What Do People Want at the End-of-Life? A Mixed Methods Study on Older People's Preferences and Knowledge about Advanced Care Plans

Author(s):  
Stine Hanson
2018 ◽  
Vol 188 (2) ◽  
pp. 633-639 ◽  
Author(s):  
Hannah Linane ◽  
Fergal Connolly ◽  
Lyle McVicker ◽  
Sharon Beatty ◽  
Orla Mongan ◽  
...  

2020 ◽  
Author(s):  
Alyson Takaoka ◽  
Benjamin Tam ◽  
Meredith Vanstone ◽  
France J. Clarke ◽  
Neala Hoad ◽  
...  

Abstract Background: Scaling-up and sustaining healthcare interventions can be challenging. Our objective was to describe how the 3 Wishes Project (3WP), a personalized end-of-life intervention, was scaled-up and sustained in an intensive care unit (ICU).Methods: In a longitudinal mixed-methods study from January 1,2013 - December 31, 2018, dying patients and families were invited to participate if the probability of patient death was >95% or after a decision to withdraw life support. A research team member or bedside clinician learned more about each of the patients and their family, then elicited and implemented <3 personalized wishes for patients and/or family members. We used a qualitative descriptive approach to analyze interviews and focus groups conducted with 25 clinicians who cared for patients enrolled in the project. We used descriptive statistics to summarize patient, wish, and clinician characteristics, and analyzed outcome data in quarters using Statistical Process Control charts. The primary outcome was enrollment of terminally ill patients and respective families; the secondary outcome was the number of wishes per patient; tertiary outcomes included wish features and stakeholder involvement. Results: Both qualitative and quantitative analyses suggested a three-phase approach to the scale-up of this intervention during which 369 dying patients were enrolled, having 2039 terminal wishes implemented. From a research project to clinical program to an approach to practice, we documented a three-fold increase in enrolment with a five-fold increase in total wishes implemented, without a change in cost. Beginning as a study, the protocol provided structure; starting gradually enabled frontline staff to experience and recognize the value of acts of compassion for patients, families, and clinicians. The transition to a clinical program was marked by handover from the research staff to bedside staff, whereby project catalysts mentored project champions to create staff partnerships, and family engagement became more intentional. The final transition involved empowering staff to integrate the program as an approach to care, expanding it within and beyond the organization. Conclusions: The 3WP is an end-of-life intervention which was implemented as a study, scaled-up into a clinical program, and sustained by becoming integrated into practice as an approach to care.


BMJ Open ◽  
2016 ◽  
Vol 6 (12) ◽  
pp. e013554 ◽  
Author(s):  
Zoe M Gotts ◽  
Nicole Baur ◽  
Emma McLellan ◽  
Claire Goodman ◽  
Louise Robinson ◽  
...  

2018 ◽  
Vol 10 (3) ◽  
pp. e26-e26 ◽  
Author(s):  
Paul Taylor ◽  
Miriam J Johnson ◽  
Dawn Wendy Dowding

ObjectivesTo improve the ability of clinical staff to recognise end of life in hospital inpatients dying as a result of cancer and heart failure, and to generate new hypotheses for further research.MethodsThis mixed-methods study used decision theory as a theoretical basis. It involved a parallel databases-convergent design, incorporating findings from previously published research, with equal priority to study groups and synthesis by triangulation. The individual arms were (1) a retrospective cohort study of 102 patients with cancer and 81 patients with heart failure in an acute trust in the North of England, and(2) a semistructured interview study of 19 healthcare professionals caring for the same patient groups.ResultsThe synthesis of findings demonstrated areas of agreement, partial agreement, silence and dissonance when comparing the cohort findings with the interview findings. Trajectories of change are identified as associated with poor prognosis in both approaches, but based on different parameters. Management of patients has a significant impact on decision-making. The decision process requires repeated, iterative assessments and may benefit from a multidisciplinary approach. Uncertainty is a defining characteristic of the overall process, and objective parameters only have a limited role in predicting end of life.ConclusionsThe role of uncertainty is important as a trigger for discussions and a defined stage in a patient’s illness journey. This is consistent with current approaches to recognising irreversible deterioration in those with serious illness. This study contributes ongoing evidence that these concepts are vital for decision-making.


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