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Exploring the cost-effectiveness of advance care planning (by taking a family carer perspective): findings of an economic modelling study
- Authors:
- BAUER Annette, et al
- Journal article citation:
- Health and Social Care in the Community, 29(4), 2021, pp.967-981.
- Publisher:
- Wiley
Advance care planning is considered an important part of high-quality end-of-life care. Its cost-effectiveness is currently unknown. In this study, we explore the cost-effectiveness of a strategy, in which advance care planning is offered systematically to older people at the end-of-life compared with standard care. We conducted decision-analytic modelling. The perspective was health and social care and the time horizon was 1 year. Outcomes included were quality-adjusted life years as they referred to the surviving carers. Data sources included published studies, national statistics and expert views. Average total cost in the advance care planning versus standard care group was £3,739 versus £3,069. The quality-adjusted life year gain to carers was 0.03 for the intervention in comparison with the standard care group. Based on carer's health-related quality-of-life, the average cost per quality-adjusted life year was £18,965. The probability that the intervention was cost-effective was 55% (70%) at a cost per quality-adjusted life year threshold of £20,000 (£30,000). Conducting cost-effectiveness analysis for advance care planning is challenging due to uncertainties in practice and research, such as a lack of agreement on how advance care planning should be provided and by whom (which influences its costs), and about relevant beneficiary groups (which influences its outcomes). However, even when assuming relatively high costs for the delivery of advance care planning and only one beneficiary group, namely, family carers, our analysis showed that advance care planning was probably cost-effective. (Edited publisher abstract)
What is the evidence for the activities of Namaste Care? A rapid assessment review
- Authors:
- BRAY Jennifer, BROOKER Dawn J., GARABEDIAN Claire
- Journal article citation:
- Dementia: the International Journal of Social Research and Practice, 20(1), 2021, pp.247-272.
- Publisher:
- Sage
Objectives: To assess the quality of research evidence for the different activity components for the psycho-social Namaste Care intervention for care home residents with advanced dementia. DesignNamaste Care is a multi-component intervention delivered on a daily basis to people living with advanced dementia or people at end of life with dementia. A significant part of its operationalisation within care homes is the delivery of a number of activities delivered by trained in-house Namaste Care workers to a group of residents with similar high dependency needs. The Namaste Care workers focus on touch, music, nature, sensory experience, aromas and interactions with objects delivered in a way to enhance feelings of enjoyment and wellbeing. This review evaluated the evidence for using these activities with people living with advanced dementia. A systematic search of peer-reviewed research articles was conducted between November 2016 and September 2018 using search terms of activities used in Namaste Care. The quality of each accepted article was rated using the Rapid Evidence Assessment scale. Results: The initial literature search returned 1341 results: 127 articles including 42 reviews were included. The majority of activity interventions yielded between 10 and 20 peer-reviewed papers. The use of smells and aromas, interacting with animals and dolls, the use of various forms of music (e.g. background music, singing, personalised music), nature, lighting, various forms of touch/massage and sensory interventions (including Snoezelen) all appear to have proven efficacy with people living with advanced dementia. Conclusions: There is generally a limited number of research papers and reviews in this area, but overall there is a good evidence base for including these activities within Namaste Care for people living with advanced dementia. (Edited publisher abstract)
Social work intervention in end of life care
- Authors:
- STANLEY Selwyn, SELWYN Sheeba
- Journal article citation:
- Indian Journal of Social Work, 68(3), July 2007, pp.335-352.
- Publisher:
- Tata Institute of Social Sciences
This article examines several areas of end of life care. It then provides a theoretical framework for social workers involved with dying patients and discusses how social work intervention in end of life care can be executed with greater professional skill.
Social work end-of-life care interventions for patients and their families in hospital
- Authors:
- MOON Felicity, MCDERMOTT Fiona
- Journal article citation:
- Australian Social Work, 74(3), 2021, pp.276-293.
- Publisher:
- Taylor and Francis
As the majority of Australians receive end-of-life care in hospitals, there is a need to examine the quality of social work interventions for dying patients and their families. Clinical data mining of 347 deceased patient’s files revealed different approaches to end-of-life interventions across one health network. Data demonstrate that although social workers are invaluable in providing emotional and practical assistance, greater awareness and education around evidence-based psychosocial bereavement risk and support may improve family support. Further development of theoretical and practical knowledge examining the interface between physical aspects of end-of-life care and social work intervention is warranted. (Edited publisher abstract)
The role of the social worker at the end of life: paving the way in an academic hospital quality improvement initiative
- Authors:
- STILOS Kalliopi (Kalli), TAKAHASHI Danielle, NOLEN Amy Eleanor
- Journal article citation:
- British Journal of Social Work, 51(1), 2021, pp.246-258.
- Publisher:
- Oxford University Press
The end-of-life (EOL) experience of patients dying in acute care has been highlighted as an area for quality improvement. Delivering comprehensive care to these patients involves addressing physical symptoms and psychosocial concerns. The social work role offers a range of interventions to address the common domains of EOL care. We report on results of an EOL survey evaluating satisfaction with social work interventions for imminently dying patients in acute care. This article is the first phase towards gaining an understanding of the contributions of the social worker in supporting dying patients and their families within our organisation. (Edited publisher abstract)
A systematic review of nursing home palliative care interventions: characteristics and outcomes
- Authors:
- CARPENTER Joan G, et al
- Journal article citation:
- Journal of the American Medical Directors Association, 21(5), 2020, pp.P583-596.E2.
- Publisher:
- Elsevier (for the American Medical Directors Association)
Background: Despite recommendations to integrate palliative care into nursing home care, little is known about the most effective ways to meet this goal. Objective: To examine the characteristics and effectiveness of nursing home interventions that incorporated multiple palliative care domains (eg, physical aspects of care—symptom management, and ethical aspects—advance care planning). Design: Systematic review. Methods: This study searched MEDLINE via PubMed, Embase, CINAHL, and Cochrane Library's CENTRAL from inception through January 2019. This study included all randomized and nonrandomized trials that compared palliative care to usual care and an active comparator. This study assessed the type of intervention, outcomes, and the risk of bias. Results: The researchers screened 1167 records for eligibility and included 13 articles. Most interventions focused on staff education and training strategies and on implementing a palliative care team. Many interventions integrated advance care planning initiatives into the intervention. This study found that palliative care interventions in nursing homes may enhance palliative care practices, including processes to assess and manage pain and symptoms. However, inconsistent outcomes and high or unclear risk of bias among most studies requires results to be interpreted with caution. Conclusions and Implications: Heterogeneity in methodology, findings, and study bias within the existing literature revealed limited evidence for nursing home palliative care interventions. Findings from a small group of diverse clinical trials suggest that interventions enhanced nursing home palliative care and improved symptom assessment and management processes. (Edited publisher abstract)
Supporting good quality, community-based end-of-life care for people living with dementia: the SEED research programme including feasibility RCT
- Authors:
- ROBINSON L., et al
- Journal article citation:
- Programme Grants for Applied Research, 8(6), 2020, Online only
- Publisher:
- National Institute for Health Research
- Place of publication:
- Southampton
Background: In the UK, most people with dementia die in the community and they often receive poorer end-of-life care than people with cancer. Objective: The overall aim of this programme was to support professionals to deliver good-quality, community-based care towards, and at, the end of life for people living with dementia and their families. Design: The Supporting Excellence in End-of-life care in Dementia (SEED) programme comprised six interlinked workstreams. Workstream 1 examined existing guidance and outcome measures using systematic reviews, identified good practice through a national e-survey and explored outcomes of end-of-life care valued by people with dementia and family carers (n = 57) using a Q-sort study. Workstream 2 explored good-quality end-of-life care in dementia from the perspectives of a range of stakeholders using qualitative methods (119 interviews, 12 focus groups and 256 observation hours). Using data from workstreams 1 and 2, workstream 3 used co-design methods with key stakeholders to develop the SEED intervention. Worksteam 4 was a pilot study of the SEED intervention with an embedded process evaluation. Using a cluster design, this study assessed the feasibility and acceptability of recruitment and retention, outcome measures and the intervention. Four general practices were recruited in North East England: two were allocated to the intervention and two provided usual care. Patient recruitment was via general practitioner dementia registers. Outcome data were collected at baseline, 4, 8 and 12 months. Workstream 5 involved economic modelling studies that assessed the potential value of the SEED intervention using a contingent valuation survey of the general public (n = 1002). These data informed an economic decision model to explore how the SEED intervention might influence care. Results of the model were presented in terms of the costs and consequences (e.g. hospitalisations) and, using the contingent valuation data, a cost–benefit analysis. Workstream 6 examined commissioning of end-of-life care in dementia through a narrative review of policy and practice literature, combined with indepth interviews with a national sample of service commissioners (n = 20). Setting: The workstream 1 survey and workstream 2 included services throughout England. The workstream 1 Q-sort study and workstream 4 pilot trial took place in North East England. For workstream 4, four general practices were recruited; two received the intervention and two provided usual care. Results: Currently, dementia care and end-of-life care are commissioned separately, with commissioners receiving little formal guidance and training. Examples of good practice rely on non-recurrent funding and leadership from an interested clinician. Seven key components are required for good end-of-life care in dementia: timely planning discussions, recognising end of life and providing supportive care, co-ordinating care, effective working with primary care, managing hospitalisation, continuing care after death, and valuing staff and ongoing learning. Using co-design methods and the theory of change, the seven components were operationalised as a primary care-based, dementia nurse specialist intervention, with a care resource kit to help the dementia nurse specialist improve the knowledge of family and professional carers. The SEED intervention proved feasible and acceptable to all stakeholders, and being located in the general practice was considered beneficial. None of the outcome measures was suitable as the primary outcome for a future trial. The contingent valuation showed that the SEED intervention was valued, with a wider package of care valued more than selected features in isolation. The SEED intervention is unlikely to reduce costs, but this may be offset by the value placed on the SEED intervention by the general public. Limitations: The biggest challenge to the successful delivery and completion of this research programme was translating the ‘theoretical’ complex intervention into practice in an ever-changing policy and service landscape at national and local levels. A major limitation for a future trial is the lack of a valid and relevant primary outcome measure to evaluate the effectiveness of a complex intervention that influences outcomes for both individuals and systems. Conclusions: Although the dementia nurse specialist intervention was acceptable, feasible and integrated well with existing care, it is unlikely to reduce costs of care; however, it was highly valued by all stakeholders (professionals, people with dementia and their families) and has the potential to influence outcomes at both an individual and a systems level. Future work: There is no plan to progress to a full randomised controlled trial of the SEED intervention in its current form. In view of new National Institute for Health and Care Excellence dementia guidance, which now recommends a care co-ordinator for all people with dementia, the feasibility of providing the SEED intervention throughout the illness trajectory should be explored. Appropriate outcome measures to evaluate the effectiveness of such a complex intervention are needed urgently. (Edited publisher abstract)
Stepwise psychosocial palliative care: a new approach to the treatment of posttraumatic stress disorder at the end of life
- Author:
- FELDMAN David B.
- Journal article citation:
- Journal of Social Work in End-of-Life and Palliative Care, 13(2-3), 2017, pp.113-133.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia
Although evidence-based therapies for Posttraumatic Stress Disorder (PTSD) exist for physically healthy populations, these often do not adequately address PTSD in dying patients. Particularly because these interventions require 8–16 weekly sessions, and the median stay in U.S. hospices is 17.5 days (National Hospice and Palliative Care Organization [NHPCO], 2015), there is a potentially serious timing mismatch. Moreover, these treatments may temporarily increase trauma symptoms (Nishith, Resick, & Griffin, 2002), resulting in some patients dying in greater distress than had they not received care. The Stepwise Psychosocial Palliative Care (SPPC) model presented in this article compensates for these difficulties by embracing a palliative care approach to PTSD. Although it utilises techniques drawn from existing PTSD interventions, these are re-ordered and utilised in a time-responsive, patient-centred manner that takes into account prognosis, fatigue, and logistical concerns. The SPPC approach is further considered with respect to existing social work palliative care competencies (Gwyther et al., 2005) and a case study is used to demonstrate its application. (Edited publisher abstract)
What is the evidence for conducting palliative care family meetings? A systematic review
- Authors:
- CAHILL Philippa J., et al
- Journal article citation:
- Palliative Medicine, 31(3), 2017, pp.197-211.
- Publisher:
- Hodder Arnold
Background: Structured family meeting procedures and guidelines suggest that these forums enhance family–patient–team communication in the palliative care inpatient setting. However, the vulnerability of palliative patients and the resources required to implement family meetings in accordance with recommended guidelines make better understanding about the effectiveness of this type of intervention an important priority. Aim and design: This systematic review examines the evidence supporting family meetings as a strategy to address the needs of palliative patients and their families. The review conforms to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement. Data sources: Six medical and psychosocial databases and “CareSearch,” a palliative care–specific database, were used to identify studies reporting empirical data, published in English in peer-reviewed journals from 1980 to March 2015. Book chapters, expert opinion, and gray literature were excluded. The Cochrane Collaboration Tool assessed risk of bias. Results: Of the 5051 articles identified, 13 met the inclusion criteria: 10 quantitative and 3 qualitative studies. There was low-level evidence to support family meetings. Only two quantitative pre- and post-studies used a validated palliative care family outcome measure with both studies reporting significant results post-family meetings. Four other quantitative studies reported significant results using non-validated measures. Conclusion: Despite the existence of consensus-based family meeting guidelines, there is a paucity of evidence to support family meetings in the inpatient palliative care setting. Further research using more robust designs, validated outcome measures, and an economic analysis are required to build the family meeting evidence before they are routinely adopted into clinical practice. (Publisher abstract)
Advance care planning, palliative care, and end-of-life care interventions for homeless people: a systematic review
- Authors:
- SUMALINOG Rafael, et al
- Journal article citation:
- Palliative Medicine, 31(2), 2017, pp.109-119.
- Publisher:
- Hodder Arnold
Aim: To summarize and evaluate the evidence surrounding advance care planning, palliative care, and end-of-life care interventions for homeless persons. Design: A systematic review based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses statement. Data sources: Articles from MEDLINE, EMBASE, CINAHL, PsycINFO, Social Work Abstracts, Cochrane Library, Web of Science, and PubMed databases were searched through 13 June 2015. Peer-reviewed studies that implemented advance care planning, palliative care, and end-of-life care interventions for homeless populations were included. Data from studies were independently extracted by two investigators using pre-specified criteria, and quality was assessed using modified Cochrane and Critical Appraisal Skills Programme tools. Results: Six articles met inclusion criteria. Two studies were randomized controlled trials involving advance directive completion. Two cohort studies investigated the costs of a shelter-based palliative care intervention and predictors for completing advance directives. These studies were rated low to fair quality. Two qualitative studies explored the interface between harm-reduction services and end-of-life care and the conditions for providing palliative care for homeless persons in a support home. Conclusion: The effectiveness of advance care planning, palliative care, and end-of-life care interventions for homeless individuals is uncertain. High-quality studies of interventions that reflect the unique and complex circumstances of homeless populations and investigate patient-related outcomes, caregiver burden, and cost-effectiveness are needed. (Edited publisher abstract)