scholarly journals Perspectives of people with dementia and carers on advance care planning and end-of-life care: A systematic review and thematic synthesis of qualitative studies

2018 ◽  
Vol 33 (3) ◽  
pp. 274-290 ◽  
Author(s):  
Marcus Sellars ◽  
Olivia Chung ◽  
Linda Nolte ◽  
Allison Tong ◽  
Dimity Pond ◽  
...  
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Qualitative Studies ◽  
Care Planning ◽  
Life Care ◽  
Thematic Synthesis ◽  
People With Dementia ◽  
Advance Care

13 Exploring patient safety incidents arising from advance care planning for end of life patients: a mixed methods analysis of incident reports

2018 ◽  
Vol 8 (3) ◽  
pp. 364.2-365 ◽  
Author(s):  
Toby Dinnen ◽  
Huw Williams ◽  
Simon Noble ◽  
Adrian Edwards ◽  
Joyce Kenkre ◽  
...  
Keyword(s):  
Systematic Review ◽  
Patient Safety ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Advance Care ◽  
Incident Reports ◽  
Patient Safety Incidents

IntroductionAdvance Care Planning (ACP) is an important component of patient centred end-of-life care (Houben et al. 2014; Brinkman-Stoppelenburg et al. 2014). However there is little evidence available on the safety of the process and its impact on quality of care.AimTo characterise the nature of patient safety incidents arising around the ACP process for patients approaching end-of-life.MethodThe National Reporting and Learning System (NRLS) collates patient safety incident reports across England and Wales. We performed a keyword search and manual review to identify relevant reports between 2005 and 2015. A mixed methods process combining structured data coding and exploratory descriptive analysis was undertaken to describe incidents underlying causes and outcomes. A thematic analysis identified areas on which to focus improvement initiatives.ResultsWe identified 67 incident reports in which patients experienced inadequate care due to issues with implementation of ACP. The most common source of error was (mis)communication of ACP (n=27) where documentation was lost or verbal handover was inaccurate. Over one third of reports (n=24) described an ACP not being followed. In the remaining reports (n=16) an ACP was not completed despite being appropriate. The most common contributory factor was inadequate staff knowledge (n=18). Common outcomes were cardiopulmonary resuscitation attempts contrary to a patient’s wishes (n=18). Other outcomes included inappropriate treatment or transfer/admission.ConclusionOur national level analysis identifies key priorities which should be explored in local contexts: specifically improving public and staff understanding and engagement with ACP and developing systems for recording and accessing ACP documentation across healthcare services.References. Brinkman-Stoppelenburg A, Rietjens JA, Van Der Heide A. The effects of advance care planning on end-of-life care: A systematic review. Palliative Medicine2014;28:1000–25.. Houben CH, Spruit MA, Groenen MT, Wouters EF, Janssen DJ. Efficacy of advance care planning: A systematic review and meta-analysis. Journal of the American Medical Directors Association2014;15:477–89.

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.

Advance care planning and people with dementia

2018 ◽  
Author(s):  
Karen Harrison Dening
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Diagnostic Process ◽  
Clear Understanding ◽  
Care Planning ◽  
Life Care ◽  
People With Dementia ◽  
Advance Care ◽  
Person With Dementia

Advance care planning (ACP) is widely recognised as a process to enable an individual’s preferences and wishes for palliative and end-of-life care to be recognized at a time when they no longer have the capacity to make such ‘real time’ and autonomous decisions. In dementia, it is essential that ACP be offered early in the diagnostic process and supported when the person still has the ability to do so. Often decisions about end-of-life care for a person with dementia are made in the later stages of the illness, at a point of transition or crisis and with the absence of a clear understanding of their wishes. Clinicians may then turn to family members in the assumption that they know what these would be, however, this is often not the case which can add undue pressure to families in distressing circumstances.

scholarly journals End of Life Care: A Scoping Review of Experiences of Advance Care Planning for People with Dementia

Dementia ◽  
2016 ◽  
Vol 18 (3) ◽  
pp. 825-845 ◽  
Author(s):  
Kerry Jones ◽  
Giles Birchley ◽  
Richard Huxtable ◽  
Linda Clare ◽  
Tony Walter ◽  
...  
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
Scoping Review ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
People With Dementia ◽  
Advance Care

scholarly journals 142 Advance Care Planning in Patients with Dementia: An Audit on End of Life Care in Hospital Deaths

2019 ◽  
Vol 48 (Supplement_3) ◽  
pp. iii1-iii16
Author(s):  
Rachel Sullivan ◽  
Clodagh Power ◽  
Elaine Greene ◽  
Roisin Purcell
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Hospital Inpatient ◽  
Care Planning ◽  
Life Care ◽  
People With Dementia ◽  
Future Care ◽  
Advance Care ◽  
Resuscitation Status

Abstract Background End of life care (EOLC) planning is a difficult and often neglected area in dementia. Advanced care discussions play an important role in the planning of future care for patients with dementia. The NICE guidelines recommend that patients with dementia should be given every opportunity to discuss their wishes and preferences regarding their future care. The goal of our study was to explore the extent of EOLC planning in patients with dementia who died in hospital. Methods Patients with dementia who died in a large tertiary referral hospital in 2017 were identified via the Hospital Inpatient Enquiry (HIPE) database. A retrospective chart review was completed examining the documentation of Advance Care Planning (ACP) and discussions around end of life care. Charleston Comorbidity Index (CCI) was used to predict 1 year mortality. Results HIPE identified 49 patients with dementia who died in hospital. The average age was 84 and 53% were female. The commonest cause of death was respiratory (79.5%). Two thirds lived at home and 30% were nursing home residents. The mean CCI was 3.97 indicating 52% 1-year mortality, however only 34% were hospitalized in the last year. Only 14% had an ACP. Only 22% had resuscitation status recorded on admission. The majority had resuscitation status documented 15 days prior to death. In these cases 70% had clearly documented the discussion with family or patient and 84% documented ceilings of care 6 days prior to death. Palliative care were involved in 40% of cases. Two patients did not have resuscitation status documented prior to death and 3 received CPR. Conclusion Our study highlights the urgent need to facilitate conversations around end-of-life care with people with dementia. Advance care planning reduces the use of burdensome treatments, ensures dignity and comfort is prioritized enabling patients to live well until they die.

scholarly journals End of Life Care and Advance Care Planning for People with Dementia: A Pilot Simulation Course for Healthcare Professionals

2022 ◽  
Vol 62 ◽  
pp. 20-24
Author(s):  
Chun-Kit Chu ◽  
Aleks Saunders ◽  
Sandra Parish ◽  
Nykki Hetherton ◽  
Sean Cross ◽  
...  
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Care Planning ◽  
Life Care ◽  
People With Dementia ◽  
Advance Care

The effects of advance care planning on end-of-life care: A systematic review

2014 ◽  
Vol 28 (8) ◽  
pp. 1000-1025 ◽  
Author(s):  
Arianne Brinkman-Stoppelenburg ◽  
Judith AC Rietjens ◽  
Agnes van der Heide
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

Advance care planning, palliative care, and end-of-life care interventions for homeless people: A systematic review

2016 ◽  
Vol 31 (2) ◽  
pp. 109-119 ◽  
Author(s):  
Rafael Sumalinog ◽  
Katy Harrington ◽  
Naheed Dosani ◽  
Stephen W Hwang
Keyword(s):  
Systematic Review ◽  
Palliative Care ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Homeless Persons ◽  
Cochrane Library ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

Background: Homeless individuals have a high prevalence of multiple chronic comorbidities and early mortality compared to the general population. They also experience significant barriers to access and stigmatization in the healthcare system. Providing advance care planning, palliative care, and end-of-life care for this underserved population is an important health issue. 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.

scholarly journals Unraveling the Effects of Social Class and Systemic Racism on Advance Care Planning

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 472-472
Author(s):  
Jenny McDonnell
Keyword(s):  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Black Americans ◽  
Low Ses ◽  
Care Planning ◽  
Life Care ◽  
Black And White ◽  
Advance Care ◽  
Using Data

Abstract While advance care planning (ACP) is recognized as a key facilitator of high-quality, goal-concordant end-of-life care, black Americans are less likely to participate in ACP than non-Hispanic whites (Carr 2011; Detering et al. 2010). There are divided explanations for why these disparities persist. Some scholars attribute racial disparities in end-of-life care to socioeconomic (SES) differences between black and white Americans citing blacks’ and whites’ differentiated access to, control over, and use of material resources (Wilson 1978; Yearby 2011). Others assert that health care preferences do not solely reflect lack of resources or health literacy, but that the larger social context frames care preferences differently across racial and ethnic groups in American society (Alegria et al. 2011; Sewell and Pingel forthcoming). By turning the analytical lens to class-privileged black Americans, I investigate whether racism overflows the margins of class disadvantage. Using data from the Health and Retirement Study, I ran logistic regression and moderation models. I found that class-privileged blacks are less likely to engage in ACP than both high-SES and low-SES whites. The interaction of race and SES was negatively and significantly associated with ACP (OR=0.91; P<0.05), indicating that SES has a stronger effect on the probability of ACP among whites than among blacks. Predicted probabilities show that 51% of low-SES whites are likely to engage in ACP compared to 32% of high-SES blacks. These findings indicate that racialized disparities in ACP exist independent of SES, and that the effects of SES and race are intersectional rather than simply additive.

Sign in / Sign up

Export Citation Format

Share Document