Factors Associated With Distress Related to Perceived Dignity in Patients With Rheumatic Diseases.

BACKGROUND: The loss of perceived dignity is an existential source of human suffering, described in patients with cancer and chronic diseases and hospitalized patients but rarely explored among patients with rheumatic diseases (RMDs). We recently observed that distress related to perceived dignity (DPD) was present in 26.9% of Mexican patients with different RMDs. The study aimed to investigate the factors associated with DPD. METHODS: This cross-sectional study was performed between February and September 2022. Consecutive patients with RMDs completed patient-reported outcomes (to assess mental health, disease activity/severity, disability, fatigue, quality of life [QoL], satisfaction with medical care, and family function) and had a rheumatic evaluation to assess disease activity status and comorbidity. Sociodemographic variables and disease-related and treatment-related variables were retrieved with standardized formats. DPD was defined based on the Patient Dignity Inventory score. Multivariate regression analysis was used. RESULTS: Four hundred patients were included and were representative of outpatients with RMDs, while 7.5% each were inpatients and patients from the emergency care unit. There were 107 patients (26.8%) with DPD. Past mental health-related comorbidity (Odds Ratio [OR]: 4.680 [95% Confidence Interval [CI]: 1.906-11.491]), the number of immunosuppressive drugs/patient (OR: 1.683 [95% CI: 1.015-2.791]), the physical health dimension score of the World Health Organization Quality of Life-Brief questionnaire (WHOQOL-BREF) (OR: 0.937 [95% CI: 0.907-0.967]), and the emotional health dimension score of the WHOQOL-BREF (OR: 0.895 [95% CI: 0.863-0.928]) were associated with DPD. CONCLUSIONS: DPD was present in a substantial proportion of patients with RMDs and was associated with mental health-related comorbidity, disease activity/severity-related variables, and the patient QoL.

Facing off-time mortality: Leaving a legacy.

Considering one's legacy is usual in later life but may be accentuated after receiving a serious and terminal cancer diagnosis. This may be particularly true when timing of the diagnosis is nonnormatively early, evoking the sense of losing future years of life. Acknowledging the severity of one's illness may also promote focus on legacy. We investigated the extent to which older individuals diagnosed with cancer narrated communion (i.e., loving, caring themes) when telling their legacy, including narration of aftermath concerns (i.e., concern for how others will fare after one's death). Communion was assessed in relation to individuals' potential years of life to lose and illness acknowledgment. Participants were a national sample of adults (N = 203; M = 65.80 years; 66% women; 77.94% White; 48.53% college-educated) with serious and terminal cancer receiving outpatient palliative care. They narrated legacies in semistructured interviews and completed measures of illness acknowledgment. We developed a novel construct, potential years of life to lose, calculated as the difference between chronological age and national life expectancy at birth. Coders, trained to high reliability, content-analyzed legacy narratives for communion with follow-up coding for aftermath concerns. Hierarchical regression indicated that for those with more potential years of life to lose, acknowledging the severity of their illness was critical to narrating communion-rich legacies. Similarly, aftermath concerns were common in those with the most years of life to lose who were able to acknowledge the severity of their illness. Findings affirm the psychological richness of individuals' legacies in the second half of life and highlight one way they adaptively respond to the nonnormative timing of serious and terminal cancer. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Top Ten Tips Palliative Care Clinicians Should Know About Attending to the Existential Experience.

Identifying and attending to the existential needs of persons with serious illness and their care partners are integral to whole-person palliative care (PC). Yet, many PC clinicians, due to individual factors and wider systemic barriers, are ill-prepared and under-resourced to navigate the existential dimension. In this article, written from clinical, research, and lived experiences, we offer tips to empower PC clinicians to understand, recognize, and respond to patients' and care partners' existential experiences by leveraging their existing skills, collaborating closely with colleagues, exploring their own existential experience, and implementing evidence-based interventions. We propose that by prioritizing existential care within PC, we can shift the culture of health care to better affirm the humanity of both patients and clinicians.

Intensive Caring: Reminding Families They Matter.

Families often struggle with feelings of helplessness and futility in supporting suffering loved ones. Healthcare providers face similar struggles when patients' ailments aren't readily fixable. Intensive Caring describes an approach to being with suffering, inspired by the words of Dame Cicely Saunders who said 'you matter because you are you, and you matter to the last moment of your life. Intensive Caring describes how to affirm patients matter, comprised of non-abandonment, taking an interest in the patient as a person, containing hope, guiding families towards viable opportunities, dignity affirming tone, and therapeutic humility. While originally conceived for healthcare providers, its applications for families supporting suffering loved ones remains to be explored.

Examining Moderation of Dignity Therapy Effects by Symptom Burden or Religious/Spiritual Struggles.

CONTEXT: Dignity therapy (DT) is a well-researched psychotherapeutic intervention but it remains unclear whether symptom burden or religious/spiritual (R/S) struggles moderate DT outcomes. OBJECTIVE: To explore the effects of symptom burden and R/S struggles on DT outcomes. METHODS: This analysis was the secondary aim of a randomized controlled trial that employed a stepped-wedge design and included 579 participants with cancer, recruited from six sites across the United States. Participants were ages 55 years and older, 59% female, 22% race other than White, and receiving outpatient specialty palliative care. Outcome measures included the seven-item dignity impact scale (DIS), and QUAL-E subscales (preparation for death; life completion); distress measures were the Edmonton Symptom Assessment Scale (ESAS-r) (symptom burden), and the Religious Spiritual Struggle Scale (RSS-14; R/S). RESULTS: DT effects on DIS were significant for patients with both low (P = 0.03) and moderate/high symptom burden (P = 0.001). They were significant for patients with low (P = 0.004) but not high R/S struggle (P = 0.10). Moderation effects of symptom burden (P = 0.054) and R/S struggle (P = 0.52) on DIS were not significant. DT effects on preparation and completion were not significant, neither were the moderation effects of the two distress measures. CONCLUSION: Neither baseline symptom burden nor R/S struggle significantly moderated the effect of DT on DIS in this sample. Further study is warranted including exploration of other moderation models and development of measures sensitive to effects of DT and other end-of-life psychotherapeutic interventions.

Effects of Dignity Therapy on individuals with amyotrophic lateral sclerosis: Case studies.

OBJECTIVES: To analyze the effects of Dignity Therapy (DT) on the physical, existential, and psychosocial symptoms of individuals with amyotrophic lateral sclerosis (ALS). METHODS: This is a mixed-methods case study research that used the concurrent triangulation strategy to analyze the effects of DT on 3 individuals with ALS. Data collection included 3 instances of administering validated scales to assess multiple physical symptoms, anxiety, depression, spiritual well-being, and the Patient Dignity Inventory (PDI), followed by the implementation of DT and a semi-structured interview. RESULTS: The scale results indicate that DT led to an improvement in the assessment of physical, social, emotional, spiritual, and existential symptoms according to the score results. It is worth noting that the patient with a recent diagnosis showed higher scores for anxiety and depression after DT. Regarding the PDI, the scores indicate improvements in the sense of dignity in all 3 cases, which aligns with the positive verbal reports after the implementation of DT. SIGNIFICANCE OF RESULTS: This study allowed us to analyze the effects of DT on the physical, existential, and psychosocial symptoms of individuals with ALS, suggesting the potential benefits of this approach for this group of patients. Participants reported positive effects regarding pain and fatigue, could reflect on their life trajectories, and regained their value and meaning.

Engaging Mortality: Effective Implementation of Dignity Therapy.

Background: Patients consider the life review intervention, Dignity Therapy (DT), beneficial to themselves and their families. However, DT has inconsistent effects on symptoms and lacks evidence of effects on spiritual/existential outcomes. Objective: To compare usual outpatient palliative care and chaplain-led or nurse-led DT for effects on a quality-of-life outcome, dignity impact. Design/Setting/Subjects: In a stepped-wedge trial, six sites in the United States transitioned from usual care to either chaplain-led or nurse-led DT in a random order. Of 638 eligible cancer patients (age ≥55 years), 579 (59% female, mean age 66.4 ± 7.4 years, 78% White, 61% stage 4 cancer) provided data for analysis. Methods: Over six weeks, patients completed pretest/posttest measures, including the Dignity Impact Scale (DIS, ranges 7-35, low-high impact) and engaged in DT+usual care or usual care. They completed procedures in person (steps 1-3) or via Zoom (step 4 during pandemic). We used multiple imputation and regression analysis adjusting for pretest DIS, study site, and step. Results: At pretest, mean DIS scores were 24.3 ± 4.3 and 25.9 ± 4.3 for the DT (n = 317) and usual care (n = 262) groups, respectively. Adjusting for pretest DIS scores, site, and step, the chaplain-led (ß = 1.7, p = 0.02) and nurse-led (ß = 2.1, p = 0.005) groups reported significantly higher posttest DIS scores than usual care. Adjusting for age, sex, race, education, and income, the effect on DIS scores remained significant for both DT groups. Conclusion: Whether led by chaplains or nurses, DT improved dignity for outpatient palliative care patients with cancer. This rigorous trial of DT is a milestone in palliative care and spiritual health services research. clinicaltrials.gov: NCT03209440.

Top Ten Tips Palliative Care Clinicians Should Know About Dignity-Conserving Practice.

The acknowledgment and promotion of dignity is commonly viewed as the cornerstone of person-centered care. Although the preservation of dignity is often highlighted as a key tenet of palliative care provision, the concept of dignity and its implications for practice remain nebulous to many clinicians. Dignity in care encompasses a series of theories describing different forms of dignity, the factors that impact them, and strategies to encourage dignity-conserving care. Different modalities and validated instruments of dignity in care have been shown to lessen existential distress at the end of life and promote patient-clinician understanding. It is essential that palliative care clinicians be aware of the impacts of dignity-related distress, how it manifests, and common solutions that can easily be adapted, applied, and integrated into practice settings. Dignity-based constructs can be learned as a component of postgraduate or continuing education. Implemented as a routine component of palliative care, they can provide a means of enhancing patient-clinician relationships, reducing bias, and reinforcing patient agency across the span of serious illness. Palliative care clinicians-often engaging patients, families, and communities in times of serious illness and end of life-wield significant influence on whether dignity is intentionally integrated into the experience of health care delivery. Thus, dignity can be a tangible, actionable, and measurable palliative care goal and outcome. This article, written by a team of palliative care specialists and dignity researchers, offers 10 tips to facilitate the implementation of dignity-centered care in serious illness.

The meaning of dignity in care during the COVID-19 pandemic: a qualitative study in acute and intensive care.

BACKGROUND: The pandemic Era has forced palliative care professionals to use a dignity-in-care approach in different settings from the classic ones of palliative care: acute and intensive care. We explored the meanings of dignity for patients, their family members, and clinicians who have experienced COVID-19 in the acute and intensive care setting. METHODS: A qualitative, prospective study by means of semi-structured interviews with patients hospitalized for COVID-19, family members, and clinicians who care for them. FINDINGS: Between March 2021 and October 2021, we interviewed 16 participants: five physicians, three nurses, and eight patients. None of the patients interviewed consented for family members to participate: they considered it important to protect them from bringing the painful memory back to the period of their hospitalization. Several concepts and themes arose from the interviews: humanity, reciprocity, connectedness, and relationship, as confirmed by the literature. Interestingly, both healthcare professionals and patients expressed the value of informing and being informed about clinical conditions and uncertainties to protect dignity. CONCLUSIONS: Dignity should be enhanced by all healthcare professionals, not only those in palliative care or end-of-life but also in emergency departments.

Response to Medical Assistance in Dying, Palliative Care, Safety, and Structural Vulnerability.

This report, signed by >170 scholars, clinicians, and researchers in palliative care and related fields, refutes the claims made by the previously published Medical Assistance in Dying, Palliative Care, Safety, and Structural Vulnerability. That report attempted to argue that structural vulnerability was not a concern in the provision of assisted dying (AD) by a selective review of evidence in medical literature and population studies. It claimed that palliative care has its own safety concerns, and that "misuse" of palliative care led to reports of wrongful death. We and our signatories do not feel that the conclusions reached are supported by the evidence provided in the contested report. The latter concluded that the logical policy response would be to address the root causes of structural vulnerability rather than restrict access to AD. Our report, endorsed by an international community of palliative care professionals, believes that public policy should aim to reduce structural vulnerability and, at the same time, respond to evidence-based cautions about AD given the potential harm.

"It took so much of the humanness away": Health care professional experiences providing care to dying patients during COVID-19.

COVID-19 has affected healthcare in profound and unprecedented ways, distorting the experiences of patients and healthcare professionals (HCPs) alike. One area that has received little attention is how COVID-19 affected HCPs caring for dying patients. The goal of this study was to examine the experiences of HCPs working with dying patients during the COVID-19 pandemic. Between July 2020-July 2021, we recruited HCPs (N = 25) across Canada. We conducted semi-structured interviews, using a qualitative study design rooted in constructivist grounded theory methodology. The core themes identified were the impact of the pandemic on care utilization, the impact of infection control measures on provision of care, moral distress in the workplace, impact on psychological wellbeing, and adaptive strategies to help HCPs manage emotions and navigate pandemic imposed changes. This is the first Canadian study to qualitatively examine the experiences of HCPs providing care to dying patients during the COVID-19 pandemic. Implications include informing supportive strategies and shaping policies for HCPs providing palliative care.

Neuroticism as a moderator of symptom-related distress and depression in 4 noncancer end-of-life populations.

OBJECTIVES: Neuroticism is a significant predictor of adverse psychological outcomes in patients with cancer. Less is known about how this relationship manifests in those with noncancer illness at the end-of-life (EOL). The objective of this study was to examine the impact of neuroticism as a moderator of physical symptoms and development of depression in patients with amyotrophic lateral sclerosis (ALS), chronic obstructive pulmonary disease (COPD), end-stage renal disease (ESRD), and frailty in the last 6 months of life. METHODS: We met this objective using secondary data collected in the Dignity and Distress across End-of-Life Populations study. The data included N = 404 patients with ALS (N = 101), COPD (N = 100), ESRD (N = 101), and frailty (N = 102) in the estimated last 6 months of life, with a range of illness-related symptoms, assessed longitudinally at 2 time points. We examined neuroticism as a moderator of illness-related symptoms at Time 1 (∼6 months before death) and depression at Time 2 (∼3 months before death) using ordinary least squares regression. RESULTS: Results revealed that neuroticism significantly moderated the relationship between the following symptoms and depression measured 3 months later: drowsiness, fatigue, shortness of breath, wellbeing (ALS); drowsiness, trouble sleeping, will to live, activity (COPD); constipation (ESRD); and weakness and will to live (frailty). SIGNIFICANCE OF RESULTS: These findings suggest that neuroticism represents a vulnerability factor that either attenuates or amplifies the relationship of specific illness and depressive symptoms in these noncancer illness groups at the EOL. Identifying those high in neuroticism may provide insight into patient populations that require special care at the EOL.

The Validation of the Chinese (Cantonese) Version of the Patient Dignity Inventory in a Hong Kong Palliative Care Setting.

Context: To assess and address a patient's dignity and dignity-related distress would greatly benefit patients who have advanced stage disease. The Patient Dignity Inventory (PDI) allows clinicians to identify sources of dignity-related distress for patients. The PDI should be evaluated for use in a local Chinese setting. Objectives: To validate the Patient Dignity Inventory Hong Kong-Chinese (Cantonese) version (PDI-HK) and assess the psychometric properties in patients in an inpatient palliative setting in Hong Kong. Method: The English version of the PDI was translated and back translated, then reviewed by a panel including a clinician, clinical psychologist, and nurse clinician. Recruited patients would complete the PDI-HK, the Chinese version of Hospital Anxiety and Depression Scale (HADS), the McGill Quality of Life Questionnaire-Hong Kong (MQOL-HK), and the Edmonton Symptom Assessment Scale. Psychometric properties including internal consistency, concurrent validity, test-retest reliability, and factor analysis were tested. Results: A total of 97 consecutive patients were recruited into the study. The mean PDI score was 51.85 (range 25-102). Cronbach's alpha was 0.953 (p < 0.001). Concurrent validity with the HADS and MQOL-HK questionnaire was established. Factor analysis showed four factors, namely Existential Distress, Physical Change and Function, Psychological Distress, and Support. These were similar to previous PDI validation studies. Conclusion: The PDI was translated into Chinese (Cantonese) and applied in an inpatient palliative care unit in Hong Kong, with adequate validity. The PDI-HK version can be further used in a larger Chinese population to assess and address dignity-related issues.

The Italian versions of the This Is ME Questionnaire and the Patient Dignity Question: Understanding personhood and supporting dignity in patients with terminal cancer.

OBJECTIVES: Patients with cancer at the end of life may suffer from high psychological distress, a sense of demoralization, and a lack of dignity related to their medical condition. The This Is ME (TIME) Questionnaire and the Patient Dignity Question (PDQ) are clinical tools developed to achieve comprehensive and personalized patient care and to deepen our understanding of personhood. The objective of this study was to translate and validate the TIME Questionnaire, which contains the PDQ, into Italian to evaluate patient satisfaction of the Italian version of these tools and to identify essential themes elicited by the tools. METHODS: The validation process consisted of a forward and back translation stage, data collection from a sample of 60 patients with terminal cancer, and a final consultation with a panel of experts to identify patient themes using the results of the tool. RESULTS: Overall, participants felt that the PDQ/TIME questionnaire captured their essence as a person, allowed them to express their values and beliefs, and helped the health care professionals (HCP) to take better care of them. Content analysis identified "family relationships," "global pain," and "family roles and accomplishments" as being of most importance to patients. SIGNIFICANCE OF RESULTS: The Italian versions of the PDQ/TIME Questionnaire are clear, precise, understandable, and focused on understanding personhood in patients with advanced cancer. These tools should be used to proactively enhance patient-caregiver and patient-HCP relationships and to develop new perspectives of patient care focused on the critical dimension of personhood.

Cost considerations for implementing dignity therapy in palliative care: Insights and implications.

OBJECTIVES: Despite the clinical use of dignity therapy (DT) to enhance end-of-life experiences and promote an increased sense of meaning and purpose, little is known about the cost in practice settings. The aim is to examine the costs of implementing DT, including transcriptions, editing of legacy document, and dignity-therapists' time for interviews/patient's validation. METHODS: Analysis of a prior six-site, randomized controlled trial with a stepped-wedge design and chaplains or nurses delivering the DT. RESULTS: The mean cost per transcript was $84.30 (SD = 24.0), and the mean time required for transcription was 52.3 minutes (SD = 14.7). Chaplain interviews were more expensive and longer than nurse interviews. The mean cost and time required for transcription varied across the study sites. The typical total cost for each DT protocol was $331-$356. SIGNIFICANCE OF RESULTS: DT implementation costs varied by provider type and study site. The study's findings will be useful for translating DT in clinical practice and future research.

Perceived dignity is an unrecognized source of emotional distress in patients with rheumatic diseases: Results from the validation of the Mexican version of the Patient Dignity Inventory.

INTRODUCTION: Dignity has rarely been explored in patients with rheumatic diseases (RMDs), which contrasts with patients´ observations that dignity is a relevant area for research focus. The study's primary objective was to adapt and validate the Mexican version of the Patient Dignity Inventory (PDI-Mx) in patients with RMDs, and to estimate the proportion of patients with distress related to perceived dignity (DPD) assessed with the PDI-Mx. METHODS: This cross-sectional study was developed in 2 phases. Phase 1 consisted of pilot testing and questionnaire feasibility (n = 50 patients), PDI-Mx content validity (experts' agreement), construct validity (exploratory factor analysis), discriminant validity (Heterotrait-Monotrait correlations' rate [HTMT]), criterion validity (Spearman correlations) and PDI-Mx reliability with internal consistency (Cronbach's alpha) and test-retest (intra-class correlation coefficients [ICC]) in 220 additional outpatients (among whom 30 underwent test-retest). Phase 2 consisted of quantifying DPD (PDI-Mx cut-off ≥54.4) in 290 outpatients with RMDs. RESULTS: Overall, patients were representative of typical outpatients with RMDs from a National tertiary care level center. The 25-item PDI-Mx was found feasible, valid (experts' agreement ≥82%; a 4-factor structure accounted for 68.7% of the total variance; HTMT = 0.608; the strength of the correlations was moderate to high between the PDI-Mx, the Depression, Anxiety, and Stress scale dimensions scores, and the Health Assessment Questionnaire Disability Index score) and reliable (Cronbach's ɑ = 0.962, ICC = 0.939 [95%CI = 0.913-0.961]). DPD was present in 78 patients (26.9%). CONCLUSIONS: The PDI-Mx questionnaire showed good psychometric properties for assessing DPD in our population. Perceived dignity in patients with RMDs might be an unrecognized source of emotional distress.

Developing a question prompt list for family caregivers concerning the progression and palliative care needs of nursing home residents living with dementia.

Objective: Communication around a palliative approach to dementia care often is problematic or occurs infrequently in nursing homes (NH). Question prompt lists (QPLs), are evidence-based lists designed to improve communication by facilitating discussions within a specific population. This study aimed to develop a QPL concerning the progression and palliative care needs of residents living with dementia. Methods: A mixed-methods design in 2 phases. In phase 1, potential questions for inclusion in the QPL were identified using interviews with NH care providers, palliative care clinicians and family caregivers. An international group of experts reviewed the QPL. In phase 2, NH care providers and family caregivers reviewed the QPL assessing the clarity, sensitivity, importance, and relevance of each item. Results: From 127 initial questions, 30 questions were included in the first draft of the QPL. After review by experts, including family caregivers, the QPL was finalized with 38 questions covering eight content areas. Conclusion: Our study has developed a QPL for persons living with dementia in NHs and their caregivers to initiate conversations to clarify questions they may have regarding the progression of dementia, end of life care, and the NH environment. Further work is needed to evaluate its effectiveness and determine optimal use in clinical practice. Innovation: This unique QPL is anticipated to facilitate discussions around dementia care, including self-care for family caregivers.

Fractured Personhood, Suicide, and Lessons from Those Nearing Death.

Sometimes dying patients teach us things that apply across the entirety of the life cycle. There is a significant literature indicating that some patients toward end of life covet an earlier, or hastened, death. Many of the things that move patients toward a wish to die can be subsumed under the rubric of fractured personhood. This idea describes a state of brokenness, causing people to feel they are no longer the person they once were, and that the person they have become is no longer worthy of living. This article explores the idea of fractioned personhood, and how this concept might inform our understanding of self-harm and suicide within the general population.

Feasibility and Acceptability of a Virtual "Coping with Brain Fog" Intervention for Improving Cognitive Functioning in Young Adults with Cancer.

Purpose: Cancer-related cognitive deficits (CRCDs) are common among young adults (YAs) (ages: 18-39) with cancer and can be debilitating. We aimed to determine the feasibility and acceptability of a virtual Coping with Brain Fog intervention among YAs with cancer. Our secondary aims were to explore the intervention's effect on cognitive functioning and psychological distress. Methods: This prospective feasibility study involved eight weekly, 90-minute virtual group sessions. Sessions focused on psychoeducation on CRCD, memory skills, task management, and psychological well-being. The primary outcomes were feasibility and acceptability of the intervention evaluated through attendance (>60% not missing >2 consecutive sessions) and satisfaction (Client Satisfaction Questionnaire [CSQ] score >20). Secondary outcomes included the following: cognitive functioning (Functional Assessment of Cancer Therapy-Cognitive Function [FACT-Cog] Scale) and symptoms of distress (Patient-Reported Outcomes Measurement Information System [PROMIS] Short Form-Anxiety/Depression/Fatigue) and participants' experiences using semistructured interviews. Paired t-tests and summative content analysis were used for quantitative and qualitative data analyses. Results: Twelve participants (five male, mean age = 33 years) were enrolled. All but one participant met feasibility criteria of not missing >2 consecutive sessions (11/12 = 92%). The mean CSQ score was 28.1 (standard deviation 2.5). Significant improvement in cognitive function as measured by FACT-Cog Scale was observed postintervention (p < 0.05). Ten participants adopted strategies from the program to combat CRCD, and eight reported CRCD symptom improvement. Conclusion: A virtual Coping with Brain Fog intervention is feasible and acceptable for the symptoms of CRCD among YAs with cancer. The exploratory data indicate subjective improvement in cognitive function, and will inform the design and implementation of a future clinical trial. ClinicalTrials.gov Registration: NCT05115422.