Dignity Therapy (DT) is a brief psychotherapeutic intervention designed to address the psychosocial and spiritual needs of terminally ill patients. Research demonstrates DT’s efficacy in reducing dignity-related distress and alleviating psychosocial symptoms like depression and anxiety in terminally ill patients. Its application has been extended to nonterminal patients with chronic conditions, mental health challenges, and children nearing the end of life, with promising results. DT also benefits families and caregivers, promoting emotional resilience and facilitating grieving. However, the potential for proxy applications, such as posthumous DT (p-DT) – conducted by relatives after a patient’s death or on behalf of individuals unable to participate – remains underexplored.

A case series report.

This case series examines 3 relatives who engaged in p-DT, highlighting its feasibility and potential benefits.

Findings suggest p-DT may serve as a valuable tool for bereavement support, warranting further research to expand its scope and accessibility.

Patient dignity is a key concern during end-of-life care. Dignity Therapy is a person-centered intervention that has been found to support patient dignity interviews focused on narrating patients’ life stories and legacies. However, mechanisms that may affect utility of the Dignity Therapy have been little studied. In this study, we evaluate whether the extent to which patients are more communal in their interviews acts as a mechanism for increased patient dignity.

We analyzed the written transcripts from Dignity Therapy interviews with 203 patients with cancer over the age of 55 receiving outpatient palliative care (M = 65.80 years; SD = 7.45 years, Range = 55–88 years; 66% women). Interviews followed core questions asking patients about their life story and legacy. We used content-coding to evaluate the level of communion narrated in each interview, and mediation analyses to determine whether communion affected dignity impact.

Mediation analyses indicated that the extent to which patients narrated communion in their interview had a significant direct effect on post-test Dignity Impact. Communion partially mediated the effect of pre-test on post-test Dignity Impact. For both the life story and legacy segments of the session, narrating communion had a direct effect on post-test Dignity Impact.

Narrating communion serves as a mechanism for enhancing patient dignity during Dignity Therapy. Providers may consider explicitly guiding patients to engage in, elaborate on, communal narration to enhance therapeutic utility. In addition, encouraging patients with advanced illness to positively reflect on relationships in life may improve patient dignity outcomes in palliative and end-of-life care.

Dignity Therapy (DT) is a brief form of psychotherapy that helps people with life-threatening illnesses and their loved ones cope with emotional pain and demoralization. Unfortunately, not everyone has the opportunity to receive DT during their lifetime. Posthumous Dignity Therapy (PDT) was then devised to be administered to bereaved family members. However, PDT has not yet been validated or studied in the specific cultural and linguistic context of Portuguese-Brazilians. This study aims to fill this gap by validating PDT for the Portuguese (Brazilian) context.

Using Beaton’s methodology, including the processes of translation, synthesis, back-translation, evaluation by an expert committee, and pre-testing, the PDT Schedule of Questions underwent validation and cultural adaptation. The research was conducted in a Palliative Care Unit at a tertiary cancer hospital in Brazil.

The questionnaire was translated, back-translated, and evaluated by the panel of experts, obtaining a Content Validity Index of 0.97. During the pretest phase, it was observed that the participant’s interview method needed to be changed from remote (telephone or videoconference) to in-person. Additionally, it was necessary to modify some terms related to death and dying, as they caused discomfort to the participants. As a result of this process, the PDT was modified, and adapted to the Brazilian cultural and linguistic reality.

This validation study will be significant for future DT research from the caregivers’ perspective and for projects aiming to implement this therapeutic modality in palliative care units, in addition to helping participants remember their loved ones better by providing a tangible legacy document that assists them emotionally and materially in coping with the grieving process.

To analyze the effects of Dignity Therapy (DT) on the physical, existential, and psychosocial symptoms of individuals with amyotrophic lateral sclerosis (ALS).

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.

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.

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.

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.

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.

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.

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.

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.

Analysis of a prior six-site, randomized controlled trial with a stepped-wedge design and chaplains or nurses delivering the DT.

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.

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 (DT) was developed to help patients at their end of life to reframe and give meaning to their illness process. The DT question protocol focuses on personhood and important aspects of the individual’s life. This study aimed to translate and culturally adapt the Dignity Therapy Question Protocol (DTQP) to Brazilian Portuguese.

This was a descriptive and methodological study, and cross-cultural adaptation process comprised 4 stages: (1) translation and synthesis of English original version protocol into Brazilian Portuguese, (2) back translation, (3) experts committee, and (4) pretest.

The Portuguese version of the DTQP – Protocolo de Perguntas sobre Terapia da Dignidade – demonstrated a content validity index of 1 for all equivalences. The initial sample consisted of 41 participants (9 [21.9%] refused to participate and 1 [2.43%] dropped out). The pretest was applied to 30 (73.1%) participants, 15 of them were female and the mean age was 53.4 years. The final version consisted of 10 questions that were approved by the original authors who affirmed that the DTQP Brazilian Portuguese version maintained the original English characteristics.

The Brazilian cultural adaptation of the DTQP was well understood by patients. It will be very useful in palliative care clinical practice for patients nearing end of life. The adapted version to Brazilian Portuguese will facilitate future studies using the DTQP.

Dignity therapy (DT) is a guided process conducted by a health professional for reviewing one's life to promote dignity through the illness process. Empathic communication has been shown to be important in clinical interactions but has yet to be examined in the DT interview session. The Empathic Communication Coding System (ECCS) is a validated, reliable coding system used in clinical interactions. The aims of this study were (1) to assess the feasibility of the ECCS in DT sessions and (2) to describe the process of empathic communication during DT sessions.

We conducted a secondary analysis of 25 transcripts of DT sessions with older cancer patients. These DT sessions were collected as part of larger randomized controlled trial. We revised the ECCS and then coded the transcripts using the new ECCS-DT. Two coders achieved inter-rater reliability (κ = 0.84) on 20% of the transcripts and then independently coded the remaining transcripts.

Participants were individuals with cancer between the ages of 55 and 75. We developed the ECCS-DT with four empathic response categories: acknowledgment, reflection, validation, and shared experience. We found that of the 235 idea units, 198 had at least one of the four empathic responses present. Of the total 25 DT sessions, 17 had at least one empathic response present in all idea units.

This feasibility study is an essential first step in our larger program of research to understand how empathic communication may play a role in DT outcomes. We aim to replicate findings in a larger sample and also investigate the linkage empathic communication may have in the DT session to positive patient outcomes. These findings, in turn, may lead to further refinement of training for dignity therapists, development of research into empathy as a mediator of outcomes, and generation of new interventions.

Dignity therapy (DT) is a brief, individualized intervention, which provides terminally ill patients with an opportunity to convey memories, essential disclosures, and prepare a final generativity document. DT addresses psychosocial and existential issues, enhancing a sense of meaning and purpose. Several studies have considered the legacy topics most frequently discussed by patients near the end of life. To date, no Portuguese study has done that analysis.

We conducted a qualitative analysis of 17 generativity documents derived from a randomized controlled trial (RCT). Inductive content analysis was used to identify emerging themes.

From the 39 RCT participants receiving DT, 17 gave consent for their generativity document to undergo qualitative analysis. Nine patients were female; mean age of 65 years, with a range from 46 to 79 years. Seven themes emerged: “Significant people and things”; “Remarkable moments”; “Acknowledgments”; “Reflection on the course of life”; “Personal values”; “Messages left to others”; and “Requests and last wishes”.

Generativity document analysis provides useful information for patients nearing death, including their remarkable life moments and memories, core values, concerns, and wishes for their loved ones. Being conscious of these dominant themes may allow health providers to support humanized and personalized care to vulnerable patients and their families, enhancing how professionals perceive and respond to personhood within the clinical setting.

To analyze the effect of DT on anxiety, depression, hopelessness, emotional distress, dignity-related distress, and quality of life (QoL) in a group of Mexican patients with stage IV LC undergoing active medical treatment with baseline emotional distress.

In this preliminary pretest–posttest study, patients received three sessions of DT and were evaluated with the HADS, Distress Thermometer, Patient Dignity Inventory, single-item questions, and QLQ-30.

In total, 24 out of 29 patients completed the intervention. Statistically significant improvements were found in anxiety, depression, emotional distress, hopelessness, and dignity-related distress with large effect sizes. Patients reported that DT helped them, increased their meaning and purpose in life, their sense of dignity, and their will to live, while it decreased their suffering. No changes were found in QoL.

DT was well accepted and effective in improving the emotional symptoms of LC patients with distress that were undergoing medical treatment. Although more research is warranted to confirm these results, this suggests that DT can be used in the context of Latin-American patients.

Telephone availability is integrated into our home-based palliative care team (HPCT) with the aim of helping terminally ill patients and their caregivers alleviate their physical and psychosocial suffering, in addition to the team's home visits. We aimed to compare the differences between non-callers (patients with no phone calls during the team's follow-up period) vs. callers (≥1 phone call during the team's follow-up period) across sociodemographic, clinical, physical, and psychosocial variables.

Retrospective analysis of all patients with and without phone call entries registered in our anonymized database, from October 2018 to September 2020.

We analyzed 389 patients: 58% were male, and the average age was 71 years old; 84% had malignancies, with a mean palliative performance status of 45%. The majority of patients (n = 281, 72%) made at least one phone call to HPCT. On average, a mean of 2.5 calls (SD = 3.61; range: 0–26) per patient was registered. Callers compared with non-callers more frequently lived with someone (p = 0.030), preferred home as a place to die (p = 0.039), had more doctor (p = 0.010) and nurse home visits (p = 0.006), a prolonged HPCT follow-up time (p = 0.053), along with more frequent emergency room visits (p < 0.001) and hospitalizations (p = 0.043). Moreover, those who made at least one phone call to the HPCT had a higher frequency of conspiracy of silence (p = 0.046), anxiety (p = 0.044), and lower palliative performance status (p = 0.001). No statistically significant associations or differences were found for the other variables.

Several factors seem to correlate with an increased number of phone calls, and physical suffering does not play a relevant role in triggering contacts, in contrast with psychosocial and other clinical factors.

Desire for death (DfD) is a complex and multifactorial dimension of end-of-life experience. We aimed to evaluate the prevalence of DfD and its associations, arising within the setting of a tertiary home-based palliative care (PC) unit.

Retrospective analysis of all DfD entries registered in our anonymized database from October 2018 to April 2020.

Of the 163 patients anonymously registered in our database, 122 met entry criteria; 52% were male, the average age was 69 years old; 85% had malignancies, with a mean performance status (PPS) of 56%. The prevalence of DfD was 20%. No statistical differences were observed between patients with and without DfD regarding sex, age, marital status, religion, social support, prior PC or psychological follow-up, type of diagnosis, presence of advanced directives/living will, time since diagnosis and PC team's follow-up time. Statistically significant associations were found between higher PPS scores and DfD (OR = 0.96; 95% confidence interval (CI) [0.93–0.99]); Edmonton Symptom Assessment Scale scores for drowsiness (OR = 4.05; 95% CI [1.42–11.57]), shortness of breath (OR = 3.35; 95% CI [1.09–10.31]), well-being (OR = 7.64; 95% CI [1.63–35.81]). DfD was associated with being depressed (OR = 19.24; 95% CI [3.09–+inf]); feeling anxious (OR = 11.11; 95% CI [2.51–49.29]); HADS anxiety subscale ≥11 (OR = 25.0; 95% CI [2.10–298.29]); will-to-live (OR = 39.53; 95% CI [4.85–321.96]). Patients feeling a burden were more likely to desire death (OR = 14.67; 95% CI [1.85–116.17]), as well as those who were not adapted to the disease (OR = 4.08; 95% CI [1.30–12.84]). In multivariate regression analyses predicting DfD, three independent factors emerged: higher PPS scores were associated with no DfD (aOR = 0.95; 95% CI [0.91–0.99]), while the sense of being a burden (aOR = 12.82; 95% CI [1.31–125.16]) and worse well-being (aOR = 7.72; 95% CI [1.26–47.38]) predicted DfD.

Prevalence of DfD was 20% and consistent with previous Portuguese evidence on DfD in PC inpatients. Both physical and psychosocial factors contribute to a stronger DfD.

Palliative care (PC) aims to improve patients' and families' quality of life through an approach that relieves physical, psychosocial, and spiritual suffering, although the latter continues to be under-assessed and under-treated. This study aimed to describe the prevalence of physical, psychosocial, and hope assessments documented by a PC team in the first PC consultation.

The retrospective descriptive analysis of all first PC consultations registered in our anonymized database (December 2018–January 2020), searching for written documentation regarding (1) Edmonton Symptom Assessment Scale (ESAS) physical subscale (pain, tiredness, nausea, drowsiness, appetite, shortness of breath, constipation, insomnia, and well-being), (2) the single question “Are you depressed?” (SQD), (3) the question “Do you feel anxious?” (SQA), (4) feeling a burden, (5) hope-related concerns, (6) the dignity question (DQ), and (7) will to live (WtL).

Of the 174 total of patients anonymously registered in our database, 141 PC home patients were considered for analysis; 63% were male, average age was 70 years, the majority had malignancies (82%), with a mean performance status of 52%. Evidence of written documentation was (1) ESAS pain (96%), tiredness (89%), nausea (89%), drowsiness (79%), appetite (89%), shortness of breath (82%), constipation (74%), insomnia (72%), and well-being (52%); (2) the SQD (39%); (3) the SQA (11%); (4) burden (26%); (5) hope (11%); (6) the DQ (33%); and (7) WtL (33%).

Significant differences were found between the frequencies of all documented items of the ESAS physical subscale (29%), and all documented psychosocial items (SQD + SQA + burden + DQ) (1%), hope (11%), and WtL (33%) (p = 0.0000; p = 0.0005; p = 0.0181, respectively).

There were differences between documentation of psychosocial, hope, and physical assessments after the first PC consultation, with the latter being much more frequent. Further research using multicenter data is now required to help identify barriers in assessing and documenting non-physical domains of end-of-life experience.

The Patient Dignity Question (PDQ) is a clinical tool developed with the aim of reinforcing the sense of personhood and dignity, enabling health care providers (HCPs) to see patients as people and not solely based on their illness.

To study the acceptability and feasibility of the Portuguese version of the PDQ (PDQ-PT) in a sample of palliative care patients cared for in primary care (PC).

A cross-sectional study using 20 palliative patients cared for in a PC unit. A post-PDQ satisfaction questionnaire was developed.

Twenty participants were included, 75% were male; average age was 70 years old. Patients found the summary accurate, precise, and complete; all said that they would recommend the PDQ to others and want a copy of the summary placed on their family physician's medical chart. They felt the summary heightened their sense of dignity, considered it important that HCPs have access to the summary and indicated that this information could affect the way HCPs see and care for them. The PDQ-PT's took 7 min on average to answer, and 10 min to complete the summary.

The PDQ-PT is well accepted and feasible to use with palliative patients in the context of PC and seems to be a promising tool to be implemented. Future trials are now warranted.

Dignity therapy (DT) is well established in adult populations, and it is likely that it could benefit younger people. This study aimed to adapt the adult Portuguese DT question framework for adolescents (DT-QF-Adol) (ages 10–18).

Five stages were followed: (1) the Portuguese DT-QF for adults was adapted for adolescents with the original author's collaboration, (2) an expert committee provided feedback on the adapted version, (3) an initial consensus version of the DT-QF-Adol was created, (4) expert committee consult affirmed final consensus, and (5) validation stage with a sample of 17 adolescents followed in ambulatory psychology clinic.

DT's original author endorsed the final Portuguese DT-QF-Adol, reinforcing that it captures the fundamental dimensions of DT. There was 100% agreement on the final consensus version and defined age group (10–18 years old). Twenty adolescents were invited to participate, and 17 were included after informed consent was obtained; 53% were female. The average age was 12.7 years. The interviewed adolescents reported that the DT-QF-Adol was clear, and they did not identify any ambiguity or difficulty in answering any of the questions. They assumed that this information could positively affect the way parents and friends see and cared for them, permitting others to understand their concerns and preferences. Participants felt that the DT-QF-Adol could be a good starting point for a conversation with their loved ones. Although they did not consider vital for health professionals to access their answers, they strongly felt that the DT-QF-Adol might be essential to sick adolescents and they would recommend it to others.

We developed a DT-QF of nine questions for Portuguese adolescents (DT-QF-Adol), coined Protocolo de Perguntas da Terapia da Dignidade para Adolescentes — 10–18 anos. This tool can potentially be considered a good addition for pediatric palliative care.