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.

Triggers of intensive care patients with palliative care needs from nurses' perspective: a mixed methods study.

PURPOSE: Triggers have been developed internationally to identify intensive care patients with palliative care needs. Due to their work, nurses are close to the patient and their perspective should therefore be included. In this study, potential triggers were first identified and then a questionnaire was developed to analyse their acceptance among German intensive care nurses. METHODS: For the qualitative part of this mixed methods study, focus groups were conducted with intensive care nurses from different disciplines (surgery, neurosurgery, internal medicine), which were selected by convenience. Data were analysed using the "content-structuring content analysis" according to Kuckartz. For the quantitative study part, the thus identified triggers formed the basis for questionnaire items. The questionnaire was tested for comprehensibility in cognitive pretests and for feasibility in a pilot survey. RESULTS: In the qualitative part six focus groups were conducted at four university hospitals. From the data four main categories (prognosis, interprofessional cooperation, relatives, patients) with three to 15 subcategories each could be identified. The nurses described situations requiring palliative care consults that related to the severity of the disease, the therapeutic course, communication within the team and between team and patient/relatives, and typical characteristics of patients and relatives. In addition, a professional conflict between nurses and physicians emerged. The questionnaire, which was developed after six cognitive interviews, consists of 32 items plus one open question. The pilot had a response rate of 76.7% (23/30), whereby 30 triggers were accepted with an agreement of ≥ 50%. CONCLUSION: Intensive care nurses see various triggers, with interprofessional collaboration and the patient's prognosis playing a major role. The questionnaire can be used for further surveys, e.g. interprofessional triggers could be developed.

Implementing spiritual care education into the teaching of palliative medicine: an outcome evaluation.

BACKGROUND: The concept of "total pain" plays an important role in palliative care; it means that pain is not solely experienced on a physical level, but also within a psychological, social and spiritual dimension. Understanding what spirituality entails, however, is a challenge for health care professionals, as is screening for the spiritual needs of patients. OBJECTIVE: This is a novel, interprofessional approach in teaching undergraduate medical students about spiritual care in the format of a seminar. The aim of this study is to assess if an increase in knowledge about spiritual care in the clinical context is achievable with this format. METHODS: In a mandatory seminar within the palliative care curriculum at our university, both a physician and a hospital chaplain teach strategies in symptom control from different perspectives (somatic domain - spiritual domain). For evaluation purposes of the content taught on the spiritual domain, we conducted a questionnaire consisting of two parts: specific outcome evaluation making use of the comparative self-assessment (CSA) gain and overall perception of the seminar using Likert scale. RESULTS: In total, 52 students participated. Regarding specific outcome evaluation, the greatest gain was achieved in the ability to define total pain (84.8%) and in realizing its relevance in clinical settings (77.4%). The lowest, but still fairly high improvement was achieved in the ability to identify patients who might benefit from spiritual counselling (60.9%). The learning benefits were all significant as confirmed by confidence intervals. Overall, students were satisfied with the structure of the seminar. The content was delivered clearly and comprehensibly reaching a mean score of 4.3 on Likert scale (4 = agree). The content was perceived as overall relevant to the later work in medicine (mean 4.3). Most students do not opt for a seminar solely revolving around spiritual care (mean 2.6). CONCLUSIONS: We conclude that implementing spiritual care education following an interprofessional approach into existing medical curricula, e.g. palliative medicine, is feasible and well perceived among medical students. Students do not wish for a seminar which solely revolves around spiritual care but prefer a close link to clinical practice and strategies.

[Clinical acute and emergency medicine curriculum-focus on internal medicine : Recommendations for advanced training in internal medicine in the emergency department]. / Curriculum Klinische Akut- und Notfallmedizin ­ Schwerpunkt Innere Medizin : Empfehlung zu Weiterbildungsinhalten der Inneren Medizin in der Notaufnahme.

In Germany, physicians qualify for emergency medicine by combining a specialty medical training-e.g. internal medicine-with advanced training in emergency medicine according to the statutes of the State Chambers of Physicians largely based upon the Guideline Regulations on Specialty Training of the German Medical Association. Internal medicine and their associated subspecialities represent an important column of emergency medicine. For the internal medicine aspects of emergency medicine, this curriculum presents an overview of knowledge, skills (competence levels I-III) as well as behaviours and attitudes allowing for the best treatment of patients. These include general aspects (structure and process quality, primary diagnostics and therapy as well as indication for subsequent treatment; resuscitation room management; diagnostics and monitoring; general therapeutic measures; hygiene measures; and pharmacotherapy) and also specific aspects concerning angiology, endocrinology, diabetology and metabolism, gastroenterology, geriatric medicine, hematology and oncology, infectiology, cardiology, nephrology, palliative care, pneumology, rheumatology and toxicology. Publications focussing on contents of advanced training are quoted in order to support this concept. The curriculum has primarily been written for internists for their advanced emergency training, but it may generally show practising emergency physicians the broad spectrum of internal medicine diseases or comorbidities presented by patients attending the emergency department.

Perceptions on Specialist Palliative Care Involvement During and After Cardiopulmonary Resuscitation: A Qualitative Study.

IMPORTANCE: Cardiopulmonary resuscitation (CPR) is an exceptional physical situation and may lead to significant psychological, spiritual, and social distress in patients and their next of kin. Furthermore, clinicians might experience distress related to a CPR event. Specialist palliative care (sPC) integration could address these aspects but is not part of routine care. OBJECTIVES: This study aimed to explore perspectives on sPC integration during and after CPR. A needs assessment for sPC, possible triggers indicating need, and implementation strategies were addressed. DESIGN SETTING AND PARTICIPANTS: A multiprofessional qualitative semistructured focus group study was conducted in a German urban academic teaching hospital. Participants were clinicians (nursing staff, residents, and consultants) working in the emergency department and ICUs (internal medicine and surgical). ANALYSIS: The focus groups were recorded and subsequently transcribed. Data material was analyzed using the content-structuring content analysis according to Kuckartz. RESULTS: Seven focus groups with 18 participants in total were conducted online from July to November 2022. Six main categories (two to five subcategories) were identified: understanding (of palliative care and death), general CPR conditions (e.g., team, debriefing, and strains), prognosis (e.g., preexisting situation, use of extracorporeal support), next of kin (e.g., communication, presence during CPR), treatment plan (patient will and decision-making), and implementation of sPC (e.g., timing, trigger factors). CONCLUSIONS: Perceptions about the need for sPC to support during and after CPR depend on roles, areas of practice, and individual understanding of sPC. Although some participants perceive CPR itself as a trigger for sPC, others define, for example, pre-CPR-existing multimorbidity or complex family dynamics as possible triggers. Suggestions for implementation are multifaceted, especially communication by sPC is emphasized. Specific challenges of extracorporeal CPR need to be explored further. Overall, the focus groups show that the topic is considered relevant, and studies on outcomes are warranted.

Comparison of Palliative Knowledge and Self-Efficacy Expectation of German Paramedics Between a Rural and an Urban Structured Emergency Medical Service Area.

OBJECTIVE(S): Differences in the German emergency medical service (EMS) can be seen in the countryside in contrast to the city with regard to travel distances to hospitals and in the access routes of EMS-physicians. In order to investigate the success of establishment of palliative crisis cards associated with training and the rural and urban EMS structures, two urban and two rural EMS areas were compared using the Paramedic Palliative Care Test (PARPACT). Methods: The PARPACT includes test items on palliative knowledge (PK, maximum score: 15 points) and palliative self-efficacy expectations (PSE, maximum score: 18 points), as well as items on palliative attitudes in dealing with palliative care patients. We used a 4-point Likert-type scale. For data analysis, nonparametric tests (χ-test and Mann-Whitney U test) were used in addition to descriptive analysis (frequencies, means, medians, standard deviations, and ranges). Results: In total, 291 out of 750 ambulance or EMS personnel participated in the voluntary survey. Rural ambulance or EMS personnel answered the PK-questions correctly more often on average (mean: 11.19, SD: 1.85) than urban ambulance or EMS personnel (mean: 9.18, SD: 2.39; Mann-Whitney U test: U=5040.000, P=.001). In addition, ambulance or EMS personnel with the highest level of training (3-year-trained paramedics) performed better in PK (mean: 10.38, SD: 2.31) than less intensively training ambulance or EMS personnel (mean: 9.58, SD: 2.43; Mann-Whitney U-test: U=8446.500, P=.004). In terms of PSE, rural ambulance or EMS personnel also achieved higher mean PSE-scores (mean: 12.55, SD: 2.60) than urban ambulance or EMS personnel (mean: 9.77, SD: 3.41; Mann-Whitney U-test: U=5148.500, P=.001). Conclusions: Better training in the EMS is associated with improved PK compared to less qualified nonphysician EMS staff. The establishment of palliative crisis cards and the structures in the city alone do not lead to improved knowledge and PSE.

[Perspectives of a sample of mostly younger doctors on physician-assisted suicide]. / Sichtweisen einer Stichprobe überwiegend jüngerer Ärztinnen und Ärzte zum ärztlich-assistierten Suizid.

BACKGROUND: On 26 February 2020, the German Federal Constitutional Court revoked a law (§ 217 StGB) that had banned assisted suicide intended to be repeated on a regularly basis. Since then, a possible new legal regulation has been discussed. This study examined the knowledge, experiences, and attitudes of younger physicians towards physician-assisted suicide (PAS). METHODS: A quantitative survey of postgraduate courses in emergency medicine, critical care medicine, and hematology was conducted from November 2022 to March 2023. Possible factors influencing attitudes towards PAS were analyzed. RESULTS: A total of 1163 records (response rate 82.1%) were analyzed. Of the participants, 90.8% had experience with dying patients, 62.3% supported PAS only in palliative scenarios, 20.1% supported PAS regardless of the health status, 33.1% have been asked for PAS, and 3.3% had participated in PAS. In addition, 71.0% did not know the content of the Federal Constitutional Court's decision on § 217, 72.0% were not informed about the legislative proposals for the new regulation of PAS, and 66.4% saw doctors as the right person to decide whether a suicidal wish is permissible. CONCLUSION: Younger doctors differentiate in their attitude towards PAS between people without illnesses and those in palliative treatment situations. Further investigations into the causes of the frequent ignorance of the normative foundations are necessary. The results suggest that more educational work needs to be done about suicide alternatives and palliative care options.

[Care for dying patients in the emergency department]. / Versorgung sterbender PatientInnen in der Notaufnahme.

Patients at the end of life frequently receive care in emergency departments. Emergency physicians are faced with caring for both patients who pass away suddenly following an acute illness or injury despite rescue efforts, as well as those who are dying from a chronic condition or high age. To provide proper care and respect the patients' wishes regarding invasive treatments, emergency physicians should be knowledgeable about advance directives and have effective communication skills when delivering bad news to patients and their family. In addition, a basic understanding of palliative care is necessary for physicians to effectively manage symptoms.

[Survey on the presence of palliative care knowledge and palliative care structures in German emergency departments]. / Befragung zum Vorhandensein palliativmedizinischen Wissens sowie palliativmedizinischer Strukturen in deutschen Notaufnahmen.

Patients with life-limiting or palliative illnesses represent a challenge for emergency departments because, despite the growing availability of specialized outpatient palliative care resources at home, patients often present during symptom exacerbations or when family caregivers become overwhelmed. Also, as life-limiting illnesses are frequently first diagnosed there and treatment goals are adjusted, it appears advantageous to establish early connections between emergency patients with palliative needs and palliative care resources. The objective of this study was to conduct a survey evaluating the availability of fundamental palliative care knowledge and palliative care structures in clinical acute and emergency medicine. For this purpose, an online survey was distributed via emergency medicine blogs, targeting physicians working in emergency departments. In total, 383 fully completed questionnaires were analyzed. It was found that the respondents often encounter patients with palliative needs. However, both outpatient and inpatient palliative resources are not universally accessible, and where, for instance, consultation services are available, there is a lack of consensus regarding the appropriate timing for their utilization. Structures for end of life care are largely in place, although time and personnel are often insufficiently available. There is an expressed interest in further education and training in palliative care. In conclusion, as emergency departments serve as the interface between outpatient and inpatient care, an interdisciplinary and holistic approach can be employed to lay the groundwork for ongoing palliative care, benefiting patients with palliative needs.

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

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.

Recommendations on palliative care aspects in intensive care medicine.

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.

Drug landscape in patients receiving general outpatient palliative care in Germany: results from a retrospective analysis of 10,464 patients.

BACKGROUND: According to § 27 and § 87 1b of the German Social Code, Book V, general outpatient palliative care (GOPC) aims to promote, maintain, and improve the quality of life and self-determination of seriously ill people. It should enable them to live in dignity until death in their preferred environment. Instead of a curative approach GOPC treatment focuses on the multiprofessional objective of alleviating symptoms and suffering on a case-by-case basis using medication or other measures, as well as the management of an individual treatment plan. The aim of this study was therefore to investigate to what extent medication differs from 12 months prior GOPC treatment within 12 months following GOPC treatment. METHODS: A retrospective database cross sectional study based on the IQVIA Disease Analyzer (DA) was performed, including adult patients with cancer diagnosis and at least one documentation of palliative support between January 1st, 2018 and December 31st, 2021, in 805 general practices (GP). RESULTS: The results of this study show, that in the context of general general outpatient palliative care, there is a significant increase in the prescription of opioids (18.3% vs. 37.7%), sedatives (7.8% vs. 16.2%) and antiemetics (5.3% vs. 9.7%), as well as a significant reduction in other medications such as statins (21.4% vs. 11.5%), proton pump inhibitors (PPI) (41.2% vs. 35.3%), or antihypertensives (57.5% vs. 46.6%). CONCLUSIONS: Our results support the role of GOPC as an important element in improving pharmacological symptom control and deprescription to improve quality of life of patients at the end of their life.

[Advance care instruments for emergency rescue services : What is the current situation in Germany?] / Vorsorgeinstrumente für den rettungsdienstlichen Notfall : Wie ist der aktuelle Stand in Deutschland?

In addition to advance care instruments, such as advance directives and healthcare powers of attorney, adapted directives for emergency situations might be beneficial. These could avoid problems occurring with advance directives (e.g., lack of availability in acute emergencies, insufficient applicability to specific situations) when patients are no longer capable of making decisions but prompt decisions are required. Patients at the end of life are particularly relevant in this context, as they can refuse invasive procedures. Emergency advance directives should provide legally certain, quickly accessible and easily interpretable information about patient wishes regarding procedures such as resuscitation, intubation, and hospital admission. This narrative review provides a compact overview in the form of a needs and current status survey on emergency advance directives in Germany, presenting clinical and research projects. Overall, the current situation is one of inconsistent and insufficient implementation, with a concurrent increase in the proportion of palliative care patients in emergency services.An acute need for action to strengthen the cooperation between palliative medicine, emergency medicine and rescue services emerges. Training on palliative knowledge and care of patients at the end of life is also useful for prehospital care.

[Palliative aspects in clinical acute and emergency medicine as well as intensive care medicine : Consensus paper of the DGIIN, DGK, DGP, DGHO, DGfN, DGNI, DGG, DGAI, DGINA and DGPalliativmedizin]. / Palliativmedizinische Aspekte in der klinischen Akut- und Notfallmedizin sowie Intensivmedizin : Konsensuspapier der DGIIN, DGK, DGP, DGHO, DGfN, DGNI, DGG, DGAI, DGINA und DGPalliativmedizin.

The timely integration of palliative medicine is an important component in the treatment of various advanced diseases. While a German S­3-guideline on palliative medicine exists for patients with incurable cancer, a recommendation for non-oncological patients and especially for palliative patients presenting in the emergency department or intensive care unit is missing to date. Based on the present consensus paper, the palliative care aspects of the respective medical disciplines are addressed. The timely integration of palliative care aims to improve quality of life and symptom control in clinical acute and emergency medicine as well as intensive care.

[Palliative aspects in clinical acute and emergency medicine as well as intensive care medicine : Consensus paper of the DGIIN, DGK, DGP, DGHO, DGfN, DGNI, DGG, DGAI, DGINA and DGPalliativmedizin]. / Palliativmedizinische Aspekte in der klinischen Akut- und Notfallmedizin sowie Intensivmedizin : Konsensuspapier der DGIIN, DGK, DGP, DGHO, DGfN, DGNI, DGG, DGAI, DGINA und DGPalliativmedizin.

The timely integration of palliative medicine is an important component in the treatment of various advanced diseases. While a German S­3-guideline on palliative medicine exists for patients with incurable cancer, a recommendation for non-oncological patients and especially for palliative patients presenting in the emergency department or intensive care unit is missing to date. Based on the present consensus paper, the palliative care aspects of the respective medical disciplines are addressed. The timely integration of palliative care aims to improve quality of life and symptom control in clinical acute and emergency medicine as well as intensive care.

[Palliative aspects in clinical acute and emergency medicine as well as intensive care medicine: consensus paper of the DGIIN, DGK, DGP, DGHO, DGfN, DGNI, DGG, DGAI, DGINA and DGPalliativmedizin]. / Palliativmedizinische Aspekte in der klinischen Akut- und Notfallmedizin sowie Intensivmedizin: Konsensuspapier der DGIIN, DGK, DGP, DGHO, DGfN, DGNI, DGG, DGAI, DGINA und DGPalliativmedizin.

The timely integration of palliative medicine is an important component in the treatment of various advanced diseases. While a German S-3-guideline on palliative medicine exists for patients with incurable cancer, a recommendation for non-oncological patients and especially for palliative patients being treated in the emergency department or intensive care unit is missing to date. Based on the present consensus paper, the palliative care aspects of the respective medical disciplines are addressed. The timely integration of palliative care aims to improve quality of life and symptom control in clinical acute and emergency medicine as well as intensive care.

[Palliative aspects in clinical acute and emergency medicine as well as intensive care medicine : Consensus paper of the DGIIN, DGK, DGP, DGHO, DGfN, DGNI, DGG, DGAI, DGINA and DG Palliativmedizin]. / Palliativmedizinische Aspekte in der klinischen Akut- und Notfallmedizin sowie Intensivmedizin : Konsensuspapier der DGIIN, DGK, DGP, DGHO, DGfN, DGNI, DGG, DGAI, DGINA und DG Palliativmedizin.

The integration of palliative medicine is an important component in the treatment of various advanced diseases. While a German S3 guideline on palliative medicine exists for patients with incurable cancer, a recommendation for non-oncological patients and especially for palliative patients presenting in the emergency department or intensive care unit is missing to date. Based on the present consensus paper, the palliative care aspects of the respective medical disciplines are addressed. The timely integration of palliative care aims to improve quality of life and symptom control in clinical acute and emergency medicine as well as intensive care.