scholarly journals FAMILY CAREGIVERS’ ADVANCE CARE PLANNING FOR COGNITIVELY IMPAIRED OLDER ADULTS: SERVICE PROVIDERS’ PERSPECTIVES

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S237-S237
Author(s):  
Hyunjin Noh ◽  
Temilade A Aladeokin
Keyword(s):  
Older Adults ◽  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
Service Providers ◽  
Cognitively Impaired ◽  
Care Planning ◽  
Barriers To Access ◽  
Advance Care ◽  
Surrogate Decision

Abstract An increasing number of family caregivers face challenges of advance care planning (ACP) for their cognitively impaired older adults. The purpose of this study was to understand service providers’ views of ACP knowledge and needs among such family caregivers. Purposive sampling was used to recruit 10 service providers who serve older adults and their family caregivers in community settings of West Alabama. Individual, face-to-face interviews were conducted guided by a semi-structured questionnaire, asking about their experiences with and views of family caregivers’ ACP for their older adults. Thematic analysis of the qualitative data revealed several findings: family caregivers’ lack of knowledge about ACP and end-of-life care, discomfort in end-of-life discussions, uncertainty about their older adult’s end-of-life preferences, frustration with the surrogate decision-making role, family conflicts in ACP process, and logistical barriers to access ACP resources. Tailored services should be developed to address these barriers to promote ACP among this population.

scholarly journals Engagement in Advance Care Planning: The Association With Cognitive Impairment and Care Preferences

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 417-418
Author(s):  
Hyo Jung Lee ◽  
Giyeon Kim
Keyword(s):  
Older Adults ◽  
Cognitive Impairment ◽  
Relative Risk ◽  
End Of Life ◽  
Advance Care Planning ◽  
Multinomial Logistic Regression ◽  
Quality Care ◽  
Care Planning ◽  
Advance Care ◽  
Four Levels

Abstract Although there has been growing evidence that Advance care planning (ACP) benefits people with cognitive impairment nearing death, our understanding about this issue is still limited. This study examines whether cognitive impairment is associated with ACP engagement and end-of-life care preferences among older adults in the U.S. Using data from the 2012 National Health and Trends Study (n=1798, aged 65 to 101), we identified four levels of ACP engagement: None (28%), Informal ACP conversation only (12%), Formal ACP only (14%), and Both informal and formal ACP (46%). Older adults with None showed the highest prevalence of having cognitive impairment (17%), followed by those with Formal ACP only (15%) and the other two (6%, 6%). The results of Multinomial Logistic Regression showed that, compared to those without, respondents with cognitive impairment had 143% increased relative risk of having None (RR = 2.43, CI: 1.58-3.73) and 81% increased relative risk of completing Formal ACP only (RR = 1.81, CI: 1.11-2.95) relative to completing Both informal and formal ACP. In addition, respondents with None were more likely to prefer to receive all treatments available nearing death than those with any ACP engagement. Achieving high quality care at the end of life can be more challenging for older adults with cognitive impairment and their family caregivers due to the limited capacity. Although encouraged, informal ACP conversation with loved ones does not necessarily occur before the formal ACP, especially, for those with cognitive impairment. Therefore, they may merit more attention such as early ACP engagement.

IMPROVING END-OF-LIFE CARE AND ADVANCE CARE PLANNING FOR FRAIL OLDER ADULTS IN CANADA

2018 ◽  
pp. 1-7
Author(s):  
J. Downar ◽  
P. Moorhouse ◽  
R. Goldman ◽  
D. Grossman ◽  
S. Sinha ◽  
...  
Keyword(s):  
Older Adults ◽  
Palliative Care ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Frail Older Adults ◽  
Key Concepts ◽  
Advance Care

We present five Key Concepts that describe priorities for improving end-of-life care for frail older adults in Canada, and recommendations based on each Key Concept. Key Concept #1: Our end-of-life care system is focused on cancer, not frailty. Key Concept #2: We need better strategies to systematically identify frail older adults who would benefit from a palliative approach. Key Concept #3: The majority of palliative and end-of-life care will be, and should be, provided by clinicians who are not palliative care specialists. Key Concept #4: Organizational change and innovative funding models could deliver far better end-of-life care to frail individuals for less than we are currently spending. Key Concept #5: Improving the quality and quantity of advance care planning for frail older adults could reduce unwanted intensive care and costs at the end of life, and improve the experience for individuals and family members alike.

Engaging persons with dementia in advance care planning: Challenges and opportunities

Dementia ◽  
2020 ◽  
pp. 147130122097305
Author(s):  
Tamara Sussman ◽  
Rebecca Pimienta ◽  
April Hayward
Keyword(s):  
Focus Groups ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
Service Providers ◽  
Care Planning ◽  
Reflective Process ◽  
Challenges And Opportunities ◽  
Future Care ◽  
Advance Care ◽  
Positive Engagement

This study reports findings from a series of focus groups with persons with dementia and family caregivers intended to explore: (1) perceptions of and experiences with advance care planning (ACP); (2) concerns related to future care including, but not limited to, end-of-life care; and (3) practices that may support positive engagement with ACP. A total of 18 participants including 10 persons with dementia and eight family caregivers participated in five focus groups held in two urban cities in Canada. All focus group deliberations were audio recorded, transcribed verbatim, and analyzed in five stages using a semantic thematic approach. All participants expressed some form of engagement in ACP, but understandings were limited and divergence was expressed regarding the timing of more expansive conversations about future care. Although some persons with dementia were ready to engage in future care discussions, most preferred focusing on the present and suggested their families did not require direction. This placed families in the complex dilemma of protecting their loved ones while compromising their own needs for dialogue. Although individually focused models of ACP engagement hold promise for those persons with dementia ready to engage in future planning, our findings suggest that early engagement of families in the reflective process may go a long way in supporting ACP activation. Our findings further suggest that persons with dementia who do not have close family/friends may require extensive ACP encouragement and support from service providers.

scholarly journals Which moral barriers and facilitators do physicians encounter in advance care planning conversations about the end of life of persons with dementia? A meta-review of systematic reviews and primary studies

BMJ Open ◽  
2020 ◽  
Vol 10 (11) ◽  
pp. e038528
Author(s):  
Angela JJM Keijzer-van Laarhoven ◽  
Dorothea P Touwen ◽  
Bram Tilburgs ◽  
Madelon van Tilborg-den Boeft ◽  
Claudia Pees ◽  
...  
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
Systematic Reviews ◽  
Moral Dilemmas ◽  
Barriers And Facilitators ◽  
Care Planning ◽  
People With Dementia ◽  
Meta Review ◽  
Advance Care

Importance and objectiveConducting advance care planning (ACP) conversations with people with dementia and their relatives contributes to providing care according to their preferences. In this review, we identify moral considerations which may hinder or facilitate physicians in conducting ACP in dementia.DesignFor this meta-review of systematic reviews and primary studies, we searched the PubMed, Web of Science and PsycINFO databases between 2005 and 30 August 2019. We included empirical studies concerning physicians’ moral barriers and facilitators of conversations about end-of-life preferences in dementia care. The protocol was registered at Prospero (CRD42019123308).Setting and participantsPhysicians and nurse practitioners providing medical care to people with dementia in long-term and primary care settings. We also include observations from patients or family caregivers witnessing physicians’ moral considerations.Main outcomesPhysicians’ moral considerations involving ethical dilemmas for ACP. We define moral considerations as the weighing by the professional caregiver of values and norms aimed at providing good care that promotes the fundamental interests of the people involved and which possibly ensues dilemmas.ResultsOf 1347 studies, we assessed 22 systematic reviews and 51 primary studies as full texts. We included 11 systematic reviews and 13 primary studies. Themes included: (1) beneficence and non-maleficence; (2) respecting dignity; (3) responsibility and ownership; (4) relationship and (5) courage. Moral dilemmas related to the physician as a professional and as a person. For most themes, there were considerations that either facilitated or hindered ACP, depending on physician’s interpretation or the context.ConclusionsPhysicians feel a responsibility to provide high-quality end-of-life care to patients with dementia. However, the moral dilemmas this may involve, can lead to avoidant behaviour concerning ACP. If these dilemmas are not recognised, discussed and taken into account, implementation of ACP as a process between physicians, persons with dementia and their family caregivers may fail.

Advance care planning among older LGBT Canadians: Heteronormative influences

Sexualities ◽  
2020 ◽  
pp. 136346071989696
Author(s):  
Brian de Vries ◽  
Gloria Gutman ◽  
Shimae Soheilipour ◽  
Jacqueline Gahagan ◽  
Áine Humble ◽  
...  
Keyword(s):  
Older Adults ◽  
End Of Life ◽  
Advance Care Planning ◽  
Cultural Context ◽  
Death And Dying ◽  
Living Will ◽  
Community Dwelling ◽  
Care Planning ◽  
Power Of Attorney ◽  
Advance Care

Advance care planning (ACP) in North America often takes place in a cultural context of great ambivalence about death and dying, challenging efforts to discuss end-of-life care desires and preparations for death. Such challenges are amplified for sexual and gender minority older adults who often lack connections to traditional heteronormative systems of support. The extent of ACP preparation (completed documents, discussions) and their predictors was examined among a national sample of 91 community-dwelling Canadian LGBT older adults (mean age 68). The sample was disproportionately single and lived alone; more trans participants had children and about half of all participants reported a chosen family. About two-thirds of participants had a will, while less than half had a living will and power of attorney for health care, and a quarter had made informal caregiving arrangements. Just over one-third of respondents reported having discussions about future care and end-of-life plans. The only significant predictors of both ACP documents completed and ACP discussions undertaken were relationship status (those in a relationship were more likely to have engaged in both) and number of children (those with children were less likely to have completed documents). Given that most LGBT older adults are single, efforts must be expanded to reach and engage these individuals in preparing for end of life.

Factors Influencing Advance Care Planning Among Older Adults in Two Socioeconomically Diverse Living Communities

2016 ◽  
Vol 35 (1) ◽  
pp. 69-74 ◽  
Author(s):  
Jennifer L. Tripken ◽  
Cathy Elrod ◽  
Susan Bills
Keyword(s):  
Older Adults ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Retirement Community ◽  
Continuing Care ◽  
Care Planning ◽  
Attitudes And Beliefs ◽  
Life Care ◽  
Advance Care

Background/Objectives: Advance care planning (ACP) is an iterative, complex, and dynamic process of discussion, decision-making, and documentation about end-of-life care. The extent to which this process takes place in older adults in diverse socioeconomic settings is not well documented. The aim of this study was to assess the knowledge, attitudes, and beliefs about ACP among older adults in two socioeconomically diverse settings to identify the individual and contextual factors that influence behaviors regarding end-of-life care. Design: A cross-sectional survey design was used. Setting: An affordable independent continuing care retirement community and a high-income eligible (HIE) independent continuing care retirement community. Participants: Individuals aged 55 years and older who resided in independent living. Measurements: A 61-item survey was administered. Simple descriptive statistics were used to examine the responses, and inferential statistics were used to evaluate which items were associated with key outcomes between the 2 settings. Results: Seventy-seven older adults completed the survey. Significant differences in familiarity of terminology and knowledge of ACP, as well as significant differences in completion of advance directives and communication, were found between the 2 communities. No differences were found in attitudes and beliefs about end-of-life issues. Conclusion: Higher levels of knowledge and engagement in ACP were reported at the HIE community as compared to the affordable housing community. These findings provide insight into the influence of the contextual forces that encourage and support ACP.

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.

scholarly journals Acceptability of Paper-Based Advance Care Planning (ACP) to Inform End-of-Life Care Provision for Community Dwelling Older Adults: A Qualitative Interview Study

Geriatrics ◽  
2018 ◽  
Vol 3 (4) ◽  
pp. 88 ◽  
Author(s):  
Gary Bellamy ◽  
Jennifer Stock ◽  
Patricia Schofield
Keyword(s):  
Older Adults ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Community Dwelling ◽  
Care Planning ◽  
Care Provision ◽  
Life Care ◽  
Telephone Interviews ◽  
Advance Care

This paper reports the findings from a study to investigate health care professionals’ views regarding the use and acceptability of two similar paper-based advance care planning (ACP) documents designed for older adults in their last year of life to inform end-of-life care provision. Participants’ views of using PEACE (Proactive Elderly Persons Advisory Care), a nurse led model with community geriatrician oversight, and PACe (proactive anticipatory care plan), a general practitioner (GP) led model implemented by two clinical commissioning groups (CCGs) as part of a wider pilot to determine their ability to improve end-of-life care provision, were explored. Hospital admission avoidance matrons took part in face to face interviews and care staff employed in private residential care homes took part in individual telephone interviews to explore their views of using the PEACE tool. Telephone interviews were conducted with GPs to explore their views of PACe. GPs and admission avoidance matrons were employed by CCGs and all study participants were recruited from the South East of England, where data collection took place in 2015. The data were analysed thematically. Findings from the study demonstrate how both tools provide a focus to ACP discussions to inform individual end-of-life care preferences. The importance of relationships was a pivotal theme established, trusting inter-professional relationships to enable multidisciplinary teamwork and a prior relationship with the older person (or their proxy in the case of cognitive impairment) to enable such conversations in the first place. Both tools enabled participants to think critically and reflect on their own practice. Notwithstanding participants’ views to improve their layout, using a paper-based approach to deliver streamlined ACP and end-of-life care was a theme to emerge as a potential barrier, and highlighted problems with accessing paper-based documentation, accuracy and care co-ordination in the context of multidisciplinary team working. The value of technology in overcoming this barrier and underpinning ACP as a means to help simplify service provision, promote integrated professional practice and provide seamless care, was put forward as a way forward.

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