rise to existential distress and loss of personal dignity (Jacobson, 2007, Nordenfelt, 2004). Patients whose personal dignity has been shattered, frequently feel that they are no longer of any value and that their lives have become meaningless (Chochinov et al., 2002) or even unbearable, sometimes resulting in the desire to terminate life prematurely (Ganzini et al., 2007, Georges et al., 2006, Jansen-van der Weide et al., 2005). It is not surprising that in forms of healthcare focused on a holistic sense of wellbeing and aimed at avoiding either the hastening or the postponing of death, preservation of dignity until the end of life has become a major concern (Griffin-Heslin, 2005, Jacelon et al., 2004).

Research on patients’ sense of dignity has primarily focused on the end-of-life stage, investigating how terminal patients in the last months of life understand dignity (e.g. Duarte Enes, 2003, Hack et al., 2004). Based on the experiences of terminal cancer patients, Chochinov et al. (2002) have developed a “Dignity Conserving Model” in which themes affecting the sense of dignity of terminal patients are specified. The model serves as a basis for “dignity therapy”, aimed at enhancing or restoring the sense of dignity in patients nearing death and helping them to achieve closure (Chochinov et al., 2005).

While both dignity conserving care at the end of life and death with dignity are of major importance, living life with dignity from the diagnosis of a serious, chronic illness onward is worthy of attention as well. Receiving the diagnosis of a serious illness is a pivotal experience for most people, one that turns normal life upside down, causing a fundamental shift from being a healthy individual to being a ‘patient’. During the journey through the illness trajectory, concerns about personal dignity may well arise.

The scarce knowledge on how patients perceive dignity comes from a small number of studies among older nursing home residents whose measure of dignity may be at risk due to their dependency on others, their fragile condition, and/or illness (e.g. Gallagher et al., 2008, Hall et al., 2009, Pleschberger, 2007). In addition, a number of Scandinavian studies have investigated how chronic illnesses such as multiple sclerosis and fibromyalgia, characterized by invisible symptoms such as fatigue and pain, have a bearing on the sense of dignity of those affected (Lohne et al., 2010, Slettebø et al., 2009, Söderberg et al., 1999). The knowledge accumulated thus far is rather fragmented and differing terminologies are used.

The aim of our study was to develop a conceptual model of dignity, applicable to a wide patient population, that illuminates the process by which serious illness can undermine the patient's sense of dignity throughout the illness trajectory, from diagnosis onward. To this end, we conducted in-depth interviews with a population of patients suffering from serious illness that was diverse both in terms of type of illness and stage of illness.

Section snippets

Context of recruitment for the qualitative study

The seriously ill patients participating in the qualitative study on dignity were recruited from an extensive cohort study into the practices of advance directives (ADs) in the Netherlands (Van Wijmen et al., 2010). An AD is a written statement that reflects the individual's wishes regarding end-of-life care and medical treatment, formulated in advance in anticipation of a future situation in which the individual will no longer be capable of making his or her wishes known. A cohort of 6824

The model

The “model of dignity in illness” illuminates how serious illness may affect the sense of personal dignity of patients. First, we will explain the workings of this model. Subsequently, the themes within the model will be illustrated by quotes from the interviews.

Discussion

In this article, a conceptual model of dignity in seriously ill patients has been presented. The model is based on the empirical findings derived from qualitative in-depth interviews among a diverse patient population – in terms of both the type and stage of illness. The model clarifies the relationship between serious illness and the patient's sense of dignity, tracing the various routes from illness to the effects this has on the sense of dignity and highlighting the ways in which serious

Limitations of this study

The model developed here is a preliminary one and requires further testing. Due to the limited size of the sample studied, certain factors (for example, the patients’ family situation or their socio-economic background) were not taken into account. Furthermore, our research sample consisted of individuals who had signed an advance directive. Whether patients who have not signed an advance directive understand and experience dignity in the same way, and whether the findings of our study hold

Conclusion

Thus far, attention has been primarily given to preserving the dignity of the terminally ill during the final stages of life. However, from diagnose onward, patients undergo tremendous changes to their bodies, minds and their personal and social worlds. Patients must adjust again and again throughout their illness and often feel vulnerable and anxious about what else their illness will bring and, ultimately, about death. High-quality, sensitive professional care and guidance are essential

Conflict of interest

The authors disclose no conflict of interest.

Funding

The authors disclosed receipt of the following financial support for the research: this study is supported by a career award for Bregje Onwuteaka-Philipsen of the Netherlands Organization for Scientific Research (NWO, the Hague; VICI 916.96.628) and is further funded by the Pieter van Foreeststichting, the NVVE, and NPV.

Ethical approval

The Medical Ethics Committee of the VU University Medical Center approved the study.

Acknowledgments

We thank J.G. for conducting some of the patient interviews and for her input with regard to the interview material.

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