a) Dignity mediated by the loss of functionality.

A key theme in the studies included was the perception of dignity being diminished due to a loss of functionality. In most of the studies this was reflected in the idea that the illness reduced control over one’s body and over daily activities and circumstances. An emerging sub-theme here concerned the value that patients ascribed to their life, which was often expressed in terms of quality of life [2,29,30,34,35,38,40,42,44–46].

Loss of control emerged both in relation to bodily functions and to daily activities and circumstances. A loss of control over one’s body (incontinence, loss of mobility, of cognitive functions, etc.) was a central feature in 18 of the studies [2,3,16,17,24,28–30,33,35,36,38,40,42,45,46]. Some patients stated that diminished functionality undermined their sense of dignity. Participants in many of the studies [2,15,22,26–28,34,36,39,41–43,45] described their inability to perform daily living activities, which was often related to feelings of hopelessness and of being useless.

In 11 of the studies this loss of functionality was associated with a diminished quality of life, and it was interpreted as a loss of the value of life [2,17,24,28–30,33,34,42]. By contrast, in those cases where patients highlighted an inner dignity linked to personal or spiritual values, a positive sense of dignity was maintained in spite of the loss of autonomy or control [30,40,43]. Being aware of this inner dignity enabled patients to feel that life still had value and meaning despite their current circumstances. These personal values were expressed in terms of having a positive impact on family ties [46] or in the form of religious or spiritual beliefs [17,30].

b) Dignity as identity.

The second main theme that emerged concerned dignity as identity. In some way, dignity was seen as part of the patient’s identity and as something that was undermined by the dependency and fragility produced by the illness. This theme emerged with two sub-themes: self-identity (how the person sees him/herself), and social factors related to how the person believed he or she was seen by others.

Self-identity was related to physical image, the loss of self-esteem, and the loss of the self. The latter involved the perception that one’s identity or personal essence had been lost. Participants in many interviews described how the inability to look after themselves led to this feeling of a loss of self. In one study [38], some of the participants described the loss of their sense of dignity as a kind of disintegration of the self. Enes [16] referred to this notion as being human and maintaining the individual self.

For many participants their physical deterioration led to changes in their body. This was seen as altering their identity and as breaking the link with the person they had been prior to the illness. Some participants identified the loss of autonomy with being seen as “vegetables” [38,40,44] or with being treated as objects of little value, like “a bag of potatoes to be moved from spot to spot, to be rushed back and forth from the hospital” [38].

Another feeling associated with the loss of the self, and in some cases with physical deterioration, involved a loss of self-esteem. This loss of self-esteem was in turn associated with a feeling of being useless, since patients felt they had lost their social role, as well as with an awareness of their own vulnerability and their inability to manage daily living activities [2,29,37,38,42].

In all the studies the participants made reference to how their illness influenced their immediate social context. This concerned both the impact of their needing adequate care and attention, as well as how this affected their relationships and their perception of themselves.

In the majority of studies the idea of being a burden was related to the loss of social role, coupled with a feeling of being useless and a loss of the value of life. This occurred when the patient, who had previously occupied a certain role within the network of social relations, lost this status and felt that he or she was no longer seen as important or ceased to perform a set of functions due to the illness. Those patients who had occupied a key role within the family, who had once held a notable professional position or who had always valued their independence found it particularly difficult to have to depend on others and to lose their position of influence. Note, however, that in the study which Ho et al. [45] carried out in China, where a strong sense of the family unit still exists, this loss of social role led to a strengthening rather than an undermining of relations. The imminent death of a relative consolidated relationships within the family and was seen as an opportunity to pass on knowledge to younger generations.

A key issue in patients’ awareness of their dependency was when they needed a professional or relative to help with personal hygiene, eating, getting dressed or using the toilet [2,40,41,44]. In such cases this help was seen as humiliating and as an intrusion into one’s privacy. Some patients expressed their fear of becoming a financial burden on the family, and, especially, of requiring kinds of help that they would never have wished to need [2,16,30,38,42].

Relatives and patients stated that health professionals could influence the patient’s perceived dignity through the care, empathy and attitude they showed [2,16,30]. The wife of a man receiving ‘dignity therapy’ [30] said that one objective for professionals should be “helping the patient to feel that he is still of value”, and she said that her and her husband’s dignity had been maintained as a result of the care they had received in the hospital. By contrast, in studies such as that by Pleschberger [17] or Pearlman et al. [24] some patients said that they had been treated like objects, highlighting how this had made them feel ashamed. In 18 studies, mention was made of the fear of being vulnerable and fragile in relation to one’s surroundings, and this was related to seeing oneself as dependent or as an object of contempt [2,24,34,35,38,42]. Some patients referred to how upsetting it was to think that they would be remembered as being useless and incapable.

c) Autonomy as a determining factor of perceived dignity.

The third theme encapsulated two situations: desire for control over the dying process and desire for autonomy in the form of self-determination. Initially, the loss of control over one’s life and circumstances was linked to the loss of control over the body and basic functions [28,29,34,42], to the fear of suffering [24,28,29,34,37,39,42,44], and to control over how one would die. Subsequently, however, it was related to more inner aspects, that is, to the patient’s self-perception and to the feeling that life like this was not worth living.

A view shared by most participants was that their dignity had been diminished by the loss of control over their life and circumstances: physical functioning, pain, suffering and how they would die [2,3,16,17,24,28–30,33,35,36,38,40,42,45,46]. For many of these patients, the fact that they were no longer in charge of their own body was experienced as undermining their dignity and as stripping life of its value. Although a loss of physical functioning, for example, is a common occurrence among patients with advanced disease, the participants in the studies included emphasized a strong desire for control and autonomy. These patients expressed feelings of impotence and frustration associated with the awareness of their progressive and inevitable deterioration, with a suffering that seemed meaningless.

In some studies [28,42] the medical impossibility of controlling pain, the adverse effects of treatments such as chemotherapy [26], or the cognitive effects (delusions, personality changes, etc.) of certain drugs were equated with an ‘undignified death’.

The fear of suffering emerged in response to uncertainty about the future and irreversible deterioration. This fear was associated with feelings of anguish and despair, as well as with the corresponding fear of making others suffer. In the majority of cases this fear of suffering manifested as the expectation that the future would bring unbearable physical, emotional or existential pain. In some studies this kind of response to expected suffering was related to a previous negative experience involving the death of a relative or friend. Upon recalling this pain and suffering some patients reacted with fear or resistance as they did not wish to go through the same process [24,35,44].

In a similar vein, in those studies that explored the desire or wish to hasten death or the motivations that led patients to request physician-assisted suicide or euthanasia, this wish was related to the perception of a future that would be worse than death itself [44]. In other words, death here is seen as a way of putting an end to suffering. For example, in the case studies of Quill [28] and Kade [29] both patients had requested assisted suicide and this decision was taken prior to their finally losing control over their body or experiencing unbearable pain. What stood out here was their fear of suffering and of the pain to come, and their belief that the dying process would be intolerable.

The desire for self-determination can be regarded as a basic principle among those patients for whom the right to choose and to make their own decisions was of paramount importance. Two categories emerged here: the desire for independence, in the sense of ‘Do what I want’, and the right to decide.

Patients who defended the notion of self-determination were described as people showing a strong and independent character in the different areas of their lives [24,34]. Hence their desire to have control over how they die is regarded both by themselves and by the authors of the studies concerned as being a natural consequence of their character and of their approach to life. In other words, they do not wish their lives to be subject to external rules that restrict their freedom, or to be determined by aspects of their illness or the need for help from others [16,24,28,29,34,42,46].

Common to these patients was a belief in the right to choose how they would die and what treatments they would accept or refuse. Likewise, people who showed a strong desire for control appeared as active participants in the process of their medical care, and they were not prepared to accept paternalistic attitudes on the part of health staff. The possibility of a hastened death was seen as the ultimate opportunity for control and freedom that a patient could have [34,35,42]. Thus, being able to exercise this freedom was interpreted as a way of rising above one’s circumstances, including—paradoxically—their imminent death.