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      Who cares for the carers at hospital discharge at the end of life? A qualitative study of current practice in discharge planning and the potential value of using The Carer Support Needs Assessment Tool (CSNAT) Approach

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          Abstract

          Background:

          Carer factors prevent patients achieving timely and appropriate hospital discharge. There is a lack of research into interventions to support carers at hospital discharge.

          Aim:

          To explore whether and how family carers are currently supported during patient discharge at end of life; to assess perceived benefits, acceptability and feasibility of using The Carer Support Needs Assessment Tool (CSNAT) Approach in the hospital setting to support carers.

          Design:

          Qualitative.

          Setting/participants:

          Three National Health Service Trusts in England: focus groups with 40 hospital and community-based practitioners and 22 carer interviews about experiences of carer support during hospital discharge and views of The CSNAT Approach. Two workshops brought together 14 practitioners and five carers to discuss implementation issues. Framework analysis was conducted.

          Results:

          Current barriers to supporting carers at hospital discharge were an organisational focus on patients’ needs, what practitioners perceived as carers’ often ‘unrealistic expectations’ of end-of-life caregiving at home and lack of awareness of patients’ end-of-life situation. The CSNAT Approach was viewed as enabling carer support and addressing difficulties of discussing the realities of supporting someone at home towards end of life. Implementation in hospital required organisational considerations of practitioner workload and training. To enhance carer support, a two-stage process of assessment and support (hospital with community follow-up) was suggested using the CSNAT as a carer-held record to manage the transition.

          Conclusion:

          This study identifies a novel intervention, which expands the focus of discharge planning to include assessment of carers’ support needs at transition, potentially preventing breakdown of care at home and patient readmissions to hospital.

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          Most cited references 18

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          The Carer Support Needs Assessment Tool (CSNAT) for use in palliative and end-of-life care at home: a validation study.

          Family carers need to be supported in their central role of caring for patients at the end of life, but brief practical tools to assess their support needs have been missing. To address this gap, we developed a brief evidence-based Carer Support Needs Assessment Tool (CSNAT) suitable for everyday practice.
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            Place of death and access to home care services: are certain patient groups at a disadvantage?

            Research indicates that fewer people are able to die at home than would wish to do so. Furthermore the ability to die at home is unequally distributed depending on patient characteristics. Unless factors associated with home deaths are identified and interventions are targeted accordingly, further general improvements in care support may only help those already at an advantage. This paper reviews research investigating the relation between patient characteristics and home deaths and considers whether these variables influence place of death because they are associated with differential access to services, focusing on access to palliative home care. Patients with informal carer support were both more likely to die at home and to access palliative home care. Provision of home care did not remove the dependence on informal carers in achieving home death, however. An important target in improving home death rates is therefore better support for informal carers overall. Older patients were both less likely to die at home and to access home care. Once in home care they no longer were less likely to die at home. Although age related needs require consideration, improved access to home care is therefore likely to increase home deaths for older people. Women were less likely to die at home than men, yet younger women may be more likely to access home care. There is some evidence to suggest that men were less efficient as carers, which may help explain why women were less likely to achieve home deaths, while making their referral to home care more likely. While home care may help redress the gender imbalance, men may also need to be encouraged and enabled to take on the carer role. Cancer patients in higher socioeconomic groups were both more likely to die at home and to access home care. Hence home deaths may increase by improving access for lower socioeconomic groups to the services available.
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              Can this patient be discharged home? Factors associated with at-home death among patients with cancer.

              The purpose of this study was to identify factors associated with at-home death among patients with advanced cancer and create a decision-making model for discharging patients from an acute-care hospital. We conducted an observational cohort study to identify the association between place of death and the clinical and demographic characteristics of patients with advanced cancer who received care from a palliative home care team (PHCT) and of their primary caregivers. We used logistic regression analysis to identify the predictors of at-home death. We identified 380 patients who met the study inclusion criteria; of these, 245 patients (64%) died at home, 72 (19%) died in an acute-care hospital, 60 (16%) died in a palliative care unit, and three (1%) died in a nursing home. Median follow-up was 48 days. We included the 16 variables that were significant in univariate analysis in our decision-making model. Five variables predictive of at-home death were retained in the multivariate analysis: caregiver's preferred place of death, patients' preferred place of death, caregiver's perceived social support, number of hospital admission days, and number of PHCT visits. A subsequent reduced model including only those variables that were known at the time of discharge (caregivers' preferred place of death, patients' preferred place of death, and caregivers' perceived social support) had a sensitivity of 96% and a specificity of 81% in predicting place of death. Asking a few simple patient- and family-centered questions may help to inform the decision regarding the best place for end-of-life care and death.
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                Author and article information

                Journal
                Palliat Med
                Palliat Med
                PMJ
                sppmj
                Palliative Medicine
                SAGE Publications (Sage UK: London, England )
                0269-2163
                1477-030X
                28 February 2018
                May 2018
                : 32
                : 5
                : 939-949
                Affiliations
                [1 ]Centre for Family Research, University of Cambridge, Cambridge, UK
                [2 ]Centre for Primary Care, Institute of Population Health, The University of Manchester, Manchester, UK
                [3 ]Division of Nursing, Midwifery and Social Work, The University of Manchester, Manchester, UK
                Author notes
                Gail Ewing, Centre for Family Research, University of Cambridge, Free School Lane, Cambridge CB2 3RQ, UK. Email: ge200@ 123456cam.ac.uk
                Article
                10.1177_0269216318756259
                10.1177/0269216318756259
                5946661
                29490198
                © The Author(s) 2018

                This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License ( http://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

                Funding
                Funded by: Marie Curie Cancer Care, FundRef https://doi.org/10.13039/501100000654;
                Award ID: Award Reference: C9257/A17071
                Categories
                Original Articles

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