Dignity-conserving care for persons with palliative care needs — identifying outcomes studied in research: An integrative review

Abstract

Objectives. With people living longer, palliative care may be required for lengthier periods of time. This puts demands on healthcare organizations to provide optimal palliative care. Maintaining dignity is central for any person's health and quality of life, but especially for a person with palliative care needs. Dignity-conserving care needs to be evaluated to increase knowledge about outcomes and how to assess these. The purpose of this integrative review was to identify outcomes studied within dignity-conserving care and how these have been operationalized.Methods. An integrative review was conducted in 26 quantitative or mixed-method studies and study protocols. Thematic synthesis with an abductive approach was used for analysis. Results. Seven themes of studied outcomes were identified, as well as four cluster themes: themes related to Illness-Related Concerns, themes related to the Dignity-Conserving Repertoire, themes related to the Social Dignity Inventory, and themes regarding Overarching Dignity Issues. Most outcomes studied dealt with Illness-Related Concerns within the themes of "Performance, symptoms and emotional concerns" and "End-of-life and existential aspects". Themes linked to the Social Dignity Inventory had the lowest number of outcomes studied. Outcomes regarding overarching dignity issues such as "Dignity-related distress" and "Quality of life" were common. However, the results lacked concrete communication outcomes. Significance of results. The results will underpin future research in which dignity-conserving care is implemented and evaluated, and contribute to the provision of evidence-based palliative care. A greater focus on outcomes within cluster themes related to the Dignity-Conserving Repertoire and the Social Dignity Inventory is needed, as is more focus on communication outcomes.

Conserving dignity and facilitating adaptation to dependency with intimate hygiene for people with advanced disease: A qualitative study

“…Little research has examined the impact of intimate dependency at the end of life as disease progresses and function declines 20 within the context of occupational adaptation. This study sought to understand how people with palliative care needs experience dignity with intimate hygiene as function declines and how they adapt to this increased dependence, examined against Model of Human Occupation constructs.…”

Valuing the individual – evaluating the Dignity Care Intervention

“…9 Dignity-conserving approaches can help older persons feel respected 10 and HCPs can be guided in providing relevant palliative care. 11 Dignity interventions are rare, 12,13 and more research is needed to make them a solid part of older persons' health care. An integrated review 12 showed that dignity-conserving care (DCC) is often evaluated based on outcomes connected to illness-related concerns, but rarely based on dignity or social outcomes.…”

Patients Receiving Palliative Care and Their Experiences of Encounters With Healthcare Professionals

“…Good caring encounters can be seen as individual, person-to-person connections in which the interaction happens as equals (Wälivaara et al, 2013). Patients with life-threatening conditions need to be treated as unique and whole people, not just as a case of ‘diseases’ (Söderman et al, 2020). Healthcare professionals’ ethical awareness is needed to ensure successful encounters, quality of care (Akin Korhan et al, 2018) and possibilities for the patient to make autonomous decisions regarding their regular care, all of which requires frequent conversations with the healthcare professionals (Houska & Loučka, 2019; Nygren Zotterman et al, 2016).…”