[Transition from intensive care to palliative care : A retrospective analysis of 102 consultation requests]. / Transition von der Intensivmedizin zur Palliativmedizin : Eine retrospektive Analyse von 102 Konsilanforderungen.

BACKGROUND: The transition of patients from the intensive care unit (ICU) to the palliative care (PC) ward often implies changes including establishing a palliative concept. Adaptation of therapeutic goals can be challenging for medical staff, patients and relatives; however, descriptions of these transition trajectories are rare. OBJECTIVE: The aim of this retrospective study was to characterize the consultation requests of the ICU to the PC consultation team as well as the patients by a description of trajectories and interventions. METHODS: Retrospective analysis of all patients receiving intensive care at RWTH Aachen University Hospital in 2019 for whom a PC consultation was requested. The patient population transferred from the ICU to the PC ward was compared with the non-transferred population. In each case, the primary consultation was evaluated regarding the following factors: question, vigilance, length of time from consultation request to its performance, and primary focus of the question. The question focus was categorized into "symptom control", "counselling" and "transfer" (tick options). In addition, a free text field was available for further notes. Exploration of diagnoses was complemented by accessing the electronic health records. RESULTS: A total of 102 consultation requests from the ICU to the PC ward were evaluated. The morbidity of patients was high, and most patients had at least one of the following diagnoses: pulmonary (62%), cardiovascular (61%), and/or neurological disease (55%). Of the patients 32 (31%) were transferred to the PC ward, among whom weakness (94%), fatigue (77%), anxiety (55%), pain (53%), and dyspnea (48%) were the most frequently noted symptoms. Of the transferred patients 5 (16%) could be discharged to home, nursing home, hospice or other. In total, 35 (34%) of all patients who were seen by palliative care specialists on ICUs in 2019 could be discharged alive. The most frequent reasons for nonadmission were lack of capacity of the PC ward (33%), dying while being on the waiting list (20%), and refusal by the patient (20%). Of the patients, 7 (26%) died within 48 h after they had been transferred to the PC ward. Performed consultation services "symptom control" (χ2 = 10.17; p < 0.05) and "counselling" (χ2 = 12.82; p < 0.001), which were requested by the intensive care physicians, showed a significant linkage with the respective intervention performed by the palliative care team. On the other hand, no statistically significant difference was found for requested and performed "transfer" of patients from ICUs to PC ward. Comparing the transferred versus non-transferred patient population, a significantly more frequent transfer of patients with malignant tumors (p = 0.00) was observed. CONCLUSION: The need for palliative care support in the ICUs exceeded the admission capacity of the PC ward. Future studies should further examine palliative care models in intensive care medicine.

Prepared to Accompany the End of Life during Pandemics in Nursing Homes.

BACKGROUND: The COVID-19 pandemic confronted nursing homes with a variety of challenges to ensure the provision of palliative care for residents. PallPan-Implement aimed to adapt the recommendations of the National Strategy for the Care of Seriously Ill, Dying Adults and their Families in Times of Pandemic (PALLPAN) in such a way that nursing facilities can use and implement them. METHODS: Based on 33 PALLPAN recommendations, we developed a questionnaire, conducted a pilot implementation for selected nursing homes, and asked for qualitative feedback. RESULTS: The developed questionnaire contains 22 main questions. A three-stage pilot implementation with an introductory event, processing phase, and evaluation event took place in seven facilities. The facilities evaluated the developed questionnaire as helpful. Feedback from the facilities identified three major categories: (a) requirements for facilities should be realistic to avoid frustration, (b) the creation of a pandemic plan for palliative care only is impractical, (c) measures for the psychosocial support of staff is particularly necessary, but was perceived as difficult to implement. CONCLUSIONS: The practical implementation of recommendations requires a concept and material tailored to facilities and areas. The strategy of PallPan Implement developed in this project appears to be target-oriented, well-received, and can be recommended for further implementation.

[Perceptions on the use of opioids: focus on COVID-19 : Free-text analysis of a survey in anesthesiology/intensive care, internal medicine, and palliative care]. / Wahrnehmungen zum Umgang mit Opioiden: Fokus COVID-19 : Freitext-Analyse einer Umfrage in Anästhesiologie/Intensivmedizin, Innerer Medizin und Palliativmedizin.

BACKGROUND: Opioids efficiently manage pain and dyspnea. However, guidelines on symptom management with opioids differ, which may lead to uncertainty among medical staff concerning opioid indication and ethical implication, especially when caring for COVID-19 patients. AIMS: We aimed to examine the perception of morphine/opioid (M/O) administration for symptom control within and outside palliative care, including care for COVID-19 patients, among members of the German associations for palliative medicine, internal medicine, anesthesiology and intensive care. METHODS: Participants received an anonymized online questionnaire via Survey Monkey® (Momentive Inc., San Mateo, CA, USA) regarding their general perception of symptom management with M/O. These results have been published elsewhere. For systematic and structural analysis of comments in the free-text field, we chose Phillip Mayring's method of summarizing qualitative content analysis. RESULTS: Of the n = 2202 persons who participated, 339 wrote comments in the free-text field which were categorized as follows: main categories 1) personal perceptions of COVID-19 patients, 2) administration and effect of M/O, 3) observations within the palliative care field, 4) imparting knowledge concerning M/O usage and palliative care, and 5) others. CONCLUSIONS: Some participants reported very personal perceptions and deficits of the healthcare system, especially when caring for COVID-19 patients. Uniform interdisciplinary guidelines for symptom control, more education, and support by trained staff confident in symptom control should be increasingly considered in the future.

[Perceptions on the use of opioids in COVID-19 : A survey of members of the German Association for Palliative Medicine]. / Wahrnehmungen zum Umgang mit Opioiden bei COVID-19 : Eine Umfrage unter Mitgliedern der Deutschen Gesellschaft für Palliativmedizin.

BACKGROUND: Opioids efficiently alleviate pain and dyspnea. However, guidelines on symptom management with opioids differ, which may lead to an uncertainty concerning opioid indication and ethical implication among medical staff, especially when caring for COVID-19 patients. AIMS: We aimed to examine the perception of members of the German Association for Palliative Medicine (DGP) concerning the administration of morphine as the gold standard opioid (subsequently termed M/O) for symptom control within and outside of a palliative care (PC) setting, including care for COVID-19 patients. METHODS: DGP members received an anonymized online questionnaire (Survey Monkey®) containing questions regarding their perception of symptom management with M/O in general and in particular concerning COVID-19 patients. Participants were asked to rate their perception within and outside of a PC setting. RESULTS: Of the 6129 DGP members, N = 506 participated. DGP physicians and nurses perceived handling of M/O as "certain and confident" (98%) and "clearly regulated" within PC (95%) but rated it significantly lower for outside PC (48%/38%). When caring for COVID-19 patients, handling of M/O was even less often rated "certain and confident" (26%) or "clearly regulated" (23%) for outside PC. Dyspnea (99%/52%), relief from the dying process (62%/37%), restlessness (30%/15%) and fear or panic (27%/13%) were more frequently rated as general indications for morphine within versus outside PC. Most participants (89%) wished to involve palliative care consultation teams. CONCLUSIONS: DGP members perceived substantial uncertainty in the handling of M/O for medical fields outside PC. Uniform interdisciplinary guidelines for symptom control, more education, and involvement of a PC consultation team should be increasingly considered in the future.

Availability as key determinant in the palliative home care setting from the patients' and family caregivers' perspectives: A quantitative-qualitative-content analysis approach.

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 contributing to a sense of security and how they relate to each other as experienced by patients and family caregivers in specialist and generalist palliative home care. METHODS: The current sub-study, as part of a larger study, was performed in different regions in Germany. Palliative care patients and family caregivers of at least 18 years of age, being cared for at home were interviewed using semi-structured interview guides following a three-factor model and analyzed by using a combined quantitative-qualitative-content approach. RESULTS: One hundred and ninty-seven patients and 10 carers completed interviews between December 2017 and April 2019. The majority of patients were diagnosed with an oncological disease. Sense of security was mentioned particularly often suggesting its high relevance. We identified nine subcategories that were all mentioned more frequently by specialist than generalist palliative home care recipients in the following order of priority and relation: (i) patient-centeredness: availability, provision of information/education, professional competence, patient empowerment, and trust (ii) organizational work: comprehensive responsibility, external collaboration, and internal cooperation, and (iii) direct communication. SIGNIFICANCE OF RESULTS: The work of specialist palliative home care services in particular was perceived as very effective and beneficial. Our findings confirm a previously developed three-factor model allowing for generalizability and revealed that availability was most important for improving the sense of security for effective palliative home care.

360-degree Delphi: addressing sociotechnical challenges of healthcare IT.

BACKGROUND: IT systems in the healthcare field can have a marked sociotechnical impact: they modify communication habits, alter clinical processes and may have serious ethical implications. The introduction of such systems involves very different groups of stakeholders because of the inherent multi-professionalism in medicine and the role of patients and their relatives that are often underrepresented. Each group contributes distinct perspectives and particular needs, which create specific requirements for IT systems and may strongly influence their acceptance and success. In the past, needs analysis, challenges and requirements for medical IT systems have often been addressed using consensus techniques such as the Delphi technique. Facing the heterogeneous spectrum of stakeholders there is a need to develop these techniques further to control the (strong) influence of the composition of the expert panel on the outcome and to deal systematically with potentially incompatible needs of stakeholder groups. This approach uses the strong advantages a Delphi study has, identifies the disadvantages of traditional Delphi techniques and aims to introduce and evaluate a modified approach called 360-Degree Delphi. Key aspects of 360-Degree Delphi are tested by applying the approach to the needs and requirements analysis of a system for managing patients' advance directives and living wills. METHODS: 360-Degree Delphi (short 360°D), as a modified Delphi process, is specified as a structured workflow with the optional use of stakeholder groups. The approach redefines the composition of the expert panel by setting up groups of different stakeholders. Consensus is created within individual stakeholder groups, but is also communicated between groups, while the iterative structure of the Delphi process remains unchanged. We hypothesize that (1) 360-Degree Delphi yields complementary statements from different stakeholders, which would be lost in classical Delphi; while (2) the variation of statements within individual stakeholder groups is lower than within the total collective. A user study is performed that addresses five stakeholder groups (patients, relatives, medical doctors, nurses and software developers) on the topic of living will communication in an emergency context. Qualitative open questions are used in a Delphi round 0. Answer texts are coded by independent raters who carry out systematic bottom-up qualitative text analysis. Inter-rater reliability is calculated and the resulting codes are used to test the hypotheses. Qualitative results are transferred into quantitative questions and then surveyed in round 1. The study took place in Germany. RESULTS: About 25% of the invited experts (stakeholders) agreed to take part in the Delphi round 0 (three patients, two relatives, three medical doctors, two qualified nurses and three developers), forming a structured panel of the five stakeholder groups. Two raters created a bottom-up coding, and 238 thematic codes were identified by the qualitative text analysis. The inter-rater reliability showed that 44.95% of the codes were semantically similar and coded for the same parts of the raw textual replies. Based on a consented coding list, a quantitative online-questionnaire was developed and send to different stakeholder groups. With respect to the hypotheses, Delphi round 0 had the following results: (1) doctors had a completely different focus from all the other stakeholder groups on possible channels of communications with the patient; (2) the dispersion of codes within individual stakeholder groups and within the total collective - visualized by box plots - was approximately 28% higher in the total collective than in the sub-collectives, but without a marked effect size. With respect to the hypotheses, Delphi round 1 had the following results: different stakeholder groups had highly diverging opinions with respect to central questions on IT-development. For example, when asked to rate the importance of access control against high availability of data (likert scale, 1 meaning restrictive data access, 6 easy access to all data), patients (mean 4.862, Stdev +/- 1.866) and caregivers (mean 5.667, Stdev: +/- 0.816) highly favored data availability, while relatives would restrict data access (mean 2.778, stdev +/- 1.093). In comparison, the total group would not be representative of either of these individual stakeholder needs (mean 4.344, stdev +/- 1.870). CONCLUSION: 360-Degree Delphi is feasible and allows different stakeholder groups within an expert panel to reach agreement individually. Thus, it generates a more detailed consensus which pays more tribute to individual stakeholders needs. This has the potential to improve the time to consensus as well as to produce a more representative and precise needs and requirements analysis. However, the method may create new challenges for the IT development process, which will have to deal with complementary or even contradictory statements from different stakeholder groups.

Improving dementia care in nursing homes: experiences with a palliative care symptom-assessment tool (MIDOS).

BACKGROUND: In the past decade, the palliative care approach has been used in the care of frail older people living with debilitating chronic conditions, including dementia. AIM: To describe health professionals' experiences of assessing the symptoms of people with dementia using a cancer-patient-oriented symptom-assessment tool from a palliative care context. METHOD: This was a qualitative study that used semi-structured interviews (n=13) with clinical staff in three nursing homes prior to and following the implementation of the Minimal Documentation system for Palliative care (MIDOS) tool for assessing symptoms over a period of 6 weeks. RESULTS: Baseline interviews showed specific concerns about symptom assessment, such as uncertainty about underlying symptoms in residents who appeared to be in distress. After the implementation of the MIDOS tool, participants reported that daily use of the tool was perceived as helpful in evaluating symptoms other than pain and improved internal communication between staff regarding clinical decision making. CONCLUSION: The MIDOS tool was perceived as a helpful and valuable complement to existing tools. Participants expressed some concerns regarding the subjective nature of perceiving symptoms and clinical decision making. The use of tools such as the MIDOS tool has the potential to enhance the quality of palliative care in dementia care.

Antibiotics in palliative medicine--results from a prospective epidemiological investigation from the HOPE survey.

BACKGROUND: Patients with advanced cancer are highly susceptible to infections. The decision whether to treat an active or suspected infection or to withhold or withdraw an antibiotic treatment in end-of-life care may be difficult. In order to quantify the antimicrobial prescribing practices and decision-making processes in palliative care units in Germany, a survey was performed as part of the Hospice and Palliative Evaluation in 2006. METHOD: With a specifically designed questionnaire, 448 patients for whom an active or suspected infection and antibiotic treatment was discussed were documented. Data on the use of and indication for antibiotic treatment and the decision-making on withdrawal or withholding of antibiotic therapy were collected. RESULTS: 286 (63.8%) received an antibiotic therapy. In 88 cases, withdrawal of an ongoing treatment was documented. The most frequent reasons for withdrawal were: deterioration of general status (41.4%), inefficiency of therapy (25.7%), and explicit wish of patient (14.3%; multiple answers possible). Outcome of antimicrobial therapy was rated poor or very poor for a fifth of the cases and accordingly, antibiotics were more likely to be withdrawn if the clinical success was considered to be poor. The initiation of therapy was often decided by physicians solely, whereas withdrawing and withholding therapy demanded more often involvement of other team members in the decision-making process. CONCLUSION: The initiation of therapy seems to be easier than withdrawing and withholding, as involvement of other team members in the decision-making process was then sought more often. When antibiotics were given until death, the indication should be reconsidered because of a possibly undesirable prolongation of the dying process. Clinical practice may benefit from clear definitions of treatment goals and outcome criteria to better evaluate the necessity for and success of antimicrobial treatment.

Assessment of quality of life in patients receiving palliative care: comparison of measurement tools and single item on subjective well-being.

STUDY AIM: Many quality-of-life assessment tools are not feasible in palliative care settings because of the severe impairment of the physical, cognitive, and psychological status of patients. This study investigated whether comprehensive instruments can be replaced by a single item concerning the well-being of patients. METHODS: From April to December 2008 patients receiving palliative care in three different settings (palliative care unit, inpatient unit of the department of radiotherapy, inpatient hospice) were asked to answer the assessment tools Functional Assessment of Chronic Illness Treatment (FACIT-G), European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC-QLQ-C30), Schedule for the Evaluation of the Individual Quality of Life (SEIQoL), and the Minimal Documentation System (MIDOS) including a single item on well-being. Correlations of sum and specific domain scores were used for correlational analysis. RESULTS: Datasets of 72 patients were collected. The MIDOS single item on well-being correlated significantly with the QoL indexes of the EORTC (Spearman rank correlation r = -0.563) and FACIT-G (0.527). SEIQoL had low to moderate correlations with the other assessment tools. Subscales on physical functioning from the FACIT-G (r = 0.583) and the EORTC-QLQ-C30 (r = 0.385) had the highest correlation with the single item on well-being. Well-being correlated higher with nonphysical subscales of the QoL instruments for patients in the palliative care unit than in the radiotherapy department. CONCLUSIONS: The single item is unable to completely replace comprehensive questionnaires, but it is useful to initiate communication on QoL and can be recommended as a substitute for physical-functional aspects of QoL assessment in the palliative care setting.

Pharmacological treatments for fatigue associated with palliative care.

BACKGROUND: In healthy individuals, fatigue is a protective response to physical or mental stress, often relieved by rest. By contrast, in palliative care patients fatigue can be severely debilitating, thereby impacting daily activity and quality of life, often with rest not counteracting fatigue. Fatigue frequently occurs in patients with advanced disease and modalities treating cancer often contribute or cause fatigue. Further complicating issues are its multidimensionality, subjective nature, and lack of a consensus definition of fatigue. Pathophysiology is not fully understood and evidence-based treatment approaches are needed. OBJECTIVES: The objective was to determine efficacy of pharmacological treatments on non-specific fatigue in palliative care. The focus was on patients at an advanced stage of disease, including cancer and other chronic diseases associated with fatigue, aiming to relieve fatigue. Studies aiming at curative treatment (e.g. surgical intervention for early breast cancer) were not included. SEARCH STRATEGY: We searched EMBASE; Psych Lit, CENTRAL and MEDLINE to June 2009. SELECTION CRITERIA: We considered randomised controlled trials (RCTs) concerning adult palliative care with focus on pharmacological treatment of fatigue. The primary outcome had to be non-specific fatigue (or related terms such as asthenia). DATA COLLECTION AND ANALYSIS: Results were screened and included if they met the selection criteria. If two or more studies were identified that investigated a specific drug in a population with the same disease, meta-analysis was conducted. In addition, comparison of type of drug investigated in a specific population as well as comparison of frequent adverse effects of fatigue treatment was done by creating overview tables. MAIN RESULTS: More than 2000 publications were screened, and 22 met inclusion criteria. In total, data from 11 drugs and 1632 participants were analysed. Studies investigating amantadine, pemoline, and modafinil in participants with Multiple Sclerosis (MS)-associated fatigue and methylphenidate in patients suffering from advanced cancer and fatigue could be used for meta-analysis. Amantadine in MS and methylphenidate in cancer patients showed a superior effect. Most studies had low participant numbers and were heterogenous. AUTHORS' CONCLUSIONS: Based on limited evidence, we cannot recommend a specific drug for treatment of fatigue in palliative care patients. Surprisingly, corticosteroids have not been a research focus for fatigue treatment, although these drugs are frequently used. Recent fatigue research seems to focus on modafinil, which may be beneficial although there is no evidence currently. Amantadine and methylphenidate should be further examined. Consensus regarding fatigue assessment in advanced disease is needed.

Outcome indicators in palliative care--how to assess quality and success. Focus group and nominal group technique in Germany.

PURPOSE: The call for clinically relevant outcome criteria has been raised, as assessment of adequate quality of service providers is essential with increasing momentum in the development of palliative care in most European countries. The aim of this study is to investigate important dimensions and indicators for assessment and evaluation of palliative care from the perspective of multi-disciplinary German experts working over years in the field of palliative care. METHODS: A focus group, using the structured consensus method of the improved nominal group technique (INGT), with nine experts from different disciplines was conducted in Germany. RESULTS: An abundance of topics (16) were identified, pointing at the complexity of the issue. Main topics were: quality of life, needs assessments of patients and relatives, resource assessment, surveillance of decision-making processes, as well as spiritual well-being. The following properties were claimed as essential for outcome criteria sensitivity, without additional burden on patients, easy applicability, scientific validity, and helpful for communication within the team, ethical discussions as well as for quality management. CONCLUSIONS: The study identified topics considered important by experts in clinical practise. The discussions exposed the diversity of demands on outcome assessment put up by different stakeholder groups. This and the high number of relevant items show the complexity for the agreement on a unique set of outcome criteria. Further research considering other perspectives is needed.