Improving outpatient advance care planning for adults with congenital or pediatric heart disease followed in a pediatric heart failure and transplant clinic

2018 ◽  
Vol 13 (3) ◽  
pp. 362-368 ◽  
Author(s):  
Lindsay A. Edwards ◽  
Christine Bui ◽  
Antonio G. Cabrera ◽  
Jill Ann Jarrell
Author(s):  
Karen Detering ◽  
Elizabeth Sutton ◽  
Scott Fraser

People are living longer lives with a greater burden of disease. Diseases which contribute significantly to this burden are chronic kidney disease; chronic obstructive pulmonary disease and heart failure. Technologies exist that can sustain life for patients with these disease, however patients and their families/loved ones need to know the likely outcome of their disease, its course, and all management options. Advance care planning (ACP) can assist with this process as well as ensuring that patients, families, and health care teams are aware of what treatment a patient wants—or does not want. ACP also enables the appointment of a decision maker to act on behalf of the patient should they lose capacity to make medical decisions. This chapter discusses the benefits of ACP and why it needs to be introduced early in the course of any life-limiting illness.


2019 ◽  
Vol 35 (3) ◽  
pp. 874-884 ◽  
Author(s):  
Markus Schichtel ◽  
Bee Wee ◽  
Rafael Perera ◽  
Igho Onakpoya

Abstract Background Advance care planning is widely advocated to improve outcomes in end-of-life care for patients suffering from heart failure. But until now, there has been no systematic evaluation of the impact of advance care planning (ACP) on clinical outcomes. Our aim was to determine the effect of ACP in heart failure through a meta-analysis of randomized controlled trials (RCTs). Methods We searched CINAHL, Cochrane Central Register of Controlled Trials, Database of Systematic Reviews, Embase, ERIC, Ovid MEDLINE, Science Citation Index and PsycINFO (inception to July 2018). We selected RCTs including adult patients with heart failure treated in a hospital, hospice or community setting. Three reviewers independently screened studies, extracted data, assessed the risk of bias (Cochrane risk of bias tool) and evaluated the quality of evidence (GRADE tool) and analysed interventions according to the Template for Intervention Description and Replication (TIDieR). We calculated standardized mean differences (SMD) in random effects models for pooled effects using the generic inverse variance method. Results Fourteen RCTs including 2924 participants met all of the inclusion criteria. There was a moderate effect in favour of ACP for quality of life (SMD, 0.38; 95% CI [0.09 to 0.68]), patients’ satisfaction with end-of-life care (SMD, 0.39; 95% CI [0.14 to 0.64]) and the quality of end-of-life communication (SMD, 0.29; 95% CI [0.17 to 0.42]) for patients suffering from heart failure. ACP seemed most effective if it was introduced at significant milestones in a patient’s disease trajectory, included family members, involved follow-up appointments and considered ethnic preferences. Several sensitivity analyses confirmed the statistically significant direction of effect. Heterogeneity was mainly due to different study settings, length of follow-up periods and compositions of ACP. Conclusions ACP improved quality of life, patient satisfaction with end-of-life care and the quality of end-of-life communication for patients suffering from heart failure and could be most effective when the right timing, follow-up and involvement of important others was considered.


2021 ◽  
Author(s):  
Hiroki Kitakata ◽  
Takashi Kohno ◽  
Shun Kohsaka ◽  
Daisuke Fujisawa ◽  
Naomi Nakano ◽  
...  

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