The first casualty of COVID-19 for patients nearing death was human dignity: Understanding the experience of palliative care patients during the COVID-19 pandemic.

The COVID-19 pandemic changed the way people lived, but also the way they died. It accentuated the physical, psychological, social, and spiritual vulnerabilities of patients approaching death. This study explored the lived experience of palliative inpatients during the pandemic. We conducted interviews with 22 palliative inpatients registered in a Canadian urban palliative care program, aimed to uncover how the pandemic impacted participants' experiences of approaching end-of-life. The reflexive thematic analysis revealed 6 themes: putting off going into hospital, the influence of the pandemic on hospital experience, maintaining dignity in care, emotional impact of nearing death, making sense of end-of-life circumstances and coping with end-of-life. Findings highlight the vulnerability of patients approaching death, and how that was accentuated during the pandemic. Findings reveal how the pandemic strained, threatened, and undermined human connectedness. These lived experiences of palliative inpatients offer guidance for future pandemic planning and strategies for providing optimal palliative care.

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.

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.

The impact of early palliative care on the quality of life of patients with advanced pancreatic cancer: The IMPERATIVE case-crossover study.

PURPOSE: Pancreatic cancer is a lethal disease. Many patients experience a heavy burden of cancer-associated symptoms and poor quality of life (QOL). Early palliative care alongside standard oncologic care results in improved QOL and survival in some cancer types. The benefit in advanced pancreatic cancer (APC) is not fully quantified. METHODS: In this prospective case-crossover study, patients ≥ 18 years old with APC were recruited from ambulatory clinics at a tertiary cancer center. Patients underwent a palliative care consultation within 2 weeks of registration, with follow up visits every 2 weeks for the first month, then every 4 weeks until week 16, then as needed. The primary outcome was change in QOL between baseline (BL) and week 16, measured by Functional Assessment of Cancer Therapy - hepatobiliary (FACT-Hep). Secondary outcomes included symptom control (ESAS-r), depression, and anxiety (HADS, PHQ-9) at week 16. RESULTS: Of 40 patients, 25 (63%) were male, 28 (70%) had metastatic disease, 31 (78%) had ECOG performance status 0-1, 31 (78%) received chemotherapy. Median age was 70. Mean FACT-hep score at BL was 118.8, compared to 125.7 at week 16 (mean change 6.89, [95%CI (-1.69-15.6); p = 0.11]). On multivariable analysis, metastatic disease (mean change 15.3 [95%CI (5.3-25.2); p = 0.004]) and age < 70 (mean change 12.9 [95%CI (0.5-25.4); p = 0.04]) were associated with improved QOL. Patients with metastatic disease had significant improvement in symptom burden (mean change -7.4 [95%CI (-13.4 to -1.4); p = 0.02]). There was no difference in depression or anxiety from BL to week 16. CONCLUSION: Palliative care should be integrated early in the journey for patients with APC, as it can improve QOL and symptom burden. TRIAL REGISTRATION: Clinicaltrials.gov identifier: NCT03837132.

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.

"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.

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.

Translation and cross-cultural adaptation of the Dignity Therapy Question Protocol to Brazilian Portuguese.

OBJECTIVES: 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. METHODS: 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. RESULTS: 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. SIGNIFICANCE OF RESULTS: 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.

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.

"Hello. May I speak with someone, please? It's not about my physical pain.": A retrospective study about the factors associated with phone calls to a Portuguese home-based palliative care team.

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

Dignity therapy in Mexican lung cancer patients with emotional distress: Impact on psychological symptoms and quality of life.

Lung cancer (LC) is the most frequent and deadly neoplasm in the world, and patients have shown a tendency to have more emotional distress than other cancer populations. Dignity Therapy (DT) is a brief intervention aimed to improve emotional well-being in patients facing life-threatening illness. OBJECTIVE: 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. METHOD: 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. RESULTS: 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. SIGNIFICANCE OF RESULTS: 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.

Empathic communication in dignity therapy: Feasibility of measurement and descriptive findings.

OBJECTIVE: 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. METHODS: 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. RESULTS: 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. SIGNIFICANCE OF RESULTS: 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.

A Portuguese trial using dignity therapy for adults who have a life-threatening disease: Qualitative analysis of generativity documents.

OBJECTIVES: 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. METHOD: 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. RESULTS: 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". SIGNIFICANCE OF RESULTS: 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.

The desire for death in Portuguese home-care palliative patients: Retrospective analysis of the prevalence and associated factors.

OBJECTIVE: 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. METHOD: Retrospective analysis of all DfD entries registered in our anonymized database from October 2018 to April 2020. RESULTS: 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. SIGNIFICANCE OF RESULTS: 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.

"Truly holistic?" Differences in documenting physical and psychosocial needs and hope in Portuguese palliative patients.

OBJECTIVE: 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. METHOD: 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). RESULTS: 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). SIGNIFICANCE OF RESULTS: 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.

Healthcare providers perspectives on compassion training: a grounded theory study.

BACKGROUND: There is little concrete guidance on how to train current and future healthcare providers (HCPs) in the core competency of compassion. This study was undertaken using Straussian grounded theory to address the question: "What are healthcare providers' perspectives on training current and future HCPs in compassion?" METHODS: Fifty-seven HCPs working in palliative care participated in this study, beginning with focus groups with frontline HCPs (n = 35), followed by one-on-one interviews with HCPs who were considered by their peers to be skilled in providing compassion (n = 15, three of whom also participated in the initial focus groups), and end of study focus groups with study participants (n = 5) and knowledge users (n = 10). RESULTS: Study participants largely agreed that compassionate behaviours can be taught, and these behaviours are distinct from the emotional response of compassion. They noted that while learners can develop greater compassion through training, their ability to do so varies depending on the innate qualities they possess prior to training. Participants identified three facets of an effective compassion training program: self-awareness, experiential learning and effective and affective communication skills. Participants also noted that healthcare faculties, facilities and organizations play an important role in creating compassionate practice settings and sustaining HCPs in their delivery of compassion. CONCLUSIONS: Providing compassion has become a core expectation of healthcare and a hallmark of quality palliative care. This study provides guidance on the importance, core components and teaching methods of compassion training from the perspectives of those who aim to provide it-Healthcare Providers-serving as a foundation for future evidence based educational interventions.

Portuguese Patient Dignity Question: A cross-sectional study of palliative patients cared for in primary care.

INTRODUCTION: 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. OBJECTIVE: 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). METHOD: A cross-sectional study using 20 palliative patients cared for in a PC unit. A post-PDQ satisfaction questionnaire was developed. RESULTS: 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. SIGNIFICANCE OF RESULTS: 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.

Adapting the Portuguese dignity question framework for adolescents: ages 10-18.

OBJECTIVE: 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). METHOD: 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. RESULTS: 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. SIGNIFICANCE OF RESULTS: 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.

Psychotherapeutic Considerations for Patients With Terminal Illness.

Dignity has gained increasing attention as a vital component of quality of life and quality of end-of-life care. This article reviews psychological, spiritual, existential, and physical issues facing patients at the end of life as well as practical considerations in providing therapy for this population. The authors reviewed several evidence-based treatments for enhancing end-of-life experience and mitigating suffering, including a primary focus on dignity therapy and an additional review of meaning-centered psychotherapy, acceptance and commitment therapy, and cognitive-behavioral therapy. Each of these therapies has an emerging evidence base, but they have not been compared to each other in trials. Thus, the choice of psychotherapy for patients at the end of life will reflect patient characteristics, therapist orientation and expertise with various approaches, and feasibility within the care context. Future research is needed to directly compare the efficacy and feasibility of these interventions to determine optimal care delivery.

Psychotherapy at the End of Life.

Dr. Elisabeth Kübler-Ross is credited as one of the first clinicians to formalize recommendations for working with patients with advanced medical illnesses. In her seminal book, On Death and Dying, she identified a glaring gap in our understanding of how people cope with death, both on the part of the terminally ill patients that face death and as the clinicians who care for these patients. Now, 50 years later, a substantial and ever-growing body of research has identified "best practices" for end of life care and provides confirmation and support for many of the therapeutic practices originally recommended by Dr. Kübler-Ross. This paper reviews the empirical study of psychological well-being and distress at the end of life. Specifically, we review what has been learned from studies of patient desire for hastened death and the early debates around physician assisted suicide, as well as demonstrating how these studies, informed by existential principles, have led to the development of manualized psychotherapies for patients with advanced disease. The ultimate goal of these interventions has been to attenuate suffering and help terminally ill patients and their families maintain a sense of dignity, meaning, and peace as they approach the end of life. Two well-established, empirically supported psychotherapies for patients at the end of life, Dignity Therapy and Meaning Centered Psychotherapy are reviewed in detail.