Barriers and Facilitators to Preparedness for Death: Experiences of Family Caregivers of Elders with Dementia

Hovland, Cynthia; Kramer, Betty J.

doi:10.1080/15524256.2019.1595811

Cited by 16 publications

(11 citation statements)

References 28 publications

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“…In particular, the predominance of a curative model [23,34] may explain the incorrect belief about palliative care as mostly conceived only to address physical symptoms [46]. In other cases, the cure-focused culture may influence the HPs' perception and confidence towards palliative care and its team's holistic approach [81]. Confidence was reported as being low or lacking among HPs [77], in line with a recent study [82], mainly because palliative care was seen as 'external' to the curefocused culture.…”

Section: Discussionmentioning

confidence: 99%

Palliative care utilization in oncology and hemato-oncology: a systematic review of cognitive barriers and facilitators from the perspective of healthcare professionals, adult patients, and their families

et al. 2020

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Background: Despite the high potential to improve the quality of life of patients and families, palliative care services face significant obstacles to their use. In countries with high-resource health systems, the nonfinancial and nonstructural obstacles to palliative care services are particularly prominent. These are the cognitive barriers-knowledge and communication barriers-to the use of palliative care. To date no systematic review has given the deserved attention to the cognitive barriers and facilitators to palliative care services utilization. This study aims to synthesize knowledge on cognitive barriers and facilitators to palliative care use in oncology and hemato-oncology from the experiences of health professionals, patients, and their families. Methods: A systematic review was conducted. PubMed, PsycINFO, International Association for Hospice and Palliative Care/Cumulative Index of Nursing and Allied Health Literature (IAHPC/CINAHL), and Communication & Mass Media Complete (CMMC) were systematically searched for the main core concepts: palliative care, barriers, facilitators, perspectives, points of view, and related terms and synonyms. After screening of titles, abstracts, and full-texts, 52 studies were included in the qualitative thematic analysis.

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Section: Discussionmentioning

confidence: 99%

Palliative care utilization in oncology and hemato-oncology: a systematic review of cognitive barriers and facilitators from the perspective of healthcare professionals, adult patients, and their families

et al. 2020

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“…Skillful communication conveying illness progression is vital to facilitate family's preparation for the end of life (Lewis, 2014). However, care is required to ensure that information regarding poor prognosis is communicated clearly, as families can feel that healthcare professionals "beat around the bush" rather than directly naming the dying process (Hovland and Kramer, 2019). Perhaps, a solution for clinicians is to integrate an understanding that the dementia trajectory can be nonlinear with a potential downhill spiral during every admission.…”

Section: Discussionmentioning

confidence: 99%

Discordance between the perceptions of clinicians and families about end-of-life trajectories in hospitalized dementia patients

2021

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Background Due to the unpredictable dementia trajectory, it is challenging to recognize illness progression and the appropriateness of a palliative approach. Further confusion occurs during hospitalization where the presence of comorbid conditions complicates prognostication. This research examined clinicians and families' perceptions of dementia as a terminal condition in relation to end-of-life admissions. Context The study was based in the General Medicine units of one Australian public hospital. Medical, nursing, and social work clinicians were recruited to reflect multidisciplinary perspectives. Bereaved caregivers of deceased patients with dementia were interviewed 3 months following death. Methods Qualitative research underpinned by a social constructionist epistemology and framed through complex systems theory. Semi-structured interviews generated data that illuminated perceptions of deterioration observed toward the end of life. Results Although participants anticipated general cognitive and physical deterioration associated with dementia, the emergence of comorbid illness made it difficult to predict the onset of the end of life. During a hospital admission, clinicians attributed the end of life to the advanced outcomes of dementia, whereas families described new medical crises. End-of-life admissions illuminated intersections between dementia and comorbidities rather than illness progression. In contrast with the perception that people with dementia lose awareness at the end of life, families drew attention to evidence that their loved one was present during the dying phase. Significance of results Our findings challenge the dominant understanding of dementia trajectories. Bifurcations between clinicians and families' views demonstrate the difficulties in recognizing end-of-life transitions. Implications for the integration of palliative care are considered.

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“…This seems to have been found and reported on here with these 30 family caregivers. However, not knowing when the end is near may pose significant difficulties for caregivers (Hovland & Kramer, 2019). The Institute of Medicine (2014) asserts that because advanced progressive illnesses, including dementia, are less predictable, it makes support from families (and professionals) much more challenging.…”

Section: Discussionmentioning

confidence: 99%

Dying With Dementia: Caregiver Observations of Their Family Members’ Physical Decline and Behavioral or Psychological Changes During Their Last Days

Hovland

Mallett

2020

Omega (Westport)

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Family caregivers of older persons with dementia have significant challenges across many domains. These reported problems encountered over their caregiving time are for many reasons, but what makes the caretaking difficult is complicated by both the unknown nature of the dementia disease and the dying trajectory. While there are studies, primarily from health-care professionals, of this dying process and the last few weeks of life for older persons with dementia, much less is known directly from the family caregivers’ perspectives and experiences. This qualitative study of 30 caregivers of family members aged 65 years and older who died with dementia-related diagnoses used in-depth qualitative interviews conducted over a 12-month period and directed content analysis to understand the data. The study asked what physical, behavioral, and psychological changes they observed and experienced during their family members’ last weeks of life. Three primary themes were identified around behavioral and psychological changes: (a) they become different people, (b) did not recognize caregiver, and (c) wandering and getting lost; and two primary themes identified physical decline: (a) system started shutting down and (b) drastically diminished self-sufficiency. Implications for families and professionals are reviewed and discussed.

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Barriers and Facilitators to Preparedness for Death: Experiences of Family Caregivers of Elders with Dementia

Cited by 16 publications

References 28 publications

Palliative care utilization in oncology and hemato-oncology: a systematic review of cognitive barriers and facilitators from the perspective of healthcare professionals, adult patients, and their families

Palliative care utilization in oncology and hemato-oncology: a systematic review of cognitive barriers and facilitators from the perspective of healthcare professionals, adult patients, and their families

Discordance between the perceptions of clinicians and families about end-of-life trajectories in hospitalized dementia patients

Dying With Dementia: Caregiver Observations of Their Family Members’ Physical Decline and Behavioral or Psychological Changes During Their Last Days

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