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.

Dignity therapy intervention fidelity: a cross-sectional descriptive study with older adult outpatients with cancer.

OBJECTIVES: Intervention fidelity is imperative to ensure confidence in study results and intervention replication in research and clinical settings. Like many brief protocol psychotherapies, Dignity Therapy lacks sufficient evidence of intervention fidelity. To overcome this gap, our study purpose was to examine intervention fidelity among therapists trained with a systematized training protocol. METHODS: For preliminary fidelity evaluation in a large multi-site stepped wedge randomized controlled trial, we analyzed 46 early transcripts of interviews from 10 therapists (7 female; 7 White, 3 Black). Each transcript was evaluated with the Revised Dignity Therapy Adherence Checklist for consistency with the Dignity Therapy protocol in terms of its Process (15 dichotomous items) and Core Principles (6 Likert-type items). A second rater independently coded 26% of the transcripts to assess interrater reliability. RESULTS: Each therapist conducted 2 to 10 interviews. For the 46 scored transcripts, the mean Process score was 12.4/15 (SD = 1.2), and the mean Core Principles score was 9.9/12 (SD = 1.8) with 70% of the transcripts at or above the 80% fidelity criterion. Interrater reliability (Cohen's kappa and weighted kappa) for all Adherence Checklist items ranged between .75 and 1.0. For the Core Principles items, Cronbach's alpha was .92. CONCLUSIONS: Preliminary findings indicate that fidelity to Dignity Therapy delivery was acceptable for most transcripts and provide insights for improving consistency of intervention delivery. The systematized training protocol and ongoing monitoring with the fidelity audit tool will facilitate consistent intervention delivery and add to the literature about fidelity monitoring for brief protocol psychotherapeutic interventions.

Description of a training protocol to improve research reproducibility for dignity therapy: an interview-based intervention.

BACKGROUND: Dignity Therapy (DT) has been implemented over the past 20 years, but a detailed training protocol is not available to facilitate consistency of its implementation. Consistent training positively impacts intervention reproducibility. OBJECTIVE: The objective of this article is to describe a detailed method for DT therapist training. METHOD: Chochinov's DT training seminars included preparatory reading of the DT textbook, in-person training, and practice interview sessions. Building on this training plan, we added feedback on practice and actual interview sessions, a tracking form to guide the process, a written training manual with an annotated model DT transcript, and quarterly support sessions. Using this training method, 18 DT therapists were trained across 6 sites. RESULTS: The DT experts' verbal and written feedback on the practice and actual sessions encouraged the trainees to provide additional attention to eight components: (1) initial framing (i.e., clarifying and organizing of the patient's own goals for creating the legacy document), (2) verifying the patient's understanding of DT, (3) gathering the patient's biographical information, (4) using probing questions, (5) exploring the patient's story thread, (6) refocusing toward the legacy document creation, (7) inviting the patient's expression of meaningful messages, and (8) general DT processes. Evident from the ongoing individual trainee mentoring was achievement and maintenance of adherence to the DT protocol. DISCUSSION: The DT training protocol is a process to enable consistency in the training process, across waves of trainees, toward the goal of maintaining DT implementation consistency. This training protocol will enable future DT researchers and clinicians to consistently train therapists across various disciplines and locales. Furthermore, we anticipate that this training protocol could be generalizable as a roadmap for implementers of other life review and palliative care interview-based interventions.

Systematic Review of Palliative Care in the Rural Setting.

BACKGROUND: Many of the world's population live in rural areas. However, access and dissemination of the advances taking place in the field of palliative care to patients living in rural areas have been limited. METHODS: We searched 2 large databases of the medical literature and found 248 relevant articles; we also identified another 59 articles through networking and a hand search of reference lists. Of those 307 articles, 39 met the inclusion criteria and were grouped into the following subcategories: intervention (n = 4), needs assessment (n = 2), program planning (n = 3), program evaluation (n = 4), education (n = 7), financial (n = 8), and comprehensive/systematic literature reviews (n = 11). RESULTS: We synthesized the current state of rural palliative care research and practice to identify important gaps for future research. Studies were conducted in the United States, Australia, Canada, Africa, Sweden, and India. Two randomized control trials were identified, both of which used telehealth approaches and had positive survival outcomes. One study demonstrated positive patient quality of life and depression outcomes. CONCLUSIONS: Research to guide rural palliative care practice is sparse. Approaches to telehealth, community- academic partnerships, and training rural health care professionals show promise, but more research is needed to determine best practices for providing palliative care to patients living in rural settings.

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.

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.

Death Anxiety and Correlates in Cancer Patients Receiving Palliative Care.

Background: Death anxiety is powerful, potentially contributes to suffering, and yet has to date not been extensively studied in the context of palliative care. Availability of a validated Death Anxiety and Distress Scale (DADDS) opens the opportunity to better assess and redress death anxiety in serious illness. Objective: We explored death anxiety/distress for associations with physical and psychosocial factors. Design: Ancillary to a randomized clinical trial (RCT) of Dignity Therapy (DT), we enrolled a convenience sample of 167 older adults in the United States with cancer and receiving outpatient palliative care (mean age 65.9 [7.3] years, 62% female, 84% White, 62% stage 4 cancer). They completed the DADDS and several measures for the stepped-wedged RCT, including demographic factors, religious struggle, dignity-related distress, existential quality of life (QoL), and terminal illness awareness (TIA). Results: DADDS scores were generally unrelated to demographic factors (including religious affiliation, intrinsic religiousness, and frequency of prayer). DADDS scores were positively correlated with religious struggle (p < 0.001) and dignity-related distress (p < 0.001) and negatively correlated with existential QoL (p < 0.001). TIA was significantly nonlinearly associated with both the total DADDS (p = 0.007) and its Finitude subscale (p ≤ 0.001) scores. There was a statistically significant decrease in Finitude subscale scores for a subset of participants who completed a post-DT DADDS (p = 0.04). Conclusions: Findings, if replicable, suggest that further research on death anxiety and prognostic awareness in the context of palliative medicine is in order. Findings also raise questions about the optimal nature and timing of spiritual and psychosocial interventions, something that might entail evaluation or screening for death anxiety and prognostic awareness for maximizing the effectiveness of care.

A national study of chaplaincy services and end-of-life outcomes.

BACKGROUND: Medicine has long acknowledged the role of chaplains in healthcare, but there is little research on the relationship between chaplaincy care and health outcomes. The present study examines the association between chaplaincy services and end-of-life care service choices. METHODS: HealthCare Chaplaincy purchased the AHA survey database from the American Hospital Association. The Dartmouth Atlas of Health Care database was provided to HealthCare Chaplaincy by The Dartmouth Institute for Health Policy & Clinical Practice, with the permission of Dartmouth Atlas Co-Principal Investigator Elliot S. Fisher, M.D., M.P.H. The Dartmouth Atlas of Health Care is available interactively on-line at http://www.dartmouthatlas.org/. Patient data are aggregated at the hospital level in the Dartmouth Atlas of Health Care. IRB approval was not sought for the project because the data are available to the public through one means or another, and neither database contains data about individual patients, i.e. all the variables are measures of hospital characteristics. We combined and analyzed data from the American Hospital Association's Annual Survey and outcome data from The Dartmouth Atlas of Health Care in a cross-sectional study of 3,585 hospitals. Two outcomes were examined: the percent of patients who (1) died in the hospital, and (2) were enrolled in hospice. Ordinary least squares regression was used to measure the association between the provision of chaplaincy services and each of the outcomes, controlling for six factors associated with hospital death rates. RESULTS AND DISCUSSION: The analyses found significantly lower rates of hospital deaths (ß = .04, p < .05) and higher rates of hospice enrollment (ß = .06, p < .001) for patients cared for in hospitals that provided chaplaincy services compared to hospitals that did not. CONCLUSIONS: The findings suggest that chaplaincy services may play a role in increasing hospice enrollment. This may be attributable to chaplains' assistance to patients and families in making decisions about care at the end-of-life, perhaps by aligning their values and wishes with actual treatment plans. Additional research is warranted.

Referral Relationship: Illuminating the Ways Palliative Care Creates a Holding Environment for Referring Clinicians.

Palliative care supports referring colleagues in multiples ways. This support to referring colleagues is not often explored in the literature, yet the psychological concept that best describes it is the holding environment. The holding environment is the relational space palliative care offers referring clinicians for processing emotions and information. Using the case of Gloria, a patient living with cancer, this article discusses ways palliative care creates a holding environment for her referring oncologist, Dr. Ko. As palliative care clinicians, we create this relational space for referring clinicians when we change the dynamic, accompany the clinician, recognize challenges, establish expectations, and share a clinical second look. This article is the sixth in a series exploring the psychological elements of palliative care.

Existential Quality of Life and Associated Factors in Cancer Patients Receiving Palliative Care.

CONTEXT: Enhancing quality of life (QoL) is a goal of palliative care. Existential QoL is an important aspect of this. OBJECTIVES: This study sought to advance our understanding of existential QoL at the end of life through examining levels of Preparation and Completion, subscales of the QUAL-E, and their associated factors. METHODS: We used data from a multi-site study of 331 older cancer patients receiving palliative care. We examined levels of Preparation and Completion and their association with demographic, religious, and medical factors, and with the Patient Dignity Inventory. RESULTS: Preparation and Completion scores were moderately high. In adjusted models, being 10 years older was associated with an increase of 0.77 in Preparation (P = 0.002). Non-white patients had higher Preparation (1.03, P = 0.01) and Completion (1.56, P = 0.02). Single patients reported Completion score 1.75 point lower than those married (P = 0.01). One-point increase in intrinsic religiousness was associated with a 0.86-point increase in Completion (P = 0.03). One-point increase in terminal illness awareness was associated with 0.75-point decrease in Preparation (P = 0.001). A 10-point increase in symptom burden was associated with a decrease of 0.55 in Preparation (P < 0.001) and a decrease of 1.0 in Completion (P < 0.001). The total Patient Dignity Inventory score and all of its subscales were negatively correlated with Preparation (r from -.26 to -.52, all P < 0.001) and Completion (r from -.18 to -.31, all P < 0.001). CONCLUSION: While most patients reported moderate to high levels of existential QoL, a subgroup reported low existential QoL. Terminal illness awareness and symptom burden may be associated with lower existential QoL.

Empathy and Attending to Patient Religion/Spirituality: Findings from a National Survey of Muslim Physicians.

Attending to patient religion and spirituality (R/S) generates controversy. Some worry that because physicians lack formal religious training they may overstep their expertise, while others argue that physicians who are attentive to patient R/S provide higher quality of care. We aimed to describe American Muslim physicians' perspectives and practices regarding R/S discussions, and how physician characteristics correlate with these.A questionnaire including measures of religiosity, empathy, and attitudes and behaviors toward R/S, was randomly administered to Islamic Medical Association of North America members.More empathetic physicians were more likely to inquire about patients' R/S, share their own religious ideas and experiences, and encourage patients in their own R/S beliefs and practices (ß = .44, p < .01). More empathetic physicians also had greater odds of encouraging discontinuation of futile life-sustaining interventions (OR 1.90, p < .05). Additionally, respondents with higher empathy had greater odds of encouraging patients at the end-of-life to seek reconciliation with God (OR 3.27, p < .001), and seek the forgiveness of those they have wronged (OR 2.48, p < .001).In the context of R/S diversity among the patient and provider population, enhancing physician empathy may be key to attending to the health-related R/S needs of patients.

Association of Race with End-of-Life Treatment Preferences in Older Adults with Cancer Receiving Outpatient Palliative Care.

Background: End-of-life discussions and documentation of preferences are especially important for older cancer patients who are at high risk of morbidity and mortality. Objective: To evaluate influence of demographic factors such as religiosity, education, income, race, and ethnicity on treatment preferences for end-of-life care. Methods: A retrospective observational study was performed on baseline data from a multisite randomized clinical trial of Dignity Therapy in 308 older cancer patients who were receiving outpatient palliative care (PC). Interviews addressed end-of-life treatment preferences, religion, religiosity and spirituality, and awareness of prognosis. End-of-life treatment preferences for care were examined, including preferences for general treatment, cardiopulmonary resuscitation (CPR), and mechanical ventilation (MV). Bivariate associations and multiple logistic regression analysis of treatment preferences with demographic and other baseline variables were conducted. Results: Our regression models demonstrated that race was a significant predictor for CPR preference and preferences for MV, although not for general treatment goals. Minority patients were more likely to want CPR and MV than whites. Men were more likely to opt for MV, although not for CPR or overall aggressive treatment, than women. Higher level of education was a significant predictor for preferences for less aggressive care at the end-of-life but not for CPR or MV. Higher level of terminal illness awareness was also a significant predictor for preferences for CPR, but not MV or aggressive care at the end-of-life. Discussion: Race was significantly associated with all three markers for aggressive care in bivariate analysis and with two out of three markers in multiple regression analysis, with minorities preferring aggressive care and whites preferring less aggressive care. Contrary to our hypothesis, income was not significantly associated with treatment preferences, whereas religion was significantly associated with all markers for aggressive care in bivariate models, but not in multiple regression models. Clinical Trial Registration Number NCT03209440.

Exploring the Psychological Aspects of Palliative Care: Lessons Learned from an Interdisciplinary Seminar of Experts.

Palliative care has been shown to help patients live well with serious illness, but the specific psychological factors that contribute to this benefit remain investigational. Although support of patient coping has emerged as a likely factor, it is unclear how palliative care helps patients to cope with serious illness. The therapeutic relationship has been proposed as a key element in beneficial patient outcomes, possibly undergirding effective patient and family coping. Understanding the distress of our patients with psychological depth requires the input of varied clinicians and thinkers. The complex conceptual model we developed draws upon the contributions of medicine, nursing, psychology, spiritual care, and social work disciplines. To elucidate these issues, we convened an interdisciplinary seminar of content experts to explore the psychological components of palliative care practice. "Healing Beyond the Cure: Exploring the Psychodynamic Aspects of Palliative Care" was held in May 2019 at Harvard University's Radcliffe Institute for Advanced Study. Over two days, the working group explored these essential elements of successful palliative care encounters through lecture and open discussion. This special report describes the key psychological aspects of palliative care that we believe underlie optimal adaptive coping in palliative care patients. We also outline key areas for further development in palliative care research, education, and clinical practice. The discussion held at this meeting became the basis for a planned series of articles on the psychological elements of palliative care that will be published in the Journal of Palliative Medicine on a monthly basis during the fall and winter of 2021-2022.

A system for interactive assessment and management in palliative care.

The availability of psychometrically sound and clinically relevant screening, diagnosis, and outcome evaluation tools is essential to high-quality palliative care assessment and management. Such data will enable us to improve patient evaluations, prognoses, and treatment selections, and to increase patient satisfaction and quality of life. To accomplish these goals, medical care needs more precise, efficient, and comprehensive tools for data acquisition, analysis, interpretation, and management. We describe a system for interactive assessment and management in palliative care (SIAM-PC), which is patient centered, model driven, database derived, evidence based, and technology assisted. The SIAM-PC is designed to reliably measure the multiple dimensions of patients' needs for palliative care, and then to provide information to clinicians, patients, and the patients' families to achieve optimal patient care, while improving our capacity for doing palliative care research. This system is innovative in its application of the state-of-the-science approaches, such as item response theory and computerized adaptive testing, to many of the significant clinical problems related to palliative care.

Applying a family systems lens to proxy decision making in clinical practice and research.

When patients are incapacitated and face serious illness, family members must make medical decisions for the patient. Medical decision sciences give only modest attention to the relationships among patients and their family members, including impact that these relationships have on the decision-making process. A review of the literature reveals little effort to systematically apply a theoretical framework to the role of family interactions in proxy decision making. A family systems perspective can provide a useful lens through which to understand the dynamics of proxy decision making. This article considers the mutual impact of family systems on the processes and outcomes of proxy decision making. The article first reviews medical decision science's evolution and focus on proxy decision making and then reviews a family systems approach, giving particular attention to Rolland's Family Systems Illness Model. A case illustrates how clinical practice and how research would benefit from bringing family systems thinking to proxy decisions. We recommend including a family systems approach in medical decision science research and clinical practices around proxy decisions making. We propose that clinical decisions could be less conflicted and less emotionally troubling for families and clinicians if family systems approaches were included. This perspective opens new directions for research and novel approaches to clinical care. (PsycINFO Database Record

"And Yet It Was a Blessing": The Case for Existential Maturity.

We are interested in the kind of well-being that can occur as a person approaches death; we call it "existential maturity." We describe a conceptual model of this state that we felt was realized in an individual case, illustrating the state by describing the case. Our goal is to articulate a generalizable, working model of existential maturity in concepts and terms taken from fundamentals of psychodynamic theory. We hope that a recognizable case and a model-based way of thinking about what was going on can both help guide care that fosters existential maturity and stimulate more theoretical modeling of the state.

Assessment instruments.

Assessment is the undergirding of palliative care and of geriatrics care. Both disciplines insist on a comprehensive assessment that includes personal and social aspects of the patient's illness experience. At the same time, both face challenges due to the amount of time and skill needed to encompass such a broad scope and the often heavy illness burden of the patients, which makes interaction stressful or difficult. This article examines question-based assessment instruments in palliative care for elders. Important in all aspects of medicine, reliance on verbal assessments is of special importance in palliative care.

The price of palliative care: toward a complete accounting of costs and benefits.

In this article, currently accepted standards for cost-benefit analysis of health care interventions are outlined, and a framework to evaluate palliative care within these standards is provided. Recent publications on the economic implications of palliative care are reviewed, which are only the "tip of the iceberg" of the potential costs and benefits. Using this framework, the authors offer guidelines for performing comprehensive cost-benefit analyses of palliative care and conclude that many of the issues beneath the surface may be substantial and deserving of closer scrutiny. Methods for gathering relevant cost-benefit information are detailed, along with potential obstacles to implementation. This approach is applicable to palliative care in general, including palliative care for elders.

Talking with terminally ill patients and their caregivers about death, dying, and bereavement: is it stressful? Is it helpful?

BACKGROUND: Discussing end-of-life issues with terminally ill patients is often considered distressing and harmful. This study was conducted to assess whether interviewing terminally ill patients and their caregivers about death, dying, and bereavement is stressful and/or helpful. METHODS: Patients from 6 sites in the United States who were estimated to have 6 months or less to live were interviewed in person and reinterviewed 2 to 6 months later. Their caregivers were interviewed separately. At the end of the interviews, patients and caregivers were asked how stressful and how helpful the interview had been. Of 1131 eligible patients, 988 (87.4%) were interviewed, and of 915 eligible caregivers, 893 (97.6%) were interviewed. RESULTS: At the end of the first interview, 1.9% of the patients reported having experienced a great deal of stress, 7.1% some stress, and 88.7% little or no stress from the interview. Among the caregivers, 1.5% reported a great deal of stress, 8.4% some stress, and 89.7% little or no stress. Slightly more stress was reported to have been caused by the reinterview. Overall, 16.9% of the patients reported the initial interview as very helpful, 29.6% as somewhat helpful, and 49.6% as offering little or no help. Among the caregivers, 19.1% reported the initial interview as very helpful, 34.3% as somewhat helpful, and 44.9% as offering little or no help. The reported helpfulness of the second interview was slightly less. Patients experiencing pain (odds ratio [OR], 1.26; 95% confidence interval [CI], 1.02-1.56), more personal meaning in dying (OR, 3.05; 95% CI, 2.02-4.59), and less ease with talking about the end of life (OR, 1.32; 95% CI, 1.09-1.60) were significantly more likely to report stress. Patients who were from an ethnic minority (OR, 1.85; 95% CI, 1.31-2.63), anxious about the end of their life (OR, 1.39; 95% CI 1.16-1.67), more spiritual (OR, 1.30; 95% CI, 1.06-1.61), and serene (OR, 1.25; 95% CI, 1.08-1.45) were significantly more likely to report the interview helpful. There was no relationship between stress and helpfulness. CONCLUSIONS: Terminally ill patients and their caregivers can discuss death, dying, and bereavement in a structured interview with minimal stress and report that the interview was helpful. Institutional review boards should not preemptively restrict surveys with terminally ill patients without reliable evidence that they will be stressful or otherwise harmful.