Development and evaluation of the Dignity Talk question framework for palliative patients and their families: A mixed-methods study

Background: Effective patient–family communication can reduce patients’ psychosocial distress and relieve family members’ current suffering and their subsequent grief. However, terminally ill patients and their family members often experience great difficulty in communicating their true feelings, concerns, and needs to each other. Aim: To develop a novel means of facilitating meaningful conversations for palliative patients and family members, coined Dignity Talk, explore anticipated benefits and challenges of using Dignity Talk, and solicit suggestions for protocol improvement. Design: A convergent parallel mixed-methods design. Dignity Talk, a self-administered question list, was designed to prompt end-of-life conversations, adapted from the Dignity Therapy question framework. Participants were surveyed to evaluate the Dignity Talk question framework. Data were analyzed using qualitative and quantitative methods. Setting/participants: A total of 20 palliative patients, 20 family members, and 34 healthcare providers were recruited from two inpatient palliative care units in Winnipeg, Canada. Results: Most Dignity Talk questions were endorsed by the majority of patients and families (>70%). Dignity Talk was revised to be convenient and flexible to use, broadly accessible, clearly stated, and sensitively worded. Participants felt Dignity Talk would be valuable in promoting conversations, enhancing family connections and relationships, enhancing patient sense of value and dignity, promoting effective interaction, and attending to unfinished business. Participants suggested that patients and family members be given latitude to respond only to questions that are meaningful to them and within their emotional capacity to broach. Conclusion: Dignity Talk may provide a gentle means of facilitating important end-of-life conversations

Sympathy, empathy, and compassion: A grounded theory study of palliative care patients’ understandings, experiences, and preferences

Background: Compassion is considered an essential element in quality patient care. One of the conceptual challenges in healthcare literature is that compassion is often confused with sympathy and empathy. Studies comparing and contrasting patients’ perspectives of sympathy, empathy, and compassion are largely absent. Aim: The aim of this study was to investigate advanced cancer patients’ understandings, experiences, and preferences of “sympathy,” “empathy,” and “compassion” in order to develop conceptual clarity for future research and to inform clinical practice. Design: Data were collected via semi-structured interviews and then independently analyzed by the research team using the three stages and principles of Straussian grounded theory. Setting/participants: Data were collected from 53 advanced cancer inpatients in a large urban hospital. Results: Constructs of sympathy, empathy, and compassion contain distinct themes and sub-themes. Sympathy was described as an unwanted, pity-based response to a distressing situation, characterized by a lack of understanding and self-preservation of the observer. Empathy was experienced as an affective response that acknowledges and attempts to understand individual’s suffering through emotional resonance. Compassion enhanced the key facets of empathy while adding distinct features of being motivated by love, the altruistic role of the responder, action, and small, supererogatory acts of kindness. Patients reported that unlike sympathy, empathy and compassion were beneficial, with compassion being the most preferred and impactful. Conclusion: Although sympathy, empathy, and compassion are used interchangeably and frequently conflated in healthcare literature, patients distinguish and experience them uniquely. Understanding patients’ perspectives is important and can guide practice, policy reform, and future research

Assessing the feasibility, acceptability and potential effectiveness of Dignity Therapy for people with advanced cancer referred to a hospital-based palliative care team: Study protocol

<p>Abstract</p> <p>Background</p> <p>Loss of dignity for people with advanced cancer is associated with high levels of psychological and spiritual distress and the loss of the will to live. Dignity Therapy is a brief psychotherapy, which has been developed to help promote dignity and reduce distress. It comprises a recorded interview, which is transcribed, edited then returned to the patient, who can bequeath it to people of their choosing. Piloting in Canada, Australia and the USA, has suggested that Dignity Therapy is beneficial to people with advanced cancer and their families. The aims of this study are to assess the feasibility, acceptability and potential effectiveness of Dignity Therapy to reduce psychological and spiritual distress in people with advanced cancer who have been referred to hospital-based palliative care teams in the UK, and to pilot the methods for a Phase III RCT.</p> <p>Design</p> <p>A randomised controlled open-label trial. Forty patients with advanced cancer are randomly allocated to one of two groups: (i) Intervention (Dignity Therapy offered in addition to any standard care), and (ii) Control group (standard care). Recipients of the 'generativity' documents are asked their views on taking part in the study and the therapy. Both quantitative and qualitative outcomes are assessed in face-to-face interviews at baseline and at approximately one and four weeks after the intervention (equivalent in the control group). The primary outcome is patients' sense of dignity (potential effectiveness) assessed by the Patient Dignity Inventory. Secondary outcomes for patients include distress, hopefulness and quality of life. In view of the relatively small sample size, quantitative analyses are mainly descriptive. The qualitative analysis uses the Framework method.</p> <p>Discussion</p> <p>Dignity Therapy is brief, can be delivered at the bedside and may help both patients and their families. This detailed exploratory research shows if it is feasible to offer Dignity Therapy to patients with advanced cancer, many of whom are likely to be in the terminal stage of their illness, whether it is acceptable to them and their families, if it is likely to be effective, and determine whether a Phase III RCT is desirable.</p> <p>Trial registration</p> <p>Current Controlled Clinical Trials: ISRCTN29868352</p

Postgraduate palliative care education: Evaluation of a South African programme

Aim. We aimed to assess the postgraduate palliative care distance education programme of the University of Cape Town (UCT) in terms of its perceived ability to influence palliative care delivery. Methods. A mixed-methods approach, consisting of two surveys using open-ended and multiple-choice options, was conducted from January - December 2007 at the UCT School of Public Health and Family Medicine. All students registered in the programme from 2000 - 2007 were invited to participate; 83 (66.4% of all eligible participants) completed the general survey, and 41 (65.7%) of the programme's graduates completed the graduate survey. The survey scores and open-ended data were triangulated to evaluate UCT’s palliative care postgraduate programme. Results. General survey scores of graduates were significantly higher in 5 of the 6 categories in comparison with current students. The graduate survey indicated that curriculum and teaching strengths were in communication and dealing with challenging encounters. Graduates also stressed the need to develop a curriculum that incorporated a practical component. Conclusions. In addition to current postgraduate training, palliative care education in South Africa should be extended to undergraduate medical students, as the benefits of UCT’s programme were limited to a small cohort of practitioners

Postgraduate Palliative care education: Evaluation of a South African Programme

AIM: We aimed to assess the postgraduate palliative care distance education programme of the University of Cape Town (UCT) in terms of its perceived ability to influence palliative care delivery. METHODS: A mixed-methods approach, consisting of two surveys using open-ended and multiple-choice options, was conducted from January to December 2007 at the UCT School of Public Health and Family Medicine. All students registered in the programme from 2000 - 2007 were invited to participate; 83 (66.4% of all eligible participants) completed the general survey, and 41 (65.7%) of the programme's graduates completed the graduate survey. The survey scores and open-ended data were triangulated to evaluate UCT's palliative care postgraduate programme. RESULTS: General survey scores of graduates were significantly higher in 5 of the 6 categories in comparison with current students. The graduate survey indicated that curriculum and teaching strengths were in communication and dealing with challenging encounters. Graduates also stressed the need to develop a curriculum that incorporated a practical component. CONCLUSIONS: In addition to current postgraduate training, palliative care education in South Africa should be extended to undergraduate medical students, as the benefits of UCT's programme were limited to a small cohort of practitioners

Testing the feasibility of the Dignity Therapy interview: adaptation for the Danish culture

<p>Abstract</p> <p>Background</p> <p><b>'</b>Dignity Therapy' (DT) is a brief, flexible intervention, which allows patients to complete an interview and create a document regarding their life, identity and what they want to leave in writing for their loved ones. DT is based on the DT Question Protocol. Developed and tested in English speaking settings, DT has proven to be a feasible and effective way to enhance patient dignity, while diminishing suffering and depression. The aim of this study was to test the acceptability and feasibility of the DT Question Protocol among Danish health professionals and cancer patients, and to obtain preliminary estimates of patient uptake for DT. These results will be used to inform a larger evaluation study.</p> <p>Method</p> <p>Ten professionals were interviewed about their perception of DT and the Question Protocol. It was then tested with 20 patients at two palliative care sites and one gynecologic oncology department. Data was analyzed using content analysis techniques to evaluate the protocol for relevance, acceptability and comprehension. The interest and relevance of the intervention was also determined by examining the preliminary participation rate.</p> <p>Results</p> <p>Overall, DT was perceived to be comprehensible and relevant. Professionals highlighted six concerns that might warrant modification. These issues were examined using patient data. Some of their concerns overlapped with those raised by the professionals (e.g. <it>'unacceptable self-praise' </it>and '<it>interference with the lives of others'</it>). Tailoring DT to Danish culture required easily accommodated adjustments to the procedures and the DT Question Protocol. Some concerns expressed by health professionals may have reflected protectiveness toward the patients. While the intervention was relevant and manageable for patients admitted to palliative care, DT was less easily implemented at the gynecologic oncology department.</p> <p>Conclusion</p> <p>Based on patients' and professionals' reaction to the DT Question Protocol, and based on the preliminary proportion of participants accepting DT, the DT question protocol - with minor adaptations - appears to be a manageable, acceptable and relevant intervention for Danish patients admitted to palliative care.</p

Issues of the Ends of Life: The Segelberg Series

The Segelberg Series explores the intersection of religious faith and public policy. This book contains the lectures focused on The Ends of Life. Dalhousie University’s School of Public Administration managed the series through a lecture committee under the able leadership of the former Dean of Dalhousie’s Law School, Professor Innis Christie, QC

Psychometric properties of the Patient Dignity Inventory in an acute psychiatric ward: an extension study of the preliminary validation

Background: During the last decades, dignity has been an emerging issue in mental health since its ethical and therapeutic implications became known. This study is an extension of the preliminary validation of the Patient Dignity Inventory (PDI) in a psychiatric setting, originally designed for assessing perceived dignity in terminal cancer patients. Methods: From October 21, 2015 to December 31, 2016, we administered the Italian PDI to all patients hospitalized in an acute psychiatric ward, who provided their consent and completed it at discharge (n=165). We performed Cronbach’s alpha coefficient and principal factor analysis. We administered other scales concomitantly to analyze the concurrent validity of PDI. We applied stepwise multiple linear regression to identify the patients’ demographic and clinical variables related to the PDI score. Results: Our response rate was 93%, with excellent internal consistency (Cronbach’s alpha coefficient=0.94). The factorial analysis showed three factors with eigenvalue .1, which explained .80% of total variance: 1) “loss of self-identity and anxiety for the future”, 2) “concerns for social dignity and spiritual life”, and 3) “loss of personal autonomy”. The PDI and the three factor scores were positively and significantly correlated with the Hamilton Scales for Depression and Anxiety but not with other scale scores. Among patients’ variables, “suicide risk” and “insufficient social and economic condition” were positively and significantly correlated with the PDI total score. Conclusion: The PDI can be a reliable tool to assess patients’ dignity perception in a psychiatric setting, which suggests that both social and clinical severe conditions are closely related to dignity loss

The Portuguese versions of the This Is ME Questionnaire and the Patient Dignity Question: tools for understanding and supporting personhood in clinical care

Background: Modern medicine can be impersonal and routinized, paying insufficient attention to issues of personhood. The Patient Dignity Question (PDQ) and This Is ME (TIME) Questionnaire are clinical tools developed with the aim of probing for personhood, reinforcing dignity and promoting health care attitudes based on looking at people for who they are and not defining them solely based on their medical condition. This study aimed to translate and validate the TIME Questionnaire and the PDQ into European Portuguese, coined as Questionário Este Sou EU (ESEU) and Pergunta da Dignidade (PD), respectively. Methods: A three-stage research design, namely: a forward and back translation process (which included an expert committee panel), collected data on a sample of 43 non-institutionalized active elderly for the validation stage and a final expert panel consultation. Inclusion criteria: being 50 years old or older; ability to provide written informed consent; ability to read, speak and understand Portuguese. Results: The original TIME authors fully endorsed the back translated version. A Portuguese version was created. Forty-three participants (response rate of 62%) were included, 53% of whom were male. The average age was 69 years old (range, 60–80 years old). The interviewed elderly strongly felt that the ESEU’s summary captured their essence as a person beyond whatever health problems they might be experiencing (6.8, SD =0.48), heightened their sense of dignity (6.1, SD =1.48), considered important that health care professionals (HCPs) have access to ESEU’s summary (6.6, SD =0.73) and that this information could affect the way HCPs see and care for them (6.4, SD =0.86), rated on a Likert scale: 1 “strongly disagree”–7 “strongly agree”. According to the experts’ evaluations, the translated ESEU Questionnaire was clear, precise, comprehensible and captured important dimensions of personhood. Conclusions: The Questionário ESEU and the PD are clear, precise, comprehensible and well-aligned in terms of measuring aspects of personhood. This measure could add additional value to the patient-healthcare provider relationship, allowing a new perspective on how healthcare professionals perceive patients in suffering, ensuring they acknowledge not just patienthood, but critical dimensions of personhood.Foundation for Science and Technology (FCT) PhD Fellow Grant number PD/BD/113664/2015 Doctoral Program in Clinical and Health Services Research (PDICSS) funded by FCT Grant number (PD/0003/2013); F Fareleira is funded by Foundation for Science and Technology (FCT) PhD Fellow Grant number PD/BD/132860/2017 Doctoral Program in Clinical and Health Services Research (PDICSS); N Correia Santos: this work has been developed under the scope of the project NORTE-01-0145-FEDER-000013, supported by the Northern Portugal Regional Operational Programme (NORTE 2020), under the Portugal 2020 Partnership Agreement, through the European Regional Development Fund (FEDER), and was co-financed by the Portuguese North Regional Operational Program (ON.2—O Novo Norte), under the National Strategic Reference Framework (QREN), through FEDER. N Correia Santos is supported by a Research Assistantship by the Portuguese Foundation for Science and Technology (FCT, Portugal) through the “FCT Investigator Programme (200 ∞ Ciência)”info:eu-repo/semantics/publishedVersio

Is dignity therapy feasible to enhance the end of life experience for people with motor neurone disease and their family carers?

Background: Development of interventions that address psychosocial and existential distress in people with motor neurone disease (MND) or that alleviate caregiver burden in MND family carers have often been suggested in the research literature. Dignity therapy, which was developed to reduce psychosocial and existential distress at the end of life, has been shown to benefit people dying of cancer and their families. These results may not be transferable to people with MND. The objectives of this study are to assess the feasibility, acceptability and potential effectiveness of dignity therapy to enhance the end of life experience for people with motor neurone disease and their family carers. Methods/design: This is a cross-sectional study utilizing a single treatment group and a pre/post test design. The study population will comprise fifty people diagnosed with MND and their nominated family carers. Primarily quantitative outcomes will be gathered through measures assessed at baseline and at approximately one week after the intervention. Outcomes for participants include hopefulness, spirituality and dignity. Outcomes for family carers include perceived caregiver burden, hopefulness and anxiety/depression. Feedback and satisfaction with the intervention will be gathered through a questionnaire. Discussion: This detailed research will explore if dignity therapy has the potential to enhance the end of life experience for people with MND and their family carers, and fill a gap for professionals who are called on to address the spiritual, existential and psychosocial needs of their MND patients and families