A prospective study: Hypodermoclysis performed by caregivers in the home setting.

2014 ◽  
Vol 32 (31_suppl) ◽  
pp. 128-128 ◽  
Author(s):  
Marieberta Vidal ◽  
David Hui ◽  
Janet L. Williams ◽  
Gary B. Chisholm ◽  
Julio Allo ◽  
...  
Keyword(s):  
End Of Life ◽  
Hospice Care ◽  
Training Session ◽  
Oral Intake ◽  
Home Setting ◽  
Site Evaluation ◽  
Preliminary Study ◽  
A Prospective Study ◽  
Trained Nurse ◽  
At Home

128 Background: Decreased oral intake is very common at the end of life. Dehydration can aggravate symptoms like fatigue, myoclonus, and confusion. Intravenous (iv) hydration at home can be uncomfortable and expensive. Hypodermoclysis (HDC) is a comfortable and inexpensive but rarely used way to provide hydration at the end of life in the home setting. The purpose of this study was to evaluate a program of HDC at home by the caregivers. Methods: All caregivers underwent a 45 minute training session on HDC administration and assessment of infusion site delivered by a specially trained nurse. Caregivers received daily calls and on site evaluation on day 8. Results: A total of 21 patient/caregivers dyads were admitted to this preliminary study: 10 (47%) female patients and 16 (76%) female caregivers. All patients had advanced cancer receiving hospice care at home. All caregivers who received training were able to start the infusion. Side effects were minimal with 1 (5%) care of the needle difficulty and leakage. Conclusions: This preliminary study suggests that subcutaneous hydration can be administered by caregivers at home with minimal burden. It can be easily done by just gravity or weight. It will avoid the use of expensive iv pump devices or need of special technical support. [Table: see text]

scholarly journals THE LAST MONTH OF LIFE: AN EXPLORATORY REVIEW OF THE NATIONAL HEALTH AND AGING TRENDS STUDY

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S274-S274
Author(s):  
Abigail Latimer ◽  
Lauren Montemuro-Rode ◽  
Brianna Garrison ◽  
Allison Gibson
Keyword(s):  
Nursing Home ◽  
End Of Life ◽  
National Health ◽  
Hospice Care ◽  
Influential Factors ◽  
Future Research ◽  
Time Of Death ◽  
Medicare Beneficiaries ◽  
Cross Sectional Survey ◽  
At Home

Abstract Approximately 80% of Americans prefer to die at home. Hospice and palliative care services are associated with improved pain and symptom management, increasing capacity to meet preferences for end-of-life care at home. However, according to the NHPCO (2018) only 48% of Medicare beneficiaries were enrolled in hospice at the time of death. This poster presents trends in the last month of life for adult Medicare beneficiaries age 65 or older examining the influential factors contributing to the quality of end-of-life experiences. A cross-sectional survey design was utilized with the National Health and Aging Trends Study (NHATS). Descriptive and inferential statistics were generated to describe a sample of persons (n= 241) who died in 2017. The sample demographics are predominately white (77.6%) females (61.4%) over 90 years old (42.4%). 29.5% of individuals died at home, 29.5% at the hospital, and 27% at a nursing home. Only 32.2% had hospice care in the last month, with many experiencing pain (71.1%), shortness of breath (54.7%), and anxiety/sadness (56.9%). There were 33.6% of participants who lived alone at death and 70% did not receive hospice care. The majority of these individuals were widowed (70.4%) and 33.3% died in the hospital. The other 28.4% died at their home or someone else’s and 25.9% died in a nursing home. Many older adults face multiple barriers to experiencing a quality end-of-life experience. Future research should examine the challenges facing those living alone at time of death.

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 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.

The Changing Nature of Guilt in Family Caregivers: Living Through Care Transitions of Parents at the End of Life

2016 ◽  
Vol 27 (7) ◽  
pp. 1006-1022 ◽  
Author(s):  
Kim Martz ◽  
Janice M. Morse
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Hospice Care ◽  
Care Transitions ◽  
Family Members ◽  
Institutional Care ◽  
Transition Process ◽  
Good Death ◽  
Interpretative Approach ◽  
At Home

Older adults cared for at home by family members at the end of life are at risk for care transitions to residential and institutional care settings. These transitions are emotionally distressing and fraught with suffering for both families and the older adult. A theoretical model titled “The Changing Nature of Guilt in Family Caregivers: Living Through Care Transitions of Parents at the End of Life” was developed using the method of grounded theory. When a dying parent cannot remain at home to die, family members experience guilt throughout the transition process. Findings indicated that guilt surrounding transfers escalated during the initial stages of the transfer but was mitigated by achieving what family members deemed as a “good” death when relatives were receiving hospice care. The findings of this interpretative approach provide new insights into family-focused perspectives in care transfers of the dying.

scholarly journals NQPC-10 END-OF-LIFE PHASE OF GLIOBLASTOMA

2019 ◽  
Vol 1 (Supplement_2) ◽  
pp. ii31-ii31
Author(s):  
Tomoko Omura ◽  
Yasuji Miyakita ◽  
Takaki Omura ◽  
Makoto Ohno ◽  
Masamichi Takahashi ◽  
...  
Keyword(s):  
Nursing Homes ◽  
End Of Life ◽  
Hospice Care ◽  
Deep Coma ◽  
Term Care ◽  
Home Based ◽  
Prognosis Group ◽  
Eol Care ◽  
At Home

Abstract BACKGROUND Despite aggressive treatment with surgery and chemo-radiation therapy, it is difficult to cure patients with glioblastoma (GBM). The end-of-life (EOL) phase of patients with GBM, and related problems, have not yet been adequately studied. Most cancer patients died in the hospital (84%) in 2017, but the Japanese government has recommended palliative home-care and the number of deaths at home has recently been increasing. This study explores the current situation of EOL care for GBM patients in our hospital. METHODS We retrospectively examined the clinical course and EOL phase of 166 consecutive patients who were treated in our hospital between 2010 and 2017. RESULT In total, 107 patients died; 28 (26%) at home, 25 (23%) in hospice care, 9(9%) in nursing homes, 21(20%) in long-term care hospitals (LTCH), 13(12%) in our hospital, and 11(10%) in other neurosurgical hospitals. The median survival time and length of EOL phase for patients who died at home were 596 and 77 days; 469 and 103 days in hospice care; 528 days and 149 days in LTCH; 388 days and 52 days in our hospital; 802 and 91 days in other neurosurgical hospital; and 565 days and 55 days in nursing homes, respectively. The KPS of patients who transferred to LTCH or was started palliative care in other neurological hospital was 60. That of other patients was 50.The patients who died at home entered deep coma in the last 3.5 days (n=24) of life and could not take oral feeds for 7 days (n=26). CONCLUSION According to cancer patient study, the home-based palliative time of longer prognosis group were 59 days. EOL phase of GBM may be longer than other cancer. We must consider the problems of the EOL phase and improve the quality of EOL care.

scholarly journals QOLP-40. END-OF-LIFE CARE FOR GLIOBLASTOMA PATIENTS IN JAPAN

2019 ◽  
Vol 21 (Supplement_6) ◽  
pp. vi206-vi207
Author(s):  
Tomoko Omura ◽  
Yasuji Miyakita ◽  
Makoto Ohno ◽  
Masamichi Takahashi ◽  
Kenji Fujimoto ◽  
...  
Keyword(s):  
Nursing Homes ◽  
Home Care ◽  
End Of Life ◽  
Hospice Care ◽  
Term Care ◽  
Palliative Home Care ◽  
Eol Care ◽  
At Home

Abstract BACKGROUND Despite aggressive treatment with surgery and chemo-radiation therapy, it is difficult to cure patients with glioblastoma (GBM). The end-of-life (EOL) phase of patients with GBM, and related problems, have not yet been adequately studied. Unlike in other countries, most cancer patients died in the hospital (84%) in 2017, but the Japanese government has recommended palliative home care and the number of deaths at home has recently been increasing. This study explores the current situation of EOL care for GBM patients in Japan. METHODS We retrospectively examined the clinical course and EOL phase of 166 consecutive patients who were treated in our hospital between 2010 and 2017. RESULT: In total, 107 patients died; 27 (25.7%) at home, 24 (22.8%) in hospice care, 8 (7.6%) in nursing homes, 46 (43.9%) in hospitals (long-term care hospitals [LTCH; 19.8%], our hospital [13.3%], and other neurosurgical hospitals [10.4%]). According to our previous research, in 2001–2005, 6% of GBM patients died at home, 3% in hospice case, and 91% in the hospital. The KPSof patients who started palliative home care or transferred to another hospital was 50–60. The median survival time and length of EOL phase for patients who died at home were 498 and 76.5 days; 395 and 103 days in hospice care; 533 days and 149 days in LTCH; 374 days and 52 days in our hospital; 338 and 75.5 days in other neurosurgical hospital; and 557 days and 37 days in nursing homes, respectively. CONCLUSION The number of GBM patients who died at home in Japan is increasing, and we must consider the problems of the EOL phase and improve the quality of EOL care.

scholarly journals The Burden of Having to Wonder: Minority Stress Experiences of LGBTQ+ Hospice Family Caregivers

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 357-357
Author(s):  
Kristin Cloyes ◽  
Miranda Jones ◽  
Marilisa Vega ◽  
Megan Hebdon ◽  
Casidee Thompson ◽  
...  
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
Minority Stress ◽  
Hospice Care ◽  
Background Level ◽  
Support Needs ◽  
Presentation Of Self ◽  
Home Setting ◽  
Stress Theory ◽  
Home Hospice Care

Abstract Home hospice care relies heavily on informal caregivers, often patients’ family and close others. Hospice family caregivers report stress, burden, and unmet support needs associated with poor health and bereavement outcomes. These outcomes are sensitive to the quality of interactions with professional hospice providers, especially for historically marginalized groups, yet little research examines experiences of LGBTQ+ hospice family caregivers. Informed by minority stress theory, we conducted in-depth interviews with LGBTQ+ home hospice family caregivers across the U.S. (N=20). Participants reported demographics and described their caregiving experiences including interactions with hospice providers. Interviews were audio-recorded, transcribed, and content-analyzed. Participants were mostly white (n=15, 75%), non-Hispanic (n=19, 95%), cisgender (n=19, 95%), gender binary (n=19, 95%), lesbian (n=10, 50%), women (n=12, 60%); average age was 52.3 (range 25-67, SD=13.84). Along with known end-of-life caregiving stressors, participants experienced minority stress that complicated caregiver-provider communication. Distal stressors included lack of LGBTQ+ competent resources, inadequate legal protections, providers’ assumptions about relationships, and difficult dynamics with unaccepting relatives. Proximal stressors included perceived risks of disclosure, expectation of poor treatment, feeling the need to modify presentation of self or home, and wondering whether negative provider interactions were due to being LGBTQ+. This generated a background level of uncertainty, caution, and concern that was particularly distressing in the home setting. Minority stress affects LGBTQ+ people across the lifespan and generates added burdens and support needs for hospice family caregivers. Providers who understand these effects are better positioned to deliver safe, effective care to all families at end of life.

Evaluating the role of palliative care consultations in patients with advanced gastrointestinal cancers.

2013 ◽  
Vol 31 (31_suppl) ◽  
pp. 6-6
Author(s):  
Julia Paris ◽  
Qingling Du ◽  
R. Sean Morrison
Keyword(s):  
Palliative Care ◽  
Treatment Group ◽  
End Of Life ◽  
Hospital Readmission ◽  
Propensity Scores ◽  
Hospice Care ◽  
Post Discharge ◽  
Gi Cancers ◽  
Dying At Home ◽  
At Home

6 Background: Though research shows that patients with terminal illnesses prefer to die at home, over 60% of patients with advanced cancer are hospitalized in the last month of life. Additionally, less than half of these patients receive any form of hospice care at the end of life, despite its demonstrated potential to improve quality of care. Inpatient palliative care (PC) consultations may serve as a bridge from hospitalization to receiving the kind of end-of-life care that patients prefer. Tumors of the gastrointestinal (GI) system include some of the most common and deadliest cancers and these patients can benefit from PC services, especially when the disease has reached an advanced stage. Our objective was to compare the effectiveness of inpatient PC consultations vs. usual care on post-discharge outcomes in patients with advanced GI cancers. Methods: 202 adults with advanced GI cancers admitted to 5 US hospitals were followed prospectively through hospitalization and 6 months post-discharge. 82 patients received a palliative care consult during hospitalization. Propensity scores were used to match treated to control patients, with exposure to a palliative care consult as the intervention. Outcome measures included: referral to hospice, subsequent ER visit, hospital readmission, and place of death. Results: Significantly more patients in the treatment group were referred to hospice upon hospital discharge (38% vs. 8%, p=0.000). 70 patients died in the 6-month follow-up period. Receiving a PC consult increased the odds of dying at home 3-fold (OR=2.9, p=0.046, 95% CI 1.02-8.44) and decreased the odds of dying in a hospital by 85% (OR=0.159, p=0.002, 95% CI 0.05-0.52). At 2 and 6 months post-discharge, significantly more patients in the treatment group were receiving hospice services at death (75% vs. 18%, p=0.001 and 82% vs. 24%, p=0.000 respectively). There were no significant differences between the two groups regarding hospital readmission and ER visits post-discharge. Conclusions: PC consults for patients with advanced GI cancers was associated with increased referral to hospice, decreased likelihood of dying in a hospital and increased likelihood of dying at home.

Navigating the caregiving abyss: A metasynthesis of how family caregivers manage end-of-life care for older adults at home

2021 ◽  
pp. 026921632110429
Author(s):  
Jacqueline Michaels ◽  
Chiahui Chen ◽  
Mary Ann Meeker
Keyword(s):  
Older Adults ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Multiple Roles ◽  
Professional Organizations ◽  
Life Care ◽  
Home Setting ◽  
Education Interventions ◽  
At Home

Background: Demographic changes (global aging, decreased fertility, increased home deaths) will present a critical need for end-of-life family caregivers of older adults at home. In order to support these family caregivers, we need to better understand their experiences, struggles, and needs. Aim: To describe and explain the process of end-of-life caregiving as experienced by family caregivers of older adults residing in the home setting. Design: The Preferred Reporting Items for Systematic Reviews and Metaanalysis (PRISMA) guidelines and Sandelowski and Barroso’s procedural steps for a metasynthesis review guided this study. Data sources: Qualitative and mixed methods literature from CINAHL, Medline, PsycINFO, and EMBASE databases and information from professional organizations were reviewed for studies that focused on family caregivers providing end-of-life care to older adults residing in the home setting. Results: A total of 24 studies were identified. Family caregivers engaged in the process of “navigating a caregiving abyss” when providing and managing end-of-life-care for older adults at home. The “caregiving abyss” consisted of four phases: (1) managing multiple roles, (2) encountering challenges, (3) mobilizing resources, and (4) acknowledging death is near. During the process family caregivers strived to “live day by day” and “maintain normalcy” to achieve the goals of honoring life’s final wishes and provide home death. Conclusion: Family caregivers of older adults at the end of life navigate a variety of challenges. The findings provide a conceptual framework to help guide the development of education, interventions, and health policy to meet family caregivers’ needs in providing quality end-of-life care.

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