Date Published: January 17, 2019
Publisher: Public Library of Science
Author(s): Kathrin Ohnsorge, Christoph Rehmann-Sutter, Nina Streeck, Heike Gudat, Alessandra Solari.
The motivations that lead to wishes to die (WTD) in palliative care patients with cancer are relatively well studied. But little is known about WTD in other pathologies and the relation between subjective understandings of dying trajectories and a WTD. We investigated the WTD of palliative patients in four different dying trajectories: neurological diseases, organ failure, frailty due to age, and cancer.
62 palliative cancer (n = 30) and non-cancer (n = 32) patients (10 neurological disease; 11 organ failure; 11 frailty), their families and health professionals in different palliative care settings (248 interviews).
Qualitative semi-structured interviews. Data analysis through Interpretive Phenomenological Analysis and Grounded Theory.
In addition to personal motivations, we found that people dealing with similar trajectories were often confronted with similar questions and concerns due to similar challenges. For four trajectories we show typical patterns, similarities and differences that should be considered when talking with patients about their WTD. These illness-related considerations do not explain the WTD completely, but give important information on the challenges for particular patient groups that might experience a WTD. In all patient groups, there were clear moments that triggered a WTD: for neurological patients it was experiencing breathlessness, high-dependency care, or when considering tube feeding or respiratory support; for persons with organ failure it was an acute burdensome crisis; for patients with cancer after the initial diagnosis, it was the first relapse or the move into advanced palliative care; for elderly frail persons it was the move into care facilities, or the loss of important relationships or capabilities. The feeling of being a burden to others was reported in all patient groups.
WTD can be triggered within disease trajectories by specific conditions and transitional points that affect agency and self-understanding. A better understanding of the concerns and challenges of a particular dying trajectory as well as its characteristic trigger points can facilitate early and comprehensive communication about patients’ WTD, and the underlying motivations and protective factors.
Research shows that wishes to die (WTD) appear relatively frequently in patients undergoing end-of-life care (7–40%) . These wishes often have multidimensional reasons, hold subjective meanings, and consist of diverse and dynamic intentions, which in addition are weighed against each other over time . A WTD does not always contain a wish to hasten death . It is not uncommon for patients’ wishes with regard to living or dying to change from WTD (and even wishes to hasten death) into wishes to live and also the other way around, even in the final weeks of life . All this might suggest that for many patients, thoughts of dying and even wishes to die, transient or not, might be part of a process of coming to terms with their situation at the end of life, of facing loss, suffering and finitude. For several reasons, patients often face difficulties in talking frankly about these thoughts or wishes to health professionals. However, not addressing these ideas can lead to isolation and eventually to physical, emotional or spiritual needs not being met . Hence, we believe that regular sensitive invitations to communicate and explore patients’ needs and wishes–if patients so desire–should be standard in end-of-life care.
Our method relies on a phenomenological-hermeneutic framework and is based on Interpretative Phenomenological Analysis (IPA) . The idiographic approach of IPA enables the in-depth investigation of how persons make sense of and attribute meaning to their individual experiences. Such an approach has the advantage of studying in depth the individual person’s thoughts, wishes and actual experiences in the final phase of life, and allows insights into the complexity of their WTD. We conducted and analyzed qualitative interviews with patients and their caregivers, in order to investigate wishes to die or to live from the subjective perspective of terminally ill or elderly persons in palliative care. The results that we present here derive from one of the main categories of analysis (‘WTD and subjective experience of dying trajectories’). In order to compare the data between the different patient groups we then applied an analytic tool (derived from the ‘anatomy of a WTD’ described below) that we developed in the first part of the study, which involved 30 cancer patients, their physicians, nurses and relatives, and was based on a grounded theory approach [59, 60].
WTD express very personal concerns and processes of confrontation with one’s own death. In these processes, individual experiences, personal moral understandings, relationships and cultural issues play an important role . However, in the subjective accounts of persons going through the same illness or frailty due to very old age, we found that interviewees explaining the presence of their WTD expressed recurring considerations and experiences connected to the particular illness or health status alongside other more individual concerns. These considerations do not explain the WTD completely, but give important information both about the challenges for particular patient groups that might lead to a WTD, and what to investigate in more detail once a WTD is experienced. This information sometimes differs from third-party observations or more objective descriptions of the dying trajectories . What we present here as ‘trajectories’ refers to the similarities we found in the subjective experiences of people with the same illness in terms of their explanation of their WTD. In the introduction to each subgroup we describe general features of the experience of a particular illness as reported by our interviewees (patients). This description is based on the entire data set of patients with the same illness. The results for the WTD associated with this particular illness, however, are based only on the patients who expressed a WTD.
In our study of people undergoing the same illness or frailty due to very old age, we found recurring themes and experiences that were used by the interviewees to explain the emergence of their WTD, as well as differences between the groups that characterized the WTD of the different trajectories.