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Introduction
Current institution
Publications
Publications (70)
Background: Severely ill patients often express a desire to die, which can turn into suicidality. To support health professionals in managing this issue, we initially created a two-day face-to-face training to enhance self-confidence, knowledge, attitudes, and skills. Due to the increasing need for more accessible formats, we aimed to transition th...
Objectives
Up to 40% of seriously ill patients develop a (temporary) desire to die which can lead to requests for assisted dying. Health professionals often feel uncertain about addressing these topics, while informal caregivers may feel guilty and left out. Open and respectful communication proves beneficial. It remains unclear how this communicat...
Background
Care in the dying phase is often suboptimal in hospitals outside specialised palliative care. Studies of the implementation of recommendations for care in the dying phase are rare. Medical records can provide information in this regard.
Methods
Retrospective medical record analysis of n=400 patients who died on six intensive care units a...
Objectives
Up to 40% of severely ill patients report at least an occasional desire to die, opening up not only to professionals but also to hospice volunteers and patients’ informal caregivers. Based on an existing, evaluated 2-day desire to die training for professionals, we intend to adapt the training for hospice volunteers and informal caregive...
The literature describes a plethora of different measures to support healthcare professionals in the care for the dying. The aim is the identification and assessment of measures for the care in the dying phase to give healthcare professionals of all disciplines an overview on such measures in form of a self-developed toolkit. Two databases were sea...
Objectives
Wishes to hasten death (WTHDs) are common in patients with serious illness. The Schedule of Attitudes Toward Hastened Death (SAHD) is a validated 20-item instrument for measuring WTHD. Two short versions have also been developed based on statistical item selection. However, all existing versions show some limitations with potential for i...
Background
Patients with serious illness frequently report (temporary) wishes to hasten death. Even until the end-of-life, many patients also harbor a will to live. Although both phenomena are negatively correlated according to some studies, they can also co-exist. Knowledge about the complex relationship between the seemingly opposing wish to hast...
Introduction. Globally, hospitals are an important place in end-of-life care and most frequent place of death in Germany (47%), but at the same time, the least preferred one—both for patients and their informal caregivers. As hospital care in the dying phase on non-palliative care wards has rarely been studied systematically, we assessed the curren...
Background:
Compassionate communities aim to empower people to deal with death, dying, and bereavement. They also intend to facilitate access to care and support at the end of life. However, there is a need for systematic knowledge on how to achieve the desired outcomes for citizens and for insights regarding the development, implementation, and e...
Background
The desire to die can occur in palliative care patients with a prevalence of up to 22%. Not every desire to die is accompanied by a pressure to act, but usually by a burden that can arise from various factors. To address this burden appropriately, health care workers should be trained. Based on an evaluated course on handling the desire...
Zusammenfassung
Ethikkommissionen überprüfen die Einhaltung ethischer Prinzipien bei medizinischen Forschungsvorhaben. Sie sind in ihrem Verfahren an klinischen Studien ausgerichtet, begutachten aber z. B. auch qualitative Forschung. In einer teilstrukturierten Online-Befragung wurden Erfahrungen qualitativ Forschender mit der Begutachtung durch Et...
Patients diagnosed with cancer may develop both temporary and permanent desires to die in the course of their disease. If there is a strong corresponding pressure to act, this desire to die may amount to suicidality or wishes for assisted suicide. Although most desires to die are not accompanied by suicidality, they can be an expression of intense...
Abstract Health Services Research in the Last Year of Life concerns the scientific assessment of the situation of seriously ill and dying people as well as their relatives. The last year of life is not to be understood literally, but designates the appropriate early integration of hospice and palliative care. The overall goal is an optimal quality...
Todeswünsche in der Palliativversorung sind ein Phänomen, mit dem Versorgende in allen palliativen Setting regelmäßig konfrontiert werden. Bei Unsicherheiten im Umgang damit hilft die Arbeit mit einem teilstrukturierten Leitfaden. Darüber informiert das vorliegende Kapitel. Selbstverständlich kann ein solcher Leitfaden eine lebendige und adaptive G...
Warum ein Memorandum zur Versorgungsforschung im letzten Lebensjahr?
Mit den Fortschritten der Medizin und dem demographischen Wandel wird nicht nur die Lebensspanne in der Bevölkerung verlängert, sondern bei dem zunehmenden Anteil von alten und hochaltrigen Menschen auch immer häufiger die letzte Lebenszeit mit Multimorbidität, Demenz oder mit sch...
Zusammenfassung
Versorgungsforschung im letzten Lebensjahr beschäftigt sich mit der wissenschaftlichen Erfassung der Begleitung und Betreuung von schwerstkranken und sterbenden Menschen sowie ihrer An- und Zugehörigen. Patientinnen und Patienten in der letzten Lebensphase können unterschiedlichen Erkrankungsgruppen angehören, besondere Charakterist...
Objectives
Despite the potential benefits of open communication about possible desires to die for patients receiving palliative care, health professionals tend to avoid such conversations and often interpret desires to die as requests for medical aid in dying. After implementing trainings to foster an open, proactive approach toward desire to die,...
Patients receiving palliative care often express a desire to die. Forms and backgrounds of these expressions can be diverse. To contribute to a better understanding of this phenomenon, we analyzed patients' desire to die expressions reported by palliative care providers participating in 11 communication trainings on desire to die. The 102 participa...
![Topics of the patient file analysis [39]](publication/360425778/figure/fig4/AS:1152920066232321@1651888972741/Topics-of-the-patient-file-analysis-39_Q320.jpg)
Background
Hospitals are globally an important place of care for dying people and the most frequent place of death in Germany (47%), but at the same time, the least preferred one – for both patients and their relatives. Important indicators and outcome variables indexing quality of care in the dying phase are available, and various proposals to ach...
Zusammenfassung
Ziel der Studie Mitarbeitende der Palliativversorgung werden oft mit Todeswünschen von Patient*innen konfrontiert und berichten Unsicherheiten im Umgang damit. Daher wurden Schulungen zum Thema durchgeführt und evaluiert.
Methodik Teilnehmende der zweitägigen Schulungen beantworteten davor (t0), danach (t1) und 1 Jahr später (t2) Fr...
Zusammenfassung
Hintergrund Die Versorgungsforschung ist von Multidisziplinarität und Methodenpluralität gekennzeichnet. Die Medizin bildet einen wichtigen Orientierungspunkt, auch in der Adressierung forschungsethischer Fragen. Zugleich werden in sozialwissenschaftlichen Fächern jedoch die etwa in der Medizin etablierten stark formalisierten Begut...
Background
Palliative patients frequently express a desire to die. Health professionals report uncertainty regarding potential risks of addressing it.
Aim
We aim to evaluate effects of desire to die-conversations on palliative patients.
Design
Within a prospective mixed-methods cohort study, we trained health professionals in dealing with desire...
Dealing with Desire to Die in Palliative Care Abstract. In the course of new legal regulations, the question of how to deal with desire to die is the focus of current professional debates. From the perspective of palliative care, a desire to die should not be thought of only as the wish for assisted suicide, but should be recognised in all its poss...
Background The number of long term cancer survivors during childhood or adolescence is increasing steadily. Survivors often suffer from physical or psychosocial long term effects. There is currently little data on the arrangement of long term aftercare in the field of psychosocial care.
Methods In November 2017 a questionnaire was sent to 1900 canc...
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 p...
Background:
Desire to die, understood as a broad phenomenon, is common in patients receiving palliative care. Euthanasia ("termination of life on request", §216 German Criminal Code) is currently forbidden in Germany, the legal restrictions with regard to assisted suicide ("assistance of suicide with intent of repeated conduct", §217 German Crimin...
Background
In contrast to typical measures employed to assess outcomes in healthcare such as mortality or recovery rates, it is difficult to define which specific outcomes of care are the most important in caring for dying individuals. Despite a variety of tools employed to assess different dimensions of palliative care, there is no consensus on a...
Background:
Although desire to die of varying intensity and permanence is frequent in patients receiving palliative care, uncertainty exists concerning appropriate therapeutic responses to it. To support health professionals in dealing with patients´ potential desire to die, a training program and a semi-structured clinical approach was developed....
Background
The aim of palliative care is to optimize the quality of life of patients with incurable advanced diseases. Adequate psychotherapeutic and psychiatric care is essential in this context.Objective
This article presents the recommendations of the S3 guideline on palliative care for patients with incurable cancer with regard to psychotherape...
Background: Although desire to die of varying intensity and permanence is frequent in patients receiving palliative care, uncertainty exists concerning appropriate therapeutic responses to it. To support health professionals in dealing with patients´ potential desire to die, a training program and a semi-structured clinical interview approach was d...
Background: Although desire to die of varying intensity and permanence is frequent in patients receiving palliative care, uncertainty exists concerning appropriate therapeutic responses to it. To support health professionals in dealing with patients´ potential desire to die, a training program and a semi-structured clinical interview approach was d...
Objective
Patients’ 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.
Methods
The training...
Background: Although desire to die of varying intensity and permanence is frequent in patients receiving palliative care, uncertainty exists concerning appropriate therapeutic responses to it. To support health professionals in dealing with patients´ potential desire to die, a training program and a semi-structured clinical interview approach was d...
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...
Die flächendeckende pflegerische Versorgung schwerkranker Kinder und Jugendlicher stellt in Niedersachsen aufgrund der geringen Bevölkerungsdichte bei gleichzeitig großer Fläche eine besondere Herausforderung dar. Der Mangel an Fachkräften in der Pflege erschwert diese Problematik noch. In einem dreijährigen Projekt wurden Ursachen für den Fachkräf...
Background:
A desire to die (DD) is frequent in palliative care (PC). However, uncertainty remains as to the appropriate therapeutic response. (Proactive) discussion of DD is not usually part of standard care. To support health practitioners' (HPs) reactions to a patient's DD, a training program has been developed, piloted and evaluated. Within th...
Purpose:
Hyponatremia is a common electrolyte abnormality seen in hospitalized patients. It may cause a variety of symptoms and is associated with longer hospitalizations and higher mortality. However, to date, only little is known about the extent of hyponatremia in patients with incurable diseases and whether it is associated with physical sympt...
Background: In Germany some 2 000 children and adolescent are diagnosed with cancer every year. Curing rates are increasing and therewith also the number of survivors is growing. Survivors frequently suffer from long-term effects of the disease and its treatment, but long-term follow-up care shows deficits. Method: The Network for oncological advis...
Background: Acute lymphoblastic leukemia (ALL) is the most common form of paediatric cancer. Maintenance therapy as last treatment phase includes oral chemotherapy with methotrexate (MTX) and mercaptopurine (6-MP), self- or parent-administered at home, given for about 1 ½ years, and qualified as decisive for an optimum therapy outcome. The aim of o...
Background:
In 2007 the children's right to specialised paediatric palliative home care became law in Germany. This claim should be met in Lower Saxony by the establishment of a comprehensive specialised paediatric home care (SPPHC). Since April 2010, a central office undertakes the coordination and administration throughout the federal state. Reg...
Background: In 2007, the patient’s right to specialized pediatric palliative home care (SPPHC) became law in Germany. In Lower Saxony, a German federal state with a low population density, an adequate care for children suffering from life-limiting conditions (LLC) should be ensured in the context of low patient numbers and low numbers of specialist...
Fragestellung: In der Versorgung von schwerstkranken und sterbenden erwachsenen Patienten hat die Physiotherapie zunehmend an Bedeutung gewonnen. Zur Rolle der Physiotherapie sowie zu Potenzialen und Barrieren bei der Versorgung von schwerstkranken Kindern und Jugendlichen in Hospizen und im Bereich der spezialisierten ambulanten padiatrischen Pall...
Background
To provide comprehensive high-quality health care is a great challenge in the context of high specialisation and intensive costs. This problem becomes further aggravated in service areas with low patient numbers and low numbers of specialists. Therefore, a multidimensional approach to quality development was chosen in order to optimise t...
Background
In 2007, the patient’s right to specialised palliative home care became law in Germany. However, childhood palliative care in territorial states with low patient numbers and long distances requires adapted models to ensure an area-wide maintenance. Actually, general paediatricians are the basic care providers for children and adolescents...
Questionnaire on Paediatric Palliative Home Care by General Paediatricians in their own practice.
To provide comprehensive high-quality health care is a great challenge in the context of high specialisation and intensive costs. This problem becomes further aggravated in service areas with low patient numbers and low numbers of specialists. Therefore, a multidimensional approach to quality development was chosen in order to optimise the care of...
