Rethinking parameters of "success" in breaking bad news conversations from patient's perspective: the successful delivery process model.

PURPOSE: Studies that focus on improving the difficult process of breaking bad news in oncology should include the patient perspective and be guided by appropriate outcome measures. Endpoints such as "patient satisfaction" fall short to capture the complex nature of breaking bad news (BBN) conversations. However, this is true of many studies. The present study attempts to develop a framework model from a new, patient-centered perspective, which can be applied equally in clinical practice and in education. METHODS: Semi-structured in-depth interviews with twelve cancer patients were conducted. Transcripts were analyzed by "qualitative content analysis" following Mayring. Outcomes were further extrapolated in interpretational steps, and a model of "success" from patients view in BBN was developed. RESULTS: Two central needs of the patients could be identified: understanding and feelings. Their fulfillment depends on two groups of variables: first, structural characteristics, such as the inevitable shock, individuality, and processability; second, strongly influenceable variables, such as relationship, transfer of knowledge, and atmosphere. From these results, a framework model for successful breaking of bad news from the patient's perspective was developed: The successful delivery process model (SDP model). CONCLUSION: As a basic model for the framework for breaking bad news from the patient's perspective, the SDP model can be applied to many different situations in oncology and help to frame the difficult conversations by tailoring the BBN conversations on determinants that favorably influence the process in a patient centered manner. In this sense, the model can be useful in clinical practice as well as in education.

Prospective, longitudinal, multicenter study on the provision of information regarding sudden unexpected death in epilepsy to adults with epilepsy.

OBJECTIVE: Despite increased awareness of the serious epilepsy complication sudden unexpected death in epilepsy (SUDEP), a substantial population of people with epilepsy (PWE) remain poorly informed. Physicians indicate concern that SUDEP information may adversely affect patients' health and quality of life. We examined SUDEP awareness and the immediate and long-term effects of providing SUDEP information to PWE. METHODS: Baseline knowledge and behaviors among PWE and behavioral adjustments following the provision of SUDEP information were evaluated in a prospective, multicenter survey using the following validated scales: Neurological Disorders Depression Inventory for Epilepsy for depression symptoms, the EuroQoL five-dimension scale for health-related quality of life (HRQoL), a visual analog scale for overall health, the revised Epilepsy Stigma Scale for perceived stigma, and the Seizure Worry Scale for seizure-related worries. The prospective study collected data through semiquantitative interviews before (baseline), immediately after, and 3 months after the provision of SUDEP information. RESULTS: In total, 236 participants (mean age = 39.3 years, range = 18-77 years, 51.7% women) were enrolled, and 205 (86.9%) completed long-term, 3-month follow-up. One patient died from SUDEP before follow-up. No worsening symptoms from baseline to 3-month follow-up were observed on any scale. At baseline, 27.5% of participants were aware of SUDEP. More than 85% of participants were satisfied with receiving SUDEP information. Three quarters of participants were not concerned by the information, and >80% of participants recommended the provision of SUDEP information to all PWE. Although most patients reported no behavioral adjustments, 24.8% reported strong behavioral adjustments at 3-month follow-up. SIGNIFICANCE: The provision of SUDEP information has no adverse effects on overall health, HRQoL, depressive symptoms, stigma, or seizure worry among PWE, who appreciate receiving information. SUDEP information provision might improve compliance among PWE and reduce but not eliminate the increased mortality risk.

Cancer patients' expectations of advance care planning: A typological content analysis of qualitative interviews.

BACKGROUND: Advance care planning (ACP) can help to elicit cancer patients' preferences in a discussion process to promote person-centred medical decision-making. Expectations are known to be highly relevant determinants of decisional processes. So far, however, little is known about cancer patients' expectations of ACP that lead to acceptance or refusal of the programme. The presented study, therefore, aims to explore cancer patients' expectations of ACP. METHODS: Semi-structured interviews were conducted with a purposeful sample of 27 cancer patients consenting to or refusing a newly implemented ACP programme in a German university hospital. Data were analysed using typological content analysis. RESULTS: We identified five different expectation clusters in relation to ACP. Consenting participants held expectations about the impact of ACP that were either 'ego-centred' or 'family-centred'. Refusers had expectations based on ignorance and misinformation, or-if they had already completed an advance directive-expectations to avoid unpleasant redundancy, perceiving no additional benefit but a burden from ACP. Finally, refusers in particular expressed expectations of delegated responsibility at the end of life, including anticipation of proxy decision-making. CONCLUSION: Our study results suggest that expectation-modifying measures could be taken to positively influence cancer patients' expectations and thus the acceptance of ACP. In this respect, reducing ignorance and misguided expectations plays a decisive role. Especially in family constellations with expected delegation of responsibility and dependence at the end of life, it might be important to promote ACP as a family-intervention to improve family outcomes.

Do parents get what they want during bad news delivery in NICU?

OBJECTIVES: Little is known about parents' preferences in breaking bad news (BBN) in neonatology. The study was aimed at comparing parents' experiences with their first BBN discussion with a neonatologist/pediatric surgeon to their personal preferences. METHODS: We conducted a quantitative survey amongst 54 parents of hospitalized preterm or term infants with severe diseases in two medium-size and one small German neonatal units. Parents answered self-rated questions on how they perceived BBN during their infant's hospital stay, asking for procedure and perception of BBN, their preferences and satisfaction with BBN. RESULTS: Overall satisfaction with BBN was moderate to high (median (min-max): 8 (1-10) on a 1-10-Likert scale). A compassionate way of disclosure correlated highest with overall satisfaction with BBN. Thorough transmission of information in an easy to understand manner emerged as another crucial point and correlated significantly to satisfaction with BBN, too. The study revealed that it was highly important for parents, that physicians had good knowledge of the infant and the course of his/her disease, which was only met in a minority of cases. Moreover, there was a major discrepancy between expected and observed professional competence of the delivering physicians. Additionally, physicians did not set aside sufficient time for BBN and parents reported a lack of transporting assurance and hope. CONCLUSIONS: In BBN physicians should draw greatest attention to ensure understanding in parents, with good knowledge of child and disease and sufficient time in a trustworthy manner. Physicians should focus on transporting competence, trust and gentleness.

Prolonged Grief in Times of Lockdown During the COVID-19 Pandemic.

This study aimed to estimate the prevalence of prolonged grief (PG) during the COVID-19 pandemic and to analyze associated variables. 142 family members of patients who died during the lockdown at a hospital were surveyed 6 months after the death. Prolonged grief, depression and anxiety, grief rumination, and loss-related variables were captured. Logistic regression analyses were conducted to detect the associated variables of PG symptoms. Prolonged grief was present in 44.4% of the bereaved. 76.2% of the relatives reported feeling distressed due to visitor restrictions, and the majority of them were unable to bid farewell to their family member at the time of death. Pastoral or psychological care was also lacking. Low education (p < 0.001), emotional closeness (p = 0.007), loss of a spouse (p < 0.001), inability to bid farewell after death (p = 0.024), feeling of threat due to the pandemic (p < 0.001), depression (p = 0.014), and anxiety (p = 0.028) were significantly associated with prolonged grief.

Developing a care pathway for hospital-based advance care planning for cancer patients: A modified Delphi study.

OBJECTIVES: The objective of this study is to develop a care pathway for a hospital-based advance care planning service for cancer patients. METHODS: A web-based modified Delphi study consulted an expert panel consisting of a convenience sample of stakeholders including professionals with a special interest in advance care planning as well as a 'public and patient involvement group'. After generating ideas for core elements of a care pathway in the first round, numerical ratings and rankings informed the multi-professional research steering group's decision process eventually resulting in a final pathway. RESULTS: The 41 participants in the Delphi study identified 177 potential core elements of the pathway in the first round. In two further rounds, consensus was reached on a final version of the pathway with 148 elements covering the 10 domains: prerequisites, organisation and coordination, identification and referral, provision of information, information sources, family involvement, advance care planning discussion, documentation, update and quality assurance. CONCLUSION: We propose a care pathway for advance care planning for hospital patients with cancer based on the results of a Delphi study that reached consensus on an implementation strategy. Our study pioneers the standardisation of the process and provides input for further policy and research with the aim of aligning cancer patients' care with their preferences and values.

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.

Patients' knowledge about epilepsy-related risks, morbidity, and mortality: A multicenter cohort study from Germany.

INTRODUCTION: Patient education is a central component of quality care. Enhancing patient knowledge can improve patients' quality of life and facilitate successful self-management. We sought to identify patients' knowledge levels and knowledge gaps regarding epilepsy-related risks, morbidity, and mortality. METHODS: Adult patients with epilepsy presenting to the university hospitals in Frankfurt, Greifswald, and Marburg between February 2018 and May 2020 were asked to participate in this questionnaire-based study. RESULTS: A total of 238 patients (52% women), with a mean age of 39.2 years (range: 18-77 years), participated in this study. Spontaneously, the majority of patients (51.3%) named driving a car, and other traffic-related accidents as possible causes of morbidity and mortality, and 23.9% of patients reported various causes of premature death, such as suffocation, drowning, and respiratory or cardiac arrest due to seizures. Falls due to epilepsy (19.7%) and injuries in general (17.6%) were named as further causes of morbidity and mortality. The vast majority were aware that alcohol (87.4%), sleep deprivation (86.6%), and risky activities in daily life (80.3%) increased the risk of seizure occurrence or increased morbidity and mortality. Regarding overall mortality, 52.1% thought that people with epilepsy were at greater risk of premature death, whereas 46.2% denied this fact to be true. Only 29.4% were aware of status epilepticus, and 27.3% were aware of sudden unexpected death in epilepsy (SUDEP). Driving ability, working ability, and seizure risk were named as major or moderate concerns among patients, but the risk of premature mortality was not a major concern. One-quarter of all patients (26.9%) indicated that they were not counseled about any risk factors or causes of morbidity or mortality by their physicians. CONCLUSIONS: A lack of knowledge concerning premature mortality, SUDEP, and status epilepticus exists among adult patients with epilepsy. A substantial number of patients indicated that these issues were not discussed adequately by their physicians.

'It was like taking an inner bath': A qualitative evaluation of a collaborative advance care planning-approach.

BACKGROUND: Impaired readiness may hinder purposeful advance care planning in cancer patients. To reduce barriers to participation in end-of-life decision-making, a collaborative intervention was developed combining a psycho-oncological approach of dignity-based and cognitive-behavioural interventions, followed by a standardised advance care planning-process. AIM: To evaluate the novel collaborative advance care planning-approach by synthetising cancer patient and carer perspectives on communicational and relational effects. DESIGN: As a sub-project of a mixed-methods evaluation study, we conducted an inductive content analysis of qualitative interviews with advanced cancer patients and caregivers to deeply explore the focused impact of a collaborative advance care planning-approach on communication and relationship dynamics. SETTING/PARTICIPANTS: Twelve patients with advanced cancer and 13 carers who participated in a collaborative advance care planning-intervention. RESULTS: The collaborative advance care planning-approach was consistently evaluated positively by participants. Transcriptions of the semi-structured interviews were coded, analysed and merged under three main themes concerning communicational and relationship dynamics: action readiness, content readiness and impact on future communication and relationship. CONCLUSIONS: The novel intervention served to foster individual readiness - including action and content readiness - for advance care planning-discussions by addressing highly individualised barriers to participation, as well as specific end-of-life issues. In addition, societal readiness could be promoted. Although the brief psycho-oncological intervention could not fully meet the needs of all participants, it can be used to develop individual psychotherapeutic strategies to improve different facets of readiness. The collaborative advance care planning-approach might require more time and human resources, but could pioneer successful advance care planning.

["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.

Regret among primary care physicians: a survey of diagnostic decisions.

BACKGROUND: Experienced and anticipated regret influence physicians' decision-making. In medicine, diagnostic decisions and diagnostic errors can have a severe impact on both patients and physicians. Little empirical research exists on regret experienced by physicians when they make diagnostic decisions in primary care that later prove inappropriate or incorrect. The aim of this study was to explore the experience of regret following diagnostic decisions in primary care. METHODS: In this qualitative study, we used an online questionnaire on a sample of German primary care physicians. We asked participants to report on cases in which the final diagnosis differed from their original opinion, and in which treatment was at the very least delayed, possibly resulting in harm to the patient. We asked about original and final diagnoses, illness trajectories, and the reactions of other physicians, patients and relatives. We used thematic analysis to assess the data, supported by MAXQDA 11 and Microsoft Excel 2016. RESULTS: 29 GPs described one case each (14 female/15 male patients, aged 1.5-80 years, response rate < 1%). In 26 of 29 cases, the final diagnosis was more serious than the original diagnosis. In two cases, the diagnoses were equally serious, and in one case less serious. Clinical trajectories and the reactions of patients and relatives differed widely. Although only one third of cases involved preventable harm to patients, the vast majority (27 of 29) of physicians expressed deep feelings of regret. CONCLUSION: Even if harm to patients is unavoidable, regret following diagnostic decisions can be devastating for clinicians, making them 'second victims'. Procedures and tools are needed to analyse cases involving undesirable diagnostic events, so that 'true' diagnostic errors, in which harm could have been prevented, can be distinguished from others. Further studies should also explore how physicians can be supported in dealing with such events in order to prevent them from practicing defensive medicine.

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.

Predictors of and attitudes toward counseling about SUDEP and other epilepsy risk factors among Austrian, German, and Swiss neurologists and neuropediatricians.

OBJECTIVE: To examine the attitudes toward counseling about sudden unexpected death in epilepsy (SUDEP) and other epilepsy risk factors among Austrian, German, and Swiss neurologists and neuropediatricians, and to determine factors associated with not discussing SUDEP. METHODS: Questionnaires were sent to approximately 5,000 neurologists and neuropediatricians in 2014 regarding respondents' demographics, their working environments, and how often they discussed SUDEP, suicidal ideations on anticonvulsive medication, driving restrictions, and risks in daily life activities. RESULTS: In total, 519 surveys were completed (respondents' mean age: 45.5 years, 41.6% female, 66.9% adult neurologists, 31.0% neuropediatricians). A minority of 2.7% reported that they counseled all of their patients on SUDEP, 8.7% counseled most of the time (50-90%), 20.8% sometimes (10-49%), 44.5% rarely (1-9%), and 23.3% reported not counseling about SUDEP at all. In contrast, 92.9% reported that they counseled all patients about driving restrictions and 81.5% about risks in daily life activities. Suicidal ideations were discussed in 59.0% for some and in 3.3% for all patients, whereas 35.1% of respondents reported never discussing suicidal ideations. Independent predictors of not discussing SUDEP were no additional epilepsy training, no or uncertain SUDEP cases in the past, <10 years in practice, <25 epilepsy patients seen per quarter, and the opinion of a lack of consequences in SUDEP prevention. The opinion that SUDEP is a risk factor in particular patient groups and the attitude that all risks should be discussed predicted counseling on SUDEP. SIGNIFICANCE: Our findings show a discrepancy between guidelines and practice regarding the discussion of premature mortality due to SUDEP or suicidality. Both are not discussed at all by a substantial proportion of neurologists and neuropediatricians. This is in contrast to ubiquitous education about driving restrictions. Dissemination of knowledge among physicians about potential preventive strategies might increase the likelihood of discussion. Clinical practice guidelines are welcomed by the majority of physicians in this process.

Questionnaires About the End of Life for Cancer Patients - Is the Response Burden Acceptable?

CONTEXT: Research about the end of life with the help of patient-reported outcomes in vulnerable populations such as cancer patients is needed but is potentially burdensome and can therefore raise concerns. OBJECTIVES: To assess the response burden due to questionnaires about the end of life in cancer patients and to explore associations with individual variables. METHODS: In a cross-sectional design response burden was assessed using a six-item instrument after completion of a survey that concerned the end of life. Associations with age, gender, type of care (curative/palliative), years since diagnosis, distress, depression, anxiety, death anxiety, readiness for end-of-life conversations, and readiness for advance care planning were explored via correlational analyses and multiple regressions. Burden due to the topic of end-of-life and completing questionnaires in general was compared. RESULTS: A total of 269 cancer patients (mean age 61.4 (SD =12.3); 59.5% male; 58.4% in palliative care) completed the survey in a German hospital. The majority did not report response burden; 29.7% reported at least some burden due to study participation. The multiple regression (F [10,26] = 9.97, p < 0.001) indicated that stable predictors of response burden were higher death anxiety (ß = 0.4), lower readiness to talk about one's end of life (ß = -0.34) and higher age (ß = 0.23). No additional subjective burden due to the topic of end-of-life was reported. CONCLUSION: The reported response burden seems acceptable since it was generally low. However, a subgroup did report some burden. Minimising burden and enhancing participants' benefits without compromising the research quality should further influence study designs in this field.

Difficulties of Cancer Patients' Relatives in End-of-Life Discussions: Validation of a Questionnaire.

CONTEXT: Despite the potential benefits and the desire for end-of-life communication, it rarely occurs in the familial context. Relatives play a significant role in the communication process; thus, it is crucial to understand the difficulties that they face. OBJECTIVES: To develop and evaluate the relatives' version of the Difficulties in End-of-Life Discussions - Family Inventory (DEOLD-FI-r) regarding its factor structure, reliability and validity. METHODS: Relatives of patients with advanced cancer were recruited in a German hospital. The factor structure of the questionnaire was explored. Construct validity was examined through correlations between the DEOLD-FI-r and measures of avoidance of cancer communication, quality of life, distress, and experienced difficulty during end-of-life discussions. Additionally, we examined the group difference between those who had and had not engaged in the conversation. RESULTS: About 111 relatives completed the survey (mean age 55.5 years, 52% female). The final version of the DEOLD-FI-r contained 23 items (α = .92). The exploratory factor analysis resulted in three factors explaining 74% of the variance. Each factor described another dimension of potential communication barriers in end-of-life discussions: 1) Own emotional burden, 2) Relational and patient-related difficulties, 3) Negative attitudes. Construct validity was supported by correlations consistent with our hypotheses and less reported communication difficulty by those who had already talked about the end-of-life with their relative (t(106) = 5.38, P < .001, d = 0.8). CONCLUSION: The results indicate that the DEOLD-FI-r is a valid and reliable instrument for the systematic assessment of difficulties in family end-of-life communication. By focusing on relatives, it complements the already validated patient-version.

Collaborative advance care planning in palliative care: a randomised controlled trial.

OBJECTIVE: An effective tool for establishing concordant end-of-life (EOL) care in patients with cancer is advance care planning (ACP). However, various barriers, including psychological obstacles, hamper the access to ACP. Therefore, a new conceptual model combining a psycho-oncological approach with structured ACP was developed. The effectiveness and efficiency of this new concept of collaborative ACP (col-ACP) is evaluated in the present randomised controlled trial in patients with palliative cancer. METHODS: 277 patients with palliative cancer and their relatives were randomised into three groups (1) collaborative ACP (col-ACP) consisting of a psycho-oncological approach addressing barriers to EOL conversations followed by a standardised ACP procedure, (2) supportive intervention (active control) and (3) standard medical care. RESULTS: Patients in the col-ACP group completed advance directives (p<0.01) and healthcare proxies (p<0.01) significantly more often. Additionally, they felt better planned ahead for their future treatment (p<0.01) and were significantly more confident that their relatives were aware of their treatment wishes (p=0.03). In fact, their goals of care were known and highly fulfilled. However, patients' and caregivers' quality of life, patients' stress, depression and peace did not differ between the groups. CONCLUSIONS: The new, well-received, concept of col-ACP improves readiness and access to ACP and results in more consistent EOL care. Further, even if no direct influence on quality of life could be proven, it supports patients in planning their treatment, making autonomous decisions and regaining self-efficacy in the face of life-limiting cancer. Therefore, a closer interlocking and information exchange between psycho-oncological and ACP services seems to be reasonable. TRIAL REGISTRATION NUMBER: NCT03387436.

Patients' Perspective on Termination of Pacemaker Therapy-A Cross-Sectional Anonymous Survey among Patients Carrying a Pacemaker in Germany.

OBJECTIVE: To determine the opinions of patients regarding the withdrawal of pacemaker therapy. PARTICIPANTS AND METHODS: A cross-sectional anonymous questionnaire was administered to patients visiting an outpatient cardiologic clinic for routine follow-up visits of pacemaker therapy or patients carrying a pacemaker admitted to a hospital between 2021 and 2022. RESULTS: Three-hundred and forty patients answered the questionnaire. A total of 56% of the participants were male. The mean age was 81 years. The majority of respondents were very comfortable with their PM and felt well informed, with one exception: more than half of respondents were missing information on withdrawal of pacemaker therapy. Almost two-thirds wanted to decide for themselves if their pacemaker therapy was withdrawn regardless of whether they were ill or healthy. Almost 60% of patients would like the pacemaker to be turned off when dying. Women expressed this wish significantly more often than men. CONCLUSION: Our survey shows that patients prefer to be informed on issues regarding the withdrawal of pacemakers as early as preimplantation. Also, patients would like to be involved in decisions that have to be made at the end of life, including decisions on withdrawal. Offers of conversations about this important issue should include information on special features of the patient's pacemaker, e.g., the absence or presence of pacemaker dependency. Knowledge about the pacemaker's functionality may prevent distress among individuals nearing their end of life when, for example, under the false impression that timely deactivation may allow for a more peaceful death.