Stephanie Stiel

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.

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.

Assessment of Quality of Life in Patients Receiving Palliative Care: Comparison of Measurement Tools and Single Item on Subjective Well-Being

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

Trends in specialized palliative care for non-cancer patients in Germany--data from the national hospice and palliative care evaluation (HOPE).

INTRODUCTION The proportion of non-cancer patients (NCs) admitted to palliative care (PC) services increases steadily. Nevertheless, little is known not only about their specific problems, needs that have to be met, but also about improvements that have taken place already. This analysis focuses on developments seen in NC management concerning end-of-life care. METHODS The German Hospice and Palliative Care Evaluation (HOPE) is a national long-term quality assurance project providing information on PC patients. Data from yearly evaluation periods between 2007 and 2011 are used to investigate differences between NC patients documented from 2002 to 2005 in symptoms, treatment and general condition. RESULTS The proportion of NC patients increased from 3.5% (147/4182) to 8.1% (558/6854). NC patients, which are now referred to PC services, are younger, show less need for nursing support, die less often during inpatient stay. Overall a greater variety of diagnoses were found and patients suffer from less complex symptoms and problems at admission. CONCLUSIONS Despite the continuously growing number of patients with non-malignant diseases, their number in PC services is still low. As small steps in the right direction have been taken, integrating PC ideas earlier into treatment of chronic diseases to improve quality of life of NCs during the final stages of their diseases will continue to challenge the health care system in terms of workload, need of more staff and further training of medical professionals dealing with NCs in the future.

The desire to hasten death: Using Grounded Theory for a better understanding “When perception of time tends to be a slippery slope”

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.

End-of-life care research with bereaved informal caregivers – analysis of recruitment strategy and participation rate from a multi-centre validation study

BackgroundOne essential element of research is the successful recruitment of participants. However, concerns are obvious regarding the ethical implications of involving terminally ill and even dying patients and their informal caregivers as research participants. This study aims to illustrate central issues encountered when recruiting bereaved informal caregivers for a questionnaire validation study on the quality of dying and death.MethodsBetween July 2012 and November 2013, informal caregivers of deceased inpatients who were treated at two palliative care units in Germany were invited to participate in a questionnaire validation study. Informal caregivers were called by a trained researcher at the end of the fourth week after death at the earliest and by the sixteenth week after death at the latest and asked to participate in a face-to-face interview in their private home.ResultsThe overall participation rate of all eligible informal caregivers was 76.1% (226/297). The mean burden score was 2.5 (NRS from 0 = no burden to 10 = maximum burden; n = 221). Higher burden scores (≥4) were associated with emotional and burdensome memories (n = 34) being invoked throughout the interview. Severe or maximum burden scores (≥7) were stated by 13.2% of participants. The average time between the associated patient’s death and the informal caregiver’s interview was 57.3 days (range 26–176 days, median 49.5 days). 5.3% of all 226 interviews were not completed due to different reasons. Participants’ comments on the way in which the study was conducted gave insight into their motivation to take part in the study and their evaluation of the interview situation.ConclusionsThe recruitment strategy can be recommended to other researchers developing research with bereaved carers. The burden caused by study participation was acceptable to the researchers carrying out this research, although a small group of participants experienced high levels of burden which should be anticipated and appropriate support services offered. Family caregivers are willing to support end-of-life care research, have different motivations for participation and even reported benefits from participation. Nevertheless, study designs have to take into account and ease the potential burden of interviews for caregivers experiencing grief.

Subcutaneous Administration of Drugs in Palliative Care: Results of a Systematic Observational Study

CONTEXT Especially in palliative care, safe and manageable administration of medication is essential. Subcutaneous drug administration is a possible alternative, when oral intake is hampered. However, evidence for this method is rare. OBJECTIVES This observational study assessed the clinical practice of subcutaneous drug administration, focusing on the evaluation of local reactions or complications to further develop recommendations. METHODS Over 14 months, patients in a specialized inpatient palliative care unit treated by the subcutaneous route were invited to participate in this clinical study. All subcutaneous medications including dosage and volume of injection, type of needles, and injection site were documented. The injection sites were systematically assessed including the subjective perceptions of patients for analysis of patient tolerability and acceptability. T-tests and Chi-squared tests of these variables were performed to calculate group differences between needles with vs. without complications (P < 0.05). RESULTS In 120 patients, 3957 applications were administered via 243 needles. The needles were placed in thighs (38.7%) and upper arms (28.8%). Most frequently used medications were hydromorphone (59.0%), haloperidol (12.3%), and midazolam (8.3%). Complications were diagnosed most often on the third or fourth day of the needle in situ and occurred significantly more often in (fully) active patients and patients transferred or discharged at the end of treatment. The mean time of needle in situ was significantly lower (4.1 vs. 5.0 days) in complication cases than in noncomplication cases (t-test: P = 0.027). CONCLUSION The results of this study acknowledge the clinical practice of subcutaneous administration of medication as a very flexible, broadly feasible, rather safe, and nonburdensome method. Nevertheless, this practice is not free from complications, needs appropriate nursing care, and requires standardized policies and procedures.

Effects of Methicillin-Resistant Staphylococcus aureus/Multiresistant Gram-Negative Bacteria Colonization or Infection and Isolation Measures in End of Life on Family Caregivers: Results of a Qualitative Study

BACKGROUND Little is known about the experiences of family caregivers of hospitalized patients with confirmed methicillin-resistant Staphylococcus aureus/multiresistant gram-negative bacteria (MRSA/MRGN) diagnosis at the end of life. The study at hand is a subproject of an interdisciplinary cooperation project that aims at developing a patient-, family-, and team-centered approach in dealing with MRSA/MRGN-positive hospitalized patients in palliative and geriatric care. OBJECTIVES The present study aimed to assess the individual effects of the patients MRSA/MRGN colonization or infection and isolation measures on family caregivers. DESIGN Between April 2014 and September 2015, all known family caregivers associated with an MRSA/MRGN-positive patient from a palliative care unit, a hospital palliative care support team, and a geriatric ward were considered for study participation. A qualitative interview study with family caregivers and an additional focus group was conducted. Data were analyzed using the principles of Grounded Theory. RESULTS Family caregivers (N = 62) raised suggestions regarding the provision of information and communication on the MRSA/MRGN diagnosis and hygiene measures from staff members and the consistency of hygiene procedures. Family caregivers requested not to be stigmatized or being disadvantaged due to the MRSA/MRGN diagnosis of the patient, and they wished to receive psychosocial and emotional support. CONCLUSIONS Staff members and institutional stakeholders should be aware that family caregivers might be burdened and upset by positive MRSA/MRGN diagnosis and the required hygiene measures. The need for detailed and understandable information on MRSA/MRGN, adequate communication between staff members and family caregivers, and support for family caregivers should be of special attention in particular in end-of-life care.

Validation of the German Version of the Quality of Dying and Death Questionnaire for Health Professionals.

Purpose: To validate the Quality of Dying and Death (QoDD) instrument for health professionals (QoDD-D-MA) and to test its feasibility in 2 German palliative care units (PCUs). Methods: The QoDD was translated from English to German and then retranslated following European Organisation for Research and Treatment of Cancer (EORTC) guidelines. Data were collected in 2 German PCUs to calculate aspects of validity and reliability. Results: Mean total score was 83.05 (range 49-100; N = 232). The QoDD-D-MA showed satisfactory psychometric properties, Cronbach α = .830; interrater reliability r = .245 (P < .01). The QoDD-D-MA was independent of patients’ demographic and clinical aspects. Some challenges occurred when applying the instrument. Conclusions: Feasibility could be improved by adapting the QoDD-D-MA to create a self-assessment version and finding a solution for items that result in many missing data. Future research should validate the QoDD-D-MA in other care settings.