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An examination of home-based end-of-life care for cancer patients: a qualitative study.

ABSTRACT: BACKGROUND:Only a small number of patients have utilized the home-based end-of-life care service in Shanghai that has been offered since 2012. This study explores how home-based end-of-life care is delivered in community health service centers in Shanghai and examines the difficulties in the delivery of the care. METHODS:This was a qualitative study in which data were collected from interviews and analyzed using qualitative content analysis. Nineteen health care providers with experience in delivering home-based end-of-life care in 12 community health service centers were recruited. The interviews were conducted between August 2018 and February 2019. RESULTS:Four themes emerged from the interviews: (i) Patients under home-based end-of-life care: Patients receiving the care were cancer patients with less than 1 year of life expectancy. The criteria for patients were broad. (ii) Service structure: The service was delivered regularly by the physicians and nurses using the approaches of home visits and/or telephone follow-ups. (iii) Service process: The service consisted of multiple components, including monitoring the patient's condition, managing the patient's symptoms, giving daily care instructions, performing nursing procedures, and giving psychological support. However, most of the care focused on monitoring the patients and managing their physical discomfort. (iv) Difficulties in delivering care: Being unable to provide the service and feeling powerless when facing psycho-spiritual problems were the two major difficulties. Three factors contributed to the suspension of the service: The gap between the service and the needs of the patients, a lack of patients, and low work motivation. The demand that the truth be concealed from the families and their attitude of avoiding talking about death were the key factors of the failure of psycho-spiritual care. CONCLUSIONS:Several issues should be addressed before the service can be further developed, including fully understanding the needs and preferences of local patients and their families, securing more financial support and a better supply of drugs, delivering better training for staff, and ensuring greater rewards for individuals and institutions providing the service.

SUBMITTER: Lai XB

PROVIDER: S-EPMC6915891 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature

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An examination of home-based end-of-life care for cancer patients: a qualitative study.

Lai Xiao Bin XB Chen Li Qun LQ Chen Shu Hui SH Xia Hai Ou HO

BMC palliative care 20191216 1

<h4>Background</h4>Only a small number of patients have utilized the home-based end-of-life care service in Shanghai that has been offered since 2012. This study explores how home-based end-of-life care is delivered in community health service centers in Shanghai and examines the difficulties in the delivery of the care.<h4>Methods</h4>This was a qualitative study in which data were collected from interviews and analyzed using qualitative content analysis. Nineteen health care providers with exp ...[more]

PMID: 31843006

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Project description:BackgroundThe policy in a number of countries is to provide people with a terminal illness the choice of dying at home. This policy is supported by surveys indicating that the general public and people with a terminal illness would prefer to receive end-of-life care at home. This is the fourth update of the original review.ObjectivesTo determine if providing home-based end-of-life care reduces the likelihood of dying in hospital and what effect this has on patients' symptoms, quality of life, health service costs, and caregivers, compared with inpatient hospital or hospice care.Search methodsWe searched the following databases until April 2015: Cochrane Central Register of Controlled Trials (CENTRAL) (the Cochrane Library), Ovid MEDLINE(R) (from 1950), EMBASE (from 1980), CINAHL (from 1982), and EconLit (from 1969). We checked the reference lists of potentially relevant articles identified and handsearched palliative care publications, clinical trials registries, and a database of systematic reviews for related trials (PDQ-Evidence 2015).Selection criteriaRandomised controlled trials, interrupted time series, or controlled before and after studies evaluating the effectiveness of home-based end-of-life care with inpatient hospital or hospice care for people aged 18 years and older.Data collection and analysisTwo review authors independently extracted data and assessed study quality. We combined the published data for dichotomous outcomes using fixed-effect Mantel-Haenszel meta-analysis. When combining outcome data was not possible, we reported the results from individual studies.Main resultsWe included four trials in this review and did not identify new studies from the search in April 2015. Home-based end-of-life care increased the likelihood of dying at home compared with usual care (risk ratio (RR) 1.33, 95% confidence interval (CI) 1.14 to 1.55, P = 0.0002; Chi(2) = 1.72, df = 2, P = 0.42, I(2) = 0%; 3 trials; N = 652; high quality evidence). Admission to hospital while receiving home-based end-of-life care varied between trials, and this was reflected by a high level of statistical heterogeneity in this analysis (range RR 0.62 to RR 2.61; 4 trials; N = 823; moderate quality evidence). Home-based end-of-life care may slightly improve patient satisfaction at one-month follow-up and reduce it at six-month follow-up (2 trials; low quality evidence). The effect on caregivers is uncertain (2 trials; low quality evidence). The intervention may slightly reduce healthcare costs (2 trials, low quality evidence). No trial reported costs to patients and caregivers.Authors' conclusionsThe evidence included in this review supports the use of home-based end-of-life care programmes for increasing the number of people who will die at home, although the numbers of people admitted to hospital while receiving end-of-life care should be monitored. Future research should systematically assess the impact of home-based end-of-life care on caregivers.

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.

Dataset Information

An examination of home-based end-of-life care for cancer patients: a qualitative study.

Publications

An examination of home-based end-of-life care for cancer patients: a qualitative study.

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