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Abstract: Improving risk prediction of Alzheimer’s dementia poses challenges to healthcare professionals, patients, and their social environment. Moreover, predictive diagnosis faces limited operationalized clinical recommendations. In this study, we developed manuals for counseling individuals with mild cognitive impairment on their biomarker-based dementia risk prediction; we interviewed 16 participants postcounseling. The interview analysis examines sources of knowledge concerning the decision regarding risk prediction. Subsequently, an interdisciplinary interpretation discusses implications for practice. By focusing on sources of the participants’ knowledge, we identified epistemic authorities, such as (former) medical-related professional background or previous disease experiences. The findings provide information on cues and conversational elements for improving counseling sessions. Sensibly integrated language-based and legal considerations may achieve a targeted and efficient joint decision-making process.

ObjectivePatients’ desire to die (DD) is rarely discussed in palliative care (PC) due to health professionals’ (HPs) feeling of uncertainty. The aim of the study was to develop and evaluate a training to increase HPs’ self-confidence in responding professionally to patient's DD and to assess the feasibility of this approach.MethodsThe training course was developed via focus groups and relevant literature and refined with an advisory board. An evaluation design was developed to evaluate training outcomes and to examine feasibility. To assess self-confidence, knowledge, skills, and attitudes: (1) standardized surveys were applied at T1 (before training), T2 (directly after), and T3 (3 months later), and were analyzed by descriptive and non-parametric statistics; and (2) participants’ open feedback was summarized by content.ResultsA two-day multi-disciplinary training was developed to improve self-confidence via diverse teaching methods. Twenty-four HPs from general and specialized PC were participated. Via self-rating on Likert scales at three time points, improvements were seen at T1, T2, and partly remained at T3, especially in the overall item of self-confidence in communicating with patients about their DD (means: 4.3. at T1, 5.7 at T2, and 5.9 at T3; on a 7-point scale with 1 = lowest value and 7 = highest value). Fewer improvements were found in skills (using different approaches) and attitudes (feeling less helplessness). Open feedback revealed a high appreciation for the training, especially the composition of participants, the role-play, and the overall increase of awareness of the topic.Significance of resultsThe developed training on addressing DD meets a need and was perceived by the participants to be of added value. Future research should measure training effects with a validated instrument, including more participants, diverse participant groups, and a control group. Effects on patients should be assessed.

In order to investigate controversies surrounding the desire to die phenomenon in palliative care by analyzing expert opinions on the topic, we carried out a secondary qualitative data analysis of free text comments collected during a Delphi survey that was designed to develop a conversation aid for dealing with desire to die in everyday clinical practice. Between 01/2018 and 03/2018, a two-round Delphi survey was carried out with national (German) and international palliative care experts. Free text comments were reinvestigated to identify controversies surrounding the desire to die phenomenon. An additional in-depth analysis focused on statements expressing attitudes towards proactively addressing (potential) desires to die. Within the Delphi survey, 103 of 149 multi-professional participants (almost all of them with practical and only six with exclusively theoretical expertise in palliative care) generated 444 free text comments. Thereof, we identified three main categories related to dealing with desire to die: “outer framework“, “extended care system” and “health-professional-patient-relationship”. Ambivalences, taboos and uncertainties surrounding desire to die in palliative care became apparent. Experts are divided concerning the practice of proactively addressing desire to die. Even if these conversations–especially the proactive approach–are also viewed critically, we conclude that open-ended and respectful communication about desire to die between health professionals and patients can be understood as an eligible intervention in palliative care. Proactively addressing the topic is a possible way to open up such conversations.

Today, a growing number of individuals with mild cognitive impairment (MCI) wish to assess their risk of developing Alzheimer's disease (AD) dementia. The expectations as well as the effects on quality of life (QoL) in MCI patients and their close others through biomarker-based dementia risk estimation are not well studied.The PreDADQoL project aims at providing empirical data on effects of such prediction on QoL and at developing an ethical and legal framework of biomarker-based dementia risk estimation in MCI.In the empirical study, 100 MCI-patients and their close others will be recruited from two sites (Germany and Spain). They receive standardized counselling on cerebrospinal fluid (CSF) biomarker-based prediction of AD dementia and a risk disclosure based on their AD biomarker status. A mixed methods approach will be applied to assess outcomes.The pilot-study yielded a specification of the research topics and newly developed questionnaires for the main assessment. Within this binational quantitative and qualitative study, data on attitudes and expectations toward AD risk prediction, QoL, risk communication, coping strategies, mental health, lifestyle changes, and healthcare resource utilization will be obtained. Together with the normative part of the project, an empirically informed ethical and legal framework for biomarker-based dementia risk estimation will be developed.The empirical research of the PreDADQoL study together with the ethical and legal considerations and implications will help to improve the process of counselling and risk disclosure and thereby positively affect QoL and health of MCI-patients and their close others in the context of biomarker-based dementia risk estimation.

Eine Vielzahl von Studien belegt den positiven Einfluss von Spiritualitat im Umgang mit schwierigen Lebenssituationen. Studien zur Spiritualitat im hoheren Lebensalter stellen in der deutschsprachigen gerontologischen Forschungslandschaft allerdings eine Ausnahme dar. In der Theorie der Gerotranszendenz von Tornstam finden sich jedoch Hinweise darauf, dass spirituelle Selbst- und Weltdeutung gerade im hoheren Lebensalter aufgrund einer Perspektivverschiebung von besonderer Relevanz auch fur die Aufrechterhaltung von Lebenszufriedenheit ist. Diese Arbeit verfolgt die Forschungsfragen, wie sich Spiritualitat in der Hochaltrigkeit (80 Jahre und alter) prasentiert und inwiefern diese Auspragung spezifisch fur das hohere Lebensalter ist. Es wurden problemzentrierte Interviews mit 20 Hochaltrigen durchgefuhrt, die mittels qualitativer Inhaltsanalyse ausgewertet wurden. Spiritualitat selbst stellt kein Spezifikum des hoheren Alters dar. In ihrer Auspragung ist sie jedoch als existenzieller Prozess der Transformation und Wandlung durch Sozialisationsprozesse und biografische Erlebnisse und Erfahrungen uber den Lebenslauf hinweg gepragt sowie durch Subjektivierungs- und Individualisierungsprozesse charakterisiert. Zudem kommt den mit ihr verbundenen existenziellen Fragen gerade im hoheren Alter eine besondere Relevanz und Dringlichkeit zu, die sich auf affektiven, reflexiven und performativen Dimensionen ausdruckt und in ihren Antworten zwischen Fragilitat und Kontinuitat changiert. Spiritualitat hochaltriger Menschen ist als (Zwischen-)Ergebnis der uber den Lebensverlauf gemachten Erfahrungen und Erlebnisse vor dem Hintergrund der jeweiligen Sozialisation und individuellen existenziellen Selbst- und Weltdeutung differenziert. Als entsprechend dynamisch und heterogen ist sie in Forschung und Praxis zur Forderung des Wohlbefindens im hoheren Lebensalter wahrzunehmen.

Objective: Although desire to die (DD) of varying intensity and permanence is frequent in patients with advanced cancer and those receiving palliative care, uncertainty exists concerning appropriate therapeutic responses to it. To support health professionals in dealing with patients´ potential DD, a training program and a semi-structured clinical interview guideline was developed. This study aimed for a revision of and consensus building on the clinical guideline to support proactively addressing DD and routine exploration of death and dying distress. Methods: Within a sequential mixed methods design, we invited 16 palliative patients to participate in semi-structured interviews and 377 (inter-)national experts to attend a two-round Delphi process. Interviews were analyzed using qualitative content analysis and an agreement consensus for the Delphi was determined according to predefined criteria. Results : 11 (69%) patients from different settings participated in face-to-face interviews. As key issues for conversations on DD they pointed out the relationship between professionals and patients, the setting and support from external experts, if required. A set of 149 (40%) experts (132/89% from Germany, 17/11% from 9 other countries) evaluated ten domains of the clinical guideline. There was immediate consensus on nine domains concerning conversation design, suggestions for (self-)reflection, and further recommended action. The one domain in which consensus was not achieved until the second round was “proactively addressing DD”. Conclusions : We have provided the first semi-structured clinical guideline to identify and address DD and to respond therapeutically – based on evidence, patients’ views and consensus among (inter-)national professional experts. Trial registration: German Clinical Trials Register (No. DRKS00012988).

ObjectiveWe aimed to elucidate the views on life as narrated by patients in palliative care (PC) to find out what patients deem to be essential in their life, whether something has changed concerning their view of life in light of the disease, and whether interviewees would like to give others something to take with them.MethodData were collected from narrative audio and video interviews with 18 inpatients in a specialized PC unit. Interviews were recorded and transcribed verbatim and analyzed using qualitative content analysis applying MAXQDA software. CDs and DVDs with recorded interviews were provided to patients.ResultEighteen interviews were analyzed: 11 audio and 7 video recordings. The age range was 41–80 years. Patients reported on changes in their views on life. Despite it being a complex and painful process, patients still gave examples of benefits experienced during their illness trajectory. Patients identified resources and coping strategies such as meaningful contacts with close others and mindfulness. Shifts have occurred in terms of taking more time for themselves, enjoying the moment, being more calm, and spending more time with family and friends. What patients wanted to pass on to others was to pay attention to the needs of both the self and the others, shape your life individually, confront yourself early with issues of death and dying, and care for your fellow human beings. Patients and relatives valued the opportunity to keep their interview as a CD/DVD.Significance of resultsResults support the idea that many people facing terminal illness continue to focus on living and remain within their biographies and the contexts of their lives, even if their functional status declines. Patients and relatives appreciated that interviews were provided as kind of a legacy. Yet, more robust research is needed to decide whether such interviews yield any therapeutic effect.

A multitude of studies have demonstrated a positive effect of spirituality for dealing with difficult situations in life; however, specific studies on spirituality in older age are exceptionally rare within the German gerontological research landscape. The theory of gerotranscendence by Tornstam indicates that spirituality is of particular importance for maintaining life satisfaction especially in older age, due to a change in perspective.This study looked into the research questions of how spirituality is presented in the oldest old (80 years and older) in Germany and to what extent its characteristics are specific to older age.Problem-centered interviews were conducted with 20 oldest old subjects and evaluated using qualitative content analysis.Spirituality in itself is not specific to very old age. Its shaping, however, as an existential process of transformation and redefinition, is specific in the oldest old due to their socialization and biographical experiences over the life course impregnated by processes of subjectification and individualization. In addition, its relation to existential questions gains increasing relevance and priority in very old age in an affective, reflective and performative dimension, and the answers change between fragility and continuity.As a heterogeneous (intermediate) result of experiences over the life course against the background of socialization and individual existential interpretation of "Self" and "World", spirituality in the oldest old should be perceived in this diverse and dynamic manner in research and practice, in order to foster well-being in old age.

Patients severely affected by multiple sclerosis (MS) present with complex symptoms and needs requiring an interdisciplinary care approach.Analysis of when and why specialized palliative care integration would be beneficial via examining health care professionals' attitudes.A two-round online Delphi study and expert workshop were undertaken and analyzed descriptively.Following an extensive online search, 164 professionals with expertise in treating and caring for severely affected patients with MS were contacted. Professionals included neurologists, urologists, general practitioners, MS nurses, speech therapists, physiotherapists, psychologists, and palliative care physicians. Forty-six consented to participate: 33 of 46 (71.4%) and 15 of 33 (45.5%) experts responded in the first and second round, respectively.Consensus was reached among all respondents (100%) defining the term "severely affected": 78.8% and 86.7%, respectively, thought that specialized palliative care should begin once the disease has progressed (Expanded Disability Status Scale [EDSS]6 and nursing care required). When the need exists for communication about disease progression (93.3%), psychological support (93.3%), relatives support (93.3%), and pain medication (86.7%) specialized palliative care should be consulted. Specialized palliative homecare was rated (93.3%) "very important." The workshop documented the paucity of home visits and specialized MS care in nursing homes.Our results clearly identified specific areas in which palliative care will likely prove to be a valuable asset in the treatment course of MS. This information should serve clinicians, indicating when to consider palliative care services and help further reduce or eliminate uncertainty about how palliative care can be integrated in the course of MS.

Quality indicators (QIs) are needed to monitor and to improve palliative care. Care of patients in the last days of life is a discrete phase of palliative care and therefore specific QIs are needed. This study aimed to identify and evaluate current QIs against which to measure future care of patients in the last days of life.To identify QIs for patients in the last days of life an update of the literature and national guidelines was conducted. Subsequently, an international panel of palliative care experts was asked to evaluate the identified QIs: how well they describe care and how applicable they are for care in the last days of life. Also additional QIs were asked.In total, 34 QIs for care in the last days were identified in the literature and guidelines. The experts (response rate 58%) agreed with seven QIs as being good descriptors and applicable: concerning a home visit for the family following a patient's death, the presence of a dedicated family room, limited patients receiving chemotherapy, limited need for pain control, gastrointestinal symptoms, and communication from professional to patient and family. The experts also suggested 18 additional topics for QIs for the last days of life.Currently no definite set of QIs exist to describe quality of care of patients in their last days of life. New QIs that are focused on care for patients in their last days of life, their relatives, as well as their professional caregivers are needed.

This study aims to assess and improve communication education for medical students in palliative care (PC) with the use of simulated patients (SP) in Germany. More specifically, to explore how students evaluate the use of SP for end-of-life communication training and which fears and barriers arise. A pilot course was implemented. Qualitative content analysis was used to analyse transcribed recordings of the course. Pre- and post-course questionnaires containing open-ended questions ascertained students’ motivation for participating, their preparation within their degree programme and whether they felt they had learned something important within the course. Seventeen medical students in their third to fourth year of education (age 22–31) participated in the five-session course and answered the questionnaires (pre n = 17, post n = 12). Students felt insufficiently prepared and insecure. Discussing end-of-life issues was experienced as challenging and emotionally moving. Within the conversations, although students sometimes showed blocking behaviour in reaction to emotional impact, they valued the consideration of emotional aspects as very important. The course was overall highly appreciated and valued as being helpful. The communication situation with the SP was perceived as authentic. Ten out of 12 students confirmed to have learned something important (post course). Our results indicate an urgent need for better communication training for medical students. Due to the fact that bedside teaching in PC is not feasible for all students, training with standardized SP can be a way to generate an authentic learning situation. Techniques to address fears and blocking behaviour should, however, also be considered.

The purpose of this review is to give an overview of challenges that have been addressed in recent research in end-of-life communication.Diversity of difficulties that may occur in communication about end-of-life issues has been showed. The emotional quality of this communication requires special skills from professionals involved. Studies showed that physicians and medical students are often overstrained and avoid end-of-life discussions. Health professionals and patients are often ambivalent about end-of-life discussions. Nevertheless, professionals are expected to initiate these in an honest, needs-oriented way. Patient preferences are difficult to infer and have to be assessed explicitly and regularly. Studies showed that the emotional impact of end-of-life discussions can lead to a high burden or avoidance of professionals. Interdisciplinary, multi-professional work can support health professionals in end-of-life care but often structural barriers obstruct possible benefits.Health professionals need to initiate end-of-life communication in a sensitive way. Specific demands for health professionals in end-of-life communication are to differentiate own emotions and life events from those of patients and to deal with both adequately. Moreover, structural aspects can lead to difficulties between different specialties, professions and sectors, which can have a negative impact on adequate care for patient and relatives. Special efforts for improvement are needed.