scholarly journals Determining the Impact of COVID-19 on End-of-Life Experiences of Family Caregivers for People Living With Dementia

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 321-321
Author(s):  
Sameer Mithani ◽  
Gwen McGhan ◽  
Deirdre McCaughey ◽  
Kristin Flemons
Keyword(s):  
Public Health ◽  
Focus Group ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Care Planning ◽  
Advanced Care Planning ◽  
Life Care ◽  
The Impact

Abstract COVID-19 has impacted all of our lives, but the population most at risk are older adults. Family caregivers (FCGs) for people living with dementia (PLWD) face challenges in providing care, which are compounded with the introduction of COVID-19 public health policies. The purpose of this study was to examine the experiences of FCGs where the PLWD died during the COVID-19 pandemic. FCGs were invited to participate in an online survey to examine their caregiving experiences during the COVID-19 pandemic, with the option of participating in a follow-up focus group. Sixteen FCGs whose family members with dementia died during the pandemic participated in the survey. A follow-up focus group was conducted to further examine how COVID-19 policies impacted their role as a caregiver in long-term care (LTC) and affected their ability to grieve. The results of the survey and focus group suggest that a lack of role clarity and inadequate communication channels between the FCG and LTC due to COVID-19 increased the strain FCGs faced during end-of-life care. At the end of life, public policies, such as reduced or no visitation, led to feelings of inadequacy and regret. Several participants also expressed appreciation for completing Advanced Care Planning documentation prior to COVID-19. Based on these results, policymakers can help ease the increased turmoil faced by FCGs during end-of-life care in future public health emergencies by involving FCGs of PLWD in the decision-making process. The completion of Advanced Care Planning documentation can also ease the burden FCGs may experience during end-of-life care.

scholarly journals The Effect of Advance Care Planning on Heart Failure: a Systematic Review and Meta-analysis

2019 ◽  
Vol 35 (3) ◽  
pp. 874-884 ◽  
Author(s):  
Markus Schichtel ◽  
Bee Wee ◽  
Rafael Perera ◽  
Igho Onakpoya
Keyword(s):  
Heart Failure ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Meta Analysis ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

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.

The impact of existential vulnerability for nursing home doctors in end-of-life care: A focus group study

2016 ◽  
Vol 99 (12) ◽  
pp. 2043-2048 ◽  
Author(s):  
Kristian Jansen ◽  
Sabine Ruths ◽  
Kirsti Malterud ◽  
Margrethe Aase Schaufel
Keyword(s):  
Nursing Home ◽  
Focus Group ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Focus Group Study ◽  
The Impact

scholarly journals Relating to the end of life through advance care planning: Expectations and experiences of people with dementia and their family caregivers

Dementia ◽  
2022 ◽  
pp. 147130122110663
Author(s):  
Natashe Lemos Dekker ◽  
Sascha R Bolt
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Fine Tuning ◽  
Care Planning ◽  
Life Care ◽  
People With Dementia ◽  
Advance Care ◽  
Life Care Planning

Background Dementia is widely considered a progressive condition associated with changes in cognitive capacities, which promotes the idea that people with dementia need to anticipate end-of-life care preferences. There is a growing body of interventions meant to support advance care planning (ACP) for people with dementia and their families. However, a deeper understanding of their experiences and expectations regarding planning the end of life is needed to inform ethically sound and person-centered ACP. This study explores how end-of-life care planning for people with dementia is experienced and perceived in practice. Methods We conducted a secondary analysis of qualitative data from in-depth interviews and ethnographic fieldwork. Participants included people with dementia living in the community or in nursing homes, family caregivers, and professional caregivers. During reflective sessions, the researchers moved back and forth between their original data and overarching topics related to ACP. Both performed deductive coding to filter relevant information from their data. Ongoing discussions allowed for the fine-tuning of themes. Results End-of-life care planning for people with dementia can encompass a paradox of control. While it may foster a sense of being in control, it may also feel like relinquishing control over future situations. It raises concerns regarding responsibility, as present, former and future wishes may not align. Family caregivers are often responsible for concrete end-of-life decision-making, prompting them to weigh previous wishes against present situations. Further, people with dementia may wish to focus on the present and distance themselves from the future. Discussion Advance decisions about end-of-life care are often decontextualized and people may find it difficult to oversee their future conditions and preferences. The widely recognized purpose of ACP to exert control over end-of-life care may need revision to match the needs of people with dementia while they are coping with their condition and an uncertain future.

Improving code status documentation as a marker of advanced care planning at an outpatient academic cancer center: A pilot project.

2013 ◽  
Vol 31 (31_suppl) ◽  
pp. 38-38 ◽  
Author(s):  
Anjana Ranganathan ◽  
James J. Sauerbaum ◽  
Katie Green ◽  
Heather Sheaffer ◽  
Mary Coniglio ◽  
...  
Keyword(s):  
Pilot Study ◽  
End Of Life ◽  
End Of Life Care ◽  
Pilot Project ◽  
Cancer Center ◽  
Care Planning ◽  
Advanced Care Planning ◽  
Life Care ◽  
Code Status ◽  
Group A

38 Background: Advanced care planning can significantly impact the quality of end of life care. Readily accessible documentation of goals of care for patients (pts) known to have a high morbidity and mortality provides a concrete means for practitioners to discuss and guide advanced care planning. We previously reported a surprisingly small proportion of established pts in our oncology clinic with a documented code status (CS), and undertook a pilot project aimed at improving this rate. Methods: Query of the outpatient electronic medical record (EMR) at the Abramson Cancer Center for established pts revealed an average of 2% with a documented CS. Our pilot study focused on 8 providers in thoracic and gastrointestinal oncology. We established provider agreement on the importance of CS documentation, and analyzed the mechanisms in place for documentation. We educated providers on the method of documentation, raised visibility and importance of advanced directives, implemented a system of normalizing conversations for all new pts, reported weekly to providers on upcoming established pts without documentation and provided monthly report cards, indicating provider rates within the pilot group. Results: Prior to intervention, a median of 499-established pts per month were seen by our pilot group. A median of 50 pts (10%) had a documented CS with documentation rates by provider ranging from 0 – 91%. 5 of 8 providers had no established pts with a documented CS. After intervention, a median of 494-established pts per month were seen by the same group. A median of 197 pts (40%) (p < 0.05) had a documented CS with provider rates ranging from 26 – 94%. All providers had documented a CS on at least some of their established pts; improvements ranged from an increase of 0 to 26%, to an increase of 1 to 43%. Conclusions: Previously, at our institution, only a small minority of established patients with an oncologic diagnosis had documentation of CS in the readily available EMR. Our pilot study resulted in a statistically significant increase in the documentation rates for all providers over a 2-month period. We have yet to analyze the clinical significance of this, with attention to quality and cost of end of life care.

Prescribing in end-of-life care

2019 ◽  
Vol 1 (6) ◽  
pp. 284-288
Author(s):  
Amanda Armstrong
Keyword(s):  
End Of Life ◽  
Health Professionals ◽  
End Of Life Care ◽  
Care Planning ◽  
Advanced Care Planning ◽  
Life Care ◽  
Limiting Condition

End-of-life care aims to support a person in the last stages of a life-limiting condition to live as well as possible until they die. Prescribing at the end-of-life presents many challenges. Advanced care planning can be carried out so that health professionals are aware and supportive of the patient's and their family's wishes. This article discusses the care and management of patients as they receive care at the end of their life as well as any anticipatory medication that may be needed.

Promotion of Advance Care Planning Among Young Adults: A Pilot Study of Health Engagement Workshop Feasibility, Implementation, and Efficacy

2020 ◽  
pp. 104990912095116
Author(s):  
Philip Barrison ◽  
Lindy Grief Davidson
Keyword(s):  
Young Adults ◽  
Pilot Study ◽  
End Of Life ◽  
Advance Care Planning ◽  
Mixed Method ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Advance Care ◽  
The Impact

Objective: This pilot study set out to evaluate the feasibility and efficacy of an interactive, peer-led, health engagement workshop to improve confidence and comprehension related to advance care planning (ACP) among young adults. Secondarily, this study evaluated if such workshops could promote ACP related behavior changes within this population. Methods: This observational cohort study utilized a repeated measures, mixed-method design. Six hour-long, in-person workshops were conducted with undergraduate students during meetings of university student organizations. Participants were evaluated across 3 mixed-method surveys, evaluating confidence, knowledge, and behaviors related to ACP prior to participation, directly after, and during a 2-week follow-up. Results: Workshop participation improved the average participant confidence and knowledge related to ACP as well as encouraged some participants to engage in discussions related to end-of-life care with friends and family. Alongside the impact of the workshops on knowledge and confidence, participants positively evaluated the design of the workshops through collected qualitative feedback. Conclusion: These results are encouraging in assessing this population’s willingness to learn about end-of-life care planning. The tools developed and the corresponding results should be used for further exploration of engaging the young adult population in ACP to promote improved healthcare outcomes.

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