BackgroundCommunication 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.AimTo identify barriers that hinder or influence the discussion of end-of-life issues in the family context.DesignA systematic mixed-method review according to Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines.Data sourcesA 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.Results18 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.ConclusionsResearch 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.

ZusammenfassungFür viele Menschen sind Tod und Sterben etwas Schmerzliches (in vielerlei Hinsicht), dessen Vorstellung tiefgründige, starke Ängste berührt oder auslöst. Häufig wird versucht, das Thema zu vermeiden und von sich weg zu schieben. In der Medizin aber lässt sich das Thema nicht aussparen – und es gibt gute Gründe, gerade darüber zu sprechen.

<b><i>Introduction:</i></b> 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. <b><i>Objective:</i></b> 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. <b><i>Methods:</i></b> 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. <b><i>Results:</i></b> IG2 and IG3 reported significantly more changes in the readiness to engage in end-of-life discussions than the CG (<i>F</i>[5.61, 307] = 4.83, <i>p</i> &#x3c; 0.001, η<i>p</i>² = 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. <b><i>Conclusions:</i></b> 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.

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.

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.