scholarly journals Complex advance care planning interventions for chronic serious illness: how do they work: a scoping review

2021 ◽  
pp. bmjspcare-2021-003310
Author(s):  
Julie Stevens ◽  
Luc Deliens ◽  
Peter Pype ◽  
Aline De Vleminck ◽  
Koen Pardon

ContextAdvance care planning (ACP) interventions have the potential to improve outcomes for patients with chronic serious illness. Yet the rationale for outcome choices and the mechanisms by which outcomes are achieved are not always clear.ObjectivesTo identify and map proposed mechanisms on how complex ACP interventions can impact outcomes for patients with chronic serious illness and to explore factors that might explain intervention outcomes.MethodsThis is a scoping review of randomised controlled trials of complex ACP interventions for patients with chronic serious illness which explicitly stated the mechanism(s) by which the intervention was thought to work. We searched six databases and hand-searched key journals and reference lists.ResultsInclusion yielded 16 articles. Inclusion procedures and mapping of mechanisms and outcomes indicated that causality between components and outcomes was not always clearly described. Tailoring intervention content to patients’ needs was linked to the greatest number of different outcome categories, while promoting competence and confidence to engage in ACP was most often explicitly linked to a primary outcome. Three main factors which might have affected intended outcomes were identified: participant characteristics, such as illness experience or cultural differences; the setting of implementation; or methodological limitations of the study.ConclusionFindings highlighted two main points of consideration for future ACP intervention studies: the need for clearly stated logic in how interventions are expected to impact primary outcomes and the importance of considering how an intervention may function for patients with chronic serious illnesses within a specific setting.

Author(s):  
Phyllis Whitehead ◽  
Erica Frechman ◽  
Marianne Johnstone-Petty ◽  
Jeannette Kates ◽  
Djin L. Tay ◽  
...  

2021 ◽  
pp. bmjspcare-2021-003193
Author(s):  
Sophie Gloeckler ◽  
Tanja Krones ◽  
Nikola Biller-Andorno

Various indicators have been used to evaluate advance care planning, including completion rates, type of care received, and satisfaction. Recent consensus suggests, though, that receiving care consistent with one’s goals is the primary outcome of advance care planning and assessment should capture this metric. Goal concordant care is challenging to measure, and there is little clarity about how best to do so. The aim of this scoping review is to explore what methods have been used to measure goal concordant care in the evaluation of advance care planning. PubMed, Embase, PsycINFO, CINAHL and Cochrane were searched in September 2020 to identify studies that aimed to track whether advance care planning affected the likelihood of patients receiving care that matched their preferred care. 135 original studies were included for review. Studies used retrospective chart review (36%, n=49), questionnaire (36%, n=48) and interview (31%, n=42), focusing on both patients and proxies. Studies considered both actual care received (55%, n=74) and hypothetical scenarios anticipating possible future care (49%, n=66); some studies did both. While the reviewed studies demonstrate the possibility of working towards a solid methodology, there were significant weaknesses. Notably, studies often lacked enough reporting clarity to be reproducible and, relatedly, key concepts, such as end-of-life or preferred care, were left undefined. The recommendations that follow from these findings inform future research approaches, supporting the development of a strong evidence base to guide advance care planning implementation in practice.


2020 ◽  
Vol 29 (13-14) ◽  
pp. 2069-2082
Author(s):  
Anne Kuusisto ◽  
Jenni Santavirta ◽  
Kaija Saranto ◽  
Päivi Korhonen ◽  
Elina Haavisto

2019 ◽  
Vol 28 (3) ◽  
Author(s):  
Evelien R. Spelten ◽  
Olaf Geerse ◽  
Julia Vuuren ◽  
Jennifer Timmis ◽  
Bev Blanch ◽  
...  

2016 ◽  
Vol 15 (1) ◽  
pp. 44-56 ◽  
Author(s):  
Marie Bakitas ◽  
J. Nicholas Dionne-Odom ◽  
Lisa Jackson ◽  
Jennifer Frost ◽  
Margaret F. Bishop ◽  
...  

AbstractObjective:Few decision aids are available for patients with a serious illness who face many treatment and end-of-life decisions. We evaluated the Looking Ahead: Choices for Medical Care When You're Seriously Ill® patient decision aid (PtDA), one component of an early palliative care clinical trial.Method:Our participants included individuals with advanced cancer and their caregivers who had participated in the ENABLE (Educate, Nurture, Advise, Before Life Ends) early palliative care telehealth randomized controlled trial (RCT) conducted in a National Cancer Institute-designated cancer center, a U.S. Department of Veterans Affairs medical center, and affiliated outreach clinics in rural New England. ENABLE included six weekly patient and three weekly family caregiver structured sessions. Participants watched the Looking Ahead PtDA prior to session 3, which covered content on decision making and advance care planning. Nurse coaches employed semistructured interviews to obtain feedback from consecutive patient and caregiver participants approximately one week after viewing the Looking Ahead PtDA program (booklet and DVD).Results:Between April 1, 2011, and October 31, 2012, 57 patients (mean age = 64), 42% of whom had lung and 23% gastrointestinal cancer, and 20 caregivers (mean age = 59), 80% of whom were spouses, completed the PtDA evaluation. Participants reported a high degree of satisfaction with the PtDA format, as well as with its length and clarity. They found the format of using patient interviews “validating.” The key themes were: (1) “the earlier the better” to view the PtDA; (2) feeling empowered, aware of different options, and an urgency to participate in advance care planning.Significance of results:The Looking Ahead PtDA was well received and helped patients with a serious illness realize the importance of prospective decision making in guiding their treatment pathways. We found that this PtDA can help seriously ill patients prior to the end of life to understand and discuss future healthcare decision making. However, systems to routinely provide PtDAs to seriously ill patients are yet not well developed.


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