Development of an international Core Outcome Set (COS) for best care for the dying person: study protocol.

BACKGROUND: In contrast to typical measures employed to assess outcomes in healthcare such as mortality or recovery rates, it is difficult to define which specific outcomes of care are the most important in caring for dying individuals. Despite a variety of tools employed to assess different dimensions of palliative care, there is no consensus on a set of core outcomes to be measured in the last days of life. In order to optimise decision making in clinical practice and comparability of interventional studies, we aim to identify and propose a set of core outcomes for the care of the dying person. METHODS: Following the COMET initiative approach, the proposed study will proceed through four stages to develop a set of core outcomes: In stage 1, a systematic review of the literature will identify outcomes measured in existing peer reviewed literature, as well as outcomes derived through qualitative studies. Grey literature, will also be included. Stage 2 will allow for the identification and determination of patient and proxy defined outcomes of care at the end of life via quantitative and qualitative methods at an international level. In stage 3, from a list of salient outcomes identified through stages 1 and 2, international experts, family members, patients, and patient advocates will be asked to score the importance of the preselected outcomes through a Delphi process. Stage 4 consists of a face-to-face consensus meeting of international experts and patient/family representatives in order to define, endorse, and propose the final Core Outcomes Set. DISCUSSION: Core Outcome Sets aim at promoting uniform assessment of care outcomes in clinical practice as well as research. If consistently employed, a robust set of core outcomes for the end of life, and specifically for the dying phase, defined by relevant stakeholders, can ultimately be translated into best care for the dying person. Patient care will be improved by allowing clinicians to choose effective and meaningful treatments, and research impact will be improved by employing internationally agreed clinically relevant endpoints and enabling accurate comparison between studies in systematic reviews and/or in meta-analyses.

[Frequency of symptoms and drug treatment among dying patients in the last 24 hours of life at Landspitali - The National University Hospital of Iceland and in nursing homes].

INTRODUCTION: The purpose of this study was to evaluate the frequency of 5 common symptoms and drug treatments prescribed and given in the last 24 hours of life in 11 medical units at Landspitali National University Hospital of Iceland (LUH) and in 7 nursing homes (NH). MATERIAL AND METHODS: Data was collected retrospectively from 232 charts of patients who died in 2012, using documentation in the Liverpool Care Pathway (LCP) and the medication management system. RESULTS: About half of the patients died at LUH with similar gender ratio but 70% of patients in NH were women. The LCP was used for 50% of all deaths at LUH and 58% in NH. In 45% of all deaths LCP was used for 24 hours or less. The most common symptoms were pain (51%), agitation (36%) and respiratory tract secretions (36%). Frequency of symptoms was similar between institutions and age groups. Cancer patients had significantly higher incidence of agitation and were prescribed and given higher doses of morphine compared to other groups. Regular medication for agitation was haloperidol (45%), diazepam (40%) and midazolam (5%). Close to 70% of the patients were treated with a scopolamin patch for death rattle. CONCLUSION: A large number of patients have symptoms in the last 24 hours of life both in hospital and in nursing homes. Symptom control can be improved by adjusting morphine doses to patients need, using regular doses of benzodiazepine for agitation and better use of anticholinergic medication for death rattle. Key words: symptoms, medication, dying patients, last 24 hours of life, hospital, nursing homes. Correspondence: Svandis Iris Halfdanardottir, svaniris@landspitali.is.

Family members of cancer patients: Needs, quality of life and symptoms of anxiety and depression.

BACKGROUND: Family members of cancer patient's have multiple needs, many of which are not adequately met. Unmet needs may affect psychological distress and quality of life (QOL). The purpose of this study was to assess needs and unmet needs, QOL, symptoms of anxiety and depression, and the relationship between those variables in a large sample of family members of cancer patients in different phases of illness. MATERIAL AND METHODS: Of 332 family members invited to participate, 330 accepted and 223 (67%) completed a cross-sectional, descriptive study. Data was collected with the Family Inventory of Needs (FIN), Quality of Life Scale (QOLS) and the Hospital Anxiety and Depression Scale (HADS). RESULTS: Of 20 needs assessed the mean (SD) number of important needs and unmet needs was 16.4 ± 4.3 and 6.2 ± 5.6, respectively. Twelve important needs were unmet in 40-56% of the sample. The mean number of unmet needs was significantly higher among women than men, other relatives than spouses, younger family members, those currently working and those of patients with metastatic cancer. QOL was similar to what has been reported for healthy populations and cancer caregivers in advanced stages. The prevalence of symptoms of anxiety and depression was high (20-40%). Anxiety scores were higher among women than men and both anxiety and depression scores were highest during years 1-5 compared to the first year and more than five years post diagnosis. There was a positive relationship between number of important needs and QOL, and between needs met and QOL. Additionally, there was a significant relationship between anxiety and unmet needs. Finally, there was a significant relationship between QOL and symptoms of anxiety and depression. CONCLUSION: The results support the importance of screening needs and psychological distress among family members of cancer patients in all phases of illness.