Browsing by Author "Elsner, Frank"

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. 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. 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therapy was rated poor or very poor for a fifth of the cases and accordingly, antibiotics were more likely to be withdrawn if the clinical success was considered to be poor.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. 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.

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. 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). 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. 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.

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. 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". 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. 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.

Background: Little is known about the practice of palliative sedation (PS) in Germany. This paper presents an analysis of sedation-related data obtained from the German standardized core documentation system (HOPE) for palliative care patients. Methods: HOPE was complemented by an optional module on ethical decision making (EDM) which was pretested in 2004, data was collected in 2005-6 during the annual 3-month census. Data was analyzed descriptively from palliative care units (PCU - representative) and inpatient hospice (H - non-representative control group). Chi(2) test was used to test for differences between the reported data per item and year within one kind of setting (significance level p <= 0.05). Free-text entries were categorized inductively. Results: Datasets were obtained for 1,944 patients (P) with EDM. PS was performed in 13.0/11.8% (2005/2006) P in palliative care units (PCU) and 25.5/22.9% in hospices (H). Main reasons for PS in PCU were dyspnea, pain, fear or anxiety, in H reasons were inconsistent, high prevalence of psychosocial reasons. Most PS in PCU and about half of the PS in H were intermittent. Sedated P were younger than non-sedated. Only 7 P received PS after asking for euthanasia. The most used medication was midazolam. Conclusions: This study reveals a first insight into the use and practice of PS in German PCU and H. For a more detailed systematic survey into the course of decision-making and procedures, a new complementary optional module on PS is being developed by the HOPE group.

Background: Some patients with advanced and progressive diseases express a desire to hasten death. Aim: This study evaluated the motivations of patients expressing such a desire in a country with prohibitive legislation on euthanasia and physician-assisted suicide. Design: A modified form of Grounded Theory was used. Setting/participants: Patients from the departments of palliative medicine in three hospitals in Germany were recruited when they had made a statement or request to hasten death. Participants were interviewed face to face. Recruitment was stopped with 12 participants because of data saturation. Results: Thematic analysis revealed three main motivational themes: self-determination, agony, and time. Expectations toward health professionals, attitudes toward death, and secureness related to the end of life were additional main themes emerging from the analysis. Conclusions: The desire to hasten death may be used as an extreme coping strategy to maintain control against anticipated agony. Patients expected health professionals to listen to and respect their experiences. Emerging hypotheses included the following: (a) patients try to balance life time and anticipated agony, and the perception of time is distressing in this balancing act; (b) anticipated images of agony and suffering in the dying process occur frequently and are experienced by patients as intrusive; (c) patients expressing a desire to hasten death are in need of more information about the dying process; and (d) patients wanted their caregivers to listen to and respect their wish to hasten death, and they did not expect the caregivers to understand this as an order to actually hasten their death.

Background: In 2009, palliative medicine became an integrated and compulsory part of undergraduate training in Germany by legislation. After a transitional period, all medical faculties were required to provide adequate teaching with an according examination and certification procedure. In parallel, we conducted bi-annual surveys on all medical faculties in Germany to examine for potential discrepancies between the implementation process and their intended consequences on teaching time and content. Methods: Four consecutive bi-annual surveys (2006, 2008, 2010, 2012) of all 36 medical faculties in Germany were performed, using purposively for this study developed questionnaires. Likert scales and closed questions were analyzed descriptively. Results: Medical Faculty response rate increased from 50 % in 2006 to 88.9 % in 2012. Teaching coordinators in palliative medicine primarily had an anesthesiology or internal medicine background. There was a noted increase over time of the involvement of specialized palliative care units (PCUs) as providing the setting for education. The number of faculties that were able to offer a complete 16 weeks of training in palliative medicine during the "final year" rose steadily. In addition, increased patient-centered teaching formats have been implemented over time. The faculties which offered innovative teaching formats with actors as patients (standardized patient interaction) increased, as did the total number of mandatory examinations. The number of faculties that provided compulsory teaching in a condensed manner within a single academic year increased sharply from 3 of 31 responding faculties in 2010 to 19 of 32 responding faculties in 2012. Conclusions: Until now, teaching conditions and structures in palliative medicine in Germany have proven to be extraordinarily heterogeneous. Although professorships ("Chairs") in palliative medicine proved to be particularly beneficial and supportive in curricular and structural development, only a minority of faculties provide leading academic positions in palliative medicine.

Context. The German Hospice and Palliative Care Evaluation (HOPE) is a national, long-term quality assurance project. Every year, German hospice and palliative care institutions document a core data set for their patients for a period of three months. Objectives. To validate the multidimensional symptom and problem checklist (HOPE-SP-CL) of the core data set and report details on reliability and validity. Methods. Data from yearly evaluation periods between 2002 and 2009 were used to calculate construct and convergent validity, internal consistency, test-retest reliability, and documentation discipline and acceptance of the core documentation system. Results. The HOPE-SP-CL includes items on physical, nursing, psychological, and social symptoms and problems. Factor analysis extracted four low to moderately intercorrelating factors with eigenvalues greater than 1.0 explaining 56% of the total variance. Discriminant validity of the HOPE-SP-CL showed good properties in detecting patient groups with different symptom intensities and overall symptom burden using the Eastern Cooperative Oncology Group performance status and primary cancer diagnosis as external validation criteria. The global sum score of the HOPE-SP-CL correlated most closely with the Palliative Outcome Scale staff version (r = 0.750). Internal consistencies ranged between alpha = 0.768-0.801 at three different times of assessment. Test-retest coefficients showed moderate to high correlations at one-week intervals. Conclusion. Analyses of reliability and validity of the HOPE-SP-CL showed satisfactory to good psychometric properties; therefore, the HOPE-SP-CL can be recommended for standard implementation in German hospice and palliative care institutions. J Pain Symptom Manage 2012;43:593-605. (C) 2012 U.S. Cancer Pain Relief Committee. Published by Elsevier Inc. All rights reserved.

The development of a standardised core documentation for palliative care was initiated in Germany in 1996. Results from previous evaluations have shown the wide variability of the documentation in participating units. A different documentation form was used in 2001 using free text entries to find out what problems palliative care specialists perceive in their patients. Fifty-five of the 83 palliative inpatient units in Germany (66% of the units) as well as one unit each from Austria and Switzerland, documented 1304 patients in the core documentation in 2001. Inpatient care was continued until death for 531 patients, 604 patients were discharged home and 169 patients were transferred to other places of care. Palliative care treatment effectively reduced mean physical symptom intensity. Mean intensities of psychological and social problems also were reduced although not as much as physical symptom load. Nursing problems were reduced for those patients discharged but not for those who died in the unit. Anxiety and depression were the most frequent psychological problems. Nursing problems were focussed on impairment of mobility and other activities of daily living such as washing, nutrition and drinking. Excessive distress on caregivers and the organisation of home care were the predominant social problems. In conclusion, this representative prospective survey with the majority of palliative care units in Germany showed the high effectiveness of symptom relief. Using the categories identified in this study, checklists were constructed and included in the documentation forms that are currently used for the core documentation project.