PURPOSE OF REVIEW: The disease-related burden of patients with hematological malignancies is comparable with patients suffering from solid tumors. Palliative care offers relief from suffering independent of type of disease and prognosis. The prevalence of hematological malignancies is expected to increase in the next 20 years because of better therapeutic options with longer survival and because of the aging population. However, patients with hematological malignancies are underrepresented in palliative care as these diseases are associated with special care needs and prognostic uncertainty, which differ from the unambiguity of terminally ill patients with solid tumors. This review describes the recent studies and guidelines addressing the problems in palliative care for patients with hematological malignancies.
RECENT FINDINGS: Recent research covers prognostic uncertainty, challenges in terms of the acute death setting, and blood transfusions in the terminally ill as well as interdisciplinary collaboration. In addition to qualitative approaches exploring reasons for these challenges, criteria that indicate the approaching end of life in hematological malignancies were systematically developed and tested. Further, the effectiveness of palliative care addressing the hematopoietic stem cell transplantation setting was further analyzed.
SUMMARY: The patients' perspective needs to be involved in future research to examine whether the connotation of 'palliative care' is a barrier for patients, families or healthcare professionals. Communication culture and skills have already been identified as goals for medical training. Further studies should identify the effective elements of palliative care specific for hematological malignancies and develop feasible support models, including informal caregivers.
BACKGROUND: The Surprise Question (SQ) "would I be surprised if this patient were to die in the next 12 months?" has been suggested to help clinicians, and especially General Practitioners (GPs), identify people who might benefit from palliative care. The prognostic accuracy of this approach is unclear and little is known about how GPs use this tool in practice. Are GPs consistent, individually and as a group? Are there international differences in the use of the tool? Does including the alternative Surprise Question ("Would I be surprised if the patient were still alive after 12 months?") alter the response? What is the impact on the treatment plan in response to the SQ? This study aims to address these questions.
METHODS: An online study will be completed by 600 (100 per country) registered GPs. They will be asked to review 20 hypothetical patient vignettes. For each vignette they will be asked to provide a response to the following four questions: (1) the SQ [Yes/No]; (2) the alternative SQ [Yes/No]; (3) the percentage probability of dying [0% no chance - 100% certain death]; and (4) the proposed treatment plan [multiple choice]. A "surprise threshold" for each participant will be calculated by comparing the responses to the SQ with the probability estimates of death. We will use linear regression to explore any differences in thresholds between countries and other clinician-related factors, such as years of experience. We will describe the actions taken by the clinicians and explore the differences between groups. We will also investigate the relationship between the alternative SQ and the other responses. Participants will receive a certificate of completion and the option to receive feedback on their performance.
DISCUSSION: This study explores the extent to which the SQ is consistently used at an individual, group, and national level. The findings of this study will help to understand the clinical value of using the SQ in routine practice.
BACKGROUND: The provision of care for dying cancer patients varies on a global basis. In order to improve care, we need to be able to evaluate the current level of care. One method of assessment is to use the views from the bereaved relatives.
AIM: The aim of this study is to translate and pre-test the 'Care Of the Dying Evaluation' (CODETM) questionnaire across seven participating countries prior to conducting an evaluation of current quality of care.
DESIGN: The three stages were as follows: (1) translation of CODE in keeping with standardised international principles; (2) pre-testing using patient and public involvement and cognitive interviews with bereaved relatives; and (3) utilising a modified nominal group technique to establish a common, core international version of CODE.
SETTING/PARTICIPANTS: Hospital settings: for each country, at least five patient and public involvement representatives, selected by purposive sampling, fed back on CODETM questionnaire; and at least five bereaved relatives to cancer patients undertook cognitive interviews. Feedback was collated and categorised into themes relating to clarity, recall, sensitivity and response options. Structured consensus meeting held to determine content of international CODE (i-CODE) questionnaire.
RESULTS: In total, 48 patient and public involvement representatives and 35 bereaved relatives contributed to the pre-testing stages. No specific question item was recommended for exclusion from CODETM. Revisions to the demographic section were needed to be culturally appropriate.
CONCLUSION: Patient and public involvement and bereaved relatives' perceptions helped enhance the face and content validity of i-CODE. A common, core international questionnaire is now developed with key questions relating to quality of care for the dying.
BACKGROUND: Patient-reported outcome (PRO) measurement is crucial to assess the benefit of psychotherapeutic interventions. Is repeated assessment of psychometric self-report data possible, as inpatient palliative care patients suffer from physical and psychological symptoms? What is the self-perceived strain caused by the assessment? Objective:The main objective of this study was to investigate the feasibility of a repeated comprehensive psychometric self-assessment of inpatient palliative care patients. Secondary objectives were the PROs of the psychometric assessment.
DESIGN: We conducted a prospective cohort study. Patients admitted to our palliative care unit (PCU) were reviewed for eligibility within 72 hours. They were asked for weekly self-reports regarding hope (HHI-D), well-being (FACIT-Sp), anxiety and depression (STADI), and quality of life (QoL; EORTC-QLQ-C-30 single item). The strain caused by the assessment was assessed by a numeric rating scale (0-10) and free comments.
RESULTS: Within 11 months, 219 patients were admitted to the PCU. In total, 92 patients were eligible. The most frequent exclusion criterion was "life expectancy <1 week." A total of 60 patients participated at the first point of measurement. The mean of self-perceived strain (Likert scale 0-10) due to the assessment was 1.44 (SD 1.99) at T1. Twenty-four patients participated twice. Here we found increased scores for physical well-being and QoL.
CONCLUSION: Repeated assessment of psychological conditions is feasible for 27.4% of inpatients at a German PCU. The most limiting factor is life expectancy of only days at admission to the PCU. However, the self-perceived strain is low.