Abstract
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. 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. 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. 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.
Highlights
A primary goal in palliative care is to ensure a high quality of life for persons with palliative care needs, which involves taking psychosocial, spiritual, and physical dimensions into account (World Health Organization/Worldwide Palliative Care Alliance, 2014)
The cluster theme including the most outcomes was “Themes related to Illness-Related Concerns” (n = 19), while the “Themes related to the Social Dignity Inventory” covered the fewest of the studied outcomes (n = 3)
This review identified “Themes related to Illness-Related Concerns” as the most common cluster theme, implying the need for a broader perspective including outcomes related to the other cluster themes, “Themes related to the Dignity-Conserving Repertoire” and “Themes related to the Social Dignity Inventory.”
Summary
A primary goal in palliative care is to ensure a high quality of life for persons with palliative care needs, which involves taking psychosocial, spiritual, and physical dimensions into account (World Health Organization/Worldwide Palliative Care Alliance, 2014). The World Health Organization (WHO) in 2018 reported that, globally, 40 million people are terminally ill, and millions of others not imminently dying need palliative care. Within palliative care, dignity-conserving care must be provided in various contexts for all persons who need it (Chochinov, 2007). A healthcare professional’s attitude, behavior, compassion, and use of dialog are important components of dignity-conserving care (Chochinov, 2007). Loss of dignity is a reality for many older persons and persons who are seriously ill (Gallagher et al, 2008; van Gennip et al, 2015), affecting between 4% and 11% of older and ill people in non-cancer populations (Chochinov et al, 2016), and reported as a significant problem for patients with cancer (Hack et al, 2004)
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