scholarly journals Supportive and Palliative Care at Home -Improving Quality in End of Life Care Dying at Home-

Haigan ◽  
2009 ◽  
Vol 49 (4) ◽  
pp. 353-357
Author(s):  
Takashi Sakurai
2018 ◽  
Vol 32 (6) ◽  
pp. 1042-1054 ◽  
Author(s):  
Caroline Mogan ◽  
Mari Lloyd-Williams ◽  
Karen Harrison Dening ◽  
Christopher Dowrick

Background: It is reported that, given the right support, most people would prefer to die at home, yet a very small minority of people with dementia do so. At present, knowledge gaps remain on how best to support end-of-life care at home for people with dementia. Aim: To identify and understand the challenges and facilitators of providing end-of-life care at home for people with dementia. Design: Narrative synthesis of qualitative and quantitative data. Data sources: The review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A systematic literature search was conducted across six electronic databases (AMED, BNI, CINAHL, EMBASE, MEDLINE and PsycINFO) and reference lists of key journals were searched up to July 2017. Results: Searches returned 1949 unique titles, of which seven studies met all the eligibility criteria (four quantitative and three qualitative). Six key themes were identified – four facilitators and two challenges. Facilitators included ‘support from health care professionals’, ‘informal caregiver resilience and extended social networks’, ‘medications and symptom management’ and ‘appropriate equipment and home adaptations’. Challenges included ‘issues with professional services’ and ‘worsening of physical or mental health’. Conclusion: People with dementia may not always require specialist palliative care at the end of life. Further research is required to overcome the methodological shortcomings of previous studies and establish how community development approaches to palliative care, such as compassionate communities, can support families to allow a greater number of people with dementia to die at home.


2020 ◽  
pp. 026921632098171
Author(s):  
Leena K Surakka ◽  
Minna M Peake ◽  
Minna M Kiljunen ◽  
Pekka Mäntyselkä ◽  
Juho T Lehto

Background: Paramedics commonly face acute crises of patients in palliative care, but their involvement in end-of-life care is not planned systematically. Aim: To evaluate a protocol for end-of-life care at home including pre-planned integration of paramedics and end-of-life care wards. Design: Paramedic visits to patients in end-of-life care protocol were retrospectively studied. Setting/Participants: All of the patients who had registered for the protocol between 1 March 2015 and 28 February 2017 in North Karelia, Finland, were included in this study. Results: A total of 256 patients were registered for the protocol and 306 visits by paramedic were needed. A need for symptom control (38%) and transportation (29%) were the most common reasons for a visit. Paramedics visited 43% and 70% of the patients in areas with and without 24/7 palliative home care services, respectively ( p < 0.001); while 58% of all the visits were done outside of office hours. Problems were resolved at home in 31% of the visits. The patient was transferred to a pre-planned end-of-life care ward and to an emergency department in 48% and 16% of the cases, respectively. More patients died in end-of-life care wards in areas without (54%) than with (33%) 24/7 home care services ( p = 0.001). Conclusions: Integration of paramedics into end-of-life care at home is reasonable especially in rural areas without 24/7 palliative care services and outside of office hours. The majority of patients can be managed at home or with the help of an end-of-life care ward without an emergency visit.


2018 ◽  
Vol 2018 ◽  
pp. 1-9 ◽  
Author(s):  
Chizuru Nagata ◽  
Hironori Yada ◽  
Junko Inagaki

In Japan, the number of elderly people who require long-term care is increasing as a result of the country’s aging population. Consequently, the burden experienced by caregivers who provide end-of-life care at home has become a social problem. This study aimed to confirm the factor structure of such caregiver burden by analyzing the Japanese version of the Zarit Caregiver Burden Interview (J-ZBI). The J-ZBI was administered to 389 caregivers providing end-of-life care, and 247 answers were analyzed, with exploratory factor analysis performed on the results. Consequently, a four-factor structure emerged (sacrificing life, personal strain, severe anxiety, and captivity); these four factors, constituting 15 items, were cumulatively named “J-ZBI_15.” In regard to reliability, Cronbach’sαcoefficient for each factor was high; in terms of validity, a confirmatory factor analysis was conducted to examine the four-factor structure, and the goodness of model fit was determined to be satisfactory. Further, the convergent validity was also high. The care burden experienced by those providing end-of-life care at home differs from the burden of caregivers of individuals with other diseases, such as Alzheimer’s. For assessing the burden felt by this population, the 15-item four-factor ZBI model is more appropriate than the single-factor 22-item ZBI, and we also determined that J-ZBI_8 is unsuitable for this task. Thus, measurement of family caregivers’ burden in regard to providing end-of-life care at home should be performed using the 15-item four-factor J-ZBI model.


2020 ◽  
Vol 37 (3) ◽  
pp. 340-347 ◽  
Author(s):  
Camilla Kjellstadli ◽  
Heather Allore ◽  
Bettina S Husebo ◽  
Elisabeth Flo ◽  
Hogne Sandvik ◽  
...  

Abstract Background General practitioners (GPs) may play an important role in providing end-of-life care to community-dwelling people. Objective To investigate patients' contacts with GPs, GPs' interdisciplinary collaboration, out-of-hours services and hospitalizations in the last 13 weeks of life and associations with dying at home. Second, investigate whether GP contacts were associated with fewer out-of-hours contacts or days hospitalized. Methods Individually linked data from the Norwegian Cause of Death Registry, Norwegian Patient Registry, Statistics Norway and Control and Payment of Reimbursement to Health Service Providers database for all 80 813 deceased people in Norway within 2012–13. Outcomes were analyzed with logistic regression and negative binomial multilevel mixed-effect models. Results Overall, 1% of people received GP home visits in Week 13 and 4.6% in the last week before death. During the last 4 weeks of life, 9.2% received one or more GP home visits. Altogether, 6.6% received one or more home visits when the GP had one or more interdisciplinary collaborations during the last 4 weeks, of which &lt;3% died at home. GP office consultations decreased towards the end of life. The likelihood of home death versus another location increased in relation to GP home visits [one home visit odds ratio (OR) 1.92, confidence interval (CI) 1.71–2.15; two or more OR 3.49, CI 3.08–3.96] and GP interdisciplinary collaboration (one contact OR 1.76, CI 1.59–1.96; two or more OR 2.52, CI 2.32–2.74). Conclusions GPs play a role in enabling people to die at home by performing home visits and collaborating with other health care personnel. Only a minority received such services in Norway.


Author(s):  
B Garcia-Palop B ◽  
A Morgenstern Isaak ◽  
C Cuso Cuquerella ◽  
I Jimenez Lozano ◽  
A Fernandez-Polo A ◽  
...  

2017 ◽  
Vol 16 (3) ◽  
pp. 260-268 ◽  
Author(s):  
Yoko Naoki ◽  
Yoshinobu Matsuda ◽  
Isseki Maeda ◽  
Hideka Kamino ◽  
Yoko Kozaki ◽  
...  

ABSTRACTObjective:Little is known about the associations between family satisfaction with end-of-life care and caregiver burden. We conducted a researcher-assisted questionnaire survey to clarify the impact of caregiver burden on family satisfaction and to determine the types of burden that decrease family satisfaction.Method:Bereaved family caregivers of patients with advanced cancer who received our outreach palliative care service were retrospectively identified. Family satisfaction with the end-of-life care provided by the palliative care service and caregiver burden were quantified using the Japanese versions of the FAMCARE Scale and the Zarit Burden Interview (ZBI), respectively.Results:Our study subjects included 23 family caregivers. The mean scores on the FAMCARE Scale and the ZBI for the total population were 72.8 ± 11.2 and 22.8 ± 17.3, respectively, indicating moderate-to-high satisfaction and low-to-moderate burden. Caregiver burden had a strong negative correlation to family satisfaction with end-of-life care (Spearman's rho [ρ] = −0.560, p = 0.005), which remained after adjustment for potential confounders (standardized beta [β] = −0.563, p = 0.01). Several burden items—including loss of control, personal time, social engagement with others, feeling angry with the patient, feeling that the patient wants more help than he/she needs, and a wish to leave the care to someone else—were associated with decreased satisfaction. The major cause of dissatisfaction for family members included the information provided regarding prognosis, family conferences with medical professionals, and the method of involvement of family members in care decisions.Significance of results:Caregiver burden can be a barrier to family satisfaction with end-of-life care at home. A home care model focused on caregiver burden could improve end-of-life experiences for patients and family caregivers.


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