Terminal Delirium in Hospice: The Experiences and Perspectives of Caregivers Providing Care to Terminally Ill Patients in Home Settings

2021 ◽  
pp. 104990912110007
Author(s):  
Jacek T. Soroka ◽  
Krista J. Fling ◽  
Jennifer M. Heibel ◽  
Gregory R. Kutcher ◽  
Sarah J. Ward
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Primary Caregivers ◽  
Care Program ◽  
Care Staff ◽  
Life Care ◽  
Framework Analysis ◽  
Cross Sectional ◽  
Caregiver Experiences ◽  
At Home

Objectives: Little is known about the experiences of caregivers who provide care to persons with terminal delirium (TD) in home settings. This scarcity of information is suggestive that further research is needed about care for hospice patients with delirium in the home and community. Aim: To elicit views, feelings, and end-of-life care experiences of primary caregivers assisting dying persons with TD in hospice at home. Design: Qualitative, exploratory, cross-sectional study design was chosen. In-depth semistructured interviews explored caregiver experiences in caring for persons with TD. Qualitative thematic framework analysis was used. Participants: Fifteen bereaved adult primary caregivers who received services from a hospice care program affiliated with a large nonprofit health system in the US Midwest. Results: Caregiver experiences were broad and reflected 4 major themes: symptomology, coping, effective and noneffective interventions, and support. The most distressing factors for caregivers were behaviors and symptomology of TD. They did not know what to say, how to respond, and how best to behave with someone who had delirium. Many caregivers had the impression that medication does not lessen delirium symptoms and that nonpharmacologic interventions are effective and beneficial only when they were important and meaningful to patients before delirium onset. Conclusions: This study added new knowledge from direct and personal perspectives of caregivers providing end-of-life care to patients at home. Understanding developed about provision of care to someone with TD in home hospice. Improved comprehension of caregiver experiences can help professional hospice and palliative care staff better prepare caregivers for when patients have TD.

Family Caregivers’ Confidence Caring for Relatives in Hospice Care at Home: An Exploratory Qualitative Study

2018 ◽  
Vol 35 (12) ◽  
pp. 1540-1546 ◽  
Author(s):  
Jacek T. Soroka ◽  
Katherine Froggatt ◽  
Sara Morris
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Terminal Illness ◽  
Care Staff ◽  
Life Care ◽  
Cross Sectional ◽  
Home Setting ◽  
Care At Home ◽  
At Home

Objectives: Although the experiences of family caregivers have received attention, little research has specifically explored caregivers’ confidence. Evidence shows that caregivers of hospice patients do not feel confident or prepared to care for relatives or friends who die at home. Aim: We aimed to elicit the views, feelings, and experiences of primary caregivers who provide unpaid care to dying family members in the home setting to better understand what contributes to their confidence during end-of-life care. Design: The exploratory, cross-sectional design involved semistructured, in-depth interviews. A narrative analysis that focused on form and content was chosen to analyze the data. Participants: Sixteen bereaved caregivers (14 individuals and 1 brother/sister dyad) from the midwestern United States who received support from 1 hospice participated in the study. Results: Four storylines running longitudinally through the interviews were identified as shaping, giving meaning to, and contextualizing caregivers’ confidence: values/relationships, stories of terminal illness, needs, and support. Caregivers’ confidence is shaped by the terminal illness of the person for whom they care and caregivers’ values and relationships. It is also influenced by their needs and the sources and strength of support they receive. Conclusions: This research developed understanding about family provision of end-of-life care at home. Better comprehension of caregivers’ experiences can help professional hospice and palliative care staff to understand what aids caregivers to be more confident.

scholarly journals End-of-life Care Preferences among Cancer Patients in Southern Thailand: A University Hospital-based Cross-Sectional Survey

2021 ◽  
Author(s):  
Jarurin Pitanupong ◽  
Sahawit Janmanee
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
Cancer Patients ◽  
End Of Life Care ◽  
University Hospital ◽  
Life Care ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
At Home

Abstract Background: End-of-life care preferences may be highly individual, heterogenic, and variable according to culture and belief. This study aimed to explore preferences and factors associated with end-of-life care among Thai cancer patients with the goal of helping optimize their quality of life.Methods: A cross-sectional study surveyed cancer outpatients at Songklanagarind Hospital from August to November 2020. The questionnaires inquired about: 1) personal and demographic information, 2) experiences with end-of-life care received by relatives, and 3) end-of-life care preferences. To determine end-of life preferences, the data were analyzed using descriptive statistics. The data concerning patient demographics and end-of-life care preferences were compared using Fisher’s exact test. Results: The majority of the 96 cancer outpatients were female (65.6%), and the overall mean age was 55.8 ±11.6 years. More than half of them had an experience of observing someone die (68.8%), and they were predominantly satisfied with the care received by their relatives in passing away at home surrounded by family (47.0%) and being conscious until the time of death (68.2%). Most participants preferred receiving the full truth regarding their illness (99.0%), being free of uncomfortable symptoms (96.9%), having their loved ones around (93.8%), being mentally aware at the last hour (93.8%), and having the sense of being meaningful in life (92.7%). Their 3 most important end-of-life care wishes were receiving the full truth regarding their illness, disclosing the full truth regarding their illness to family members, and passing away at home. Conclusion: In order to optimize the quality of life of terminal patients, end-of-life care should ensure they receive the full truth regarding their illness, experience no distress symptoms, remain mentally aware at the last hour of life, feel meaningful in life, and pass away comfortably with loved ones around.

scholarly journals End-of-life care preferences among cancer patients in Southern Thailand: a university hospital-based cross-sectional survey

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Jarurin Pitanupong ◽  
Sahawit Janmanee
Keyword(s):  
Quality Of Life ◽  
End Of Life ◽  
Cancer Patients ◽  
End Of Life Care ◽  
University Hospital ◽  
Life Care ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
At Home

Abstract Background End-of-life care preferences may be highly individual, heterogenic, and variable according to culture and belief. This study aimed to explore preferences and factors associated with end-of-life care among Thai cancer patients. Its findings could help optimize the quality of life of palliative cancer patients. Methods A cross-sectional study surveyed palliative cancer outpatients at Songklanagarind Hospital from August to November 2020. The questionnaires inquired about: (1) personal and demographic information, (2) experiences with end-of-life care for their relatives, and (3) end-of-life care preferences. To determine end-of life preferences, the data were analyzed using descriptive statistics. The data concerning patient demographics and end-of-life care preferences were compared using Fisher’s exact test. Results The majority of the 96 palliative cancer outpatients were female (65.6 %), and the overall mean age was 55.8 ± 11.6 years. More than half of them had an experience of observing someone die (68.8 %), and they were predominantly being conscious until the time of death (68.2 %). Most participants preferred receiving the full truth satisfied with the care their relatives had received in passing away at home surrounded by family (47.0 %) and regarding their illness (99.0 %), being free of uncomfortable symptoms (96.9 %), having their loved ones around (93.8 %), being mentally aware at the last hour (93.8 %), and having the sense of being meaningful in life (92.7 %). Their 3 most important end-of-life care wishes were receiving the full truth regarding their illness, disclosing the full truth regarding their illness to family members, and passing away at home. Conclusions In order to optimize the quality of life of palliative cancer patients, end-of-life care should ensure they receive the full truth regarding their illness, experience no distressing symptoms, remain mentally aware at the last hour of life, feel meaningful in life, and pass away comfortably with loved ones around.

scholarly journals Exploring various models of hospice care worldwide that can be used and adapted to the context of Qatar: A review of the literature

2020 ◽  
Vol 6 (2) ◽  
pp. 1
Author(s):  
Aisha Noor Mohammad​ Khan ◽  
Jessie Johnson ◽  
Asma Al Bulushi
Keyword(s):  
Literature Review ◽  
End Of Life ◽  
End Of Life Care ◽  
Hospice Care ◽  
Care Staff ◽  
Life Care ◽  
Care Services ◽  
Wish To Die ◽  
Home Hospice Care ◽  
At Home

Background: Hospice care is an alternative for those patients who wish to die at home. Most clients who have a terminal illness would rather choose the services provided by healthcare workers who deliver hospice care in the client’s home. For some, it is important to have the ability to spend time with friends, family and to die with dignity and respect at their preferable place of death. Qatar has established end of life care services for patients with advanced stages of cancer, however these services are delivered on palliative care units housed within the National Center for Cancer Care and Research (NCCCR). Having the ability to provide at home hospice care is a necessity in order to carry out the wish of clients who wish to die at home, fulfil the gap in these facilities, and achieve the goal of Qatar’s national health strategy, which is to improve cancer services.Aim: To explore the literature for different models of at-home hospice care worldwide then find a model that can be adapted to the context of Qatar.Methods: A literature review approach was used. Nine scholarly articles were found that focused on and evaluated different at-home hospice models of care worldwide published between 2007 and 2018. Articles were critically appraised using the Mixed Method Appraisal Tool. The data were analysed by categorizing the included articles in a spreadsheet based on study design.Results: The most significant components of at-home models of hospice care were multidimensional care, staff competent in delivering end of life care services, and the ability to provide twenty-four-hour care in the home. These components had a positive impact on providing safe effective end of life care services at home.Conclusions: Taken together, all the necessary components identified in this literature review will go a long way in the successful development of hospice care in Qatar.

scholarly journals End-of-life care in intellectual disability: a retrospective cross-sectional study

2019 ◽  
Vol 10 (4) ◽  
pp. 469-477 ◽  
Author(s):  
Katherine Hunt ◽  
Jane Bernal ◽  
Rhian Worth ◽  
Julia Shearn ◽  
Paul Jarvis ◽  
...  
Keyword(s):  
Intellectual Disability ◽  
General Population ◽  
End Of Life ◽  
End Of Life Care ◽  
Population Based ◽  
Cross Sectional Study ◽  
Care Staff ◽  
Life Care ◽  
Care Providers ◽  
Cross Sectional

BackgroundAdults with intellectual disability (ID) experience inequality in access to healthcare that is considered to extend to end-of-life care. Their experiences of healthcare at the end of life and how these compare with the general population are unknown.AimTo describe the end-of-life care outcomes for adults with ID living in residential care in the UK using the VOICES-SF questionnaire and compare these with the general population.DesignNationwide population-based postbereavement survey.Participants38 ID care providers took part in the study. The supported over 13 000 people with ID. Over the 18-month period of data collection, 222 deaths were reported. The survey was completed, by care staff, for 157 (70.7%) of those deaths.ResultsDecedents had complex health, functional and behavioural needs. Death was unanticipated in a high proportion of cases. Quality of care provided across care settings was generally well rated. However, hospital care and care provided at the time of was less well rated, particularly in comparison with the general population. Respondents reported low levels of involvement in care and awareness of approaching death among adults with ID, and lower than in the general population.ConclusionsAccess to end-of-life care for adults with ID may be constrained by a failure to identify approaching the end of life. The high proportion of unexpected deaths in this population warrants further study. There is a need to increase and support the involvement of adults with ID to be active partners in planning care at the end of their lives.

scholarly journals “A good death but there was all this tension around”- perspectives of residential managers on the experience of delivering end of life care for people living with dementia

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Jessica A. L. Borbasi ◽  
Allison Tong ◽  
Alison Ritchie ◽  
Christopher J. Poulos ◽  
Josephine M. Clayton
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Aged Care ◽  
Care Staff ◽  
Care Homes ◽  
Residential Aged Care ◽  
Life Care ◽  
Advanced Dementia ◽  
Front Line ◽  
Care Managers

Abstract Background End of life care for residents with advanced dementia in the aged care setting is complex. There is prolonged and progressive cognitive decline, uncertain disease trajectory, significant symptom burden and infrequent access to specialist palliative care. Residential aged care managers offer a unique perspective in understanding the experience of providing end of life care for residents with advanced dementia. They bring insight from the coalface to the broader policy context. The aim of this study was to describe the experience and perspectives of residential aged care managers on providing end of life care for residents living with dementia. Methods Focus groups and semi-structured interviews were conducted with residential or care managers from various care homes from one dementia specific aged care organisation in Australia. A comprehensive sampling strategy was used in participating care homes. Transcripts were analysed using thematic analysis. Results 20 residential or care managers from 11 aged care homes in two states of Australia participated in two focus groups (total 16 participants) or individual interviews (4 participants). Six themes were identified: laying the ground work to establish what families understand about dementia, playing the peacemaker in the face of unrealistic family demands and expectations, chipping away at denial and cultivating a path towards acceptance of death, recruiting general practitioners as allies, supporting and strengthening the front line, and dedication to optimal care is relentless but rewarding. Conclusion Aged care manager participants described provision of end of life dementia care as a rewarding but sometimes fraught experience requiring persistent personalisation of care and communication to enable family acceptance of the resident’s terminal condition. The findings suggest that continuous front line aged care staff skill development, iterative family discussions, and partnership building between aged care staff and general practitioners, are all required to promote optimal end of life dementia care in residential aged care settings.

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