"Whatever happens, happens" challenges of end-of-life communication from the perspective of older adults and family caregivers: a Qualitative study.
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.
Project description:To date, knowledge of the experiences of older adults' caregivers at the end of life has come from studies that were limited to specific diseases and so-called primary caregivers and that relied on the recollections of people in convenience samples. Using nationally representative, prospective data for 2011, we found that 900,000 community-dwelling Medicare beneficiaries ages sixty-five and older who died within the following twelve months received support from 2.3 million caregivers. Nearly nine in ten of these caregivers were unpaid. Compared to other caregivers, end-of-life caregivers provided nearly twice as many hours of care per week and, especially in the case of spousal caregivers, reported more care-related challenges. Yet older adults at the end of life were not significantly more likely than other older adults to receive caregiving funded by government, state, or private insurance. To meet the needs of older adults at the end of life, their unpaid caregivers must receive greater recognition and expanded access to supportive services.
Project description:CONTEXT:Family caregivers play critical and demanding roles in the care of persons with dementia through the end of life. OBJECTIVES:The objective of this study was to determine whether caregiving strain increases for dementia caregivers as older adults approach the end of life, and secondarily, whether this association differs for nondementia caregivers. METHODS:Participants included a nationally representative sample of community-living older adults receiving help with self-care or indoor mobility and their primary caregivers (3422 dyads). Older adults' death within 12 months of survey was assessed from linked Medicare enrollment files. Multivariable logistic regression was used to assess the association between dementia and end-of-life status and a composite measure of caregiving strain (range: 0-9, using a cut point of 5 to define "high" strain) after comprehensively adjusting for other older adult and caregiver factors. RESULTS:The prevalence of dementia in our sample was 30.1%; 13.2% of the sample died within 12 months. The proportion of caregivers who experienced high strain ranged from a low of 13.5% among nondementia, non-end-of-life caregivers to a high of 35.0% among dementia caregivers of older adults who died within 12 months. Among dementia caregivers, the odds of high caregiving strain were nearly twice as high (aOR = 1.94, 95% CI: 1.10-3.45) for those who were assisting older adults nearing end of life. Among nondementia caregivers, providing care near the end of life was not associated with high strain. CONCLUSION:Increased strain toward the end of life is particularly notable for dementia caregivers. Interventions are needed to address the needs of this population.
Project description:INTRODUCTION:People are living longer; however, they are not necessarily experiencing good health and well-being as they age. Many older adults live with multiple chronic conditions (MCC), and complex health issues, which adversely affect their day-to-day functioning and overall quality of life. As a result, they frequently rely on the support of friend and/or family caregivers. Caregivers of older adults with MCC often face challenges to their own well-being and also require support. Currently, not enough is known about the health and social care needs of older adults with MCC and the needs of their caregivers or how best to identify and meet these needs. This study will examine and synthesise the literature on the needs of older adults with MCC and those of their caregivers, and identify gaps in evidence and directions for further research. METHODS AND ANALYSIS:We will conduct a scoping review of the peer-reviewed and grey literature using the updated Arksey and O'Malley framework. The literature will be identified using a multidatabase and grey literature search strategy developed by a health sciences librarian. Papers, reports and other materials addressing the health and social care needs of older adults and their friend/family caregivers will be included. Search results will be screened, independently, by two reviewers, and data will be abstracted from included literature and charted in duplicate. ETHICS AND DISSEMINATION:This scoping review does not require ethics approval. We anticipate that study findings will inform novel strategies for identifying and ascertaining the health and social care needs of older adults living with MCC and those of their caregivers. Working with knowledge-user members of our team, we will prepare materials and presentations to disseminate findings to relevant stakeholder and end-user groups at local, national and international levels. We will also publish our findings in a peer-reviewed journal.
Project description:BACKGROUND:Dementia caregivers describe knowing what to expect as an unmet need and many are unaware that dementia can be a terminal condition. Dementia with Lewy bodies (DLB) is a common neurodegenerative dementia with unique features which may affect the end of life (EOL). Given the paucity of data on EOL experiences in dementia and unique aspects of DLB affecting EOL, we investigated EOL experiences as reported by caregivers of individuals with DLB. METHOD:We conducted telephone interviews with caregivers and family members of individuals who died with DLB in the last 5 years using a semi-structured questionnaire to identify and describe EOL experiences. We used a qualitative descriptive approach to analyze interview transcripts and identify common themes. RESULTS:Thirty individuals participated in interviews. Key themes included lack of knowledge regarding what to expect, end-of-life time course (including end-of-life symptoms, declines after hospitalization and falls, and varied EOL trajectories), advance care planning, lack of family understanding, hospice, views regarding right-to-die, medications at the end of life, approaching end of life, the death experience, and activities that enhanced end of life. Lack of communication between health care teams and families and difficulty predicting death timing were two frequently expressed challenges. CONCLUSIONS:Study results emphasize the need for improved EOL counseling in DLB, recognition of EOL symptoms, earlier hospice involvement, tailoring EOL care to DLB-specific needs, and clinician-family communication. Suggestions for patient and family education are provided. Further research should confirm predictors of approaching EOL in DLB, identify strategies to improve physician recognition of EOL, and develop tools to aid communication and quality EOL care.
Project description:This study investigates the use of an information and communication technology (Elder Tree) designed for older adults and their informal caregivers to improve older adult quality of life and address challenges older adults face in maintaining their independence (for example, loneliness and isolation, falling, managing medications, driving and transportation).This study, an unblinded randomized controlled trial, will evaluate the effectiveness and cost of Elder Tree. Older adults who are at risk for losing their independence - along with their informal caregivers, if they name them - are randomized to two groups. The intervention group has access to their usual sources of information and communication as well as to Elder Tree for 18 months while the control group uses only their usual sources of information and communication. The primary outcome of the study is older adult quality of life. Secondary outcomes are cost per Quality-Adjusted Life Year and the impact of the technology on independence, loneliness, falls, medication management, driving and transportation, and caregiver appraisal and mastery. We will also examine the mediating effect of self-determination theory. We will evaluate the effectiveness of Elder Tree by comparing intervention- and control-group participants at baseline and months 6, 12, and 18. We will use mixed-effect models to evaluate the primary and secondary outcomes, where pretest score functions as a covariate, treatment condition is a between-subjects factor, and the multivariate outcome reflects scores for a given assessment at the three time points. Separate analyses will be conducted for each outcome. Cost per Quality-Adjusted Life Year will be compared between the intervention and control groups. Additional analyses will examine the mediating effect of self-determination theory on each outcome.Elder Tree is a multifaceted intervention, making it a challenge to assess which services or combinations of services account for outcomes in which subsets of older adults. If Elder Tree can improve quality of life and reduce healthcare costs among older adults, it could suggest a promising way to ease the burden that advancing age can place on older adults, their families, and the healthcare system.ClinicalTrials.gov NCT02128789 . Registered on 26 March 2014.
Project description:BACKGROUND:Advance care planning (ACP) has been shown to benefit patients and families, yet little is known about how an ACP event impacts communication and conversation about end-of-life treatment wishes and the content of such conversations between patients and family caregivers. OBJECTIVE:To characterize post-ACP conversations regarding medical wishes between seriously ill patients and their family caregivers. PARTICIPANTS:Patients with advanced illness and family caregivers. OUTCOME MEASURED:Post-ACP conversations. DESIGN:As part of a larger randomized controlled trial, dyads consisting of seriously ill patients and their identified family caregiver engaged in ACP and created an advance directive for the patient. Approximately 4 to 6 weeks later, semistructured interviews were conducted with the family caregivers to elucidate the subsequent communications regarding medical wishes. If the dyad did not have any conversations post-ACP, reasons and barriers were explored. RESULTS:The majority of dyads (131/188, 69.7%) had 2 to 3 conversations lasting 3 to 5 minutes each in the weeks immediately following ACP. These conversations most commonly addressed general patient wishes about quality of life and specific medical treatments. The most common reasons for not having conversations were a general discomfort with the topic (13/57, 22.8%) and previously having discussed medical wishes (16/57, 28.1%). CONCLUSION:The ACP events promote conversation regarding quality of life, general wishes at the end of life, and specific medical wishes. Barriers to conversation following ACP were similar to barriers to ACP in general, suggesting that a more intentional focus on addressing these barriers pre- and post-ACP may be necessary to improve communication.
Project description:BACKGROUND:Family caregivers of patients with severe illness and in need for a palliative care approach, face numerous challenges and report having insufficient preparedness for the caregiver role as well as a need for information and psychosocial support. Preparing to care for a severely ill family members also means becoming aware of death. Feelings of being prepared are associated with positive aspects and regarded protective against negative health consequences. METHODS:The study adheres to the SPIRIT-guidelines (Supplementary 1), uses a pre-post design and include a web-based intervention. Inclusion criteria are; being a family caregiver of a patient with severe illness and in need of a palliative care approach. The intervention which aims to increase preparedness for caregiving and death is grounded in theory, research and clinical experience. The topics cover: medical issues, symptoms and symptom relief; communication within the couple, how to spend the time before death, being a caregiver, planning for the moment of death and; considerations of the future. The intervention is presented through videos and informative texts. The website also holds an online peer-support discussion forum. Study aims are to: evaluate feasibility in terms of framework, content, usage and partners' experiences; explore how the use of the website, influences family caregivers' preparedness for caregiving and death; explore how the use of the website influences family caregivers' knowledge about medical issues, their communication with the patient and their considerations of the future; and to investigate how the family caregivers' preparedness for caregiving and death influences their physical and psychological health and quality of life 1 year after the patient's death. Data will be collected through qualitative interviews and a study-specific questionnaire at four time-points. DISCUSSION:This project will provide information about whether support via a website has the potential to increase preparedness for caregiving and death and thereby decrease negative health consequences for family caregivers of patients affected by severe illness. It will provide new knowledge about intervention development, delivery, and evaluation in a palliative care context. Identification of factors before death and their association with family caregivers' preparedness and long-term health may change future clinical work. TRIAL REGISTRATION:The study is registered at ClinicalTrials.gov: NCT03676283.
Project description:End-of-life communication becomes increasingly difficult in terminal cancer, which inevitably entails conversations around dying and death. In resource-limited areas, the context of end-of-life communication is usually home-based palliative care comprising mostly women in the family who play critical roles as informal caregivers. This article examined the content and contexts of family end-of-life conversations and decisions based on the retrospective accounts of a sample of bereaved women family cancer caregivers in Nairobi, Kenya.An interpretative phenomenological analysis approach was utilized to explore pertinent end-of-life communication themes. Four mini focus group interviews with a total of 13 participants [n = 5; n = 3; n = 3; n = 2] were conducted.Two end-of-life themes, advance directives as preparedness for death, and initiating death talk were examined. Findings (a) illustrate the role of family dynamics in influencing the nature of end-of-life conversations and decisions (b) demonstrate the transitional nature of family caregiver roles, and (c) underscore the paradox of the critical role played by family members in palliative care versus their ill preparedness in dealing with end-of-life issues.Findings are relevant in informing palliative psychosocial interventions and specifically the concerns and decisions of cancer patients and their families. This prompts further engagement with the question of how to equip family caregivers in resource-limited contexts for end of life care. Methodologically, these results demonstrate the possibility of simultaneous elucidation of individual experiences, interactive co-constructions and the socio-cultural contexts of experiences and meaning making processes in IPA research.
Project description:The aim of this meta-ethnography is to appraise the types and uses of theories relative to end-of-life decision making and to develop a conceptual framework to describe end-of-life decision making among patients with advanced cancers, heart failure, and amyotrophic lateral sclerosis (ALS) and their caregivers or providers. We used PubMed, Embase, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases to extract English-language articles published between January 2002 and April 2015. Forty-three articles were included. The most common theories included decision-making models ( n = 14) followed by family-centered ( n = 11) and behavioral change models ( n = 7). A conceptual framework was developed using themes including context of decision making, communication and negotiation of decision making, characteristics of decision makers, goals of decision making, options and alternatives, and outcomes. Future research should enhance and apply these theories to guide research to develop patient-centered decision-making programs that facilitate informed and shared decision making at the end of life among patients with advanced illness and their caregivers.
Project description:<h4>Background</h4>Older adults hospitalized following a fall often encounter preventable adverse events when transitioning from hospital to home. Discharge planning interventions developed to prevent these events do not all produce the expected effects to the same extent. This realist synthesis aimed to better understand when, where, for whom, why and how the components of these interventions produce positive outcomes.<h4>Methods</h4>Nine indexed databases were searched to identify scientific papers and grey literature on discharge planning interventions for older adults (65+) hospitalized following a fall. Manual searches were also conducted. Documents were selected based on relevance and rigor. Two reviewers extracted and compiled data regarding intervention components, contextual factors, underlying mechanisms and positive outcomes. Preliminary theories were then formulated based on an iterative synthesis process.<h4>Results</h4>Twenty-one documents were included in the synthesis. Four Intervention-Context-Mechanism-Outcome configurations were developed as preliminary theories, based on the following intervention components: 1) Increase two-way communication between healthcare providers and patients/caregivers using a family-centered approach; 2) Foster interprofessional communication within and across healthcare settings through both standardized and unofficial information exchange; 3) Provide patients/caregivers with individually tailored fall prevention education; and 4) Designate a coordinator to manage discharge planning. These components should be implemented from patient admission to return home and be supported at the organizational level (contexts) to trigger knowledge, understanding and trust of patients/caregivers, adjusted expectations, reduced family stress, and sustained engagement of families and professionals (mechanisms). These optimal conditions improve patient satisfaction, recovery, functional status and continuity of care, and reduce hospital readmissions and fall risk (outcomes).<h4>Conclusions</h4>Since transitions are critical points with potential communication gaps, coordinated interventions are vital to support a safe return home for older adults hospitalized following a fall. Considering the organizational challenges, simple tools such as pictograms and drawings, combined with computer-based communication channels, may optimize discharge interventions based on frail patients' needs, habits and values. Empirically testing our preliminary theories will help to develop effective interventions throughout the continuum of transitional care to enhance patients' health and reduce the economic burden of avoidable care.