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.

[Palliative sedation : Development and consensus of a German language documentation template]. / Palliative Sedierung : Entwicklung und Konsentierung einer deutschsprachigen Dokumentationsvorlage.

BACKGROUND: Palliative sedation (PS) serves as a therapeutic option in cases of otherwise intractable suffering. As the use of sedative and hypnotic medication in many diverse situations is a core competency of anesthesiology, anesthesiologists are confronted with questions of sedative therapy at the end of life in institutions for specialized palliative care, in intensive care units and intermediate care wards. In recent years a number of guidelines have been published internationally but so far no official guidelines exist in Germany. The most recognized document is the European Association for Palliative Care (EAPC) framework on PS. This project aims to develop a German language template for the preparation, application, documentation and evaluation of PS according to the current frameworks, especially the EAPC framework on PS. METHODS: A first draft of the template was generated by the project team using the EAPC framework and individual templates of various institutions, which had been collected during a previous project. Professionals (n = 136) from inpatient and outpatient specialist palliative and hospice care were invited to assess all items of the draft regarding "relevance", "wording" and "feasibility" in an online Delphi survey (Unipark®, Questback, Cologne, Germany). After the second Delphi round an expert panel was asked to reflect the results and generate a final draft. Approval was granted if acceptance exceeded 75% of participants. RESULTS: The 3 rounds of the Delphi process were completed by 64, 46 and 41 participants, respectively. The Delphi process as well as the expert panel led to significant changes of the template. The indications for PS had to be clarified. The significance of documentation of vital parameters, such as oxygen saturation, blood pressure or respiratory rate during PS was intensively discussed. In many teams, predominantly hospice or outpatient palliative care teams, it seems to be difficult to measure these parameters or it is regarded as inappropriate in a palliative care setting. In contrast, the EAPC framework recommends monitoring of vital parameters in cases of intermittent or respite sedation. Finally, a solution was found to support documentation of additional data without the explicit mentioning of specific parameters. After the third Delphi round, all 16 items of the documentation template reached consensus with respect to relevance (82.9-100%), clarity of wording (80.5-100%), and feasibility in practice (78-100%). CONCLUSION: This article provides an empirically based, multiprofessional consented documentation template for PS. Core elements of the documentation of PS are the indications and the decision process towards PS. During the treatment, at least the level of sedation and the symptom burden have to be recorded. The documentation of vital signs during PS remains a highly disputed topic. The presented data suggest that especially in outpatient settings and in hospices measuring and documentation of vital parameters is uncommon and therefore is often regarded as not feasible. This template can help to support the medically and ethically sound use of PS and facilitate research. The template can be accessed at http://www.palliativmedizin.uk-erlangen.de/forschung/downloads/ .

[Standard operating procedures (SOPs) for palliative care : Presence and relevance of palliative SOPs within the network of German Comprehensive Cancer Centers (CCCs) funded by the German Cancer Aid]. / Standard Operating Procedures (SOPs) in der Palliativmedizin : Vorhandensein und Relevanz palliativmedizinischer SOPs in den von der Deutschen Krebshilfe geförderten Comprehensive Cancer Centers (CCCs).

BACKGROUND: Standard operating procedures (SOPs) can contribute to the improvement of patient care. OBJECTIVES: Survey the presence and relevance of SOPs for palliative care (PC) within the network of German Comprehensive Cancer Centers (CCCs) funded by the German Cancer Aid. MATERIALS AND METHODS: In a descriptive survey, palliative care services within 15 CCCs funded by the German Cancer Aid were asked to rate availability and thematic relevance of (1) symptom-related, (2) clinical pathways and (3) measures- and processes-oriented SOPs using a structured questionnaire. RESULTS: Pain management SOPs were the most common (n =11; 73 %). The most thematic relevance showed SOPs dedicated to pain management, care in the last days of life and delirium and other neuro-psychiatric diseases (each n =13; 87 %), followed by bowel obstruction, dyspnoea, nausea and palliative sedation (each n =12; 80 %). CONCLUSIONS: There is a wide gap between availability and perceived relevance of palliative care SOPs within the network of German CCCs funded by the German Cancer Aid. It is obvious that there is a need for further development of relevant SOPs in palliative care.

[State of integration of palliative care at Comprehensive Cancer Centers funded by German Cancer Aid]. / Integration der Palliativmedizin in die von der Deutschen Krebshilfe e. V. geförderten onkologischen Spitzenzentren.

BACKGROUND: Similarities and differences of integration of palliative care in clinical care, research and education structures at German Comprehensive Cancer Centers (CCC) are not known in detail. OBJECTIVE: Provide an overview of availability and the way of integration of specialized palliative care at CCCs funded by the German Cancer Aid (Deutsche Krebshilfe, DKH). METHOD: We conducted structured interviews from May to August 2014 with heads of palliative care departments (personally or by telephone). The interviews included a quantitative and a qualitative part. Other stakeholders of CCCs were asked the questions of the qualitative part. We evaluated the qualitative data using the content analysis by Mayring and MAXQDA 11.0. SPSS 21.0 was used for quantitative analysis. RESULTS: 26 interviews were realized in 13 CCCs with 14 sites, which received funding, by DKH till August 2014 (one CCC had two university hospitals). Of these, 12 sites had a palliative care unit (86%), 11 sites had palliative care consulting services available (79%). Participation of palliative care specialists in tumor boards is not provided in 3 institutions (21%) and is often not feasible on regular basis in the other institutions, due to staffing shortage. In 7 sites (50%) defined criteria to integrate palliative care into CCCs were available. In the last 5 years specialized palliative care of 4 sites received an invitation for a research project by another department within the CCC (29%). 10 sites (71%) had started own palliative care research projects. Chairs in palliative care were available in 4 CCCs (29%). CONCLUSION: The extent and depth of palliative care integration in the 14 CCC sites is heterogeneous.

[Comparison of Patients and their Care in Urban and Rural Specialised Palliative Home Care - A Single Service Analysis]. / Retrospektive Datenanalyse von Patienten in der Spezialisierten Ambulanten Palliativversorgung (SAPV) - Vergleich zwischen Stadt und Landkreis.

BACKGROUND: Specialised outpatient palliative care teams (in Germany called SAPV) aim to ensure best possible end-of-life care for outpatients with complex needs. Information on the influence of living areas (rural vs. urban) on patient and care related aspects is rare. This study aims to explore differences between palliative care patients in urban and rural dwellings concerning their nursing and service characteristics. METHODS: A retrospective data analysis of documentary data for 502 patients supplied by SAPV team from December 2009 to June 2012 was conducted. Patients and care characteristics were investigated by frequency analysis and were compared for both groups of urban and rural dwelling patients (T test, Chi², Fisher's exact test p < 0.05). RESULTS: 387 complete data sets could be included. Urban (n=197) and rural (n=190) dwelling patients were almost equally sized groups. The mean age of the whole sample was 74.5 years, 55.3% were female. Most patients were diagnosed with cancer (76.8%). No significant differences in urban and rural dwelling patients concerning most demographics, care, disease and service related aspects of palliative home care could be detected. An exception is that the rate of re-admittance to hospital is higher for rural dwelling patients (Fisher's exact test p=0.022). CONCLUSIONS: Although predominantly presumed, the single service analysis shows - except for the re-admittance rate to hospital - no considerable differences between palliative care patients regarding their living area. Our findings indicate that patients cared for in rural and urban settings have similar needs and impose similar requirements on palliative care teams.

[Transcutaneous carbon dioxide measurements. Dynamics during hyperventilation in healthy adults]. / Transkutane Kohlenstoffdioxidmessung. Dynamik unter Hyperventilation bei gesunden Erwachsenen.

BACKGROUND: In various fields of medicine the transcutaneous measurement (p(tc)CO2) of carbon dioxide pressure (pCO2) has been accepted as a reliable measuring method while for other disciplines the method has been doubted. Nevertheless, some minor therapeutic interventions, such as electroconvulsive therapy and breathing biofeedback used in psychiatry could benefit considerably from transcutaneous monitoring. The study presented here investigated the accuracy of transcutaneous measurement as compared to end-tidal (p(et)CO2) and capillary (p(cap)CO2) measurements in hyperventilation. METHODS: In this study 22 healthy volunteers underwent a hyperventilation procedure with assessment of p(tc)CO2, p(et)CO2, p(cap)CO2, breathing and pulse rates. The three measurement methods of pCO2 were compared pairwise by Bland-Altman diagrams before and at the end of hyperventilation. The time delay between p(et)CO2 and p(tc)CO2 was determined for each individual participant by a stepwise shifting the time course of p(et)CO2 until an optimal congruence with p(tc)CO2 was reached. RESULTS: The study group consisted of 10 men and 12 women with a mean age of 30.5 ± 9.4 years. The experimental procedure lasted an average of 27.7 min including 1.9 min for the baseline measurement and 11.6 min for the actual hyperventilation procedure. The course of pCO2 from baseline to the end of the hyperventilation phase and back to normal baseline followed a U-curve in all individuals. The pCO2 could be reduced by a mean of approximately 45 % for the 3 measurement methods from the individual baseline of 35 mmHg. The breathing and pulse frequencies increased by 26.8 % and 17.3 %, respectively. A total of 91 p(cap)CO2 values (mean 4 values per person) and 1,218 pairs of p(et)CO2 and p(tc)CO2 values (mean 55 values per person) could be evaluated. The difference of the pCO2 values for two measurement methods revealed similar standard deviations in the Bland-Altman diagrams of about 2.5 mmHg for the 3 pairwise comparisons. The absolute measurement differences between p(et)CO2 and p(tc)CO2, p(cap)CO2 and p(tc)CO2 as well as p(et)CO2 and p(cap)CO2 were averaged for each single participant and afterwards across all individuals resulting in values of 2.0, 2.5 and 2.3 mmHg, respectively. When the baseline and hyperventilation periods were examined separately in this analysis they did not show any relevant differences. The individually determined delays of p(tc)CO2 in regard to p(et)CO2 averaged 53 s. The time delay exceeded 1 min in only two study participants. CONCLUSIONS: In the presented hyperventilation experiment the agreement between the p(tc)CO2 values and the p(et)CO2 and p(cap)CO2 measurements were comparable to the agreement between the latter two. Altogether, the comparability of the measurement methods seemed satisfactory. The delay between the time courses of p(et)CO2 and p(tc)CO2 of <1 min for most participants was short and is acceptable for clinical practice. Because only healthy subjects were tested these results might not be the same in children and critically ill patients and could differ from the presented results.

[Pharmacological treatment of malignant bowel obstruction in severely ill and dying patients : a systematic literature review]. / Medikamentöse therapie der gastrointestinalen obstruktion bei schwerkranken und sterbenden patienten : eine systematische literaturübersicht.

BACKGROUND: Malignant bowel obstruction (MBO) occurs in 3-6% of patients suffering from advanced cancer. The incidence of MBO is highest in patients with gynaecological and colorectal malignancies. Typical symptoms include nausea, vomiting, abdominal pain and constipation. Initially, these symptoms may be isolated and sporadic, becoming more and more intense later on. The suggested treatment includes surgical, interventional and pharmacological strategies depending on the symptom pattern and the performance status of the patient. This study investigates the current evidence of pharmacological treatment for MBO during the last days of life. MATERIALS AND METHODS: A systematic literature search of the electronic databases PubMed/Medline and Embase from 1966-2011 was conducted. All retrieved publications were screened for relevance with regard to content and methodology on the basis of title and abstract. The full text was obtained for all relevant articles and for those articles where classification was unsure. RESULTS: The systematic literature search identified 5,431 papers. After screening, 90 publications were analyzed in detail. A total of 69 publications were excluded due to content or methodology. Finally, 21 manuscripts were considered for review. Only a few studies used high quality methodology and they all had rather small sample sizes. In summary, they show weak positive signs of efficacy for the use of somatostatin analogues or anticholinergics in the pharmacological treatment of MBO. CONCLUSION: These results do not lead to a clear evidence base for the pharmacological treatment of MBO in the last days of life. As adverse events were infrequent and clinical studies suggest efficient symptom relief, the authors recommend the use of octreotide as the first line medication. Butylscopolamine may be an alternative, where octreotide is not available. Higher costs for octreotide compared with butylscopolamine have to be considered. Available data do not allow assessing the effect of corticosteroids on symptoms caused by MBO when given during the last days of life. The English full text version of this article will be available in SpringerLink as of November 2012 (under "Supplemental").

[Evaluation of the need for communication training of ophthalmologists for gaining telephone consent for cornea donation]. / Bitte um Einverständnis in eine Hornhautspende: Bedarfsanalyse für ein Kommunikationstraining mit Augenärzten in der Spendenakquise.

INTRODUCTION: Because of the gap between the high need for cornea tissue for transplantation and the current lower numbers of donors, there is high pressure to succeed in telephone calls to relatives of deceased for obtaining consent. Besides the attempt to increase the rate of donors, these telephone calls should be gentle for relatives and not overstrain professionals. This study assesses the need and expectations of physicians towards communication training in preparation for their task. METHODS: In September-October 2009 a needs assessment for communication training among physicians who currently work or have worked for the eye bank took place. Personal data were recorded and their estimate of the perceived burden as well as needs and potential benefits from a specific communication training for obtaining consent for cornea donation by telephone were assessed using numeric rating scales between 1 (minimum) and 10 (maximum). Results were expressed as mean and range. RESULTS: The participants felt only moderately prepared for the task regarding information content, their emotions and personal convictions. They considered a specific training to be highly meaningful, necessary and helpful. Their highest burden during telephone calls previously experienced was documented as 8.4 and the average burden as 6.3. Accordingly, their willingness to continue working at an eye bank after their rotation was moderate. DISCUSSION: Physicians involved in obtaining consent for cornea donation by telephone feel highly stressed and only moderately prepared for fulfilling the task both for the information content and on the emotional level. Accordingly, specific communication training is perceived as highly meaningful, necessary and helpful. An educational program was developed to meet the needs and expectations of physicians.

[Experiences of cancer patients with breakthrough pain and pharmacological treatments]. / Erfahrungen von tumorpatienten mit durchbruchschmerzen und medikamentösen behandlungen.

BACKGROUND: of cancer patients receiving palliative care, 80% suffer from cancer pain, and again 80% of these patients report breakthrough pain. This study explores the patients' perception of breakthrough pain, their experiences with existing therapeutic regimens and their expectations regarding an ideal breakthrough pain medication. METHOD: from November 2008 to February 2010 two German palliative care units recruited 80 in- or outpatient cancer patients who completed a standardized questionnaire on breakthrough pain characteristics, analgesic medication, attitudes towards new treatment approaches for breakthrough pain, and experiences with alternative routes of drug administration as part of the "European Survey of Oncology Patients' Experience of Breakthrough Pain". RESULTS: the study participants suffered from 1-12 episodes of either incident (47.5%) or spontaneous pain (37.5%) per day which were perceived as "severe" in 71% of all cases. These exacerbations highly interfered with the patients' general activity, mood, walking ability, and normal work. Overall, 64% of the patients reported alleviation from pharmacological (26%) and non-pharmacological (73%) interventions. Subcutaneous (40%) and oral (39%) routes were used frequently; intranasal (1.25%) and intrapulmonary (1.25%) routes were used rarely. Only 64% of all participants stated an overall satisfaction with their breakthrough analgesia. CONCLUSION: the diagnosis and treatment of breakthrough pain seems to be conducted in a suboptimal manner, and standard recommendations on breakthrough pain relief are not implemented consistently. Possible causes of pain should be taken into account as well as multi-professional treatment interventions and alternative routes of administration of fast onset, effective drugs should be considered.

[Validation of the new version of the minimal documentation system (MIDOS) for patients in palliative care : the German version of the edmonton symptom assessment scale (ESAS)]. / Validierung der neuen fassung des minimalen dokumentationssystems (MIDOS(2)) für patienten in der palliativmedizin : deutsche version der edmonton symptom assessment scale (ESAS).

BACKGROUND: repeated self-assessment of symptoms and problems of patients is required for quality assurance in palliative care. In Germany, the Minimal Documentation System (MIDOS) has been designed specifically for palliative care patients. To adapt MIDOS as a German version of the Edmonton Symptom Assessment Scale (ESAS) a revised version of MIDOS(2) has now been validated. Two original items on average and highest pain intensity (11-step NRS) were replaced by one item on pain intensity on a 4-step VRS and the assessment of vomitus, lack of appetite and depressive mood were added to the assessment of nausea, dyspnoea, constipation, weakness, tiredness, anxiety, others and well-being which were already part of the original version. METHOD: all patients admitted to the palliative care unit were asked to participate voluntarily in this study. MIDOS(2), the German versions of the ESAS and the quality of life questionnaire EORTC QLQ-C15-Pal were completed on the same day during their inpatient stay. MIDOS(2) was repeated on the next day. RESULTS: from August 2009 to March 2010, 60 patients (55% men, 45% women; mean age = 64.3, range = 23.6-92.4 years) treated in the palliative care unit completed the study. Self-assessment with MIDOS(2) was reported to burden the patients only slightly (mean burden = 1.1, range: 0 = no to 10 = maximum burden on a NRS), application of MIDOS(2) took between 1 and 7 min (mean duration = 2.4 min) and 61.7% of the patients preferred MIDOS(2) (with VRS) to ESAS (30%) (with NRS) for routine daily documentation. External criterion validity by inter-item correlations of MIDOS(2) with ESAS varied between r = .533 (anxiety) and .881 (nausea) and between r = .348 (depressive mood) and .717 (constipation) for the corresponding items of the EORTC QLQ-C15-Pal. Test-retest reliability between the sum scores of symptoms and problems reported in MIDOS(2) on the first day and on the second day was .688, and r = .573 for well-being. CONCLUSION: MIDOS(2) can be recommended for routine daily documentation in palliative care because of low burden, little expenditure of time and high participation of patients. Statistical evaluation indicated good external validity and reliability.

[A wish to hasten death : what is behind it]. / Wunsch nach vorzeitigem Lebensende : Was steht dahinter?

"There's nothing more to do, so let's come to an end, Doc!" A request for euthanasia or physician-assisted suicide is a dramatic expression of patients' suffering and causes difficulties for staff members to react to these questions. Great efforts have been made in the last two centuries to gain a deeper understanding of the wish for hastened death of terminally ill patients and to develop conclusions for the management of these situations. This article presents differences in international legislation on euthanasia and summarises the ethical background. The current results from the literature according to motivations for the wish for hastened death, communicative functions of the request, attitudes and practices of physicians and their willingness to accompany the patient in euthanasia as well as practical implications for clinical practice are discussed.

Evaluation and comparison of two prognostic scores and the physicians' estimate of survival in terminally ill patients.

BACKGROUND: Most terminally ill patients request information about their remaining life span. Professionals are not generally willing to provide prognosis on survival, even though they are expected to be able to do so from their clinical experience. This study aims to find out whether the standardized instruments Palliative Prognostic Index (PPI) and the Palliative Prognostic Score (PaP-S) are appropriate, specific, and sensitive to estimate survival time in patients receiving inpatient palliative care in Germany. METHOD: PPI and PaP-S were assessed in addition to the core documentation data set of the Hospice and Palliative Care Evaluation for patients admitted to the palliative care units in Aachen, Bonn, and Cologne. Time of survival was assessed with repeated phone calls to the family and was defined as the difference between the day of completion of the instruments (excluded) and the day of death (included). RESULTS: Survival time was compared with physicians' estimations and prognostic scores in 83 patients. Whereas the estimates of the PPI and the PaP-S correlate highly, even higher correlations are found for the physicians' prognosis and the scores. Correlations between survival time and the prognostic scores or physicians' prognosis were lower. Physicians' estimations overestimated survival time on average fourfold. Estimations were more often correct for very good and very bad prognosis. DISCUSSION: The prognostic scores are not able to produce a precise reliable prognosis for the individual patient. Nevertheless, they can be used for ethical decision making and team discussions. Estimating survival time from clinical experience seems to be easier for very bad or very good prognosis for physicians.

[Problems and deficits in the transition from inpatient and outpatient care of cancer patients. A qualitative analysis]. / Schnittstellenproblematik beim Ubergang von stationärer zu ambulanter Versorgung von Tumorpatienten. Eine qualitative Analyse.

INTRODUCTION: Problems and deficits in the transition between hospital-based and outpatient care of cancer patients were evaluated. The project was initiated by the Public Health Department of the City of Aachen and was carried out with cooperation from all hospitals in the urban areas. METHOD: From September 2002 to April 2003 a total of 145 cancer patients fulfilling the inclusion criteria from 4 regional hospitals were documented at 4 time points within a period of 6-8 weeks by questionnaires, telephone and personal interviews. Aspects of interest were disease type, symptom burden, well-being, the homecare situation and medical aids required. RESULTS: Patients and their relatives reported on inadequate pain management, insufficient preparation of transition, problems in information flow, organisational problems, lack of attention and humaneness, deficiency of care, delay of diagnosis, inadequate access to services, insufficient prescription of drugs and adjuvants, financial problems and quarrels with the health insurance company on payment of aid devices. Coping strategies were mostly non-functional and not problem-orientated. DISCUSSION: Special attention should be paid to psychosocial and interpersonal needs of patients. Volunteers may have an important role in the care of patients and relatives. The introduction of case managers might lead to an advancement of care. Sensitisation of physicians, nurses and other caregivers for deficits in transition of patients is needed and should be covered in palliative care education and training.

[Indications and use of benzodiazepines in a palliative care unit]. / Indikationen und Gebrauch von Benzodiazepinen auf einer Palliativstation.

BACKGROUND: Benzodiazepines are often used in palliative care for symptom control, for example in treatment of dyspnea or anxiety. They are also used for palliative sedation, if symptoms are not controlled (fast) enough and a reduction of consciousness is therefore necessary. Incidence of palliative sedation has been reported to vary between 5-52% of all patients in a palliative care setting in several studies. METHOD: Information from the records of 160 patients treated in the palliative care unit from September 2003 to December 2004 was evaluated from an electronic database. Gender, age, diagnosis, symptoms and medication, especially benzodiazepine dosage and application were analyzed. RESULT: Of the patients 70% were treated with benzodiazepines but only 3.1% received deep and continuous sedation. Benzodiazepines were applied as required in oral or sublingual form in 71.8% of all cases. Lorazepam was given most often because of anxiety and agitation, oxazepam to induce sleep and midazolam in five cases of terminal sedation. Only rarely were diazepam and clonazepam prescribed to prevent or resolve convulsions. CONCLUSION: The majority of patients had been treated with benzodiazepines whereas only very few had received deep and continuous sedation.