Raymond Voltz

• University of Cologne

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...

Background An increasing number of patients in the palliative phase of their disease are cared for at home by palliative home care services. A sense of security, normality of everyday life and symptom control are found to be active factors of quality of care in Specialized Palliative Home Care. Whether this also applies to General Palliative Home C...

Background: Allogeneic stem cell transplantation (allo-SCT) represents a firmly established therapeutic option for patients facing (non-)malignant haematological diseases. Despite its curative potential, however, this treatment is associated with substantial morbidity and mortality rates as well as a decreased quality of life. Given this context, a...

Patients treated with an allogeneic hematopoietic stem cell transplantation (allo-SCT) face a significant mortality risk, which might trigger existential distress. We aimed to investigate how hematology health care professionals (HCPs) address life-threatening conditions with allo-SCT recipients and their relatives, and what are challenging and sup...

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 Outcome measurement is essential to progress clinical practice and improve patient care. Aim To develop a Core Outcome Set for best care for the dying person. Design We followed the Core Outcome Measures in Effectiveness Trials (COMET) Initiative guidelines, which involved identifying potential outcomes via a systematic literature revi...

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...

Understanding healthcare professionals’ (HCPs) experiences with patients undergoing hematopoietic allogeneic stem cell transplantation (allo-HSCT) is crucial, given its dual nature of offering a hope for cure which on the other hand is accompanied by a high risk for morbidity and mortality. Yet, how HCPs experience their patients’ existential threa...

The prospect of death influences people’s thoughts about and how they deal with their remaining time. We aimed to understand whether patients with progressive, life-limiting diseases are oriented in the past, present, or future and how they deal with temporality. We conducted 57 in-depth interviews with end-of-life patients in 10 countries using th...

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...

Purpose: We aimed to gain in-depth insights into the challenges and needs of adolescents and young adults with cancer (AYA) throughout their disease to detect increased needs for support. Methods: We conducted face-to-face interviews with 15 patients 18-39 years old at the time of diagnosis of malignancies who had completed treatment at the time of...

Background: Dying at home poses many challenges for family carers and is particularly distressing for those with limited social support. In addition to financial hardship, this perceived burden may be a deciding factor in providing care at home. Aims: To explore what motivates people to provide care at home until death. Methods: Qualitative intervi...

Background Persons with severe Multiple Sclerosis (PwsMS) face complex needs and daily limitations that make it challenging to receive optimal care. The implementation and coordination of health care, social services, and support in financial affairs can be particularly time consuming and burdensome for both PwsMS and caregivers. Care and case mana...

Objectives According to the “Last Year of Life in Cologne” study, 68% of patients with a serious and terminal illness wanted to die at home, but 42% died in hospital. Only 1 in 5 died at home. Most people want to spend their last days and hours at home, but the reality is that this is not always possible. Recommendations are needed on how best to s...

Objective Malignant gliomas impose a significant symptomatic burden on patients and their families. Current guidelines recommend palliative care for patients with advanced tumors within eight weeks of diagnosis, emphasizing early integration for malignant glioma cases. However, the utilization rate of palliative care for these patients in Germany r...

Purpose While the unique situation of adolescents and young adults with cancer (AYAs) has become the focus of research and clinical practice, little is known about how they deal with the threat to life at a curative stage. The aim of this study was to obtain insight into the challenges, coping strategies, and needs of AYAs regarding the life-threat...

Background: Leadership competencies are essential for the future development of the field of palliative and hospice care. However, a consensus on the core competencies of good leadership is not yet available. Objective: To elicit consensus on core leadership competencies in palliative care. Design: Based on a literature review, a list of 119 specif...

Background The public health approach to end-of-life care has led to initiatives to promote caring communities, involving the community in supporting vulnerable dying people and their families. Our study aimed to explore how the COVID-19 pandemic affected the relevance of a caring community, whether the concept of a caring community took on a diffe...

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...

Mit steigendem Alter oder Erhalt einer lebenslimitierenden Diagnose kann sich das Bewusstsein für die eigene Endlichkeit verstärken. Damit treten häufig neben Bedürfnissen der medizinischen Versorgung vor allem auch existenzielle psychosoziale Bedürfnisse wie der Erhalt der Selbst-Identität in den Vordergrund. Es können existenzielle Fragen zu Lebe...

Background To combine the benefits of hospice and palliative care, the integration of both seems self-evident. Aim of this study was to explore clinical staff’s and volunteers’ expectations and concerns of the first university hospice in Germany planning for implementation. Methods Staff and volunteers of the Department of Palliative Medicine of t...

Aim Health and social care structures available for the last year of life care are still not always adequately used. Palliative care, for instance, is still provided late in the disease course, contradicting early integration. We therefore aim to define elements of a possible complementary support concept based on specific experience to help facili...

Objectives: Standardized measures for assessing neurological patients needing palliative care remain scarce. The Integrated Palliative care Outcome Scale for neurological patients in its short form (IPOS Neuro-S8) helps assess and identify patients' symptom burden and needs early but has not yet been validated in German. The aim was to culturally...

Purpose Palliative day care clinics (PDCCs) complement inpatient and home palliative care and provide access to a range of multi-professional services. However, they are not part of standard care in Germany. Yet, international studies show that PDCCs have a positive impact on e.g. quality of life. To evaluate one of the first PDCCs in Germany (Asch...

The second, updated and expanded edition of the handbook provides an overview of knowledge about age and aging in "Western" societies at the beginning of the 21st century that is equally suitable for research and study. The focus is on relevant contributions from the social and behavioral sciences and their approach to selected aspects of age(ing)....

Purpose/objectives: Care and case management (CCM) aims to provide optimal care for patients and their caregivers on an individual and superordinate level of health care providers and authorities. To facilitate a clear and systematic CCM process as part of a clinical study intervention, a semistructured manual is the prerequisite. Primary practic...

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...

Background General practitioners (GPs) are important providers of palliative home care (PHC). To deliver adequate palliative care, cooperation with specialised PHC teams is necessary. Specialised PHC is a type of care for severely ill patients by specialised providers. Little is known about the involvement of German GPs in specialised PHC. Objecti...

Due to demographic change, the number of patients in palliative care (PC) is increasing. General Practitioners (GPs) are important PC providers who often have known their patients for a long time. PC can be demanding for GPs. However, there are few studies on the job stress factors of GPs performing PC and the potential influence of their PC traini...

Objectives: To ascertain the involvement of palliative care with neurology services in the care of people with amyotrophic lateral sclerosis (ALS) in the United Kingdom, Italy and Switzerland, in particular the collaboration with and referral from neurology, the involvement in multidisciplinary team care and in the respiratory support of ALS patien...

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...

Frühzeitige Identifikation von Patient*innen im letzten Lebensjahr kann eine personenzentrierte Versorgung am Lebensende unter Einbezug der Palliativmedizin fördern. LYOL-C II ist eine kontrollierte Phase-II Studie mit Prä-Post-Design. Mithilfe der Surprise Question (SQ) und dem SPICT-DE TM Modell werden Patient*innen zweier Abteilungen einer Unikl...

Hintergrund Die Bedürfnisse und Unterstützungsbedarfe von Menschen am Lebensende und ihren pflegenden Nahestehenden sind komplex. Vor allem im häuslichen Umfeld ist eine professionelle und medizinische Versorgung als grundlegende Unterstützung wichtig, wobei es Familien oft schwerfällt, diese Hilfe anzunehmen. Ziel dieser Untersuchung ist es, die G...

Hintergrund Der Anteil der Verstorbenen zu Hause ist, verglichen mit Sterbefällen im Krankenhaus, seit Jahren deutlich niedriger. Aktuelle Zahlen belegen jedoch, dass es seit der COVID-19-Pandemie zu einer Zunahme an Sterbefällen im häuslichen Umfeld gekommen ist. Studien zufolge war die Pandemiesituation für eine Versorgung zu Hause teilweise sog...

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,...

Objective: The aim of the study is to examine differences in hospital care between patients with cancer and non-cancer conditions in their dying phase, perceived by bereaved relatives. Methods: A retrospective cross-sectional post-bereavement survey, with the total population of 351 deceased, 91 cancer patients and 46 non-cancer patients, who sp...

Introduction Adequately addressing the needs of patients at the end of life and their relatives is pivotal in preventing unnecessary suffering and optimising their quality of life. The purpose of the iLIVE study is to contribute to high-quality personalised care at the end of life in different countries and cultures, by investigating the experience...

Purpose To compare health care experiences of patients with cancer or non-cancer diseases in their last year of life. Methods A cross-sectional post-bereavement survey was conducted using an adapted German version of the VOICES questionnaire (VOICES-LYOL-Cologne). Differences in the reported experiences were assessed using a two-sided Pearson’s ch...

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...

Patient-centred care in the last year of life: Using co-design to develop a two-sided trigger question-based intervention in acute hospitals

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...

Background Since the onset of the SARS CoV2 pandemic, protective and isolation measures had a strong impact on the care and support provided to seriously ill and dying people at the end-of-life. Aim Exploring bereaved relatives’ experiences of end-of-life care during the SARS-CoV2 pandemic. Design Qualitative interview study with bereaved relativ...

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...

Background: The perception of being closer to death can be experienced due to old age or life-limiting diseases, and can pose profound existential challenges. Actively confronting death-related issues and existential questions may increase psychosocial comfort and stimulate personal growth, whereas dysfunctional coping may lead to existential dist...

Objectives Patients in their last year of life, as well as their relatives, often feel that existent care structures of the healthcare system do not adequately address their individual needs and challenges. This study analyzes unmet needs in terms of unsolved problems and unwanted decision-making in the health and social care of patients in their l...

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...

Background: To inform quality improvement and strengthen services provided in the last year of life, measuring quality of care is essential. For Germany, data on care experiences in the last year of life that go beyond diagnoses and care settings are still rare. Aim of this study was to develop and validate a German version of the ‘Views of Informa...

Background: The perception of being closer to death can be experienced due to old age or life-limiting diseases, and can pose profound existential challenges. Actively confronting death-related issues and existential questions may increase psychosocial comfort and stimulate personal growth, whereas dysfunctional coping may lead to existential distr...

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...

The German Association of Palliative Care developed an evidence-based guideline about the management of malignant wounds in adult patients with incurable cancer. There is a lack of evidence-based guidelines about fungating wounds and a confusing wide range of available wound dressings. The goal of the guideline is to reduce the suffering of patient...

Introduction Patients with multiple sclerosis (MS) have complex needs that range from organising one’s everyday life to measures of disease-specific therapy monitoring to palliative care. Patients with MS are likely to depend on multiple healthcare providers and various authorities, which are often difficult to coordinate. Thus, they will probably...

Background Respiratory medicine (RM) and palliative care (PC) physicians’ management of chronic breathlessness in advanced chronic obstructive pulmonary disease (COPD), fibrotic interstitial lung disease (fILD) and lung cancer (LC), and the influence of practice guidelines was explored via an online survey. Methods A voluntary, online survey was d...

Background In the SARS-CoV-2 pandemic, general and specialist Palliative Care (PC) plays an essential role in health care, contributing to symptom control, psycho-social support, and providing support in complex decision making. Numbers of COVID-19 related deaths have recently increased demanding more palliative care input. Also, the pandemic impac...

Objective Burdensome transitions are typically defined as having a transition in the last three days or multiple hospitalizations in the last three months of life, which is seldom verified with qualitative accounts from persons concerned. This study analyses types and frequencies of transitions in the last year of life and indicators of burdensome...

Background Awareness of the impending end of one’s life can pose profound existential challenges, thereby impairing well-being. Confronting one’s own end of life may be an approach to meet the psychological needs and consequently enhance overall well-being. Different approaches of confrontation have been evaluated positively using measures of psych...

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 During the SARS-CoV2 pandemic, protection measures, as well as visiting restrictions, had a severe impact on seriously ill and dying patients and their relatives. The study aims to describe the experiences of bereaved relatives of patients who died during the SARS-CoV2 pandemic, regardless of whether patients were infected with SARS-CoV2...

The significance of a palliative care approach for patients with neurological disorders other than dementia, such as patients with amyotrophic lateral sclerosis, was recognized by Dame Cicely Saunders in her conceptualization of hospice and is increasingly supported by scientific evidence. From the clinical perspective, the need for palliative care...

Introduction: The Last Year of Life Study-Cologne Part I (LYOL-C I) has identified general hospital units as the most important checkpoints for transitions in the last year of life of patients. Yet, satisfaction with hospitals, as reported by bereaved relatives, is the lowest of all health service providers. Thus, the LYOL-C Part II (LYOL-C II) fo...

Background Little is known about the nature of patients’ transitions between healthcare settings in the last year of life (LYOL) in Germany. Patients often experience transitions between different healthcare settings, such as hospitals and long-term facilities including nursing homes and hospices. The perspective of healthcare professionals can the...

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...

Objective A sense of security is important in palliative home care. Yet, knowledge about which components contribute most to feeling secure from the patients’ and family caregivers’ perspectives, especially since the introduction of specialist palliative home care, is sparse. The goal of the current study was to determine the key components contrib...

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 Providing patient-centered care (PCC) during the last year of life (LYOL) can be challenging due to the complexity of the patients’ medical, social and psychological needs, especially in case of chronic illnesses. Assessing PCC can be helpful in identifying areas for improvements. Since not all patients can be surveyed, a questionnaire f...

Objectives To set up a pragmatic Plan–Do–Study–Act cycle by analysing patient experiences and determinants of satisfaction with care in the last year of life. Design Cross-sectional postbereavement survey. Setting Regional health services research and development structure representing all health and social care providers involved in the last yea...

Unterscheidet sich die Krankenhausversorgung von Tumor und Nicht-Tumor Patient*innen in den letzten zwei Lebenstagen? Ergebnisse der Studie "Das letzte Lebensjahr in Köln" #cancer#non-cancer#hospital care

Zusammenfassung Versorgungsforschung in der Onkologie beschäftigt sich mit allen Situationen, in denen Menschen mit Krebs konfrontiert sind. Sie betrachtet die verschiedenen Phasen der Versorgung, also Prävention/Früherkennung, Prähabilitation, Diagnostik, Therapie, Rehabilitation und Palliativversorgung ebenso wie die verschiedenen Akteure, darunt...