For the first time, this embedded case study comprehensively investigated a situation of VSED from different perspectives of each of the group of caregivers and relatives. Based on the experiences of the participating persons, it was possible to elaborate a first model of dealing with VSED in a long-term care institution. The focus of this model reflects the major concept of this study: VSED as an option of ending one’s life prematurely represents an unknown challenge in the field of tension between one's personal attitude and the concerns, fears and uncertainties of the agents.
Furthermore, it became obvious that the age of the affected person directly influences the attitudes of the agents. Permission and performance of VSED in an institution significantly depend on the attitude towards VSED on the part of the individual agents and the institution. In the subsequent sections, we discuss the following central aspects: options of premature dying, challenges in caring for chronically ill persons, significance of personal attitude and coping with concerns and fears in a professional manner.
Options of premature dying
Besides VSED, the literature describes three further methods of prematurely ending oneˊs life. The first is withholding life-sustaining interventions [21], the second death-accelerating analgesics and sedatives [20]. It is important to demarcate both methods from the killing on request since it is illegal in Switzerland [20]. Only nursing and palliative medical interventions leading to an accelerated dying process as a side effect are in accordance with the law [42, 43]. The third option consists of assisted suicide [20]. Persons who decided to end their life receive a lethal drug on medical prescription [20]. This method is not illegal in Switzerland and is offered by organisations like DIGNITAS or EXIT [20]. Although assisted suicide is legal, this was no option for the affected person as she wanted to ensure a natural dying process. Her son presumed that her faith might have played a role in this decision. In the woman's eyes, the drug prescribed for assisted suicide was poison. Poisoning herself was no option for her.
Classifying VSED proves to be difficult. Depending on the perspective, it can be regarded as withholding treatment, natural death or suicide [7]. Interpreted as an omission causing death, VSED can also be regarded as withholding treatment and therefore is a human right [7, 44]. Focusing on the deliberateness of the action, VSED can be classified rather as suicide [45, 46]. Wolfersdorf (1995) defines suicide as a self-induced action aiming to kill oneself [47]. This action is performed with the expectation and in the faith of achieving this aim by means of the chosen method [47].
However, VSED can be distinguished from suicide as the decision is reversible during the first days [16, 20]. To classify the wish to die, the person's current situation is significant [25, 48]. Is the person alive only by means of medical treatment, withholding treatment is not considered as suicide because it allows a natural death [25]. In this perspective, VSED can also be regarded as a form of withholding treatment [25]. In this context, Schwarz (2007) mentions that persons who are about to die from their disease, do not have the option to decide for life. As a consequence, VSED cannot be regarded as a decision against life [7].
The literature (clinical, philosophical, ethical and discipline-specific) offers heterogeneous answers to the question if VSED should be regarded as natural dying or suicide [49]. Concerning the woman's argument of not wanting to poison or kill herself, it can be assumed that from her point of view, VSED is not an act of self-killing.
The dying process in VSED corresponds to a natural dying process [20]. This distinguishes VSED from other forms of suicide [20]. The participating nurses confirm this view by comparing the dying process in VSED with the natural dying process.
For relatives, the difference between characterizing VSED as withholding treatment, natural death or suicide seems to be relevant on an emotional level [7]. Interpreting VSED as suicide can evoke pain, grief or anger and may negatively affect the bereavement process [7].
The elaborated model shows that classifying VSED as suicide or natural dying is important with regard to the way an institution deals with VSED. To ensure a professional way of dealing with VSED, the aim could consist in positioning VSED in the middle of a continuum ranging from suicide to natural dying. This may allow a reflected handling of VSED for all agents. Regarding VSED as suicide on a personal and institutional level leads to an interdiction of VSED without reflection. On the contrary, interpreting VSED as natural dying on the personal and institutional level, entails the danger of allowing VSED without reflection. This probably results in trivializing it since critical voices are absent. The results show that VSED in young persons is classified rather as a form of suicide, in contrast to implicitly renouncing eating and drinking in older persons. This indicates that institutions tend to reject VSED in younger persons, while implicit renouncement of eating and drinking in older persons is accepted and admitted without reflection. With regard to age-associated changes of food-intake, e.g. reduced appetite and feeling of thirst, swallowing problems, delirium or manual impairments [50], a non-reflected accepting attitude towards VSED can have potentially serious consequences, since the distinction between age-associated changes of food-intake and implicit renouncement of eating and drinking are not always clearly perceptible.
Challenges in caring for chronically ill persons
Caring for chronically ill persons is marked by challenges [51]. It is not comparable with caring for acutely ill persons due to specific features of the nurse-patient-interaction. The aim does not consist in healing but in enabling persons to live with their illness and to preserve their quality of life [52]. The nursing role is extended by supporting, counselling and developing tasks [52]. The long-term patient-nurse-relationship leads to proximity [51]. This entails the danger of intermingling the professional and the everyday view [51]. In the situation described in this study it cannot be dismissed that the nurses' proximity to the affected woman had an influence on their personal view concerning VSED. The closer agents were to the affected woman, the greater was their endeavour to fulfil the woman's request. The nurses argued that they already had known the affected person for a long time and so they could comprehend her wish. The general manager was accused of deciding without knowing the woman and her situation.
Achieving a professional balance between proximity and distance is described as a significant part of in-patient nursing care [53]. This balance allows nurses to act in a professional way [54]. Therefore, they should be able to establish a close relationship with the person and at the same time look at this relationship from a distance [54].
Chronically ill persons are not only in need of functional nursing interventions but also require support for the work of coping and adjusting during the entire course of disease [51]. This poses an additional challenge. Furthermore, it is important that nursing care for chronically ill persons is focused on the entire course of disease and addresses the complexity of a chronic disease [51]. With regard to the situation examined in this study, this requires adjusting care to the progressing course of multiple sclerosis. There is a high need of support for the coping process, particularly after an exacerbation. The exacerbation caused a change from a stable stage to a deteriorating stage of chronic illness [55]. Symptoms were no longer controllable, and the affected person lost physical abilities. It was necessary to adjust activities of daily living to a new situation [55]. As the woman was confronted with progressing physical impairments and therefore became increasingly dependent on nursing support, she experienced a crisis. During this time, the need for support and for adjusting to the new situation was high. However, the woman failed to adapt to this situation and to return to stability [55]. So, she decided to prematurely end her life.
The particular role of chronically ill persons in society can also be challenging for nursing care [51]. Nurses must be aware that chronically ill persons experience an ambivalence between being ill and being healthy. It is necessary to pay increased attention to this ambivalence [51]. Additionally, this ambivalence is associated with the desire for autonomy [51]. Thus, nurses should be able to concentrate not only on patients´ deficits but also on their resources [51]. Schaeffer and Moers (2000) describe the necessity of this rethinking as "accompanying and supporting persons on their way to resuming and maintaining wellbeing and an autonomous way of living "(S. 476) [51]. In the situation described in the current study, the affected person's will for self-determination was of central importance. For the nurses, the wish of the affected woman was paramount, and they regarded it as their task to support her on her way, irrespective of their personal attitude. This is in accordance with a study by Mattiasson and Andersson (1994). The authors came to the conclusion that nurses caring for persons with the wish for premature dying respect the patient’s will for autonomy even if this is challenging for them [56]. However, to respect patient autonomy, an accordance of nurses' and patients' aims is not necessary, as Boppert (2002) emphasizes [57].
It is evident that caring for chronically ill persons in general entails many challenges [51]. In the current study, VSED posed an additional challenge since the agents were unfamiliar with this method [58]. According to Knight (1921), uncertainty arises in situations in which behavior cannot be traced back to a person’s own opinion or to scientific information [59]. Related to the given situation, Knight's statement can be confirmed. The behaviour of all agents was characterized by uncertainty since they had neither experience nor expertise concerning VSED.
Significance of personal attitude
In the professional context, a personal attitude results from a habitus [60]. A person’s habitus represents her or his patterns of perceiving, thinking and acting [60]. All experiences of a person are expressed in the habitus which is imprinted by the position a person holds in society [60]. Bourdieu's description of habitus allows to explain why the opinions of various professions and relatives are different. All agents have various experiences and hold different positions in society. This has probably resulted in developing different personal attitudes towards VSED. The results lay bare that the following aspects are relevant for adopting a personal attitude: one’s own experience, prior knowledge, faith and role as well as the performing person's age, disease and deliberate communication of VSED. A study by Harvath et al. (2004) revealed that nurses mainly adopt an approving attitude towards VSED and are willing to accompany persons during VSED [61]. In the current study, nurses also showed an affirming attitude towards VSED. Therefore, it could be concluded that the nursing role is associated with an affirmative attitude towards VSED.
A person’s attitude towards death is influenced by personal, cultural, philosophical and social belief systems [62, 63]. This is in accordance with the statements of the participating nurses in the current study, expressing that their attitude towards VSED is associated more with culture and faith than with the age and education of a nurse.
Dealing with concerns and fears in a professional way
All agents expressed that VSED as an unknown challenge induced fears and concerns. In the literature caring for dying persons is described not as a professional but a personal challenge [64]. Nurses must reflect their emotions concerning their own mortality and at the same time they have to take over the care for dying persons in their professional life [64]. In the current study, nurses already were experienced in caring for dying persons. However, VSED was unknown to them and raised fears and concerns. These fears were related to interventions against the sensation of hunger and thirst as well as to the following questions: What would happen if the affected person decided to resume food-intake? Is the dying process in VSED different form the normal dying process? How should nurses communicate VSED towards external persons?
Harvath et al. (2006) reported that several nurses caring for persons with a wish for premature dying felt personally responsible for this wish and tried to dissuade them from the way they had chosen [22]. The present study cannot confirm this result. Participating nurses were able to distance themselves clearly from the woman's wish and assigned the responsibility to her. Additionally, Harvath et al. (2006) mentioned that nurses expressed fears about offending the law by caring for persons with the request for premature dying [22]. In our study, fears concerning the legal situation also arose. Nurses reported being uncertain since the general manager accused them of doing something illegal. Another fear-inducing factor in this context are imaginations of letting somebody die of thirst in an excruciating way [26]. The participating nurses shared this fear.
To cope with situations causing uncertainties, fears and concerns, nurses have to achieve a balance between their personal and professional ethics and patient autonomy [22]. In that respect, the participating nurses expressed the need for expertise and a professional contact person for VSED-related issues. Furthermore, knowledge about the legal situation is also important to reduce fears. Having gained positive experiences with caring for a person with VSED also proved to be helpful for the nurses in order to reduce fears in the future.
Limitations
For the first time, this study proposed a central model of caring for a person during VSED in a long-term care institution. We derived this model from the case underlying this study. Due to the degree of abstraction, it might be assumed that the theoretical model generated in this study can be transferred to the in-patient setting. However, this should be tested.
Implications for practice and research
This study reveals the need of professionally embedding VSED into practice. To ensure that VSED can be systematically available as an additional option to prematurely induce death, educative interventions and quality controls are necessary. Since VSED is a complex phenomenon, it is required to involve palliative care into practice development early on and comprehensively. Furthermore, it is necessary to distinguish between accepting VSED and respecting the wish for it. With regard to performing VSED, the study lays bare that consensus, information and moderation are indispensable for the team. To facilitate dealing with VSED in practice, this method and its possible complications require further research. This study offers a conceptual model that should be verified by means of a hypothesis-testing approach. Further research ought to consider different situations for performing theory-generating studies. It is recommended to use lifeworld approaches to investigate experiences of the agents involved. Based on the results, interventions for health care professionals and relatives should be elaborated. Additionally, clinical guidelines ought to be developed to professionalize dealing with VSED in institutions.