Dignity in end‐of‐life care at hospice: An Action Research Study

Abstract

Background Safeguarding the dignity of patients at the end of life is a key objective in palliative care practice in Denmark. The concept of dignity and how it influences a dying persons’ quality of life is thus influential in end‐of‐life care at hospices. However, what is meant by dignity, how dignity is understood and practiced by healthcare professionals in Danish hospices, and whether this relates to the patients’ understandings and needs concerning dignity remains unanswered. Aim The aim of this study was to explore and improve dignity in care through an action research study with patients and hospice staff at two different hospices in Denmark. This was done by exploring how patients and healthcare professionals expressed their understandings and needs concerning dignity and involving participants in the research process with the goal of improving dignity in care. Methods An action research method with reflection‐of‐praxis and action‐in‐praxis was applied. It was combined with methods of semi‐structured individual interviews with twelve patients, five staff and nine focus‐group interviews with staff. Results Three themes emerged from the analysis of data. The themes were as follows: (1) being understood, (2) contributing and (3) holistic care. Deeper analysis indicated that staff understandings of dignity mostly focused on preserving patients’ autonomy, whereas patients expressed needs for relational and spiritual aspects of dignity. Staff were mostly concerned about preserving patients’ autonomy when providing dignity in care, however, through the action‐in‐praxis they increased their awareness on their own praxis and patients’ needs and understanding concerning dignity. The theoretical model on dignity presented in the study also worked as a map to guide staffs’ reflections on dignity in praxis and facilitated a broader focus on supporting and caring for patients’ dignity in care. We believe this study has improved dignity in care at the two hospices involved in the study.

Learning to care for the spirit of dying patients: the impact of spiritual care training in a hospice-setting

“…This also relates to the course's focus on self-reflection which other studies has pointed to as a barrier for providing spiritual care [13]. During the explorative phases of the project we found that self-reflection on personal spiritual needs, thoughts, beliefs, and values would positively affect the staff members' ability to being relationally present in the vulnerable encounter [28]. The theoretical basis for the focus on the vulnerable encounter and self-reflection comes from ethical and relational philosophy [29][30][31][32] as well as existential and relational psychology [33][34][35][36].…”

A systematic scoping review on patients’ perceptions of dignity

“…Denmark [179], Canada [78], USA [101], Singapore [92], Sweden [103], Italy [112], China [158] Innate and individual value [96] USA [96], Canada [75], Denmark [102] Innate, individual, societal place [86,114,175,180] Netherlands [86], Italy [181], USA [180], Iran [175], Greece [114] Individual, relational [130] China [130] Ambiguous [78] Canada [78] Right to how and when to die [100] Spain [100] Death without suffering [100] Spain [100]…”

Developing an Educational Course in Spiritual Care: An Action Research Study at Two Danish Hospices

“…The data generation consisted of a combination of the two elements of action research: reflection-on-praxis and action-in-praxis (Laursen 2014;Viftrup et al 2021) combined with the qualitative research methods of observations, semi-structured single interviews, and focus-group interviews (Creswell 2013;Green and Thorogood 2004;Liamputtong 2011;Halkier 2016;Kvale and Brinkmann 2009). The action research project and data generation occurred during the period April 2017 to November 2018.…”

“…It also includes results and statements of the action research process, where we found notions that were relevant for spiritual care practice at the hospice. These notions were: dignity in spiritual care (patients' perspectives) (Viftrup et al 2021); spiritual care begins by entering the door to the patients' room; three areas of spiritual care (patient care, self-care, and collegial care) (Viftrup et al 2020b); spiritual meaning-making; medical vs. spiritual vernacular; concrete vs. absolute hope (Viftrup et al 2020a); four aspects of spiritual care (relational, individual, embodied, and verbal); patient perspectives on death, dying, and afterlife (Viftrup et al 2020a); and relational spiritual care for patients (Viftrup and Langdahl 2019).…”