End-of-life care needs of people dying from Stroke in Australia, New Zealand and Singapore: a space for palliative care (original) (raw)
Related papers
End of Life Care for Patients Dying of Stroke: A Comparative Registry Study of Stroke and Cancer
PLOS ONE, 2016
Background Although stroke is a significant public health challenge and the need for palliative care has been emphasized for these patients, there is limited data on end-of-life care for patients dying from stroke. Objective To study the end-of-life care during the last week of life for patients who had died of stroke in terms of registered symptom, symptom management, and communication, in comparison with patients who had died of cancer. Design This study is a retrospective, comparative registry study. Methods A retrospective comparative registry study was performed using data from a Swedish national quality register for end-of-life care based on WHO`s definition of Palliative care. Data from 1626 patients who had died of stroke were compared with data from 1626 patients who had died of cancer. Binary logistic analyses were used to calculate odds ratios, with 95% CI. Results Compared to patients who was dying of cancer, the patients who was dying of stroke had a significantly higher prevalence of having death rattles registered, but a significantly lower prevalence of, nausea, confusion, dyspnea, anxiety, and pain. In addition, the stroke group had significantly lower odds ratios for health care staff not to know whether all these six symptoms were present or not. Patients who was dying of stroke had significantly lower odds ratio of having informative communication from a physician about the transition to endof-life care and of their family members being offered bereavement follow-up.
Reflection on stroke deaths and end-of-life stroke care
Internal Medicine Journal, 2017
Background: The benefit of palliative care referral for severe stroke patients on end-of-life care pathways (EOLCP) is increasingly recognised. Palliative care provides assistance with symptom management and transition to end-of-life care. Advance care planning (ACP) may help accommodate patient/family expectations and guide management. Method: Retrospective study of all stroke deaths (2014-2015) at Liverpool Hospital, Sydney, Australia. Data examined included age, co-morbidities, living arrangements, pre-existing ACP, palliative care referral rates and 'survival time'. Results: 123 patient (mean age=76±13 years) deaths were identified from 1067 stroke admissions (11.5% mortality). 64 (52%) patients had ischaemic stroke and 59 (48%) intracerebral haemorrhage (ICH). 40% suffered a prior stroke and 43% required a carer at home or were in an Aged Care facility. Survival time from admission was significantly longer in patients with ischaemic stroke compared to ICH (median [IQR] 9.5 [18] versus 2 [4] days, p <0.001). Only 2 patients had pre-existing ACP. 44% of This article is protected by copyright. All rights reserved. Accepted Article patients were referred to palliative care and 41% were commenced on dedicated EOLCP. Palliative care referral was less likely in patients who died under neurosurgery. EOLCP were significantly less likely to be commenced in patients who underwent acute intervention or were not referred to palliative care. Conclusion: In this cohort, palliative care referral and EOLCP were commenced in less than 50% of patients, highlighting significant variations in clinical care. These data support the need to promote awareness of ACP, particularly in patients with prior stroke or significant co-morbidities. This may help reduce potentially futile invasive investigations and treatment. Accepted Article emphasise the importance of access to palliative care services for patients whose stroke adversely affects quality of life or reduces life expectancy. 7,8 Specialist palliative care offers additional support to patients, families and primary care health professionals in Advance Care Planning (ACP), 9 transition from life prolongation to comfort-only care and bereavement. 10 In-hospital palliative care support is not universally accessible 11 and EOLCP play an important role in helping and/or guiding non-palliative care clinicians in the management of 'uncomplicated' end-of-life care. The aims of this study were to review stroke deaths in a large tertiary referral hospital and examine the frequency of pre-existing ACP as well as associations between palliative care referral rates, commencement of EOLCP, stroke type and survival time from admission. Methods This is a retrospective study of all acute stroke patients who died in Liverpool Hospital, Sydney, between January 2014 and December 2015. The study was conducted following approval of South Western Sydney Local Health District Human Research Ethics Committee. Liverpool Hospital is a tertiary referral hospital in Southwest Sydney which serves a population of more than 870,000, 49% of whom speak a language other than English at home. 12 The hospital has a 30-bed neurology/stroke ward, 30-bed acute neurosurgical ward and offers 24-hour endovascular clot retrieval and acute neurosurgical intervention services. The palliative medicine service has a 20-bed ward and comprises an inpatient team and consultation team that provide 24-hour advice to other specialties. Liverpool Hospital protocol is to admit all acute ischaemic stroke patients under the neurology service and all acute intracerebral haemorrhage
End of life after stroke: A nationwide study of 42,502 deaths occurring within a year after stroke
European Stroke Journal
Introduction In the scientific literature, there is very limited empirical information on end-of-life issues after stroke in the scientific literature. The present nationwide study describes the circumstances surrounding deaths that occur within a year after a stroke. Patients and methods Datasets from three nationwide Swedish registers (on stroke, palliative care and cause of death) were linked. Basic information was available for 42,502 unselected cases of death that occurred within a year after a stroke and more detailed information was available for 16,408 deaths. Odds ratios for characteristics of end-of-life care were calculated by logistic regression. Results In the late phase after stroke (three months to one year), 46% of patients died in a nursing home, whereas 37% of patients died in a hospital after readmission and 10% of patients died at home. Eleven per cent of deaths were reported as being unexpected. A next of kin was present at 49% of deaths. The frequency of unatte...
European Journal of Cardiovascular Nursing
Aims Internationally, there is an urgent need to implement guidelines supporting integration of palliative care into stroke clinical practice. Despite considerable advances in acute stroke management, ∼20% of all acute stroke patients die within the first 30 days. Palliative care is well established in diseases such as cancer or advanced heart failure, but evidence-based interventions of high quality are limited in stroke populations. This systematic review aims to identify and evaluate quantitative studies that describe palliative care interventions and end-of-life care as reported by patient’s post-stroke and their families. Methods and results A systematic review following Preferred Reporting Items for Systematic Reviews and Meta-analyses guidelines was conducted in Cumulative Index to Nursing and Allied Health Literature, PubMed, Cochrane, Embase, Ovid, Proquest, and Scopus from 1990 to April 2021. The National Heart, Lung and Blood Institute standardized quality rating tools fo...
Palliative care after stroke: A review
International Journal of Stroke, 2021
Background: Palliative care is an integral aspect of stroke unit care. In 2016, the American Stroke Association published a policy statement on palliative care and stroke. Since then there has been an expansion in the literature on palliative care and stroke. Aim: Our aim was to narratively review research on palliative care and stroke, published since 2015. Results: The literature fell into three broad categories: (a) scope and scale of palliative care needs, (b) organization of palliative care for stroke, and (c) shared decision making. Most literature was observational. There was a lack of evidence about interventions that address specific palliative symptoms or improve shared decision making. Racial disparities exist in access to palliative care after stroke. There was a dearth of literature from low-and middle-income countries. Conclusion: We recommend further research, especially in low-and middle-income countries, including research to explore why racial disparities in access to palliative care exist. Randomized trials are needed to address specific palliative care needs after stroke and to understand how best to facilitate shared decision making.
uct.academia.edu, 2016
This research study explores the need for palliative care by the patients who are recovering from stroke after an acute event. Stroke survivors need comprehensive care for their physical, psychosocial, spiritual well-being and additional support. The comprehensive total care in all aspect of physical, social and spiritual well-being can only be offered by the holistic approach of palliative care focusing, as it does, on the rehabilitation for stroke survivors to improve their quality of life. A literature review was conducted to investigate how palliative care can help to change the quality of life for stroke survivors. There has been little research on the topic of providing palliative care to stroke patients in South Africa. This research study explores the need and understanding of palliative care management for a stroke survival. This research work is a cross sectional study using mixed methods-both quantitative and qualitative-interviewing patients, and family members of patients, who had suffered from a cerebrovascular accident. Stroke patients admitted to medical wards, and who had attended the MOPD (Medical Outpatient Department) at Ladysmith Regional Hospital over 4-month period from the month of April to July 2013, and the members from family who were involved in their care at home.
CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne, 2018
Case fatality after total anterior circulation stroke is high. Our objective was to describe the experiences and needs of patients and caregivers, and to explore whether, and how, palliative care should be integrated into stroke care. From 3 stroke services in Scotland, we recruited a purposive sample of people with total anterior circulation stroke, and conducted serial, qualitative interviews with them and their informal and professional caregivers at 6 weeks, 6 months and 1 year. Interviews were transcribed for thematic and narrative analysis. The Palliative Care Outcome Scale, EuroQol-5D-5L and Caregiver Strain Index questionnaires were completed after interviews. We also conducted a data linkage study of all patients with anterior circulation stroke admitted to the 3 services over 6 months, which included case fatality, place of death and readmissions. Data linkage (= 219) showed that 57% of patients with total anterior circulation stroke died within 6 months. The questionnaire...
Palliative and End-of-Life Care After Severe Stroke
Journal of Pain and Symptom Management, 2022
Background and Objectives. The distinct illness trajectory after acute ischemic stroke demands a better understanding of the utilization of palliative care consultations (PCC) for this patient cohort. This study sought to determine the prevalence, predictors, and outcomes associated with PCC for patients hospitalized with severe ischemic stroke. Methods. This multicenter cohort study was conducted at four hospitals (2 comprehensive and 2 primary stroke centers) between January, 2016 and December, 2019. We included all patients with a discharge diagnosis of ischemic stroke and an initial National Institutes of Health Stroke Scale (NIHSS) of 10 or greater. We compared patient sociodemographic, clinical and care characteristics as well as hospital outcomes between patients who did and did not receive PCC. Results. The study included 1297 patients hospitalized with severe ischemic stroke. PCC occurred for 20% of all patients and this proportion varied across institutions from 11.9% to 43%. Less than half (43%) of patients who died in the hospital. In multivaraible analysis, PCC was less likely in female patients (OR .76, 95% CI .59, .99, P=0.04) but more likely in patients with higher NIHSS (OR1.95, 95% CI 1,13, 3.37, P=0.02). Patients with PCC had higher rates of moving to a plan focused on comfort measures (CMO) (P<0.01) and removal of artificial nutrition as part of a move to CMO (P<0.01). In a sub analysis of patients who died in the hospital and received PCC, patients who died on or before hospital day 3 were less likely to receive PCC than patients who died on or after hospital day 4 (24% v. 51%) (P=<0.01). Conclusions. Most patients with severe stroke do not receive PCC, even among those who experience in-hospital death. The results of this study indicate there are missed opportunities for PCC to help reduce suffering after severe stroke.
Health & social care in …, 2008
Stroke is the third leading cause of death in the UK. Despite this, little is known about the care needs of people who die from or following a stroke. In early 2003, a total of 183 questionnaires were returned from a survey of 493 people who had registered a stroke-related death in four Primary Care Trusts, giving a response rate of 37%. This paper reports on 53 deceased from the survey who had lived at home during their last 3 months and who had been ill for more than 1 month. The data were analysed to explore the role of informal carers and the provision of community-based care in the last 3 months of life. Family and friends helped 82% of deceased with household tasks, 68% with personal care, 66% with taking medication and 54% with night-time care. By contrast, health and social services helped 30% with household tasks, 54% with personal care, 20% with taking medication and 6% with night-time care. Two-fifths (43%) of informants had to give up work or make major life changes to care for the deceased, and 26% of informants found looking after them 'rewarding'. Half (51%) reported that help and support from health services were excellent or good compared to 38% for social services. Results from the Regional Study of Care for the Dying indicated that people who died from a stroke in 1990 and their informal carers would have benefited from increased levels of community-based care and enhanced communication with care professionals. Our data suggest that informal carers continue to provide the majority of care for those who die from stroke, despite government initiatives to improve care for stroke patients and frail elderly people. Further research is required to explore best practice and service provision in caring for this group.
End-of-life decisions in acute stroke patients: an observational cohort study
BMC palliative care, 2016
Crucial issues of modern stroke care include best practice end-of-life-decision (EOLD)-making procedures and the provision of high-quality palliative care for dying stroke patients. We retrospectively analyzed records of those patients who died over a 4-year period (2011-2014) on our Stroke Unit concerning EOLD, focusing on the factors that most probably guided decisions to induce limitation of life-sustaining therapy and subsequently end-of-life-care procedures thereafter. Of all patients treated at our Stroke Unit, 120 (2.71%) died. In 101 (86.3%), a do-not-resuscitate-order (DNRO) was made during early treatment. A decision to withdraw/withhold further life supportive therapy was made in 40 patients (34.2%) after a mean of 5.0 days (range 0-29). Overall patient death occurred after a mean time of 7.0 days (range 1-30) and 2.6 days after therapy restrictions. Disturbance of consciousness at presentation, dysphagia on day 1 and large supratentorial stroke were possible indicators o...