Recommendations on palliative care aspects in intensive care medicine

Abstract Background The timely integration of palliative care is important for patients suffering from various advanced diseases with limited prognosis. While a German S-3-guideline on palliative care exists for patients with incurable cancer, a recommendation for non-oncological patients and especially for integration of palliative care into intensive care medicine is missing to date. Method Ten German medical societies worked on recommendations on palliative care aspects in intensive care in a consensus process from 2018 to 2023. Results Based on the german consensus paper, the palliative care aspects of the respective medical disciplines concerning intensive care are addressed. The recommendations partly refer to general situations, but also to specific aspects or diseases, such as geriatric issues, heart or lung diseases, encephalopathies and delirium, terminal renal diseases, oncological diseases and palliative emergencies in intensive care medicine. Measures such as non-invasive ventilation for symptom control and compassionate weaning are also included. Conclusion The timely integration of palliative care into intensive care medicine aims to improve quality of life and symptom control and also takes into acccount the often urgently needed support for patients’ highly stressed relatives

The General Public and Young Adults’ Knowledge and Perception of Palliative Care: A Systematic Review

Background: As a result of demographic change, chronic and oncological diseases are gaining importance in the context of public health. Palliative care plays a crucial role in maintaining the quality of life of those affected. International guidelines demand access to palliative care not only for the elderly but also for younger people who face severe illnesses. It can be assumed that palliative care will become increasingly important for them. In order to develop public health strategies which are able to promote palliative care, it is important to assess the knowledge of, and attitude towards, palliative care as found among members of the general public and its specific target groups. In particular, little is known about young adults’ knowledge and perceptions of palliative care. Objectives and design: This work aimed to assess the understanding and viewpoints regarding palliative care among the general population and among young adults aged 18 to 24. We therefore conducted a systematic review, which, for this target population, could be seen as a novel approach. Methods: Exclusion and inclusion criteria were developed using the PICOS process. Literature was researched within MEDLINE (via PubMed), Google Scholar and Web of Science. A search string was developed and refined for all three databases. Grey literature was included. Duplicates were excluded using Mendeley. The literature was independently screened by two researchers. Narrative synthesis was used to answer the main research question. Results: For the general public, palliative care is still associated with death and dying and comforting sick people towards the end of their lives. Multiple social determinants are linked to better knowledge of palliative care: higher education, higher income, female gender, having relatives that received palliative care, and permanent employment. The population’s knowledge of palliative care structures increases, the longer such structures have been established within a country. Young adults are familiar with the term palliative care, yet their understanding lacks nuance. They associate palliative care with death and dying and perceive palliative care to be a medical discipline primarily for the elderly. Nevertheless, young adults demand participation within the planning of interventions to destigmatize palliative care. Conclusions: The general public still lacks a detailed understanding of palliative care. Palliative care faces stigma at multiple levels, which creates barriers for those who set out to implement it. However, addressing young adults as a crucial peer group can help break down barriers and promote access to palliative care

Electronic Implementation of Integrated End-of-life Care: A Local Approach

Introduction: The Liverpool Care Pathway for the Dying Patient is an instrument to deliver integrated care for patients in their last hours of life. Originally a paper-based system, this study investigates the feasibility of an electronic version.  Methods: An electronic Liverpool Care Pathway was implemented in a specialized palliative care unit of a German university hospital. Its use is exemplified by means of auditing and analysis of the proportion of recorded items.  Results: In the years 2013 and 2014 the electronic Liverpool Care Pathway was used for the care of 159 patients. The uptake of the instrument was high (67%). Most items were recorded. Apart from a high usability, the fast data retrieval allows fast analysis for auditing and research.  Conclusions and discussion: The electronic instrument is feasible in a computerized ward and has strong advantages for retrospective analysis.  Trial registration: Internal Clinical Trial Register of the Medical Faculty, Heinrich Heine University Düsseldorf, No. 2015124683 (7 December 2015)

Caring for patients during voluntarily stopping of eating and drinking (VSED): experiences of a palliative care team in Germany

Abstract Background Health-care professionals are confronted with patients who wish to end their lives through voluntarily stopping eating and drinking (VSED). During VSED, symptoms such as agitation, thirst or psychological distress may arise, thus making close medical accompaniment necessary. Dealing with these symptoms can put a high burden on palliative care teams. Furthermore, divergent perceptions of the ethical classification of VSED may lead to moral distress. The aim of this study was to assess the influence of experience gained over time on the burden of palliative care professionals while accompanying patients during VSED and to assess the perceptions of coping strategies. Methods This is a prospective single-centre study conducted at the Interdisciplinary Centre for Palliative Care at University Hospital Duesseldorf, Germany. At two points in time (T1, T2) one year apart, team members of all professions who were actively involved in the accompaniment were eligible to complete a pretested questionnaire. Results Team members perceived the symptom complex of psychological distress, anxiety, and agitation to be the most burdensome symptoms for the patients (T1: 28/49, 57.1%; T2: 33/59, 55.9%). Thirst was the second most observed symptom (T1: 17/49, 34.7%, T2: 19/59, 32.2%). These were also the most burdensome symptoms for individual team members. Most team members found there were no general moral concerns. There was a decrease in the perceived importance of support strategies such as ethical counselling (85.7% versus 63.6%). Conclusions Accompanying patients during VSED is a challenge for health-care professionals. When comparing T2 to T1, less emphasis lies on the importance of ethical counselling or psychiatric assessment to build a foundation for the accompaniment. Moral and ethical concerns seem to play a minor role. More in-depth studies covering a bigger sample size as well as qualitative studies are needed

Palliative care education and knowledge transfer into practice – a multicenter survey among medical students and resident physicians in Germany using a mixed-methods design

Objective: In 2009, Palliative care was incorporated into the medical curriculum as Cross-Sectional Subject 13 (QB13) by means of the revision of the Medical Licensing Regulations for Physicians. The aim of this study was to determine the strengths and deficits of QB13 student education for palliative care in clinical practice in a multi-centre setting and to identify potential for improvement.Methods: Online questionnaires filled out by medical students during their Practical Year (PY) and resident physicians from the university hospitals in Aachen, Düsseldorf, and Cologne were descriptively analyzed using SPSS; free-text responses were categorized and quantified. Semi-structured interviews with the resident physicians (using a mixed-methods design) were analyzed through content analysis. Emerging categories were quantified.Results: Analysis of 130 fully completed questionnaires and 23 interviews revealed that participants particularly benefited from patient- and practice-oriented small-group sessions for their clinical work. Despite some university-specific differences, the PY students identified a need for training in end-of-life-care, while resident physicians saw a need for training primarily in dealing with patients and their relatives. They also reported deficits in transferability. Conclusion: QB13 should be organised in cross-university curricula and provide sufficient resources for practical-oriented small-group teaching. Based on the "unit of care", besides caring for palliative patients, dealing with patients’ families should also be an education focus. To improve transferability into clinical practice, students should be actively involved in the care of palliative patients

The Landscape of Outpatient Palliative Care in Germany: Results from a Retrospective Analysis of 14,792 Patients

Background: Palliative care comprises multiprofessional, integrated, person-centered healthcare services for patients and their families facing problems related to progressive or advanced diseases and limited life expectancy. Although non-oncology patients’ needs are similar to those of tumor patients, they are often underestimated. The purpose of our study was to investigate the actual utilization of palliative care services in Germany, especially in the outpatient setting. Methods: Using the IQVIA Disease Analyzer database, a total of 14,792 outpatients from 805 primary care practices in Germany with documented palliative care and related diagnosis between 2018 and 2021 were analyzed. Proportions of different diagnoses among patients receiving outpatient palliative care were stratified by gender and different age groups. Results: The most common underlying diagnosis for outpatient palliative care was cancer (55%), followed by heart failure (16%) and dementia (8%), with age- and sex-specific differences found in the proportion of diagnoses for utilization. While the relative proportions of cancers decreased with age (87% in the 18- to 50-year-old age group versus 37% in the 80-plus age group), the proportion of palliative care related to heart failure increased in the older population (2% in the 18- to 50-year-old age group versus 25% in the 80-plus age group). Conclusions: This study provides an overview of the situation of outpatient palliative care in Germany and shows age- and gender-specific trends regarding the underlying medical diagnoses. Based on these data, palliative care should be adapted to current demographic developments

Inpatient generalist palliative care during the SARS-CoV-2 pandemic - experiences, challenges and potential solutions from the perspective of health care workers

Background The SARS-CoV-2 pandemic has presented major challenges to the health system. Despite high acute case numbers, patients without Covid-19 still need to be cared for. Due to the severity of the disease and a possible stressful overall situation, patients with palliative care needs also require comprehensive care during pandemic times. In addition to specialized palliative care facilities, this also takes place in non palliative care wards. In order to ensure this general palliative care also in pandemic times, the experience of the staff should be used. The aim of this paper is to examine challenges and possible solutions for general palliative care inpatients in relation to the care of seriously ill and dying patients and their relatives. Methods Qualitative semi-structured focus groups were conducted online for the study. Participants were staff from intensive care or isolation wards or from units where vulnerable patients (e.g. with cognitive impairment) are cared for. The focus groups were recorded and subsequently transcribed. The data material was analysed with the content structuring content analysis according to Kuckartz. Results Five focus groups with four to eight health care professionals with various backgrounds were conducted. Fifteen main categories with two to eight subcategories were identified. Based on frequency and the importance expressed by the focus groups, six categories were extracted as central aspects: visiting regulations, communication with relatives, hygiene measures, cooperation, determination of the patients will and the possibility to say good bye. Conclusion The pandemic situation produced several challenges needing specific solutions in order to manage the care of seriously ill and dying patients. Especially visiting needs regulation to prevent social isolation and dying alone. Finding alternative communication ways as well as interprofessional and interdisciplinary cooperation is a precondition for individualised care of seriously ill and dying patients and their relatives. Measures preventing infections should be transparently communicated in hospitals

Specialist Palliative Care Consultations in COVID-19 Patients in the ICU—A Retrospective Analysis of Patient Characteristics and Symptoms at a German University Hospital

COVID-19 patients who may require invasive therapeutic procedures such as extracorporeal membrane oxygenation (ECMO) have high symptom burden and in-hospital mortality. In addition, awake patients on ECMO are new in the intensive care unit (ICU) setting. Inpatient specialist palliative care (sPC) provides support such as symptom control on a physical, psychosocial and spiritual level. The field of sPC in COVID-19 patients is still new and important to investigate. We aim to analyze sPC of COVID-19 patients in the ICU with regard to patient characteristics and symptoms from a palliative care perspective. We conducted a retrospective analysis (03/2020–04/2021) and identified 51 ICU patients receiving sPC. The statistical analysis included descriptive statistics and comparisons of symptoms. The first sPC contact of patients (mean age 69.5 years, 62.7% male) was around 14 days after COVID-19 confirmation, and 43% were treated with ECMO therapy. The baseline symptom burden was high with a focus on weakness (100%), tiredness (98%), dyspnea (96%) and family burden (92%). The symptom intensity significantly decreased during the time period of sPC and COVID-19 treatment (t(99) = 3.119, p = 0.003, d = 0.437). These results help intensivists and sPC clinicians to identify symptoms and the need for sPC in COVID-19 patients. However, studies with prospective and controlled designs need to follow