Randomized controlled trial of the effectiveness of three different oral moisturizers in palliative care patients.

Most patients in palliative care have problems with dry mouth caused by medication or as a direct result of their condition. Dry mouth may cause problems that affect the primary disease negatively and contribute to poorer quality of life in palliative patients. This randomized controlled trial compared the efficacy of three different oral moisturizers: 17% watery solution of glycerol; oxygenated glycerol triester (marketed as Aequasyal in Europe and as Aquoral in the USA); and a newly developed product, Salient. Of the three products, glycerol provided the best relief from xerostomia directly after application, but had no effect after 2 h. By contrast, the effects of Aequasyal and Salient were largely maintained over the same period. The findings for oral discomfort and pain and speech problems showed a similar pattern. Despite its poor effect after 2 h, patients preferred glycerol over Salient and Aequasyal, probably because of the unpleasant taste of Aequasyal and the consistency and mode of application of Salient. Within the limitations of this study, none of the three products tested was found to be clinically completely adequate. However, the glycerol solution was preferred by this group of patients, and its short-lived effect can be compensated for by frequent applications.

Integration of oncology and palliative care: a Lancet Oncology Commission.

Full integration of oncology and palliative care relies on the specific knowledge and skills of two modes of care: the tumour-directed approach, the main focus of which is on treating the disease; and the host-directed approach, which focuses on the patient with the disease. This Commission addresses how to combine these two paradigms to achieve the best outcome of patient care. Randomised clinical trials on integration of oncology and palliative care point to health gains: improved survival and symptom control, less anxiety and depression, reduced use of futile chemotherapy at the end of life, improved family satisfaction and quality of life, and improved use of health-care resources. Early delivery of patient-directed care by specialist palliative care teams alongside tumour-directed treatment promotes patient-centred care. Systematic assessment and use of patient-reported outcomes and active patient involvement in the decisions about cancer care result in better symptom control, improved physical and mental health, and better use of health-care resources. The absence of international agreements on the content and standards of the organisation, education, and research of palliative care in oncology are major barriers to successful integration. Other barriers include the common misconception that palliative care is end-of-life care only, stigmatisation of death and dying, and insufficient infrastructure and funding. The absence of established priorities might also hinder integration more widely. This Commission proposes the use of standardised care pathways and multidisciplinary teams to promote integration of oncology and palliative care, and calls for changes at the system level to coordinate the activities of professionals, and for the development and implementation of new and improved education programmes, with the overall goal of improving patient care. Integration raises new research questions, all of which contribute to improved clinical care. When and how should palliative care be delivered? What is the optimal model for integrated care? What is the biological and clinical effect of living with advanced cancer for years after diagnosis? Successful integration must challenge the dualistic perspective of either the tumour or the host, and instead focus on a merged approach that places the patient's perspective at the centre. To succeed, integration must be anchored by management and policy makers at all levels of health care, followed by adequate resource allocation, a willingness to prioritise goals and needs, and sustained enthusiasm to help generate support for better integration. This integrated model must be reflected in international and national cancer plans, and be followed by developments of new care models, education and research programmes, all of which should be adapted to the specific cultural contexts within which they are situated. Patient-centred care should be an integrated part of oncology care independent of patient prognosis and treatment intention. To achieve this goal it must be based on changes in professional cultures and priorities in health care.

Safety and Effectiveness of Palliative Drug Treatment in the Last Days of Life-A Systematic Literature Review.

CONTEXT: Dying patients commonly experience potentially distressing symptoms. Palliative care guidelines recommend opioids, anticholinergics, antipsychotics, and benzodiazepines for symptom relief. OBJECTIVES: The objective of this study was to systematically review the effectiveness and safety of palliative drug treatment in the last days of life of adult patients, focusing on the management of pain, dyspnea, anxiety, restlessness, and death rattle. METHODS: A systematic search of the literature was published before December 2016 in PubMed/MEDLINE, Embase, CINAHL, PsycINFO, Cochrane, ClinicalTrials.gov, and SveMed+. Studies on safety or effectiveness of drug therapy in dying adults with at least one outcome on symptom control, adverse effects, or survival were included. Data for included studies were extracted. Study quality was assessed using the Effective Public Health Practice Quality assessment tool for quantitative studies. RESULTS: Of the 5940 unique titles identified, 12 studies met the inclusion criteria. Five studies assessed anticholinergics for death rattle, providing no evidence that scopolamine hydrobromide and atropine were superior to placebo. Five studies examined drugs for dyspnea, anxiety, or terminal restlessness, providing some evidence supporting the use of morphine and midazolam. Two studies examined opioids for pain, providing some support for morphine, diamorphine, and fentanyl. Eight studies included safety outcomes, revealing no important differences in adverse effects between the interventions and no evidence for midazolam shortening survival. CONCLUSION: There is a lack of evidence concerning the effectiveness and safety of palliative drug treatment in dying patients, and the reviewed evidence provides limited guidance for clinicians to assist in a distinct and significant phase of life.

The European Association for Palliative Care basic dataset to describe a palliative care cancer population: Results from an international Delphi process.

BACKGROUND: One of the barriers identified in palliative care research is the lack of common criteria to describe the population. AIM: The aim of this Delphi process was to obtain consensus on a basic set of core variables to describe or classify a palliative care cancer population. DESIGN AND SETTING: This was a five-step international Delphi exercise. A total of 117 experts were invited to participate. Based on a literature review and analyses of existing minimum datasets for national databases, a list of 18 proposed variables was presented in the first Delphi round. The two first rounds focused on which variables to include, and several new variables were proposed. The three last Delphi rounds focused on how the agreed variables should be recorded. Consensus was defined as at least 70% agreement. RESULTS: A total of 64 experts from 30 countries participated. High consensus was reached on 31 variables, divided between a 'patient form' - date of birth, gender, living situation, education, ethnicity and 12 symptoms - and a 'health-care personnel form' - patient's date of birth, principal diagnosis, date of the principal diagnosis, stage of the cancer disease, site of metastases, present anticancer treatment, main additional diagnoses, stage of the additional diagnoses, medication, weight loss, performance status, cognitive impairment, place of care and provision of care. It was more difficult to agree upon how to record the variables, but consensus was reached on all except ethnicity, vomiting and weight loss. CONCLUSION: Consensus was reached on a set of core variables and how they should be recorded.

To be involved or not to be involved: a survey of public preferences for self-involvement in decision-making involving mental capacity (competency) within Europe.

BACKGROUND: The Council of Europe has recommended that member states of European Union encourage their citizens to make decisions about their healthcare before they lose capacity to do so. However, it is unclear whether the public wants to make such decisions beforehand. AIM: To examine public preferences for self-involvement in end-of-life care decision-making and identify associated factors. DESIGN: A population-based survey with 9344 adults in England, Belgium, Germany, Italy, the Netherlands, Portugal and Spain. RESULTS: Across countries, 74% preferred self-involvement when capable; 44% preferred self-involvement when incapable through, for example, a living will. Four factors were associated with a preference for self-involvement across capacity and incapacity scenarios, respectively: higher educational attainment ((odds ratio = 1.93-2.77), (odds ratio = 1.33-1.80)); female gender ((odds ratio = 1.27, 95% confidence interval = 1.14-1.41), (odds ratio = 1.30, 95% confidence interval = 1.20-1.42)); younger-middle age ((30-59 years: odds ratio = 1.24-1.40), (50-59 years: odds ratio = 1.23, 95% confidence interval = 1.04-1.46)) and valuing quality over quantity of life or valuing both equally ((odds ratio = 1.49-1.58), (odds ratio = 1.35-1.53)). Those with increased financial hardship (odds ratio = 0.64-0.83) and a preference to die in hospital (not a palliative care unit) (odds ratio = 0.73, 95% confidence interval = 0.60-0.88), a nursing home or residential care (odds ratio = 0.73, 95% confidence interval = 0.54-0.99) were less likely to prefer self-involvement when capable. For the incapacity scenario, single people were more likely to prefer self-involvement (odds ratio = 1.34, 95% confidence interval = 1.18-1.53). CONCLUSIONS: Self-involvement in decision-making is important to the European public. However, a large proportion of the public prefer to not make decisions about their care in advance of incapacity. Financial hardship, educational attainment, age, and preferences regarding quality and quantity of life require further examination; these factors should be considered in relation to policy.

Physical exercise for cancer patients with advanced disease: a randomized controlled trial.

BACKGROUND: Physical exercise can improve cancer patients' functioning and reduce their symptom levels. A randomized, controlled trial was launched to test the hypothesis that physical exercise reduces fatigue and improves physical performance in cancer patients with advanced and incurable disease. METHODS: Cancer patients (n = 231) with a life expectancy ≤2 years were randomized to a physical exercise group (PEG, n = 121) or a control usual care group (UCG, n = 110). The PEG exercised under supervision 60 minutes twice a week for 8 weeks. Assessments were performed before and after the intervention. The primary outcome was physical fatigue (PF) measured by the Fatigue Questionnaire. Physical performance was a secondary outcome measured by the Shuttle Walk Test (SWT) and hand grip strength (HGS) test. Analyses were performed after multiple imputations for missing data. The trial is registered with ClinicalTrials.gov (identifier, NCT00397774). FINDINGS: Thirty-six percent of the PEG were lost to follow-up compared with 23% of the UCG, primarily as a result of disease progression. Seventy-eight PEG and 85 UCG patients completed the intervention. Analyses showed no significant between-group effects in PF. However, clinically and statistically significant between-group effects were found for the SWT and HGS test. INTERPRETATION: Fatigue was not reduced but physical performance (SWT and HGS test) was significantly improved after 8 weeks of physical exercise. Physical exercise might therefore be a suitable approach for maintaining physical capacity in cancer patients with incurable and advanced disease.

Studies comparing Numerical Rating Scales, Verbal Rating Scales, and Visual Analogue Scales for assessment of pain intensity in adults: a systematic literature review.

CONTEXT: The use of unidimensional pain scales such as the Numerical Rating Scale (NRS), Verbal Rating Scale (VRS), or Visual Analogue Scale (VAS) is recommended for assessment of pain intensity (PI). A literature review of studies specifically comparing the NRS, VRS, and/or VAS for unidimensional self-report of PI was performed as part of the work of the European Palliative Care Research Collaborative on pain assessment. OBJECTIVES: To investigate the use and performance of unidimensional pain scales, with specific emphasis on the NRSs. METHODS: A systematic search was performed, including citations through April 2010. All abstracts were evaluated by two persons according to specified criteria. RESULTS: Fifty-four of 239 papers were included. Postoperative PI was most frequently studied; six studies were in cancer. Eight versions of the NRS (NRS-6 to NRS-101) were used in 37 studies; a total of 41 NRSs were tested. Twenty-four different descriptors (15 for the NRSs) were used to anchor the extremes. When compared with the VAS and VRS, NRSs had better compliance in 15 of 19 studies reporting this, and were the recommended tool in 11 studies on the basis of higher compliance rates, better responsiveness and ease of use, and good applicability relative to VAS/VRS. Twenty-nine studies gave no preference. Many studies showed wide distributions of NRS scores within each category of the VRSs. Overall, NRS and VAS scores corresponded, with a few exceptions of systematically higher VAS scores. CONCLUSION: NRSs are applicable for unidimensional assessment of PI in most settings. Whether the variability in anchors and response options directly influences the numerical scores needs to be empirically tested. This will aid in the work toward a consensus-based, standardized measure.