Benefit of a Palliative Care Drug Information Service and User Experience: A Cross-sectional Study Using a Web-based Online Survey.

A specialized drug information service can assist professionals in collating relevant information and hereby help to increase medication safety. It is only helpful if the information provided can also be put into practice, though. The aim of this study was to evaluate the benefits of a specialized palliative care drug information service AMInfoPall and its users' experience. A web-based survey among health care professionals subsequent to inquiry between 07/2017 and 06/2018 was conducted. Twenty questions related to the use and transfer of received information into clinical practice and the result of the consecutive treatment. Invitations to participate/ reminders were sent out 8 and 11 days after receiving the requested information. The survey's response rate was 119/176 (68%). Most participants were physicians (54%), followed by pharmacists (34%) and nurses (10%), 33/119 (28%) worked in palliative home care teams, 29 (24%) on palliative care units, and 27 (23%) in retail pharmacies. 86/99 respondents had conducted an unsatisfiable literature search before contacting AMInfoPall. 113/119 (95%) were satisfied with the provided answer. Information was transferred into clinical practice as recommended in 65/119 (55%) cases and led to a change in patient status in 33%, mostly improvement. No change was reported in 31% and in 36% it was unclear. AMInfoPall was well accepted and mostly used by physicians and palliative home care services. It provided helpful support for decision-making. The obtained information was mostly well transferable into practice.

The OUTREACH study: oncologists of German university hospitals in rotation on a palliative care unit-evaluation of attitude and competence in palliative care and hospice.

PURPOSE: The effect of the duration of an educational rotation presented at a palliative care unit on the palliative care knowledge gain and the increase of palliative care self-efficacy expectations are unclear. METHODS: This national prospective multicenter pre-post survey conducted at twelve German University Comprehensive Cancer Centers prospectively enrolled physicians who were assigned to training rotations in specialized palliative care units for three, six, or twelve months. Palliative care knowledge [in %] and palliative care self-efficacy expectations [max. 57 points] were evaluated before and after the rotation with a validated questionnaire. RESULTS: From March 2018 to October 2020, questionnaires of 43 physicians were analyzed. Physicians participated in a 3- (n = 3), 6- (n = 21), or 12-month (n = 19) palliative care rotation after a median of 8 (0-19) professional years. The training background of rotating physicians covered a diverse spectrum of specialties; most frequently represented were medical oncology (n = 15), and anesthesiology (n = 11). After the rotation, median palliative care knowledge increased from 81.1% to 86.5% (p < .001), and median palliative care self-efficacy expectations scores increased from 38 to 50 points (p < .001). The effect of the 12-month rotation was not significantly greater than that of the 6-month rotation. CONCLUSION: An educational rotation presented in a specialized palliative care unit for at least six months significantly improves palliative care knowledge and palliative care self-efficacy expectations of physicians from various medical backgrounds.

National strategy for palliative care of severely ill and dying people and their relatives in pandemics (PallPan) in Germany - study protocol of a mixed-methods project.

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 impacts on palliative care for non-COVID-19 patients. Strategies on the care for seriously ill and dying people in pandemic times are lacking. Therefore, the program 'Palliative care in Pandemics' (PallPan) aims to develop and consent a national pandemic plan for the care of seriously ill and dying adults and their informal carers in pandemics including (a) guidance for generalist and specialist palliative care of patients with and without SARS-CoV-2 infections on the micro, meso and macro level, (b) collection and development of information material for an online platform, and (c) identification of variables and research questions on palliative care in pandemics for the national pandemic cohort network (NAPKON). METHODS: Mixed-methods project including ten work packages conducting (online) surveys and qualitative interviews to explore and describe i) experiences and burden of patients (with/without SARS-CoV-2 infection) and their relatives, ii) experiences, challenges and potential solutions of health care professionals, stakeholders and decision makers during the SARS-CoV-2 pandemic. The work package results inform the development of a consensus-based guidance. In addition, best practice examples and relevant literature will be collected and variables for data collection identified. DISCUSSION: For a future "pandemic preparedness" national and international recommendations and concepts for the care of severely ill and dying people are necessary considering both generalist and specialist palliative care in the home care and inpatient setting.

[Characteristics of Patients with Breathlessness]. / Charakteristika von Palliativpatienten mit Atemnot.

Background Breathlessness is a common and distressing symptom in patients with advanced life-limiting disease. The aim of this study was to describe demographical and clinical characteristics of patients with breathlessness in Germany. Methods We conducted a secondary analysis of hospice and palliative care inpatient data from 2006 to 2008. The Hospice and Palliative Care Evaluation (HOPE) is an annual prospective German survey, that includes a validated 16-item symptom-and-problem checklist (severity score 0 - 3). Characteristics of patients with or without breathlessness were compared in a pure descriptive manner. Interpretation of given p-values takes the error inflation due to multiple testing into account. Results Breathlessness was recorded in 2860/5320 (53.8 %) patients (mean age 67.2 years (SD 12.4), 51.4 % female, 93.6 % malignant disease (female/male lung cancer 15.7/29.5 %, breast cancer 20.3/0.3 %, colon 10.3/8.7 %). Breathless patients compared with those without breathless ness had a significantly worse functional status (ECOG 3 - 4: 78.4 % vs. 70.8 %, p < 0.001), suffered from a larger number (11.1 vs. 9.5, p < 0.001) of symptoms and the symptoms were of higher intensity (except confusion). Breathless patients had a higher risk to die during inpatient stay (43.5 % vs. 32.4 %, p < 0.001). Conclusion Based on this large sample of hospice and palliative care inpatients, breathlessness is associated with a high symptom burden and shortened survival. Breathless patients need more attention in health care.

[Estimation of the Palliative Care Needs and the Extent of Coverage by Specialized Outpatient Palliative Care Teams in Selected Regions of Westphalia-Lippe]. / Abschätzung des ambulanten palliativmedizinischen Versorgungsgrades regionaler palliativmedizinischer Konsiliardienste in Westfalen-Lippe.

BACKGROUND: Data to estimate the palliative care needs and its outpatient coverage are of public health interest. METHODS: The theoretical palliative care needs were determined on the basis of a population with advanced cancer in selected regions of Westphalia (Germany); information from evaluated death certificates issued in 2011 in the cities of Bochum (BO) and Muenster (MS) and the rural districts of Coesfeld (COE) and Borken (BOR) were used for the analysis. The number of patients thus assessed was linked to anonymized data from the regional palliative home care teams and an estimate was made on the extent of palliative care provision. RESULTS: A total of 12,424 death certificates from 2011 were evaluated. In 22.1% (n=2,751), palliative care needs before death can be assumed. In the same year, 2,396 patients were cared for by the regional palliative home care teams, with 1,288 patients dying of cancer. The coverage of outpatient palliative care was calculated as follows: BO 54.2% (567/1,046), MS 60.6% (385/635), COE 54.4% (210/386), BOR 18.4% (126/684). CONCLUSIONS: One in 5 individuals has a need for palliative care before death. In statistical terms, more than 50% of tumor patients were cared for by regional palliative home care teams in the cities of Bochum and Muenster and the rural district of Coesfeld. By contrast, the degree of palliative care was less than 20% in the rural district of Borken.

[Management of refractory breathlessness in patients with advanced disease]. / Palliative Therapie der Atemnot bei fortgeschrittenen Erkrankungen.

BACKGROUND: Breathlessness is a frequent and distressing symptom in advanced disease. It can have a significant impact on the quality of life of both patients and relatives. OBJECTIVES: A summary of nonpharmacological and pharmacological measures for breathlessness based on existing evidence is provided. MATERIALS AND METHODS: Analysis of primary studies, reviews and guidelines for the named symptoms and their management were analyzed. RESULTS: Recognition and assessment are essential for the management of breathlessness. Management includes various nonpharmacological and pharmacological measures, which should be combined for best results. Nonpharmacological strategies comprise general information, management plan, hand-held fan, physical activity, and rollators. Opioids are the drugs of choice for intractable breathlessness. The evidence base for benzodiazepines and other drugs is rather weak. CONCLUSION: A number of treatment options, especially in the nonpharmacological area, help the patients to better cope with their breathlessness.

[Epidemiological study on place of death for cancer patients Autoren]. / Epidemiologische Untersuchung zum Sterbeort von Tumorpatienten.

Background | In Germany, place of death is recorded on death certificates, but is not analyzed further. In consequence, only little is known about the place of death among cancer patients at the population level. The aim of the study was to describe the changes of places of death in cancer patients over a time period of 10 years. Material and methods | This study examined death certificates from 2001 and 2011 of selected regions of Westphalia-Lippe (Germany). Cancer patients were identified on the basis of cause of death. Description of frequencies of place of death and subgroup analyses by tumor entity (ICD-10, C00-C96) were performed. Results | A total of 24 009 death certificates were analyzed (2001: 11,585; 2011: 12,424). Cancer was the underlying or contributory cause of death in 34.0%. For the years 2001 and 2011, respectively, the following distributions of place of death were observed: home, 24.1% vs. 24.7% (p=0.553); hospital, 62.8% vs. 51.4% (p=0.001); palliative care unit, 0.0% vs. 2.2%; hospice, 5.5% vs. 12.5% (p=0.001); nursing home, 7.4% vs. 10.9% (p=0.001); other, 0.1% vs. 0.3% (p=0.063); no data, 0.1% vs. 0.3% (p=0.015). Patients with brain tumours had a higher probability of dying in a hospice (2011: female 23.5%; male 27.7%). A higher risk of death in hospital was observed among cancer patients with an underlying hematological malignancy (2011: female 63.7%; male 68.4%). Conclusion | Cancer patients mainly die in institutions, with hospitals being the most frequent location. Only one in four deaths occurs in the home setting. The trend over time shows a shift in place of death away from hospitals towards hospices, palliative care units, and nursing homes.

[Characteristics of patients with breathlessness - results of the german hospice and palliative care evaluation]. / Charakteristika von Palliativpatienten mit Atemnot.

BACKGROUND: Breathlessness is a common and distressing symptom in patients with advanced life-limiting disease. The aim of this study was to describe demographical and clinical characteristics of patients with breathlessness in Germany. METHODS: We conducted a secondary analysis of hospice and palliative care inpatient data from 2006 to 2008. The Hospice and Palliative Care Evaluation (HOPE) is an annual prospective German survey, that includes a validated 16-item symptom-and-problem checklist (severity score 0-3). Characteristics of patients with or without breathlessness were compared in a pure descriptive manner. Interpretation of given p-values takes the error inflation due to multiple testing into account. RESULTS: Breathlessness was recorded in 2860/5320 (53.8 %) patients (mean age 67.2 years (SD 12.4), 51.4 % female, 93.6 % malignant disease (female / male lung cancer 15.7/29.5 %, breast cancer 20.3/0.3 %, colon 10.3/8.7 %)). Breathless patients compared with those without breathless ness had a significantly worse functional status (ECOG 3-4: 78.4 % vs. 70.8 %, p < 0.001), suffered from a larger number (11.1 vs. 9.5, p < 0.001) of symptoms and the symptoms were of higher intensity (except confusion). Breathless patients had a higher risk to die during inpatient stay (43.5 % vs. 32.4 %, p < 0.001). CONCLUSION: Based on this large sample of hospice and palliative care inpatients, breathlessness is associated with a high symptom burden and shortened survival. Breathless patients need more attention in health care.

[Episodic breathlessness: translation and consenting of the international definition using the Delphi method]. / Atemnotattacken: Übersetzung und Konsentierung der internationalen Definition im Rahmen einer Delphi-Befragung.

BACKGROUND: Similar to pain, refractory breathlessness can occur episodically. Episodic Breathlessness is a distressing symptom in patients with advanced life-limiting disease. The lack of a universal definition impedes symptom understanding in clinical practice and effective management, respectively. The aim of the study was to formally consent a German translation of the English definition and terminology of episodic breathlessness. METHODS: A web-based Delphi survey was conducted with German breathlessness experts (breathlessness working group of Germany's National Guideline (S3) for Palliative Care). Drafts of German-language definitions und terminology were assessed using structured questionnaires by binary rating or rankings, respectively. Optional comments were analysed by content analysis. Consensus was defined by ≥ 70% agreement among participants. RESULTS: In two resulting Delphi-rounds 8/16 (50%) und 11/16 (69%) experts, 30-59 years of age, 50%/55% female, participated. After the second round, consensus was reached for the symptom's description "Atemnotattacke" (73%) and a German-language definition (90%). The terms "vorhersehbar" vs. "unvorhersehbar" were directly consented for the categorization (88%). CONCLUSION: The formally consented German definition and terminology of episodic breathlessness enable clearer symptom understanding and provide a precise basis for education and research on the symptom and its management also in Germany. Effective management options are warranted to improve quality of life of suffering patients and their relatives.

If you had less than a year to live, would you want to know? A seven-country European population survey of public preferences for disclosure of poor prognosis.

OBJECTIVE: With increasing European cancer deaths, clinicians must manage information regarding poor prognosis. This study aimed to determine European citizens' preferences, within a scenario of serious illness such as cancer with less than a year to live, for information disclosure regarding poor prognosis, the likely symptoms and problems, and the care options available, to measure variations between countries and to identify factors associated with preferences. METHODS: A population-based cross-national telephone survey using random digit dialling in seven countries was conducted. RESULTS: Among 9344 respondents, data revealed an international preference (73.9%) to always be informed in the scenario of having a serious illness such as cancer with less than a year to live. This varied from 67.6% in Italy to 80.7% in Flanders. A minority (21.1%) did not want such information unless they ask, or at all. People younger than 70 years (OR 0.72, 95% CI 0.62-0.83, p < 0.001), men (OR 1.23, 95% CI 1.10-1.37, p < 0.001), those with experience of illness (OR = 1.20. 95% CI 1.01-1.43, p < 0.05) and with more education (OR = 1.20, 95% CI 1.09-1.32, p < 0.001) were more likely to want to know of limited time left. CONCLUSIONS: The models confirmed the influence of four factors in more than one country (age, gender, education and most concerning problem) and added 11 country-specific factors to which national policies and clinical practice should respond. These findings confirm a majority public preference to be informed in a scenario of poor prognosis. Policy clinical practice should facilitate elucidation and delivery of preferences. Evidence for effective communication skills-building interventions for clinicians is required.

Population, mortality and place of death in Germany (1950-2050) - implications for end-of-life care in the future.

OBJECTIVES: European populations are ageing, but data on the associated end-of-life care needs are scarce. This study aimed to analyse population, mortality and place of death (PoD) trends in Germany since 1950, and to project mortality by PoD until 2050. STUDY DESIGN AND METHODS: Secondary analysis of national statistics on population, mortality and PoD by age and gender. Future numbers and proportions of deaths by PoD - hospital deaths (HDs) and non-hospital deaths (NHDs) - were based on recent trends (2005-2009). Linear models accounted for the effect of age and gender. RESULTS: The German population increased by 19.0% between 1950 and 2002, and has remained relatively stable ever since. However, it is expected that it will decrease (15.4%) from 2009 to 2050 (from 81.8 to 69.4 million). The annual number of deaths has shown an increasing trend, except for a decrease in 1975-2004. A 26.0% increase is expected from 2009 to 2050 (854,544 to 1,077,000 deaths). Older people (age ≥ 75 years) will account for 87.8% of all deaths in 2050 (64.4% in 2009). The proportion of HDs was stable, with an annual mean of 47.0% (range 44.9-47.8%). The models estimated that most people will continue to die outside of hospital in 2050 (48.6 or 54.1%), and absolute numbers of both HDs and NHDs will increase from 2009 to 2050 [HD: by 20.1 million (30.6%); NHD: by 35.5 million (17.0%)]. CONCLUSIONS: Unlike in other industrialized countries, most people in Germany die outside of hospital. The need to plan for growing end-of-life care needs and ageing is urgent in Germany but also applies to the rest of Europe. A joint European policy must inform national strategies.

[Pharmacological therapy of refractory dyspnoea : a systematic literature review]. / Medikamentöse therapie der refraktären atemnot : eine systematische literaturübersicht.

BACKGROUND: The management of breathlessness in patients with life-limiting diseases is still difficult and complex. This systematic review aims to summarize and analyze clinical trials of four different treatment options (opioids, benzodiazepines, corticosteroids and oxygen) for the relief of breathlessness. MATERIALS AND METHODS: A systematic review based on database searching of Medline, Embase and Cochrane Library was carried out and experts in the field were contacted. The search was conducted in July 2011. Included were systematic reviews, controlled and randomized controlled clinical trials in patients suffering from breathlessness due to advanced disease. Studies were selected, extracted and the data analyzed by two independent reviewers using narrative synthesis. RESULTS: The search retrieved 2,559 hits. Five systematic reviews and 10 randomized controlled trials were included. Opioids (oral and parenteral) were the only drug group with evidence for relief of breathlessness. Benzodiazepines failed to show a significant effect for the relief of breathlessness intensity but demonstrated a tendency towards benefit. No studies were identified assessing steroids. There is no additional benefit from oxygen compared to room air in non-hypoxemic cancer patients but there is a statistically significant benefit of oxygen in non-hypoxemic COPD patients. CONCLUSION: Oral and parenteral opioids seem to be effective for the relief of breathlessness and should be the first choice for pharmacological treatment. Benzodiazepines should be used with reservation. There is not enough evidence for the use of steroids except for COPD patients. Non-hypoxemic cancer patients do not benefit from oxygen. The English full text version of this article will be available in SpringerLink as of November 2012 (under "Supplemental").

Preferences for place of death if faced with advanced cancer: a population survey in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain.

BACKGROUND: Cancer end-of-life care (EoLC) policies assume people want to die at home. We aimed to examine variations in preferences for place of death cross-nationally. METHODS: A telephone survey of a random sample of individuals aged ≥16 in England, Flanders, Germany, Italy, the Netherlands, Portugal and Spain. We determined where people would prefer to die if they had a serious illness such as advanced cancer, facilitating circumstances, personal values and experiences of illness, death and dying. RESULTS: Of 9344 participants, between 51% (95% CI: 48% to 54%) in Portugal and 84% (95% CI: 82% to 86%) in the Netherlands would prefer to die at home. Cross-national analysis found there to be an influence of circumstances and values but not of experiences of illness, death and dying. Four factors were associated with a preference for home death in more than one country: younger age up to 70+ (Germany, the Netherlands, Portugal, Spain), increased importance of dying in the preferred place (England, Germany, Portugal, Spain), prioritizing keeping a positive attitude (Germany, Spain) and wanting to involve family in decisions if incapable (Flanders, Portugal). CONCLUSIONS: At least two-thirds of people prefer a home death in all but one country studied. The strong association with personal values suggests keeping home care at the heart of cancer EoLC.

Are we heading in the same direction? European and African doctors' and nurses' views and experiences regarding outcome measurement in palliative care.

OBJECTIVE: To examine and compare doctors' and nurses' views and experiences regarding outcome measurement in palliative care, including patient-reported outcome measures (PROMs). METHODS: A web-based survey developed through expert review and piloting was conducted in Europe and Africa with palliative care professionals working in clinical care, audit and research. RESULTS: The overall participation rate was 42% (663/1592) and the overall completion rate was 59% (392/663). Of these respondents, 196 were doctors (51% male, mean 47 years) and 104 were nurses (84% female, mean 45 years). Doctors' most common reported reasons for not using tools were time constraints followed by lack of training. For nurses, it was lack of training followed by time constraints. Provision of information and guidance influenced willingness to use measures. For those that used tools, most reported favourable outcome measurement experiences. Both prioritized brief PROMs, and measures that included physical and psychological domains. For clinical purposes, the main advantage for doctors was assessment/screening, and clinical decision making for nurses. For research, doctors were most influenced by a measure's comparability with national/international literature followed by its validation in palliative care. For nurses, validation in palliative care was followed by tool access. CONCLUSION: Overall these respondents shared similar views and experiences, and both were influenced by similar factors. Multidisciplinary outcome measurement education and training is feasible and required. Multidimensional and brief PROMs that include physical and psychological domains need to be prioritized, and access to freely available, validated and translated tools is needed to ensure cross-national comparisons and coordination of international research.

The use of two common palliative outcome measures in clinical care and research: a systematic review of POS and STAS.

The Palliative Care Outcome Scale (POS) and the Support Team Assessment Schedule (STAS) are outcome measures assessing quality of care in palliative care patients. This review aims to appraise their use in clinical care and research. Five electronic databases were searched (February 2010) for original papers describing the validation or use of POS and/or STAS. Of the 83 papers included, 43 studies were on POS, 39 on STAS and one study using both. Eight STAS studies validated the original version, four an adaptation; 20 studies applied the STAS in another culture and 19 in other languages. POS papers reported included: 14 adapted POS versions, 12 translations of the POS and 15 studies of use in different cultures. Both measures have been used in cancer, HIV/AIDS and in mixed groups. POS has also been applied in neurological, kidney, pulmonary and heart disease. Both tools were used in different areas such as the evaluation of care or interventions, description of symptom prevalence and implementation of outcome measures in clinical practice. Overall, they seem to be well accepted tools for outcome measurement in palliative care, both in clinical care and research.

[Symptom management of pain and breathlessness]. / Symptomatische Behandlung von Schmerzen und Atemnot.

Pain and breathlessness are common symptoms in advanced disease. Pain should be treated with a combination of non-opioids and opioids. Coanalgesics play an important role in the treatment of neuropathic pain. Side-effects of opioids should be treated prophylactically but can make opioid rotation necessary. Management of breathlessness needs a combination of non-pharmacological and pharmacological measures. Fans and rollators showed to be effective in relieving breathlessness. Opioids are the drugs of choice for breathlessness. The efficacy of benzodiazepines could not be confirmed, they should only be used as second line therapy. Also, oxygen should only be given regularly after an individual test.

[Care of the dying in the hospital: initial experience with the Liverpool Care Pathway (LCP) in Germany]. / Sterbebegleitung im Krankenhaus--erste Erfahrungen mit dem "Liverpool Care Pathway" (LCP) in Deutschland.

BACKGROUND AND OBJECTIVE: In the last few years public interest in the care of severely ill and dying patients has been growing. The aim of palliative medicine is to improve the care of the dying. However, this is still not achieved in many general hospitals. The Liverpool Care Pathway (LCP) for the care of the dying intends to change this situation. The aim of this study was to explore the views of professionals using the LCP as a framework for ensuring good care of the dying. METHODS: A qualitative study was conducted with an interdisciplinary focus group of ten professionals (nurses, physicians, spiritual adviser, social worker, physiotherapist and art therapist) to explore their views and experience after implementation of the LCP in a palliative care unit (PCU). The recorded discussion between them was transcribed verbatim and analysed using content analysis by three independent reviewers. RESULTS: Seven nurses and three physicians with an average work experience of 16 years each took part in the focus group. Based on the experience of 24 patients, the LCP was evaluated as very positive by all participants. In particular, three aspects were emphasized as having high relevance for a good quality of care: improvement of self-confidence, better control of symptoms, and enhancement of the communication between professionals and with patients and their relatives. However, some weaknesses were also mentioned, e.g. inadequate effort of documenting the beginning of implementing the scheme. CONCLUSION: The LCP was well received by professionals after the initial implementation of the LCP in a German PCU. The LCP was judged as an appropriate and helpful framework in the care of the dying.