scholarly journals ‘The Future is Probably Now’: Understanding of illness, uncertainty and end‐of‐life discussions in older adults with heart failure and family caregivers

2019 ◽  
Vol 22 (6) ◽  
pp. 1331-1340 ◽  
Author(s):  
Jennifer Im ◽  
Susanna Mak ◽  
Ross Upshur ◽  
Leah Steinberg ◽  
Kerry Kuluski
Keyword(s):  
Heart Failure ◽  
Older Adults ◽  
End Of Life ◽  
Family Caregivers ◽  
Illness Uncertainty ◽  
The Future ◽  
Understanding Of Illness

scholarly journals “Whatever happens, happens” challenges of end-of-life communication from the perspective of older adults and family caregivers: a Qualitative study

2019 ◽  
Vol 18 (1) ◽  
Author(s):  
Jennifer Im ◽  
Susanna Mak ◽  
Ross Upshur ◽  
Leah Steinberg ◽  
Kerry Kuluski
Keyword(s):  
Heart Failure ◽  
Older Adults ◽  
Qualitative Study ◽  
End Of Life ◽  
Family Caregivers ◽  
Structured Interviews ◽  
Serious Illness ◽  
Alternative Approaches ◽  
Understanding Of Illness ◽  
End Of Life Communication

Abstract Background Effective communication is integral to the delivery of goal-concordant care for older adults and their family caregivers, and yet, it is uncommon in people with serious illness. This study explores the challenges of integrating end-of-life communication into heart failure management from the perspectives of older adults and family caregivers. Methods In a qualitative study of older adults with heart failure and their family caregivers, fourteen semi-structured interviews were conducted with 19 participants in Ontario, Canada. The interviews were transcribed verbatim and thematic analysis was applied to analyze the data. Results Four themes were identified in the context of participants’ understanding of illness: 1) trivializing illness-related challenges, 2) positivity in late life, 3) discomfort in having end-of-life conversations, and 4) reluctant to engage despite need. These challenges often intertwine with one another. Most participants had not engaged in end-of-life discussions with their clinicians or family members. Conclusion The findings provide insights that can inform approaches to integrate end-of-life communication for older adults with serious illness and caregivers. The identified challenges highlight a need for end-of-life communication to occur earlier in illness to be able to support individuals throughout the period of decline. In addition, end-of-life communication should be introduced iteratively for those who may not be ready to engage. Alternative approaches to communication are needed to elicit the challenges that patients and caregivers experience throughout the progression of illness to improve care for people nearing the end of life.

scholarly journals Development of a Dementia-Focused End-of-Life Planning Tool: The LEAD Guide (Life-Planning in Early Alzheimer’s and Dementia)

2019 ◽  
Vol 3 (3) ◽  
Author(s):  
Kara Dassel ◽  
Rebecca Utz ◽  
Katherine Supiano ◽  
Sara Bybee ◽  
Eli Iacob
Keyword(s):  
Older Adults ◽  
Clinical Practice ◽  
Focus Groups ◽  
End Of Life ◽  
Family Caregivers ◽  
Early Stage ◽  
Healthy Adults ◽  
Planning Tool ◽  
Healthy Older Adults ◽  
Life Planning

Abstract Background and Objectives To address the unique characteristics of Alzheimer’s disease and related dementias (ADRD) that complicate end-of-life (EOL), we created, refined, and validated a dementia-focused EOL planning instrument for use by healthy adults, those with early-stage dementia, family caregivers, and clinicians to document EOL care preferences and values within the current or future context of cognitive impairment. Research Design and Methods A mixed-method design with four phases guided the development and refinement of the instrument: (1) focus groups with early-stage ADRD and family caregivers developed and confirmed the tool content and comprehensiveness; (2) evaluation by content experts verified its utility in clinical practice; (3) a sample of healthy older adults (n = 153) and adults with early-stage ADRD (n = 38) completed the tool, whose quantitative data were used to describe the psychometrics of the instrument; and (4) focus groups with healthy older adults, family caregivers, and adults with early-stage ADRD informed how the guide should be used by families and in clinical practice. Results Qualitative data supported the utility and feasibility of a dementia-focused EOL planning tool; the six scales have high internal consistency (α = 0.66–0.89) and high test–rest reliability (r = .60–.90). On average, both participant groups reported relatively high concern for being a burden to their families, a greater preference for quality over length of life, a desire for collaborative decision-making process, limited interest in pursuing life-prolonging measures, and were mixed in their preference to control the timing of their death. Across disease progression, preferences for location of care changed, whereas preferences for prolonging life remained stable. Discussion and Implications The LEAD Guide (Life-Planning in Early Alzheimer’s and Dementia) has the potential to facilitate discussion and documentation of EOL values and care preferences prior to loss of decisional capacity, and has utility for healthy adults, patients, families, providers, and researchers.

scholarly journals PERSPECTIVES ON SETTING GOALS OF CARE AMONG HOSPICE PATIENTS WITH HEART FAILURE, THEIR FAMILIES, AND HEALTHCARE TEAM

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S791-S792
Author(s):  
Dawon Baik ◽  
David Russell ◽  
Lizeyka Jordan ◽  
Frances Dooley ◽  
Ruth Masterson Creber
Keyword(s):  
Heart Failure ◽  
End Of Life ◽  
Family Caregivers ◽  
Qualitative Interviews ◽  
Active Listening ◽  
Healthcare Team ◽  
Goals Of Care ◽  
For Profit ◽  
Care Plans ◽  
Life Trajectory

Abstract Older adults with heart failure (HF) face many end-of-life care issues. Shared decision making (SDM) in hospice is an important process that allows HF patients and their family caregivers to discuss their preferences on goals of care (GOC) with their healthcare team. Yet, little research has explored how the values and preferences of HF patients and their family are integrated into their care plans through SDM process. This presentation examines facilitators and barriers to setting GOC among hospice HF patients. Qualitative interviews were conducted with HF patients/family caregivers (n=7) and providers (n=32) at a large not-for-profit hospice agency. Several facilitators emerged: building trust, active listening, helping patients and family caregivers understand hospice and prognosis. Barriers included acceptance, family conflict, language discordance between patients and providers and lack of communication about care transition. Findings confirmed the need for individually-tailored goal-setting approaches to navigating the end-of-life trajectory among HF patients.

scholarly journals 2400 How have characteristics of end-of-life family caregiving changed from 1999 to 2015? Preliminary results from two waves of nationally representative data

2018 ◽  
Vol 2 (S1) ◽  
pp. 82-82
Author(s):  
Judith Vick ◽  
Jennifer Wolff
Keyword(s):  
Older Adults ◽  
End Of Life ◽  
Family Caregivers ◽  
Family Caregiving ◽  
Physical Strain ◽  
Term Care ◽  
Care Survey ◽  
Nationally Representative ◽  
Over Time

OBJECTIVES/SPECIFIC AIMS: Family members are often critical in the delivery of hands-on care and decisions about care for persons approaching end-of-life (EOL). Prompted by concerns about the poor quality and high costs of care at the EOL, recent delivery reform efforts—such as the growth of hospice and palliative care—have been directed at improving EOL care for both patients and family. Trends of the characteristics of EOL family caregivers and care recipients over time have not been well described. The goal of this study is to evaluate changes in EOL family caregiving from 1999 to 2015. METHODS/STUDY POPULATION: This study uses reconciled data from two nationally representative surveys and their linked caregiver surveys: the 1999 wave of the National Long-Term Care Survey (NLTCS) and the Informal Care Survey (ICS), and the 2015 wave of the National Health and Aging Trends Study (NHATS) and the National Survey of Caregiving (NSOC). RESULTS/ANTICIPATED RESULTS: Crude analysis shows that older adults living in the community and receiving help from family caregivers in the last year of life were significantly better educated (72% with greater than 12 years of education vs. 46%), and more diverse (78% White vs. 89%) in 2015 compared with 1999. Family caregivers in the last year of life were less likely to be female in 2015 compared with 1999 (74% vs. 68%, NS) and significantly less likely to be spouses (45% vs. 38%) in 2015. In 2015, a significantly greater proportion of older adults received help with five or more activities of daily living (47% vs. 34%), but family caregivers reported significantly lower levels of caregiving-associated distress: financial strain (80% reporting none in 2015 vs. 53%), emotional (51% vs. 39%), and physical strain (70% vs. 45%). In addition, a significantly greater proportion of EOL family caregivers used respite care in 2015 compared to 1999 (15% vs. 4%). DISCUSSION/SIGNIFICANCE OF IMPACT: Changes in the experience of EOL family caregiving may be impossible to capture in studies of single interventions, but tracking nationally representative trends can be used as an indicator of broader changes that take place cumulatively over time. Although studies of this nature cannot identify causal mechanisms of change, they are important to monitor long-term impact of program implementation and to guide future research, policy, and resource allocation.

scholarly journals End-of-Life Plans for African American Older Adults With Dementia

2018 ◽  
Vol 35 (10) ◽  
pp. 1314-1322 ◽  
Author(s):  
Karen O. Moss ◽  
Nancy L. Deutsch ◽  
Patricia J. Hollen ◽  
Virginia G. Rovnyak ◽  
Ishan C. Williams ◽  
...  
Keyword(s):  
Older Adults ◽  
African American ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Life Care ◽  
Life Planning ◽  
Care Recipients ◽  
Life Plans ◽  
End Of Life Planning

African Americans are perceived to be least likely of all racial and ethnic groups to prepare for the end of life. However, verbal plans for the end of life are of particular importance to this population and may help understand why they are less likely to possess a formal end-of-life care planning document. The purpose of this study was to determine the number of formal and/or informal end-of-life care plans that existed among a convenience sample of African American older adults with dementia. For this descriptive study, data were collected from African American family caregivers (N = 65) of older adults with dementia. Descriptive statistics were conducted. Caregivers in this sample reported high rates of formal and/or informal end-of-life plans for their care recipients. Agency forms (power of attorney, health-care surrogate, or guardianship forms) had been obtained by 74% of the care recipients, while 63% of them possessed a formal end-of-life care planning document. All combined, 88% of the caregivers possessed at least 1 document or verbal information concerning end-of-life care for their care recipient or at least there was an assigned surrogate. Although limited, these findings reflect more end-of-life planning in this population than previous studies reported and could improve the quality of end-of-life outcomes in this population by giving health-care providers increased understanding of African American end-of-life planning preferences. This may, in turn, help the providers to inform and educate these care recipients and their family caregivers.

scholarly journals Translating and Testing the ENABLE: CHF-PC Concurrent Palliative Care Model for Older Adults with Heart Failure and Their Family Caregivers

2014 ◽  
Vol 17 (9) ◽  
pp. 995-1004 ◽  
Author(s):  
J. Nicholas Dionne-Odom ◽  
Alan Kono ◽  
Jennifer Frost ◽  
Lisa Jackson ◽  
Daphne Ellis ◽  
...  
Keyword(s):  
Heart Failure ◽  
Older Adults ◽  
Palliative Care ◽  
Family Caregivers ◽  
Care Model

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 Study protocol of coaching end-of-life palliative care for advanced heart failure patients and their family caregivers in rural appalachia: a randomized controlled trial

2019 ◽  
Vol 18 (1) ◽  
Author(s):  
Ubolrat Piamjariyakul ◽  
Trisha Petitte ◽  
Angel Smothers ◽  
Sijin Wen ◽  
Elizabeth Morrissey ◽  
...  
Keyword(s):  
Heart Failure ◽  
Clinical Trial ◽  
Palliative Care ◽  
Randomized Controlled Trial ◽  
Home Care ◽  
End Of Life ◽  
Family Caregivers ◽  
Standard Care ◽  
Controlled Trial ◽  
Randomized Controlled

Abstract Background Heart failure (HF) afflicts 6.5 million Americans with devastating consequences to patients and their family caregivers. Families are rarely prepared for worsening HF and are not informed about end-of-life and palliative care (EOLPC) conservative comfort options especially during the end stage. West Virginia (WV) has the highest rate of HF deaths in the U.S. where 14% of the population over 65 years have HF. Thus, there is a need to investigate a new family EOLPC intervention (FamPALcare), where nurses coach family-managed advanced HF care at home. Methods This study uses a randomized controlled trial (RCT) design stratified by gender to determine any differences in the FamPALcare HF patients and their family caregiver outcomes versus standard care group outcomes (N = 72). Aim 1 is to test the FamPALcare nursing care intervention with patients and family members managing home supportive EOLPC for advanced HF. Aim 2 is to assess implementation of the FamPALcare intervention and research procedures for subsequent clinical trials. Intervention group will receive routine standard care, plus 5-weekly FamPALcare intervention delivered by community-based nurses. The intervention sessions involve coaching patients and family caregivers in advanced HF home care and supporting EOLPC discussions based on patients’ preferences. Data are collected at baseline, 3, and 6 months. Recruitment is from sites affiliated with a large regional hospital in WV and community centers across the state. Discussion The outcomes of this clinical trial will result in new knowledge on coaching techniques for EOLPC and approaches to palliative and end-of-life rural home care. The HF population in WV will benefit from a reduction in suffering from the most common advanced HF symptoms, selecting their preferred EOLPC care options, determining their advance directives, and increasing skills and resources for advanced HF home care. The study will provide a long-term collaboration with rural community leaders, and collection of data on the implementation and research procedures for a subsequent large multi-site clinical trial of the FamPALcare intervention. Multidisciplinary students have opportunity to engage in the research process. Trial registration ClinicalTrials.gov NCT04153890, Registered on 4 November 2019

Sign in / Sign up

Export Citation Format

Share Document