The Difficulties in End-of-Life Discussions - Family Inventory (DEOLD-FI): Development and Initial Validation of a Self-Report Questionnaire in a Sample of Terminal Cancer Patients.

CONTEXT: Open end-of-life communication is especially important within the patient-family unit of care and can positively affect their medical, psychological, and relational outcomes. Nevertheless, end-of-life discussions are often perceived as difficult and avoided. OBJECTIVES: To develop and validate the Difficulties in End-of-Life Discussions - Family Inventory (DEOLD-FI) to allow a systematic assessment of reasons why people shy away from end-of-life discussions. METHODS: Patients with advanced cancer were recruited and completed the DEOLD-FI and measures of avoidance of cancer communication, quality of life and distress, and the experienced difficulty as well as the occurrence of end-of-life discussions. Standard item analyses and an exploratory factor analysis were conducted. Construct validity was analysed through associations between the DEOLD-FI and the aforementioned measures. RESULTS: Questionnaires were obtained from 112 participants (53% response rate; male 54%, mean age 64.9 years [range 33-94]). In the final 23-item version two factors were extracted: 'emotional burden due to end-of-life discussions' (α = 0.90) and "negative attitudes towards end-of-life discussions" (α = 0.91) explaining 69% of the variance (total scale α = 0.93). Construct validity was supported by its significant correlations with the reported difficulty in end-of-life discussions (r = 0.42) and avoidance of cancer communication (r = 0.40 to r = 0.46) and insignificant correlations with quality of life (r = -0.11), distress (r = 0.16), and physical well-being (r = 0.02). Those who had already engaged in end-of-life discussions showed significantly fewer communication barriers. CONCLUSION: Results provide evidence that the DEOLD-FI is a valid and reliable instrument for the assessment of difficulties in end-of-life discussions. Benefits for clinical practice and research are discussed.

Development and Validation of the Readiness for End-of-Life Conversations (REOLC) Scale.

Background: Engaging in end-of-life care considerations is beneficial when the time is right. The purpose of this study is to provide a valid instrument to assess peoples readiness for end-of-life conversations before they are initiated. Materials and Methods: A community sample was recruited in study one for exploratory factor analysis of a 13-item questionnaire. In study two, psychometric properties were analyzed with structural equation modeling in a population affected by cancer. Convergent and discriminant validity were assessed with questionnaires measuring distress, depression, anxiety, fear of progression, and distress of death and dying. Results: In study one (N = 349) exploratory factor analysis resulted in three subscales readiness (α = 0.84), communication (α = 0.76), and values (α = 0.56) with a possible common factor (α = 0.84) for a community sample. In study two (N = 84) the three-factor solution with 13 items was not supported for cancer patients. Factor structure was adapted to 12 items with one common factor readiness (α = 0.87). Model fit was good: χ2(50) = 59.18, p>0.05 (Satorra-Bentler-correction = 1.27), with χ2/df = 1.184, rRMSEA = 0.053 (90%-CI[0.000;0.100]), and rSRMR = 0.072. Convergent validity was supported by moderate correlations to trait gratitude, ratings of readiness to provide a living will or talk with family about the end of life. Divergent validity was supported by no or small correlation with distress, depression, general and death anxiety and fear of progression, respectively. Conclusions: Results support usage of the REOLC Scale in different settings with adapted factor structure. The questionnaire is interpreted as valid and reliable instrument to assess objective readiness for end-of-life conversations.

Systematic mixed-method review of barriers to end-of-life communication in the family context.

BACKGROUND: Communication about the end of life is especially important in the family context, as patients and their families are considered as the care unit in palliative care. Open end-of-life communication can positively affect medical, psychological and relational outcomes during the dying process for patient and family. Regardless of the benefits of end-of-life conversations, many patients and their family caregivers speak little about relevant end-of-life issues. AIM: To identify barriers that hinder or influence the discussion of end-of-life issues in the family context. DESIGN: A systematic mixed-method review according to Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines. DATA SOURCES: A systematic search of PsycInfo, CINAHL, PubMed and Web of Science was conducted and extended with a hand search. Peer-reviewed primary studies reporting on the barriers to or difficulties in end-of-life conversations experienced by terminally ill patients and/or family caregivers were included in this review. RESULTS: 18 qualitative and two quantitative studies met the inclusion criteria. The experiences of n=205 patients and n=738 family caregivers were analysed qualitatively; n=293 patients and n=236 caregivers were surveyed in the questionnaire studies. Five overarching categories emerged from the extracted data: emotional, cognitive, communicative, relational and external processes can hinder end-of-life communication within the family. The most frequently reported barriers are emotional and cognitive processes such as protective buffering or belief in positive thinking. CONCLUSIONS: Research on end-of-life communication barriers in the family context is scarce. Further research should enhance the development of appropriate assessment tools and interventions to support families with the challenges experienced regarding end-of-life conversations.

["We are Heading Towards that Now" - A Qualitative Analysis of the Perspectives of Healthy Older Adults on Conditions, Difficulties and Benefits of Early End-of-Life Conversations]. / "Wir sind jetzt auch auf dem Weg dahin" ­ Qualitative Untersuchung zu den Perspektiven älterer gesunder Erwachsener über Voraussetzungen, Schwierigkeiten und Nutzen von Gesprächen über das Lebensende.

OBJECTIVE: Early conversations about the end of life can contribute to patient-centered care at the end of life. Too often, however, these conversations do not take place or if they do, they are too late. The aim of this qualitative research was to identify the prerequisites, difficulties and usefulness of such conversations from the point of view of healthy older adults. The findings might be of use in primary health care to provide early and open end-of-life discussions. METHODS: The interviews stem from an experimental study concerning the readiness of end-of-life conversations with healthy adults. Six transcripts (2 male and 4 female participants, 65-78 years) were evaluated by using the thematic analysis by Braun and Clarke. RESULTS: Conditions for the initiation of conversations were thematically separated into beliefs and attitudes, intrinsic motivation, experience, family communication and practical realization. Difficulties were found in the areas of cognitive barriers, practical realization, emotional barriers, relational factors and environmental conditions. Participants saw the usefulness of such conversations in the areas of relationship quality, organizational profit, values, as well as cognitive and emotional areas. DISCUSSION: The results are in agreement with past research. From the perspective of older healthy people, family conversations about the end of life can be "too late". However, it also appears that there are specific barriers to early discussions. The findings on helpful conditions and barriers can be used for the development of interventions to increase readiness for such discussions. CONCLUSION: Early conversations about the end of life should be offered in the sense of preventive care in a low-threshold way. Providers of primary health care can identify a "need to talk", reduce communication barriers and encourage confrontation with one's own mortality. Adequate information should be provided if necessary, and a structured communication approach should be employed.

Matters of Life and Death: An Experimental Study Investigating Psychological Interventions to Encourage the Readiness for End-of-Life Conversations.

INTRODUCTION: Talking about death and dying is evoking discomfort in many persons, resulting in avoidance of this topic. However, end-of-life discussions can alleviate distress and uncertainties in both old and young adults, but only a minority uses this option in palliative care. Even in healthy populations, talking about death is often seen as alleviative and worthwhile, but rarely initiated. OBJECTIVE: To investigate different psychological interventions (a) encouraging the readiness for end-of-life discussions and (b) changing death attitudes in healthy adults of different ages. METHODS: 168 participants were randomized to four different interventions (IG1: value-based intervention with end-of-life perspective, IG2: motivation-based intervention with end-of-life perspective, IG3: combination of IG1 and IG2, CG: control group). Primary outcome was the readiness to engage in end-of-life topics. Secondary outcomes were fear of death, fear of dying and death acceptance. Assessments took place before, directly after the intervention and at 2 weeks of follow up. RESULTS: IG2 and IG3 reported significantly more changes in the readiness to engage in end-of-life discussions than the CG (F[5.61, 307] = 4.83, p < 0.001, ηp2 = 0.081) directly after the intervention. The effect of IG3 remained stable at the follow-up. There were no significant effects of the interventions on end-of-life fears or death acceptance. Acceptability of the interventions was very high. CONCLUSIONS: Short interventions can be useful to encourage end-of-life discussions and could be integrated in health care programs. The efficacy and effectiveness of these short interventions in palliative patients are currently examined.

Collaborative advance care planning in advanced cancer patients: col-ACP -study - study protocol of a randomised controlled trial.

BACKGROUND: To assure patient-centred end-of-life care, palliative interventions need to account for patients' preferences. Advance care planning (ACP) is a structured approach that allows patients, relatives and physicians to discuss end-of-life decisions. Although ACP can improve several patient related outcomes, the implementation of ACP remains difficult. The col-ACP-study (collaborative advance care planning) will investigate a new ACP procedure (col-ACP-intervention (German: Hand-in-Hand Intervention)) in palliative cancer patients and their relatives that addresses individual values and targets barriers of communication before an ACP process. METHODS: In a randomised controlled trial, 270 cancer patients without curative treatment options and their relatives will receive either 1) col-ACP 2) a supportive intervention (active control group) or 3) standard medical care (TAU). col-ACP comprises two steps: a) addressing various barriers of patients and relatives that discourage them from discussing end-of-life issues followed by b) a regular, structured ACP procedure. The col-ACP-intervention consists of 6 sessions. Primary endpoint is the patients' quality of life 16 weeks after randomisation. Secondary endpoints include measurements of distress; depression; communication barriers; caregivers' quality of life; existence of ACP or advance directives; the consistence of end of life care; and others. Patients will be followed up for 13 months. Multivariate analyses will be carried out. Qualitative evaluation of the intervention will be conducted. DISCUSSION: Augmentation of a regular ACP program by a structured psycho-oncological intervention is an innovative approach to target barriers of communication about end-of-life issues. Study findings will help to understand the value of such a combined intervention in palliative care. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT03387436 (Date of registration: 01/02/2018, retrospectively registered.

[Barriers to Conversations About Death and Dying in the Medicine]. / Barrieren für Gespräche über Tod und Sterben in der Medizin.

Conversations about death, dying and the end of life are usually difficult. They can turn out to be both a burden and a challenge for those engaging in these talks. There is evidence that talking early about end-of-life-topics shows positive effects concerning medical and psychological conditions of patients. Open communication addressing these topics can be part of family- and patient-centered talks in an intensive care department, known as a quality indicator of intensive care medicine. Further, these conversations are important and necessary in palliative care for providing a "good death". Nevertheless, these conversations are delayed or do not take place due to communication barriers of doctors, patients and caregivers. Barriers to end of life communication of physicians contain individual, personal or role-specific factors, lack of medical knowledge, including insecurities of prognosis, professional attitudes, clinical routines and the worry of harming patients with these talks. Regarding barriers to communication of patients and their family members, it could be differentiated between emotional, cognitive, relationship-related and external factors. It could be valuable to recognize these barriers to increase the possibility of end of life conversations in the near future.In daily medical routine end of life topics should be addressed early and actively. Especially the readiness for these conversations should be tested repeatedly and talks should be offered regularly. Critical events such as relapse, modulating therapy concepts and knowledge of unrealistic treatment expectations should be regarded as prompts to offer conversations about dying and end-of-life care actively.

Cancer patient utilisation of psychological care in Germany: The role of attitudes towards seeking help.

OBJECTIVE: Even if significantly distressed, many patients with cancer do not seek psychological help. There is growing evidence that attitudes are central barriers for help-seeking, and instruments to assess cancer patients' attitudes towards help-seeking are urgently needed. This study aimed to evaluate the German Attitudes towards Seeking Help after Cancer Scale (ASHCa-G) and investigated the relationship between patients' attitudes and psychological care utilisation. METHODS: The ASHCa-G was presented to 270 patients with cancer (age 63.0 ± 12.7 years, 44.8% women). Item analyses, principal component analysis and associations with age, social support, help-seeking intention and psychological care utilisation were calculated. A hierarchical logistic regression was performed to ascertain the leading role of attitudes in explaining psychological care utilisation. RESULTS: Principal component analysis supported a two-component solution, which showed good internal consistency for the positive attitudes (α = 0.80) and negative attitudes (α = 0.75) subscales. The associations with age, distress and help-seeking intention confirmed the validity of the ASHCa-G. Positive attitudes explained most variance of cancer patients' current psychological care utilisation. CONCLUSION: The ASHCa-G seems to be a reliable and valid questionnaire for assessing attitudes towards seeking psychological help among patients with cancer. Clinical practice might profit from identifying attitudinal barriers that hinder patients with cancer from seeking psychological help.