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End of Life Care for Patients Dying of Stroke: A Comparative Registry Study of Stroke and Cancer.

ABSTRACT: 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.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.This study is a retrospective, comparative registry study.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.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 end-of-life care and of their family members being offered bereavement follow-up.The results indicate on differences in end-of-life care between patients dying of stroke and those dying from cancer. To improve the end-of-life care in clinical practice and ensure it has consistent quality, irrespective of diagnosis, education and implementation of palliative care principles are necessary.

SUBMITTER: Eriksson H

PROVIDER: S-EPMC4742254 | biostudies-other | 2016

REPOSITORIES: biostudies-other

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Project description:BackgroundFew studies have focused on how older persons living in nursing homes perceive their last period of life. Furthermore, previous research on older persons' perceptions of death and dying is limited. Hence, there is an urgent need to explore their experiences during their final period in life.AimTo explore thoughts about death and dying and experiences of care in end-of-life among older persons living in nursing homes.MethodsThis study employed a qualitative approach including individual interviews with 36 older persons living in Swedish nursing homes. Questions related to quality of life; physical health; thoughts about death, dying, and the future; and experiences related to the living condition and environment were asked. The interview transcripts were analysed through content analysis. The study was approved by the Regional Ethics Review Board (reference number: 2015/4).ResultsThe analysis resulted in the identification of three main thematic categories: The unavoidable and unknown end of life, Thoughts on control and Living your last period of life at a nursing home. The older persons did not fear death itself but had some worries about dying. Spending the last stage of life at a nursing home contributed to different thoughts and feelings among the older persons. With a few exceptions, older persons characterized life at the nursing home as boring and felt they were surrounded by people who did not belong there.ConclusionsThis study indicates a need for older persons to talk about death, dying and end-life issues. Furthermore, this study highlighted that the co-residence of cognitively healthy persons and persons with dementia in the same ward adversely affected cognitively healthy persons. This situation resulted in there being not enough time to both handle the care needs of persons with dementia and have the conversations that cognitively healthy persons desired, such as conversations about thoughts about existence, that could have improved their quality of life.Trial registrationNCT02708498 Date of registration 16 February 2016.

Project description:Background'Most patients want to die at home' is a familiar statement in palliative care. The rate of home deaths is therefore often used as a success criterion. However, providing palliative care and enabling patients to die at home in rural and remote areas may be challenging due to limited health care resources and geographical factors. In this study we explored health care professionals' experiences and reflections on providing palliative care to patients at the end of life in rural Northern Norway.MethodsThis is a qualitative focus group and interview study in rural Northern Norway including 52 health care professionals. Five uni-professional focus group discussions were followed by five interprofessional focus group discussions and six individual interviews. Transcripts were analysed thematically.ResultsHealth care professionals did their utmost to fulfil patients' wishes to die at home. They described pros and cons of providing palliative care in rural communities, especially their dual roles as health care professionals and neighbours, friends or even relatives of patients. Continuity and carers' important contributions were underlined. When home death was considered difficult or impossible, nurses expressed a pragmatic attitude, and the concept of home was extended to include 'home place' in the form of local health care facilities.ConclusionsProviding palliative care in patients' homes is professionally and ethically challenging, and health care professionals' dual roles in rural areas may lead to additional pressure. These factors need to be considered and addressed in discussions of the organization of care. Nurses' pragmatic attitude when transfer to a local health care facility was necessary underlines the importance of building on local knowledge and collaboration. Systematic use of advance care planning may be one way of facilitating discussions between patients, family carers and health care professionals with the aim of achieving mutual understanding of what is feasible in a rural context.

Project description:BackgroundCulture shapes how people understand illness and death, but few studies examine whether acculturation influences patients' end-of-life treatment preferences and medical care.Methods and findingsIn this multi-site, prospective, longitudinal cohort study of terminally-ill cancer patients and their caregivers (n?=?171 dyads), trained interviewers administered the United States Acculturation Scale (USAS). The USAS is a 19-item scale developed to assess the degree of "Americanization" in first generation or non-US born caregivers of terminally-ill cancer patients. We evaluated the internal consistency, concurrent, criterion, and content validity of the USAS. We also examined whether caregivers' USAS scores predicted patients' communication, treatment preferences, and end-of-life medical care in multivariable models that corrected for significant confounding influences (e.g. education, country of origin, English proficiency). The USAS measure was internally consistent (Cronbach ??=?0.98); and significantly associated with US birthplace (r?=?0.66, P<0.0001). USAS scores were predictive of patients' preferences for prognostic information (AOR?=?1.31, 95% CI:1.00-1.72), but not comfort asking physicians' questions about care (AOR 1.23, 95% CI:0.87-1.73). They predicted patients' preferences for feeding tubes (AOR?=?0.68, 95% CI:0.49-0.99) and wish to avoid dying in an intensive care unit (AOR?=?1.36, 95% CI:1.05-1.76). Scores indicating greater acculturation were also associated with increased odds of patient participation in clinical trials (AOR?=?2.20, 95% CI:1.28-3.78), compared with lower USAS scores, and greater odds of patients receiving chemotherapy (AOR?=?1.59, 95% CI:1.20-2.12).ConclusionThe USAS is a reliable and valid measure of "Americanization" associated with advanced cancer patients' end-of-life preferences and care. USAS scores indicating greater caregiver acculturation were associated with increased odds of patient participation in cancer treatment (chemotherapy, clinical trials) compared with lower scores. Future studies should examine the effects of acculturation on end-of-life care to identify patient and provider factors that explain these effects and targets for future interventions to improve care (e.g., by designing more culturally-competent health education materials).

Project description:BackgroundNursing homes are among the most common places of death in many countries.AimTo determine the quality of dying and end-of-life care of nursing home residents in six European countries.DesignEpidemiological survey in a proportionally stratified random sample of nursing homes. We identified all deaths of residents of the preceding 3-month period. Main outcomes: quality of dying in the last week of life (measured using End-of-Life in Dementia Scales - Comfort Assessment while Dying (EOLD-CAD)); quality of end-of-life care in the last month of life (measured using Quality of Dying in Long-Term Care (QoD-LTC) scale). Higher scores indicate better quality.Setting/participantsThree hundred and twenty-two nursing homes in Belgium, Finland, Italy, the Netherlands, Poland and England. Participants were staff (nurses or care assistants) most involved in each resident's care.ResultsStaff returned questionnaires regarding 1384 (81.6%) of 1696 deceased residents. The End-of-Life in Dementia Scales - Comfort Assessment while Dying mean score (95% confidence interval) (theoretical 14-42) ranged from 29.9 (27.6; 32.2) in Italy to 33.9 (31.5; 36.3) in England. The Quality of Dying in Long-Term Care mean score (95% confidence interval) (theoretical 11-55) ranged from 35.0 (31.8; 38.3) in Italy to 44.1 (40.7; 47.4) in England. A higher End-of-Life in Dementia Scales - Comfort Assessment while Dying score was associated with country ( p?=?0.027), older age ( p?=?0.012), length of stay ?1?year ( p?=?0.034), higher functional status ( p?<?0.001). A higher Quality of Dying in Long-Term Care score was associated with country ( p?<?0.001), older age ( p?<?0.001), length of stay ?1?year ( p?<?0.001), higher functional status ( p?=?0.002), absence of dementia ( p?=?0.001), death in nursing home ( p?=?0.033).ConclusionThe quality of dying and quality of end-of-life care in nursing homes in the countries studied are not optimal. This includes countries with high levels of palliative care development in nursing homes such as Belgium, the Netherlands and England.

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End of Life Care for Patients Dying of Stroke: A Comparative Registry Study of Stroke and Cancer.

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