Frank Elsner

Fatigue in palliative care patients — an EAPC approach:

Fatigue is one of the most frequent symptoms in palliative care patients, reported in .80% of cancer patients and in up to 99% of patients following radio- or chemotherapy. Fatigue also plays a major role in palliative care for noncancer patients, with large percentages of patients with HIV, multiple sclerosis, chronic obstructive pulmonary disease or heart failure reporting fatigue.This paper presents the position of an expert working group of the European Association for Palliative Care (EAPC), evaluating the available evidence on diagnosis and treatment of fatigue in palliative care patients and providing the basis for future discussions. As the expert group feels that culture and language influence the approach to fatigue in different European countries, a focus was on cultural issues in the assessment and treatment of fatigue in palliative care. As a working definition, fatigue was defined as a subjective feeling of tiredness, weakness or lack of energy. Qualitative differences between fatigue in cancer patients and in healthy controls have been proposed, but these differences seem to be only an expression of the overwhelming intensity of cancer-related fatigue. The pathophysiology of fatigue in palliative care patients is not fully understood. For a systematic approach, primary fatigue, most probably related to high load of proinflammatory cytokines and secondary fatigue from concurrent syndromes and comorbidities may be differentiated. Fatigue is generally recognized as a multidimensional construct, with a physical and cognitive dimension acknowledged by all authors. As fatigue is an inherent word only in the English and French language, but not in other European languages, screening for fatigue should include questions on weakness as a paraphrase for the physical dimension and on tiredness as a paraphrase for the cognitive dimension. Treatment of fatigue should include causal interventions for secondary fatigue and symptomatic treatment with pharmacological and nonpharmacological interventions. Strong evidence has been accumulated that aerobic exercise will reduce fatigue levels in cancer survivors and patients receiving cancer treatment. In the final stage of life, fatigue may provide protection and shielding from suffering for the patient and thus treatment may be detrimental. Identification of the time point, where treatment of fatigue is no longer indicated is important to alleviate distress at the end of life. Palliative Medicine 2008; 22: 13—22.

A matter of definition – key elements identified in a discourse analysis of definitions of palliative care:

For more than 30 years, the term “palliative care” has been used. From the outset, the term has undergone a series of transformations in its definitions and consequently in its tasks and goals. There remains a lack of consensus on a definition. The aim of this article is to analyse the definitions of palliative care in the specialist literature and to identify the key elements of palliative care using discourse analysis: a qualitative methodology. The literature search focused on definitions of the term ‘palliative medicine’ and ‘palliative care’ in the World Wide Web and medical reference books in English and German. A total of 37 English and 26 German definitions were identified and analysed. Our study confirmed the lack of a consistent meaning concerning the investigated terms, reflecting on-going discussion about the nature of the field among palliative care practitioners. Several common key elements were identified. Four main categories emerged from the discourse analysis of the definition of palliative care: target groups, structure, tasks and expertise. In addition, the theoretical principles and goals of palliative care were discussed and found to be key elements, with relief and prevention of suffering and improvement of quality of life as main goals. The identified key elements can contribute to the definition of the concept ‘palliative care’. Our study confirms the importance of semantic and ethical influences on palliative care that should be considered in future research on semantics in different languages.

A systematic review on the role of fish oil for the treatment of cachexia in advanced cancer: An EPCRC cachexia guidelines project:

Background: The European Palliative Care Research Collaboration is developing clinical guidelines on cachexia in patients with advanced cancer. A systematic review on the use of fish oil/omega-3-fatty acids (n-3-FA)/eicosapentaenoic acids (EPA) in advanced cancer patients suffering from cancer cachexia was performed as part of the guideline development. Methods: The systematic literature search in Medline on the use of fish oil/n-3-FA/EPA identified 244 papers, with 38 publications included in the final evaluation. Some smaller trials, often unrandomized and without a control group, reported a good effect of n-3-FA in patients with advanced cancer and cachexia. However, the results of the larger randomized controlled trials could not support the positive results, as they mostly did not find a significant effect. Results: Adverse effects such as abdominal discomfort, fish belching, fish aftertaste, nausea and diarrhoea were reported with a low incidence. No serious adverse effects were documented, but adverse effects often had an impact on quality of life. This often limited dose escalations or even led to discontinuation of n-3-FA. Conclusion: There is not enough evidence to support a net benefit of n-3-FA in cachexia in advanced cancer. On the other hand, adverse effects were infrequent, with no severe adverse effects. The results from the review led to a weak negative GRADE recommendation.

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

BackgroundMost 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.MethodPPI 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).ResultsSurvival 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.DiscussionThe 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.

Validierung der neuen Fassung des Minimalen Dokumentationssystems (MIDOS2) für Patienten in der Palliativmedizin

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.

Systematic review of the role of alternative application routes for opioid treatment for moderate to severe cancer pain: an EPCRC opioid guidelines project.

The European Palliative Care Research Collaboration is updating the EAPC recommendations on opioids in cancer pain management. A systematic literature search on Medline on the use of alternative routes for opioid application identified 242 papers, with 72 publications included in the final evaluation. Two or more alternative routes of opioid application were compared in 18 papers with a total of 674 patients. The best evidence base was available for the subcutaneous route. A comparison of subcutaneous and intravenous routes found no differences, confirming both routes as feasible, effective and safe. Efficacy and safety of the rectal route was comparable to the parenteral route. The side effect profile seemed to be very similar for the subcutaneous, intravenous, rectal or transdermal routes. Local side effects were reported for rectal application as well as for subcutaneous and transdermal administration. In conclusion, the systematic review found good evidence that subcutaneous administration of morphine or other opioids is an effective alternative for cancer patients if oral treatment is not possible. However, for a number of patients intravenous, rectal or transdermal therapy will offer a good alternative to the subcutaneous route. The review found no significant differences in efficacy or side effects between the alternative application routes.

Outcome assessment instruments in palliative and hospice care—a review of the literature

BackgroundAs different definitions for PC have been used across the last three decades, a common terminology is lacking. To ensure quality of care, (a) a consensus on outcome criteria and indicators and (b) validated and applicable outcome assessment instruments are necessary. The aim of this study is to systematically review instrument for outcome assessment that have been used or proposed for research and clinical practice in palliative care.MethodA systematic literature search in electronic databases Cinahl, MEDLINE, EMBASE, and PsychoINFO until December 2009 was conducted to identify articles describing outcome assessment in palliative care. Following extraction of relevant publications, the outcome assessment instruments were categorized in outcome domains and target groups.ResultsThe literature search resulted in 8,607 hits. Deduplication and exclusion of irrelevant or unavailable publications allowed for 725 publications which were analyzed in detail. At least 528 different outcome assessment instruments were applied. Four target groups were identified: patients, family members, staff members, and the health care system. Fifteen patient domains were identified: quality of life, quality of care, symptoms and problems, performance status, psychological symptoms, decision-making and communication, place of death, stage of disease, mortality and survival, distress and wish to die, spirituality and personality, disease-specific outcomes, clinical features, meaning in life, and needs. The majority of instruments were found only in single cases and a minority of instruments were validated. Validated instruments were used more often.ConclusionsThe wide scope of existing instruments makes consensus on a universal set of instruments for outcome assessment in palliative care improbable. A framework with a set of appropriate instruments could help (1) to harmonize the variety of tools used in research and clinical practice, (2) to allow for more comparability, and (3) to define gaps were tools maybe missing and should be developed.

Validation of the Symptom and Problem Checklist of the German Hospice and Palliative Care Evaluation (HOPE)

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 α=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.

Behandlungsabbruch und Behandlungspflicht am Ende des Lebens

ZusammenfassungDie gesellschaftlichen und medizinischen Entwicklungen der letzten Jahrzehnte haben einen tief greifenden Wertewandel in der Medizin nach sich gezogen, der sich zwischen dem Gebot der Patientenautonomie und der zunehmend problematischeren Entscheidungsfindung in Fragen der medizinischen Behandlung entspannt. Dieser Konflikt spitzt sich in Situationen eingeschränkter Lebenserwartung, rein palliativer Therapieansätze oder fehlender Einwilligungsfähigkeit der Patienten zu. Juristisch und standesrechtlich wurden in den letzten Jahren viele Unklarheiten beseitigt. Einerseits wurde die Patientenautonomie weiter gestärkt, andererseits sieht die Rechtsprechung den Arzt auch in der Pflicht zur überlegten Indikationsstellung einer Therapie angesichts fehlender kurativer Möglichkeiten. Für diesen häufig schwierigen Entscheidungsfindungsprozess ist ein verändertes Verständnis der Arzt-Patienten-Beziehung notwendig. Der Arzt sollte sich nicht auf die Rolle des neutralen Beraters bei medizinischen Entscheidungen zurückziehen und damit dem Patienten die komplette Verantwortung für die medizinische Behandlung überlassen. Vielmehr wird der Patient erst dadurch befähigt, eine autonome, seinen Bedürfnissen angepasste Entscheidung zu treffen, indem sich der behandelnde Arzt mit seiner Fachkenntnis, seiner eigenen Erfahrung und auch persönlichen Meinung in die Beratung einbringt, solange er diese als solche kenntlich macht. Dadurch wird der Patient befähigt, komplexe medizinische Entscheidungen zu treffen, die seine persönliche Situation, seine Erfahrungen und seine Wertvorstellungen berücksichtigen. Darüber hinaus kann es sinnvoll und für den einzelnen Arzt entlastend sein, schwierige Entscheidungen durch Reflexion innerhalb des Behandlerteams oder durch eine externe ethische Beratung zu erleichtern. Algorithmen können die Abfolgen im Entscheidungsprozess veranschaulichen und so die Entscheidungsfindung unterstützen.AbstractSocial developments and medical progress in the last decades have led to a significant change of values in medicine, which spans from the cornerstone of the patient’s autonomy to the increasingly difficult decision-making process related to available medical treatments. This conflict exaggerates with end-of-life situations, where a purely palliative approach to the therapy is applied, or in cases of reduced ability for patient’s consent. From a legal point of view, many uncertainties have been clarified in recent years. The patient’s autonomy has been strengthened, however, the law requires the doctor to review and carefully balance the treatment options so that a new and modified patient-doctor relationship is often necessary in this difficult decision-making process. The doctor should no longer retreat into the classical role of a neutral advisor and leave the complete responsibility of medical decisions to the patient. Instead, in order for the patient to be able to make a balanced and individually tailored autonomous decision, the doctor needs to bring in his medical expertise along with his own personal experiences and personal opinions, as long as he clearly differentiates between personal and professional views. This way the patient will be empowered to make complex medical decisions, considering his personal situation and previous experiences as well as his own set of values. For complex situations medical practitioners can find support from reflection within the treatment team, or through an external ethical advisory panel. Algorithms can be helpful to illustrate the steps in a decision-making process and thus support medical staff in situations of difficult medical decisions.

[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)].

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.