Psychological responses of terminally ill patients who are experiencing suffering: A qualitative study

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Abstract

Background

Suffering is not only characterized by the feeling of being threatened, but also by the feeling of impotence to deal with such a threat. Literature identifies a terminal illness as a period during which several experiences implying an intense suffering are endured, but little attention has been paid to the psychological responses when reacting to threats.

Objective

Identify the psychological responses that terminally ill patients put in place to face up to the demands of the end of life, as a foundation for future nursing interventions.

Design

Qualitative methodology with an interpretative phenomenological approach.

Settings

Different hospitals health centers around the region of Granada (Spain).

Participants

Twenty-four participants were finally chosen to take part in the research. The sampling procedure was intentional, and it was made taking into account exclusion and inclusion criteria. Patients with a cognitive impairment, who had been diagnosed with psychiatric alterations, who at that time suffered from uncontrollable symptoms such as intense pain were excluded from the sample.

Methods

The patients were interviewed following a script (semistructured interview) carried out using the suggested theoretical framework. The interviews were analyzed using the sequence suggested by Strauss and Corbin: Open, axial and selective codification.

Results

The analysis of the participants’ answers to the different questions of the semi-structured interview has allowed us to identify a main category “To realize that life is short”. There are three categories where the different ways of facing up to the end of life concentrate: “Re-Evaluation of life”, “Opportunity for growth”, “Resignation/Acceptance”.

Conclusions

Nurses, have to try to alleviate the impact the terminal illness has on the subject, not only by controlling the symptoms but also encouraging the patients responses, by promoting the feeling of satisfaction in life, providing honest and sensitive information, establishing with the patient realistic goals, and facilitating a quality communication between patients and their family.

Introduction

Almost three decades ago, Cassell wrote his famous article, “The nature of suffering and the goals of Medicine” (Cassel, 1982). This document confronted the practice of “depersonalised” medicine, i.e., the concept that although medicine was using increasingly sophisticated diagnostic and therapeutic resources to fight against death, it had lost its true priority: the relief of suffering (García Gañán, 2003). Most diseases involve suffering. However, the medical model, which is powerful against factors that may be located, identified and addressed, is powerless against suffering, which has no physical location (Frank, 2001).

Suffering is a multidimensional experience that is deeply rooted in the general human experience and the occurrence of becoming ill in particular. Suffering affects the whole person and not just the physical body (Cassel, 1982).

Nursing, as a profession involved in the comprehensive care of people, plays a critical role in caring for those who suffer. The relief of suffering is the core purpose of the nursing profession (Ferrell and Coyle, 2008). In the words of Kahn and Steeves (1994), “It is crucial that we can speak freely of what we know, including what we know about suffering” (p. 260). However, one can ask, what do we know about suffering?

Cassel (1982)originally defined suffering as a state of severe stress associated with events that the person judges to be threatening. This definition implies that under similar circumstances, not everyone suffers in the same manner and that suffering depends on the individual's judgment or evaluation. As Kahn and Steeves (1994) summarised, suffering is, fundamentally, an evaluation of the meaning or the sense that these experiences possess.

Several year later, Chapman and Gavrin (1993) expanded this definition by adding that suffering is characterised not only by the sense of feeling threatened but also by the feeling of helplessness in dealing with this threat as well as the depletion of personal and psychosocial resources. In other words, the perception involves a type of balance between the feeling of being threatened and the feeling of helplessness against the threat.

However, Gavrin and Chapman (1995) did not specify what meant when they spoke of resources or the differences between psychosocial and personal resources. They allude in general to any type of resources, whether material, social or emotional. Thus, this lack of distinction fails to explain why different subjects who are facing the same threats, with apparently the same material and social resources at their disposal, either exhibit or do not exhibit suffering.

The subjective nature of suffering means that the response against it depends, on one hand, on the threat assessments or judgments made by the person, and on the other hand, on the person's own ability to deal with these threats (Bayés, 2000), i.e., the power to mobilise valid psychological responses when reacting to threats. These responses allow the individual to cope with the experiences that generate suffering.

Previously published reports have identified the occurrence of a terminal disease as a period of multiple threats that can generate intense suffering. Examples of such suffering include pain and other symptoms (Heath et al., 2010, Jurado-Martín et al., 2010, Abraham et al., 2006, Lorenz et al., 2006), the progressive dependence associated with the evolution of the disease (Chio et al., 2008, Blinderman and Cherny, 2005, Daneault et al., 2004), uncertainty regarding the future (The et al., 2001, Clark, 2002), being a “burden” to others (Chochinov et al., 2007, McPherson et al., 2007) and outstanding issues that the patient has left unfinished (Ando et al., 2008, Williams, 2004).

However, the psychological responses that are mobilised by terminally ill patients to confront the difficult demands posed by the approaching end of life have received relatively little attention despite the possibility that these responses can be tools of great value to practitioners.

The recognition of the elements (e.g., ideas, beliefs, feelings, explanations, attributions of meaning and activity) that allow these types of patients to reduce or relieve their perceived threats and that function as personal responses to suffering would facilitate a better understanding of the patients’ experience of suffering.

Some authors have claimed that patients who suffer from a serious illness (or one with a poor prognosis) respond by experiencing a personal transformation regarding their way of viewing life and human relationships (Chio et al., 2008, Arman et al., 2002, Arman and Rehnsfeldt, 2003, Nissim, 2008). This transformation is closely related to the manner in which the individual confronts and integrates (physical and psychosocial) losses (Nissim, 2008, Rydahl-Hansen, 2005). The meaning given to both the individual's own losses as well as the disease itself is also relevant, as is a consideration of the phase of the life cycle that the patient is passing through (Daneault et al., 2004, Williams, 2004). In addition, other authors have given special importance to maintaining hope for the future even when a cure is not possible (Rydahl-Hansen, 2005, Clayton et al., 2005).

Starting with a model of suffering that has been proposed and revised within a theoretical framework, a semi-structured interview has been designed with the goal of identifying those elements of the experiences with which terminally ill individuals respond to threats associated with the end of life. As a secondary objective, we described the differences in these responses according to the gender and type of disease (i.e., oncological or non-oncological).

The questions addressed in this study were formulated based on the issues that have been highlighted in previous publications as the main sources of suffering in the terminally ill. According to the model of suffering on which we based our work, these themes correspond to threatening situations; thus, the patients’ responses reveal how they attempt to contain these threats.

Section snippets

Methodology

We started from an interpretative, phenomenological and theoretical approach. Phenomenology invites us to seek the meaning of the experience of man (Fernandes de Freitas et al., 2007). Moreover, phenomenology attempts to advance the understanding of the processes and phenomena from the perspective of the social actors (Zichi Cohen and Omery, 2003). For this reason, phenomenology is the appropriate theoretical approach to the study of suffering.

Because we assume a model of suffering based on the

Results

The analysis of the participants’ responses to the various questions of the semi-structured interview allowed the identification of the principle, “Realise that life is short.” When this discovery occurs, one observes in the participants’ answers various manners of responding to this threat: “revaluating life”, “opportunity for growth” and “resignation/acceptance”.

Discussion

The analysis revealed that the patients interviewed in this study develop a series of psychological responses as they face the end of life. These coping mechanisms begin by the patients positioning themselves to face the real threat associated with the finite nature of life based on their realisation that life is short.

Those patients who feel reassured that they have accomplished their necessary goals in life are ready to die in peace. The patients’ ability to re-evaluate their prior

Strengths and weaknesses

One of the strengths of this study is that it focuses on rarely investigated topics such as the responses used by patients with terminal illnesses to deal with their suffering. This knowledge is a resource for developing interventions that are based on encouraging these responses, thus providing a practical application for nurses who care for this type of patient.

The testimonies provided by the patients are very valuable because some of the responses were collected during the weeks or days

Conclusions

The suffering that is associated with a terminal illness is concretised by the theme “realise that life is short”. Faced with this observation, the patients who tend to re-evaluate their lives in search of factors that make them feel satisfied can achieve true acceptance. Our patients also view their diseases as opportunities for growth, thereby transforming their attitudes towards themselves and others.

Nurses must seek to alleviate the emotional impact of terminal illnesses on their patients

Conflict of interest statement

None declared.

Funding

This research was partially funded by the government of the Junta de Andalucia [0070-2007] (SPAIN).

Ethical approval

This research has gained approval from the Clinical Research Ethics Committee of Granada (Spain) and the Research Foundation in Eastern Andalucia (Reference: PI-0070/07). Consent was obtained from each patient previous to the interview. Patients were assured that they could remove themselves from the research at any time without providing any explanation.

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