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.


Introduction
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. However, 86% of those in need of palliative care do not receive the needed care, and access is unequal on the basis of age, diagnosis, and home location (Lindskog et al., 2015;World Health Organization/Worldwide Palliative Care Alliance, 2014;World Health Organization, 2018). Still, within palliative care, dignity-conserving care must be provided in various contexts for all persons who need it (Chochinov, 2007).
Core values of dignity-conserving care are dignity, kindness, and respect, and remembering to "care for" the person. A healthcare professional's attitude, behavior, compassion, and use of dialog are important components of dignity-conserving care (Chochinov, 2007). Dignity is central for persons experiencing difficulties with an illness (Brennan, 2017). It has been described that in healthcare, persons have dignity when they are able to live in agreement with their principles and values (Barclay, 2016). Persons who have problems with a failing body can be vulnerable and can lose control over their body and their immediate environment, which naturally impacts their ability to uphold standards and values (Barclay, 2016), leading to loss of dignity (Barclay, 2016;Kennedy, 2016). 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).
Interventions to conserve dignity can contribute to improved palliative care (Johnston et al., 2017b) but their value to a person's health, and how they can be evaluated in a proper manner must be further explored to find out the most optimal setup of an intervention and how it should best be implemented to maintain a person's dignity. Previous studies (Johnston et al., 2017a(Johnston et al., , 2017bMcIlfatrick et al., 2017) raise the importance of interventions aiming to conserve severely ill persons' dignity and of evaluating their effectiveness before implementing them in care (Lendon et al., 2015). In the future, healthcare will be based not so much on activities, but rather on outcomes (Department of Health, 2010). Outcome assessment has been defined as "research aimed at assessing the quality and effectiveness of health care as measured by the attainment of a specified end result or outcome … " (Jefford et al., 2003, p. 110). Outcome research is important to provide information that inform patient decisions, guide healthcare professionals, and inform health policy decisions (Jefford et al., 2003). Thus, research on this topic and consideration of relevant outcomes are central to implement new interventions. This will enable healthcare providers to assess the strength of evidence (Bland, 2015). Today, outcomes targeting dignity-conserving care need to be further explored and clarified. Previous reviews have focused on: dignity therapy (DT) and its effects (Fitchett et al., 2015;Donato et al., 2016;Martínez et al., 2017;Xiao et al., 2019), overviews of psychological/psychosocial interventions (Hulbert-Williams et al., 2018;Teo et al., 2018;von Blanckenburg and Leppin, 2018;Warth et al., 2019), evidence of existential interventions (Bauereiβ et al., 2018), interventions with biographical approaches (Hesse et al., 2019), personal narrative interventions (Roikjaer et al., 2019), and death anxiety interventions (Grossman et al., 2018). These reviews did not have a clear focus on outcomes studied within dignity-conserving care, and without such overviews, it could be difficult to introduce this type of care within palliative care.
To the best of our knowledge, no overview has been conducted of research concerning outcomes studied after different interventions for dignity-conserving care. Hence, this integrative review aims to identify outcomes studied after different interventions in dignity-conserving care and to find out how these have been operationalized through various instruments.

Design
This study has an integrative review design (Whittemore and Knafl, 2005) to allow for the inclusion of primary studies with a Additional key words Limitations Cinahl Human Dignity 1 OR Individuality 1 OR Digni* OR Personhood* AND Palliative Care 1 OR Hospice and Palliative Nursing 1 OR Terminal Care 1 OR Hospice Care 1 OR Terminally Ill Patients 1 OR Hospice Patients 1 OR Attitude to Death 1 OR "End of life" OR Patient Centered Care 1 OR "Person centered care" OR Home Health Care 1 OR "Home care" OR Long Term Care 1 OR "Dying process*" OR "Dying care" OR Dignified dying (no apostrophes here because this generated more articles) OR Dying.
Medline "Human dignity" OR Individuality 2 OR Digni* OR Personhood 2 AND Palliative Care 2 OR Hospice and Palliative Care Nursing 2 OR Terminal Care 2 OR Hospice Care 2 OR Terminally Ill 2 OR "Hospice patient*" OR Attitude to Death 2 OR "End of life" OR Patient Centered Care 2 OR "Person centered care" OR Home Health Nursing 2 OR "Home health care" OR "Home care" OR Long-Term Care 2 OR "Dying process*" OR "Dying care" OR Dignified dying OR Dying.
PsycINFO "Human dignity" OR Dignity 3 OR Digni* OR Individuality 3 OR Personhood* AND Palliative Care 3 OR "Hospice and palliative nursing" OR "Terminal care" OR "Hospice care" OR Hospice 3 OR Terminally Ill Patients 3 OR "Hospice patient*" OR "Attitude to death*" OR "End of life" OR "Patient centered care" OR "Person centered care" OR "Home health care" OR Home Care 3 OR Long Term Care 3 OR "Dying process*" OR "Dying care" OR Dignified dying OR Death and Dying 3 English language; peer-reviewed; date 1997/01/01-2017/12/ 31; adulthood (18yrs & older) Web of Science "Human dignity" OR Individuality OR Digni* OR Personhood* AND "Palliative care" OR "Hospice and Palliative nursing" OR "Terminal care" OR "Hospice care" OR "Terminally ill patient*" OR "Hospice patient*" OR "Attitude to death" OR "End of life" OR "Patient centered care" OR "Person centered care" OR "Home health care" OR "Home care" OR "Long term care" OR "Dying process*" OR "Dying care" OR "Dignified dying" OR Dying English language; publication years 1997-2017; document types: articles, reviews, proceedings paper. Refined search with: Adulthood OR "All adult*" OR Elderly OR "Old* people" OR "Old* person" 1 Subject heading; 2 MeSH term; 3 Thesaurus. The use of caps ("") keep words together in a keyword search. *The search-term was used with truncation.
combination of diverse methodologies such as quantitative studies, mixed-methods, and study protocols.

Search strategy
Searches were undertaken in four databases: CINAHL, MEDLINE, PsycINFO, and Web of Science, and limited to the time period 1997-2019. A broad and inclusive approach was used in preliminary searches to scope out the field. Indexing terms were established, as well as key words for free-text searching. Free-text key words were only used as a complement to indexing terms. In Web of Science, only free-text key words were available. The searches were started in CINAHL, where terms related to dignity (e.g. synonyms such as "personhood") and terms related to palliative care (e.g. synonyms such as "end of life care") were combined with Boolean operators "OR" and "AND." Moreover, the searches were limited to English language, peer-review, and "all adult" (aged ≥18 years) studies. Where needed, the combination of search terms in CINAHL was modified for MEDLINE, PsycINFO, and Web of Science. The search strategy (Table 1) was discussed with and validated by a librarian. The database searches identified 1,619 articles. In addition, a manual search was conducted (Whittemore and Knafl, 2005) by networking within the research group and searching through reference lists of the already included articles, generating a further 59 articles (giving a total of 1,678 articles).

Selection of articles
Inclusion and exclusion criteria (Table 2) were applied. The inclusion criterion "match the aim of the review" was applied to all titles by researcher A.S., and 758 articles were excluded (see Figure 1 and Table 3 for the selection process and search results). All inclusion and exclusion criteria were used on the titles and abstracts of the remaining articles by two researchers (A.S. and K.B.) separately before they compared their independent selections, discussed disparities, and reached agreement. To validate the selection process, researchers U.Ö. and C.W.H. reviewed a selection of preliminarily included or excluded articles. This process led to discussions among all the researchers about the selection criteria until consensus was reached. This process excluded 784 articles. Full-text papers were retrieved, read in full, and reviewed by researchers A.S. and K.B., leading to exclusion of 61 articles (75 articles remaining). After a validating discussion among all the researchers, 40 articles remained. There were 16 doublets, so the final selection included 24 articles. An updated search was done in February 2019, which added two more articles to the result (n = 26) (Tables 4 and 5).

Data analysis
Based on Whittemore and Knafl's (2005) recommendation, an analysis for mixed or qualitative method research, thematic synthesis (Lucas et al., 2007) was chosen to analyze the text of identified articles and facilitate the structuring of data. Further, an abductive approach (Alvesson, 2017) was used, which assumes empirical facts but does not reject theoretical beliefs in discovering patterns that generate a deeper understanding about outcomes. Themes of outcomes were created inductively, while cluster themes were created deductively. To identify themes, researchers A.S. and U.Ö. first read and reread the articles, and focused on manifest data regarding the aim. A.S. and U.Ö. analyzed five articles separately and then discussed them together to establish and validate what should be extracted from the articles. Further, all researchers were involved in the analysis of the articles. Data were inductively collated based on questions derived from the study aim: "What outcomes were studied?" and "How were outcomes operationalized?" This process resulted in seven themes. Further, the three main categories of Chochinov's dignity model (Illness-Related Concerns, the Dignity-Conserving Repertoire, and the Social Dignity Inventory; Figure 2; Chochinov, 2002) were used as a grid to deductively gather results into cluster themes. Some themes could not be clustered to the three main categories, which generated a fourth cluster theme: "Themes regarding Overarching Dignity Issues" (Table 7). For trustworthiness, themes and cluster themes were validated through discussions within the research group. In the last step, an agreed synthesis was produced, reporting main results.

Results
The final study set comprised 26 articles (for study characteristics, see Tables 4 and 5; for included interventions, see Table 6). The findings are presented within four cluster themes and seven themes (Table 7 for overview of outcomes studied in research, see supplementary material). 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). Most of the reported outcomes have been studied, but outcomes reported in study protocols are proposed to be studied. To increase the readability of results, study numbers [e.g. Study 1 (S1)] are used (below and in Tables 4 and 5) instead of references for each included article.

Themes related to Illness-Related Concerns
Performance, symptoms and emotional concerns This theme included studied outcomes related to performance, symptoms, and emotional concerns. The outcome "Performance status" was studied after the implementation of DT and operationalized using the Palliative Performance Scale S5 or the Palliative Performance Scale version 2 (PPSv2) S10 . Further, post-DT, "Symptoms" as an outcome were studied using the Edmonton • Match the aim of the review.
• Focus on palliative care or synonyms for this term (e.g. end-of-life).
• Evaluate interventions for dignified care/dignity-conserving care.
• Describe quantitative outcomes of the care provided or planned care.
• Adults ≥18 years old in home care or nursing homes, alternatively within palliative care units and palliative care teams (which may be in or out of hospitals). • Are based on the perspective of adults, or the perspectives of relatives or healthcare professionals.
Exclusion criteria: • Are qualitative studies, reviews or case studies.
• Are quantitative studies only including surveys, feedback questionnaires and single-item scales. • Focus on instruments that measure dignity, but do not include an intervention. • Focus on a dignified death in relation to euthanasia.
• Do not allow extraction of results from adults.
• Exclusively include persons with dementia or with severe cognitive disorders.
Symptom Assessment System (ESAS) S5,S19 including both emotional symptoms and physical symptoms, while "Symptoms and concerns" were studied using the Structured Interview for Symptoms and Concerns (SISC) S5, S10 . Additionally, by using heart rate variability S23 , a biomarker reflecting cardiovascular regulation, investigators planned to study "Psychophysiological wellbeing" as an outcome following the Family Dignity Intervention (FDI), while "Distress" was studied post-DT and operationalized through the Distress Thermometer, a 0-10 Likert scale that has been validated in cancer populations S19 . Moreover, investigators planned to study emotional concerns after DT implementation through the outcome "Affective states," operationalized through the Positive and Negative Affect Schedule (PANAS), S15 and "Psychological wellbeing," through the 20-item Life Closure Scale (LCS) S15 . The outcome "Psychological distress" was studied post-DT S5, S6, S7, S9 , post-FDI S23 , and post-implementation of the Dignity-Conserving End-of-Life Care Program S22 . It was proposed to be operationalized through the Geriatric Depression Scale S6 , the Distress Thermometer S7 , or the Patient Health Questionnaire-9 S23 or was operationalized through the Hospital Anxiety and Depression Scale (HADS) S9 , the SISC S5 , or the McGill Quality of Life Questionnaire S22 . Moreover, "Depression" was studied after DT and was further proposed to be operationalized using the HADS S5,S9, S10, S12, S13, S15, S17 , the 15-item Geriatric Depression Scale S8 , the second edition of the 21-item Beck Depression Inventory S11 , or the Zung Self-Rating Depression Scale S16 . Another outcome within this theme, proposed or studied after DT, was "Anxiety" which was operationalized through the HADS S5, S9, S10, S12, S13, S15, S17 .
End-of-life and existential aspects This theme included studied outcomes relating to end-of-life and existential aspects. "End-of-life psychological experiences" as an outcome of DT were studied using demoralization syndrome (DS) criteria, the Desire for Death scale, and the Patient Dignity Inventory (PDI) S14 . Further, "Palliative care needs" as  (Moher et al., 2009) an outcome was proposed or studied through the Palliative care Outcome Scale (POS) S7, S9 , and "Goals of care and treatment preferences in end of life" were studied using the Hypothetical Advanced Care Planning Scenario (H-CAP-S) S19 , both post-DT. Additionally, existential outcomes were studied after DT: "Sense of life closure" was proposed through the use of the LCS S15 or studied through the Herth Hope Index (HHI) S9 . "Existential wellbeing" was studied through the Functional Assessment of Chronic Illness Therapythe 12-item Spiritual Well-Being Scale (FACIT-sp.) S3 , and "Existential distress" was studied using the SISC S5 , and in another study on five individual items (anxiety, sense of suffering, desire for death, lack of wellbeing, and perceived loss of dignity) S11 each one scored on a range from 0 to 6. "Purposelessness" as an outcome was further studied and operationalized through the Purposelessness, Understimulation and Boredom (PUB) scale S16 , while outcomes such as "Will to live" and "Desire for death" were studied and operationalized with the will-to-live visual analog scale included in the ESAS S4, S5 and the Desire for Death Rating Scale (DDRS) S14 , all after DT.

Themes related to the Dignity-Conserving Repertoire
Essential life values This theme included outcomes relating to hope, meaning, and spirituality. The outcome "Hope" was studied or proposed to be through the HHI after DT S2, S15 , while "Hopefulness" was proposed or studied through the same instrument (HHI) after DT S1, S6, S7, S8, S9 or the FDI S23 . Another outcome was "Meaning in life," which investigators proposed to study through the use of the Life Evaluation Questionnaire, the 5-item Appreciation of Life subscale, the 8-item Contentment subscale, and the 8-item Social Integration subscale S15 (after DT), or through a modified Cancer Coherence scale S23 (after FDI). Moreover, the outcome "Spirituality" was studied using the GES (Grupo de Espiritualidad de la Sociedad Española de Cuidados Paliativos) questionnaire S17 or the Dignity Impact Scale (DIS) S18 post-DT, while "Spiritual wellbeing" was studied through the FACIT-sp., post-DT S1, S2, S5 , or proposed to be studied that way post-FDI S23 .
Aspects of personal strength and coping Some of the studied outcomes could be related to personal strength and coping. The outcome "Self-efficacy" was proposed as a mediating or moderating factor through the General Self-Efficacy (GSE) scale S15 , while "Resilience" was proposed to be studied through the Connor-Davidson Resilience Scale (CD-RISC) S15 or was studied with the Brief Resilient Coping Scale (BRCS) S17 (all after DT). In addition, the outcome "Empowerment" was studied through the Empowerment Scale (after the intervention targeting fundamental values) S26, and the outcome "Post-traumatic growth" was proposed by using the Post-traumatic Growth Inventory (PTGI) after administering the Revie ⊕ intervention S21 . Investigators proposed to use "Psychological adaptation" as an outcome with the LCS S15 , while "Death acceptance" was studied through the Terminal Illness Acknowledgement (TIA) questionnaire S19 , both after DT.

Themes related to the Social Dignity Inventory
Aspects of care tenor and social support This theme included aspects of care tenor and social support. The outcome "Person-centred care climate" was studied after the implementation of the Patient Dignity Question (PDQ) tool S24, S25 and an intervention targeting fundamental values S26 , and further operationalized through the Person-centered Climate Questionnaire-Patient (PCQ-P) including three subscales measuring: a climate of safety, a climate of everydayness, and a climate of hospitality. Moreover, the outcome "Empathy" was studied and operationalized through the Consultation And Relational Empathy (CARE) measure S25 or the Empathy questionnaire S20 for healthcare professionals after administering the PDQ. "Social support" was another outcome studied post-DT; it was operationalized through the Duke-UNC-11 Functional Social Support Questionnaire S17 , focusing on confidential support (support for communicating intimate feelings) and affective support (support for positive empathy). In one study, investigators proposed a modified version of the Inventory of Social Support S23 to study the same outcome after FDI.

Themes regarding Overarching Dignity Issues
Some themes were classifiable under more than one of the three main categories in Chochinov's dignity model (Chochinov, 2002); for this reason, we considered them to reflect more broad or overarching dignity-related concerns.

Aspects of dignity and gratitude
The theme "Aspects of dignity and gratitude" was seen as a broad theme featuring in Illness-Related Concerns, the Dignity-Conserving Repertoire, and the Social Dignity Inventory.
Key findings Perspective Aoun et al. (2015) Study 1 (S1) To assess the acceptability, feasibility, and effectiveness of DT to reduce distress in people with motor neuron disease (MND) and their family caregivers.
A feasibility study with a quantitative approach.
Participantsmembers of the support organization, the MND Association of Western Australia. Patients (n = 27) from home-based care, family caregivers (n = 18), in Australia.
I: DT. C: no control group. D: repeated-measures pre-and post-intervention.
• DT was well accepted.
• No significant differences were seen in outcomes, but patients described high satisfaction with and endorsement of DT. Family caregivers agreed that DT document will continue to be a source of comfort.
• Persons with palliative care needs • Relatives (family caregivers) To assess the feasibility, acceptability, and potential effectiveness of DT for people with MND.
A cross-sectional feasibility study using a one-group pre-test/post-test design.
Participants were people diagnosed with MND (n = 29) living at home or in an aged care facility in Australia.
I: DT. C: no control group. D: self-report questionnaires.
• No significant pre-test/post-test differences for hopefulness, spirituality or dignity at the group level, but changes in hopefulness at the individual level. • DT was greatly acceptable to people with MND and is feasible if therapists overcome time and communication difficulties. Benefits included better family relationships, improved sense of self and greater acceptance.
To assess the feasibility and acceptability of a web-enhanced and abbreviated DT intervention.
Feasibility study with before and after assessments. Adults with terminal cancer (n = 16). Outpatient oncology clinic, academic medical center, USA.
I: an abbreviated DT intervention using a legacy-building web portal. C: no control group. D: baseline and post-intervention surveys.
• Acceptability of the intervention on a 0-10 Likert scale was M = 8.82, SD = 1.08; acceptability of the final legacy project was M = 8.55, SD = 1.13. Of patients using the web portal, 80% were dissatisfied. • Meaning in life and dignity-related distress did not significantly differ from baseline.
• Persons with palliative care needs Chochinov et al. (2005) To establish the feasibility of DT and determine its impact on various measures of psychosocial and existential distress.
A feasibility study with qualitative and quantitative methods. Terminally ill patients (n = 100). Inpatients and those receiving home-based palliative care services in Canada and Australia.
I: DT. C: no control group. D: pre-and post-intervention measures and a post-intervention satisfaction survey.
• Patients who felt satisfied or highly satisfied with DT were 91%. • Suffering/self-reports of depressed mood improved (significant), dignity improved (approached significance), hopelessness, desire for death, anxiety, will to live, and suicide showed no significant changes suggesting improvement. Wellbeing and quality of life diminished a little (non-significant).
• Persons with palliative care needs (Continued ) To investigate whether DT would be better than SPC and patient-centred care in terms of reducing psychological, existential, and spiritual distress in patients who are terminally ill.
A randomized controlled study with a before and after design. Patients with a terminal prognosis (n = 441). Palliative care in a hospital or community setting (hospice or home) in Canada, the USA, Australia.
• Significantly more patients receiving DT reported satisfaction than in the SPC group. Before and after measurements showed no significant differences between groups. Patients given DT were significantly more likely to report treatment as helpful to them, and as improving their quality of life and sense of dignity, as well as significantly more likely to report that the study treatment changed how their family saw and appreciated them. DT was significantly better than CCC in improving spiritual wellbeing and better than SPC in lessening sadness/depression.
To assess feasibility, acceptability, and potential effectiveness of DT to reduce distress in older people in care homes.
A phase II RCT. Residents aged 65+ (n = 60) with no major cognitive impairment in care homes in the UK.
• Residents receiving DT more strongly agreed it had helped them, made their life more meaningful, heightened their sense of purpose, lessened their suffering, increased their will to live, and had helped or would help their families (significant for feeling DT made life more meaningful at two-week follow-up, and that it would help their families at both follow-ups). No significant differences between groups on measures of potential effectiveness at any time. Small effects at T2 in favor of DT on depression and quality of life (EQ-5D only). The control group was more hopeful at T3; a reduction was seen in dignity-related distress in both groups.
• Persons with palliative care needs Hall et al. (2011b) To assess the ability of DT to reduce distress in advanced cancer patients.
A randomized phase II trial. Adults with advanced cancer (n = 45) within two hospital-based palliative care teams in the UK.
• Groups did not differ in dignity-related distress at any time but there was a slight reduction in dignity-related distress in the control group at one-week follow-up. The DT group showed higher levels of hope than the control group at both follow-ups. Effect sizes = medium, significant at one-week follow-up. • Groups did not differ on measures of anxiety, depression, quality of life or palliative outcomes. • The DT group was more positive than the control group on all self-reported benefits ratings (e.g. DT had helped). A quantitative study with baseline/ post-intervention measures. Adult women (n = 10) with metastatic cancer recruited from a local support group or by their medical team. Two patients were seen in their homes, while eight patients took part in the outpatient clinic.
I: DT. C: no control group. D: baseline and post-intervention measures (completed by four women), satisfaction survey for both the women and their family members (n = 6).
• Of patients, 75% said DT had been helpful to them and their families, and thought DT made their life more meaningful. Although completers had minimal problems with loss of dignity or suffering at baseline, 75% reported DT was helpful in these areas. • Desire for death, lack of wellbeing and loss of dignity slightly decreased from baseline. Mean depression scores increased by 29%, anxiety increased by 50%, HRQoL declined by 11%, existential distress remained relatively stable. Post-intervention scores might have been influenced by that half the completers (n = 2) had been informed of significant disease progression. An open-label RCT. Terminally ill patients (n = 60) from an inpatient palliative care unit in Portugal.
• DT seems to have a short-term beneficial effect on depression and anxiety for terminally ill patients. • DT was associated with a significant decrease in depressive symptoms at day 4 and day 15 but not day 30. In the SPC group, a significant increase in depression was observed. DT was associated with a significant decrease in anxiety. In the SPC group, no significant changes were found in HADS scores.
• Persons with palliative care needs (Continued ) • Participants reported overall benefit and a high level of satisfaction. Delivering DT with telemedicine extended the benefits of DT, bringing it to patients. • Mean scores: the Zung 43.0 (SD = 10.62) at baseline and 47.86 (SD = 9.12) at study end, PUB scale 30.13 (SD = 7.57) at baseline and 35.0 (SD = 6.46) at study end, lack of dignity or self-respect 3.75 (SD = 1.83) at baseline and 2.14 (SD = 1.95) at study end.
• Persons with palliative care needs Rudilla et al. (2016) (S17) To examine the effects of DT and counselling and to offer useful information that could be put into practice to better meet patients' needs.
An RCT. A sample of palliative care patients (n = 70) from a home care unit at the Hospital General Universitario de Valencia, Spain.
• The study provided evidence for the efficacy of DT and counselling in improving wellbeing. Statistically significant differences were found in dimensions of dignity, anxiety, spirituality, and quality of life for both groups. • Better results were reported in the counselling group with respect to depression, resilience, and anxiety.
• Persons with palliative care needs Scarton et al.
The purpose of this secondary analysis study was to examine properties of a new measure of dignity impact.
A study using the DIS to reanalyze post-test data from a large three-arm, multi-site RCT study. Participants from hospice/palliative care (n = 326) with a terminal illness in the USA and Canada.
• Compared with both other groups, the DT group reported significantly higher DIS ratings. • It is proposed that the DIS be used as the primary outcome measure for evaluating effects of DT.
To assess the feasibility of DT relatively early in the disease trajectory (primary endpoint) and the effect on death acceptance, distress, symptoms, quality of life, peacefulness, and advanced care planning (secondary outcome endpoint).
A feasibility study with a quantitative design. Patients with stage IV colorectal cancer (n = 9) who progressed on first-line chemotherapy at an outpatient oncology clinic in the USA.
I: DT. C: no control group. D: outcome measures. Feasibility assessed by success rate and a satisfaction survey.
• Participants were satisfied and felt DT was helpful; it increased sense of meaning (88%), sense of dignity (78%), sense of purpose (78%), and participants' will to live (67%) and was deemed helpful for families (88%). • Regarding physical symptoms, only appetite seemed to improve. With regard to emotional symptoms, no negative impact of DT was noted. There also seemed to be an increase in death acceptance over time. A change was found in non-life-prolonging goals of care and in treatment choices over time (shift from undecided to non-life-prolonging) (non-significant).  To assess the feasibility and acceptability of the PDQ: "What do I need to know about you as a person to take the best care of you that I can?," as a person-centred intervention for patients with palliative care needs.
A feasibility study with qualitative and quantitative design. Patients with palliative care needs (n = 9) in an acute hospital setting in Scotland, UK. Health care providers involved in care also took part (n = 5).
I: PDQ tool. C: no control group. D: questionnaires and outcomes, qualitative interviews.
• Participants found the PDQ acceptable. The environment was relatively person-centred (but the physical environment and the time HCPs had for patients were poorly rated). Patients felt that PDQ information was important for HCPs to know; 66.6% agreed that it affects the way they are cared for. Health care providers learned new things about patients but felt that this could not influence their respect towards them (they already respected them). To examine residents' perceptions of empowerment, person-centred climate and life satisfaction before and after a caregiver intervention concerning the Swedish national fundamental values. Further, to investigate whether there were any differences in change over time in these variables between an intervention group and a control group.
A cluster RCT with pre-to post-test design. Older people (n = 80) in residential facilities in five municipalities in Sweden.
• The intervention increased empowerment, and improved person-centred climate and quality of everyday activities among older people, while disempowerment decreased. In the control group, person-centred climate and quality of everyday activities decreased. No significant differences were seen for empowerment and disempowerment. • Change over time between groups was significant for empowerment, disempowerment, and person-centred climate and for life satisfaction regarding the quality of everyday activities.
• Persons with palliative care needs CARE, the Consultation And Relational Empathy measure; DT, Dignity Therapy; EoL, End of Life; FDI, Family Dignity Intervention; HCP, Health Care Professional; PDQ, Patient Dignity Question tool; QoL, Quality of Life; RCT, randomized controlled trial.
The outcomes "Sense of dignity" (after both DT S14 and FDI S23 ) and "Dignity-related distress" (after DT S1, S2, S3, S5, S6, S7, S8, S9, S10, S17 and the Revie ⊕ intervention S21 ) were reported in several articles as studied or proposed using the PDI. Other outcomes studied within this theme post-DT were "Gratitude" and "Appreciation of life," proposed to be operationalized through the Gratitude Questionnaire Six-Item Form (GQ-6) S15 (measuring the experience of gratitude, forgiveness, and spiritual transcendence) or through the 5-item Appreciation of Life subscale and one subscale of the Life Evaluation Questionnaire. S15

Aspects of quality of life
Another theme with a broad focus on dignity issues was "Aspects of quality of life." The "Quality of life" was studied after administering DT, FDI, and the Dignity-Conserving End of Life Care Program. It was operationalized or proposed through the Amyotrophic Lateral Sclerosis Assessment Questionnaire-5 (ALSAQ-5) S1 , a Quality of Life Scale (measuring the quality of life and satisfaction with the quality of life) S4, S5, S6, S7, S8, S9, S19 , and the EuroQoL 5 Dimension (EQ-5D) instrument S6, S7, S8, S9 and also by two items from the European Organization for Research and Treatment of Cancer Quality of Life C30 (EORTC-QLQ-C30) Questionnaire S17 . Further, the "Quality of life" was proposed or studied through the McGill Quality of Life Questionnaire S22 or through the WHO Quality of Life Scale-8 S23 . The outcome "Satisfaction with life" was proposed after the implementation of the Revie ⊕ intervention using the Satisfaction with Life Scale S21 or studied after the intervention targeting fundamental values with the Life Satisfaction Questionnaire (the LSQ) S26 . "Health-related quality of life" was another outcome studied (after DT) within this theme through the use of the EORTC Quality of Life Questionnaire-C15-PAL (15 items for palliative care) S10 or the Functional Assessment of Chronic Illness Therapy-Palliative Care version 4 (FACIT-Pal) S11 . Investigators also proposed to study "Nursing home quality of life" through the Nursing Facilities Quality of Life scale after the implementation of the Dignity-Conserving End of Life Care Program S22 .

Discussion
This integrative review identified outcomes that were grouped under seven themes and four cluster themes (Table 7). All identified outcomes could be related to Chochinov's dignity model (Chochinov, 2002). To be able to maintain or enhance a person's dignity, outcomes related to all three main categories are suggested to be studied together to provide high-quality dignity-conserving care. Otherwise, there is a risk that some part of a person's dignity could be unconfirmed. Loss of dignity has been related to different factors: symptom and existential distress, dependency, absence of peace of mind, and a lack of social support (Rudilla et al., 2016). This strengthens the assumption of using a broad focus on outcomes while evaluating dignityconserving care. This review identified "Themes related to Illness-Related Concerns" as the most common cluster theme, implying the need for a broader perspective also including outcomes related to the other cluster themes, "Themes related to the Dignity-Conserving Repertoire" and "Themes related to the Social Dignity Inventory." Other studies also recommend the use of a holistic approach to studying outcomes (Evans et al., 2013;Akpan et al., 2018), which implies that outcomes identified within "Themes regarding Overarching Dignity Issues" have to be considered in order not to get a too one-sided picture of the concerns of persons with palliative care needs. Previously, Patient-Reported Outcome Measures (PROMs) that were specifically developed to address dignity-conserving care and that are recommended for researchers and clinicians were identified (Johnston et al., 2017a) to be the PDI (Chochinov et al., 2008) and the Missoula-VITAS Quality of Life Index (Byock and Merriman, 1998). In this review, we identified "Dignity-related distress" operationalized through the PDI, as an outcome frequently studied when evaluating dignity-conserving care. By contrast, the Missoula-VITAS Quality of Life Index was not used in any of the studies, suggesting that this instrument may need more attention. Instead, other instruments measuring aspects of quality of life were identified in this review, for example, the McGill Quality of Life Questionnaire S22 (Cohen et al., 2017) which has shown strong psychometric properties and has previously been recommended (Selman et al., 2011).

Fig. 2. Harvey
Chochinov's dignity model (Chochinov, 2002) with permisson from the developer. DT includes a question protocol that guides a recorded therapy session, where the person can discuss dignity-relevant questions with a therapist. After the session, the therapist transcribes the session into a manuscript which after a few days is delivered back to the person who received the therapy, who can share the document with whomever they chose. Aoun et al., 2015 (feasibility, quantitative)  The FDI is based on the DT protocol, but instead of individual therapy, the FDI targets patient-family dyads to facilitate open dialog between patients and their family caregivers. It aims to strengthen the family connectedness and compassion through creating a supportive platform. The ultimate goal of the FDI is to offer a viable dignity-enhancing intervention to promote holistic palliative care that addresses psycho-socio-spiritual needs of families. The Revie is a person-centred life review intervention for nurses to deliver, including two sessions (60 + 15-30 min), to explore how a person's diagnosis has changed the person's values and preferences, and discuss life goals and projects. After the intervention, a booklet is created by the research team, integrating the person's important elements evoked during implementation of the Revie A program aimed at enhancing dignity and quality of life in terminally ill residents. Includes 10 core components: a life and death education (1); tailor-made life review intervention (2); asking residents about last wishes and a plan to fulfill these (3); discussions of funeral and memorial preparations (4); psychosocial support for residents' mental wellbeing (5); pain and symptoms management for residents' physical wellbeing (6); routine medical checkups and physical assessments to evaluate disease progression and adjust physical care (7); family meetings with the care team for an update on clinical progress, and to provide support and promote participation (8); making sure that the advance care plan is followed (9); grief and bereavement support to families (10).

Ho et al., 2016 (quantitative) Tf9
(Continued ) It was not unexpected that "Dignity-related distress" (used in 13 of the articles) and "Quality of life" (used in 16 of the articles) were among the most studied outcomes identified, as these concepts are concrete and central in palliative care (Ho et al., 2014;World Health Organization, 2018). These outcomes have also been listed by other researchers as essential (Johnston et al., 2017a;Akpan et al., 2018). Therefore, health organizations must enable healthcare professionals to emphasize aspects such as these. Healthcare professionals need to know how their patients experience dignity and their quality of life; and if they do not know this, their ability to provide their patients with optimal palliative care could be questioned. Providers of healthcare need to constantly remind themselves to focus on other aspects besides the patient's illnessesand to see the whole person. It is relevant to mention that a meta-analysis has concluded that psychosocial interventions are effective in improving the quality of life and reducing emotional and existential distress (Warth et al., 2019). Studies with a moderate to the high level of evidence have presented an increased sense of dignity, will to live, and sense of purpose outcomes after DT (Donato et al., 2016). However, effects of DT on dignity and quality of life (Xiao et al., 2019) as well as on physical and emotional symptoms (Fitchett et al., 2015) have been inconsistent. DT has shown efficacy in anxiety and depression outcomes in patients with high levels of psychological distress (Martínez et al., 2017). These outcomes are important and usefulshowing that dignity-conserving care could be beneficial for persons with palliative care needs. However, to avoid bias, it is always essential to choose outcomes and measurements that are sensitive to the intervention and to use validated instruments (Bland, 2015). This was lacking in several of the studies and together with a small sample, the design could be questioned.
There is also a need to evaluate effects of other interventions for dignity-conserving care, as one intervention may not be suitable for everyone, and as today tailored care is advocated for, also to use other outcomes for example relating to the care tenor (e.g. person-centered climate). It has been reported that a person with an illness that suffers from multidimensional problems, benefits from a person-centered approach (Grassi et al., 2017), and that a holistic approach (McCance et al., 2011) is suitable for enhancing dignity (Chochinov, 2007).
Further, outcomes within the "Themes related to the Dignity-Conserving Repertoire" can be crucial to evaluate, as it has been reported that loss of dignity is a risk factor for a person's wishing to hasten death (Monforte et al., 2018), which suggests great suffering for that person. Although there are ethical challenges when preserving dignity at the end of life, for example regarding inadequate organization for good palliative care (Brodtkorb et al., 2016), healthcare must assist in trying to prevent people from encountering such suffering. This can, for example, be managed by using relevant outcomes. Further, if healthcare does not give focus to outcomes within "Themes related to the Social Dignity Inventory," for example, empathy, there may be a risk of increasing a person's suffering. It has been stated that insufficient empathy can create a poor connection between the nurse and the patient (Cross, 2019). Patients have described empathy as a response that acknowledges and attempts to understand an individual's suffering (Sinclair et al., 2017). Moreover, both empathy and compassion have been reported by patients as having a positive effect on their care experiences (Sinclair et al., 2017). Attentive nursing care, including paying attention to the person's expressed emotions and narratives, is valuable for providing comforting care (Höglander et al., 2017). Thus, outcomes within the cluster theme "Themes related to the Social Dignity Inventory" must be considered and studied to a greater extent than they have been studied thus far; otherwise, we cannot expect persons' dignity to be well maintained. In this review, rare outcomes have been identified, such as "gratitude" and "empowerment." As palliative care is often associated with suffering and grief Aoun et al., 2012), identifying these outcomes may present researchers with a challenge to consider investigating outcomes that are not too obvious. It has been recognized that with a grateful attitude, people may become less fearful of death because they may have a sense that life has been well lived (Lau and Cheng, 2011). Persons with palliative care needs have also reported feeling appreciative about their accomplishments and about important people in their life (Hall et al., 2012), supporting the idea that gratitude could be an important outcome for them. Furthermore, empowerment has been defined as "a process of promoting and enhancing people's ability to meet their own needs and to mobilize the resources necessary to feel control over their lives" (Roos et al., 2016, p. 2). It has been described that a sense of control contributes to enhancing a person's dignity (Guo and Jacelon, 2014), and perceived loss of control is a risk factor for losing dignity (Monforte et al., 2018). Consequently, empowerment is an important outcome to study when caring for persons with palliative care needs. Relatives and healthcare professionals have responded about the importance of "empowering" patients (McClement et al., 2007;Johnston et al., 2012;Montross et al., 2013), while persons receiving dignity-conserving care have reported having gained "new insights" (Hall et al., 2012) and having the "motivation to achieve things" in the time they have left (Hall et al., 2013).
The findings of this review surprisingly do not include distinct outcomes of "communication," although it was studied on an individual item through the SISC S10 . Communication has been highlighted in previous studies (Johnston et al., 2015b;Werkander Harstäde et al., 2017) that have reviewed dignityconserving care actions and have indicated that it is central to this type of care. Further, as poor communication can have a negative effect on a person's dignity (Guo and Jacelon, 2014), this outcome must be considered when evaluating dignity-conserving care. Due to the lack of concrete communication outcomes in this review, an exploration of communication must in the future receive more attention and must be given equal emphasis in care and research. Not evaluating this outcome could jeopardize the delivery of high-quality care, as communication skills are required for dignity-conserving care (Johnston et al., 2017b).
In summary, researchers can use this review for guidance while aiming to evaluate dignity-conserving care. The recommendation is to use outcomes presented within each cluster theme to receive a broad overview of a person's situation.

Limitations
Integrative reviews play an important role in evidence-based practice for nursing care (Whittemore and Knafl, 2005). This study used an integrative approach to include studies with different designs and methodologies. We do not claim to have included all relevant articles on the subject, but we used four databases and performed a manual search, which provided an extensive base of articles to explore. The search strategy included many doublets, indicating saturation. Trustworthiness was enhanced by using inclusion and exclusion criteria to identify relevant studies, as well as by discussions among all researchers about the criteria. Sometimes articles did not use the term "dignity-conserving care" but instead referred to "an intervention to enhance dignity." These articles were also included as there still are not many dignity-conserving care interventions, and it was thought that they might provide valuable information.
Because our aim was not focused on designs or finding effects, a critical appraisal of articles was not accomplished. There is no agreed standard as to when to perform a critical appraisal of the quality of articles; according to Whittemore and Knafl (2005), the quality appraisal should be done if fulfilling a meaningful purpose. It is most likely that a type 2 error (where real effects cannot be found even though they, in fact, exist) was made in several of the included studies. This proves that more studies with a more robust study design and including more participants are needed if effects are to be identified. For ethical considerations (Holstein et al., 2011), articles only focusing on persons with dementia were excluded, as these persons can be considered as too frail and dignity-conserving care often includes reflective conversations requiring the ability to think clearly and to process dialogues.
Moreover, we found it challenging to assign some of the outcomes to an appropriate theme because outcomes often overlapped. This may be due to the complexity of the palliative care context; and according to Alvesson's (2017) themes in an analysis, cannot always be completely isolated.

Conclusions
Consideration of relevant outcomes is central to implementing new interventions. It is hoped that this study can be an important source for researchers evaluating dignity-conserving care, inspiring them to use a broad approach of outcomes or outcomes within "Themes regarding Overarching Dignity Issues." Over and above outcomes within "Themes related to Illness-Related Concerns," there is a need to give an equal and enhanced focus to outcomes within cluster themes "Themes related to the Dignity-Conserving Repertoire" and "Themes related to the Social Dignity Inventory" to increase or maintain the dignity of a person with palliative care needs. An increased focus on "Communication outcomes" within dignity-conserving care is highly desirable to help improve the care provided within palliative care today.
Supplementary material. The supplementary material for this article can be found at https://doi.org/10.1017/S1478951520000139