scholarly journals Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study)

BMC Medicine ◽  
2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Irene J. Higginson ◽  
Deokhee Yi ◽  
Bridget M. Johnston ◽  
Karen Ryan ◽  
Regina McQuillan ◽  
...  

Abstract Background At the end of life, formal care costs are high. Informal care (IC) costs, and their effects on outcomes, are not known. This study aimed to determine the IC costs for older adults in the last 3 months of life, and their relationships with outcomes, adjusting for care quality. Methods Mortality follow-back postal survey. Setting: Palliative care services in England (London), Ireland (Dublin) and the USA (New York, San Francisco). Participants: Informal carers (ICrs) of decedents who had received palliative care. Data: ICrs reported hours and activities, care quality, positive aspects and burdens of caregiving, and completed the Texas Revised Inventory of Grief (TRIG). Analysis: All costs (formal, informal) were calculated by multiplying reported hours of activities by country-specific costs for that activity. IC costs used country-specific shadow prices, e.g. average hourly wages and unit costs for nursing care. Multivariable logistic regression analysis explored the association of potential explanatory variables, including IC costs and care quality, on three outcomes: positive aspects and burdens of caregiving, and subsequent grief. Results We received 767 completed surveys, 245 from London, 282 Dublin, 131 New York and 109 San Francisco. Most respondents were women (70%); average age was 60 years. On average, patients received 66–76 h per week from ICrs for ‘being on call’, 52–55 h for ICrs being with them, 19–21 h for personal care, 17–21 h for household tasks, 15–18 h for medical procedures and 7–10 h for appointments. Mean (SD) IC costs were as follows: USA $32,468 (28,578), England $36,170 (31,104) and Ireland $43,760 (36,930). IC costs accounted for 58% of total (formal plus informal) costs. Higher IC costs were associated with less grief and more positive perspectives of caregiving. Poor home care was associated with greater caregiver burden. Conclusions Costs to informal carers are larger than those to formal care services for people in the last three months of life. If well supported ICrs can play a role in providing care, and this can be done without detriment to them, providing that they are helped. Improving community palliative care and informal carer support should be a focus for future investment.

2008 ◽  
Vol 29 (1) ◽  
pp. 71-91 ◽  
Author(s):  
HOWARD LITWIN ◽  
CLAUDINE ATTIAS-DONFUT

ABSTRACTThis study examined whether formal care services delivered to frail older people's homes in France and Israel substitute for or complement informal support. The two countries have comparable family welfare systems but many historical, cultural and religious differences. Data for the respondents aged 75 or more years at the first wave of the Survey of Health, Ageing and Retirement in Europe (SHARE) were analysed. Regressions were examined of three patterns of care from outside the household: informal support only, formal support only and both formal and informal care, with the predictor variables including whether informal help was provided by a family member living in the household. The results revealed that about one-half of the respondents received no help at all (France 51%, Israel 55%), about one-tenth received care from a household member (France 8%, Israel 10%), and one-third were helped by informal carers from outside the household (France 34%, Israel 33%). More French respondents (35%) received formal care services at home than Israelis (27%). Most predictors of the care patterns were similar in the two countries. The analysis showed that complementarity is a common outcome of the co-existence of formal and informal care, and that mixed provision occurs more frequently in situations of greater need. It is also shown that spouse care-givers had less formal home-care supports than either co-resident children or other family care-givers. Even so, spouses, children and other family care-givers all had considerable support from formal home-delivered care.


2021 ◽  
pp. bmjspcare-2020-002764
Author(s):  
Catherine Owusuaa ◽  
Irene van Beelen ◽  
Agnes van der Heide ◽  
Carin C D van der Rijt

ObjectivesAccurate assessment that a patient is in the last phase of life is a prerequisite for timely initiation of palliative care in patients with a life-limiting disease, such as advanced cancer or advanced organ failure. Several palliative care quality standards recommend the surprise question (SQ) to identify those patients. Little is known about physicians’ views on identifying and disclosing the last phase of life of patients with different illness trajectories.MethodsData from two focus groups were analysed using thematic analysis with a phenomenological approach.ResultsFifteen medical specialists and general practitioners participated. Participants thought prediction of patients’ last phase of life, i.e. expected death within 1 year, is important. They seemed to find that prediction is more difficult in patients with advanced organ failure compared with cancer. The SQ was considered a useful prognostic tool; its use is facilitated by its simplicity but hampered by its subjective character. The medical specialist was considered mainly responsible for prognosticating and gradually disclosing the last phase. Participants’ reluctance to such disclosure was related to uncertainty around prognostication, concerns about depriving patients of hope, affecting the physician–patient relationship, or a lack of time or availability of palliative care services.ConclusionsPhysicians consider the assessment of patients’ last phase of life important and support use of the SQ in patients with different illness trajectories. However, barriers in disclosing expected death are prognostic uncertainty, possible deprivation of hope, physician–patient relationship, and lack of time or palliative care services. Future studies should examine patients’ preferences for those discussions.


2017 ◽  
Vol 37 (3/4) ◽  
pp. 134-147 ◽  
Author(s):  
Caroline Murphy ◽  
Thomas Turner

Purpose The undervaluing of care work, whether conducted informally or formally, has long been subject to debate. While much discussion, and indeed reform has centred on childcare, there is a growing need, particularly in countries with ageing populations, to examine how long-term care (LTC) work is valued. The purpose of this paper is to provide an overview of the way in which employment policies (female labour market participation, retirement age, and precarious work) and social policies (care entitlements and benefits/leave for carers) affect both informal carers and formal care workers in a liberal welfare state with a rapidly ageing population. Design/methodology/approach Drawing the adult worker model the authors use the existing literature on ageing care and employment to examine the approach of a liberal welfare state to care work focusing on both supports for informal carers and job quality in the formal care sector. Findings The research suggests that employment policies advocating increased labour participation, delaying retirement and treating informal care as a form of welfare are at odds with LTC strategies which encourage informal care. Furthermore, the latter policy acts to devalue formal care roles in an economic sense and potentially discourages workers from entering the formal care sector. Originality/value To date research investigating the interplay between employment and LTC policies has focused on either informal or formal care workers. In combining both aspects, we view informal and formal care workers as complementary, interdependent agents in the care process. This underlines the need to develop social policy regarding care and employment which encompasses the needs of each group concurrently.


2017 ◽  
Vol 31 (4) ◽  
pp. 369-377 ◽  
Author(s):  
Mendwas D Dzingina ◽  
Charles C Reilly ◽  
Claudia Bausewein ◽  
Caroline J Jolley ◽  
John Moxham ◽  
...  

Background: Refractory breathlessness in advanced chronic disease leads to high levels of disability, anxiety and social isolation. These result in high health-resource use, although this is not quantified. Aims: To measure the cost of care for patients with advanced disease and refractory breathlessness and to identify factors associated with high costs. Design: A cross-sectional secondary analysis of data from a randomised controlled trial. Setting/participants: Patients with advanced chronic disease and refractory breathlessness recruited from three National Health Service hospitals and via general practitioners in South London. Results: Of 105 patients recruited, the mean cost of formal care was £3253 (standard deviation £3652) for 3 months. The largest contributions to formal-care cost were hospital admissions (>60%), and palliative care contributed <1%. When informal care was included, the total cost increased by >250% to £11,507 (standard deviation £9911). Increased patient disability resulting from breathlessness was associated with high cost (£629 per unit increase in disability score; p = 0.006). Increased breathlessness on exertion and the presence of an informal carer were also significantly associated with high cost. Patients with chronic obstructive pulmonary disease tended to have higher healthcare costs than other patients. Conclusion: Informal carers contribute significantly to the care of patients with advanced disease and refractory breathlessness. Disability resulting from breathlessness is an important clinical cost driver. It is important for policy makers to support and acknowledge the contributions of informal carers. Further research is required to assess the clinical- and cost-effectiveness of palliative care interventions in reducing disability resulting from breathlessness in this patient group.


Blood ◽  
2019 ◽  
Vol 134 (Supplement_1) ◽  
pp. 384-384
Author(s):  
Vinay B Rao ◽  
Emmanuelle Belanger ◽  
Pamela C Egan ◽  
Thomas W. LeBlanc ◽  
Adam J Olszewski

Background: Patients with hematologic malignancies often receive aggressive care at the end of life (EOL), leading to lower quality of life. Access to early palliative care may improve EOL care outcomes, its benefits are less well established in hematologic malignancies than in solid tumors. We sought to describe the use of palliative care services among Medicare beneficiaries with hematologic malignancies, and associated EOL quality measures. Methods: Using the linked Surveillance, Epidemiology, and End Results (SEER)-Medicare registry, we studied fee-for-service Medicare beneficiaries diagnosed with acute or chronic leukemias, lymphomas, myeloma, myelodysplastic syndrome, or myeloproliferative neoplasms, who died in 2001-2015. We described trends in the use of billed palliative care services (BPCS, identified by codes in clinician encounter claims: ICD-9 V66.7 or ICD-10 Z51.5). Among patients surviving &gt;30 days from diagnosis, we compared baseline characteristics and EOL care quality metrics for patients with and without "early" BPCS (defined as services initiated &gt;30 days before death), as well as Medicare spending in the last 30 days of life. Multivariable models were fitted as appropriate according to outcome variable (robust Poisson, negative binomial, or log-gamma) and adjusting for hematologic malignancy histology, patients' age, sex, race, marital status, Medicaid co-insurance, comorbidity index and performance status indicator (calculated from claims within 1 year before death), and year of death. Results: Among the 139,191 decedents, median age at death was 82 years and 46.4% were women. The proportion with any BPCS was 5.2% overall during the study period, and it increased from 0.4% in 2001 to 13.3% in 2015 (Fig. A). Median time from the first BPCS encounter to death was 10 days (interquartile range, 3 to 39), and it increased from 6 days in 2001 to 12 days in 2015. Most (84.3%) BPCS encounters occurred during hospital admissions (Fig. B), and this proportion did not significantly change over time. Although the number of BPCS claims increased over time for any specialty, there was a relative increase in claims billed by nurse practitioners (from 7.9% in 2001/05, to 29.7% in 2011/15) or palliative care specialists (from 0% to 15.6%, respectively). Use of early BPCS remained rare, but increased from 0.2% in 2001 to 4.3% in 2015. Overall, early BPCS constituted 28.5% of all first BPCS. A relatively higher proportion of early BPCS occurred in the ambulatory setting (15.0%). In the comparative cohort of patients who survived &gt;30 days from diagnosis (N=120,741, Table), the use of early BPCS (1.7% overall) was more frequent in acute leukemia than in other histologies, adjusting for other factors. It was also significantly more frequent among Black patients, those with higher comorbidity indices or poor performance statuses, and those who received active chemotherapy at any point. Presence of early BPCS was associated with significantly improved EOL care quality metrics, including higher rates of hospice use, longer hospice length of stay, and lower use of aggressive measures, like repeated hospitalizations, admissions to the intensive care unit, and receipt of chemotherapy in the last 14 days of life (see Table). Early BPCS were also associated with significantly lower average Medicare spending in the last 30 days of life (marginal means $21,380 with and $23,651 without early BPCS, P&lt;.001). Conclusion: Use of BPCS among Medicare beneficiaries with hematologic malignancies has increased steeply in recent years, but most encounters still occur within days of death in the inpatient setting. This pattern potentially limits the benefits that could be achieved for patients and their caregivers with earlier institution of palliative care. Early BPCS are associated with better EOL care quality metrics similar to those observed in solid tumors, but causation remains uncertain in retrospective claims data, especially given known underutilization of palliative care billing codes in non-terminal patients. Our results support the need for prospective trials of early palliative care for patients with hematologic malignancies, and for research about the barriers to early access to palliative care that may be specific to this patient population. Disclosures LeBlanc: Pfizer Inc: Consultancy; Heron: Membership on an entity's Board of Directors or advisory committees; Daiichi-Sankyo: Membership on an entity's Board of Directors or advisory committees; CareVive: Consultancy; Agios: Honoraria, Membership on an entity's Board of Directors or advisory committees, Speakers Bureau; Medtronic: Membership on an entity's Board of Directors or advisory committees; Otsuka: Consultancy, Membership on an entity's Board of Directors or advisory committees; Helsinn: Consultancy; Astra Zeneca: Consultancy, Research Funding; Amgen: Membership on an entity's Board of Directors or advisory committees; AbbVie: Membership on an entity's Board of Directors or advisory committees; Seattle Genetics: Consultancy, Research Funding; American Cancer Society: Research Funding; Duke University: Research Funding; Jazz Pharmaceuticals: Research Funding; NINR/NIH: Research Funding; Flatiron: Consultancy; Celgene: Honoraria. Olszewski:Genentech: Research Funding; TG Therapeutics: Research Funding; Adaptive Biotechnologies: Research Funding; Spectrum Pharmaceuticals: Research Funding.


2020 ◽  
Vol 30 (Supplement_5) ◽  
Author(s):  
A Scacchi ◽  
P Berchialla ◽  
M Dalmasso ◽  
M M Gianino

Abstract Background Home-based Palliative Care (HPC) ensures multi-disciplinary medical, nursing, rehabilitation and psychological assistance for people with severe disabilities or with progressive end-stage disorders like cancer, promoting the continuity of care in home setting. Emergency Department (ED) visits in palliative care patients are considered an indicator of poor quality in home care services, since ED visits in these patients are not essential and potentially avoidable. There is still no agreement in literature about the efficacy of HPC in reducing the use of ED. However, recent studies demonstrated that HPC increases patient satisfaction while reducing use of medical services like ED, symptom burden and medical costs. The objective of this study was to evaluate if patients assisted by HPC have a reduction of ED visits compared to the 90-day period before HPC admission. Methods A retrospective study using the administrative regional database of Piedmont (Italy) was conducted on the cohort of 4433 patients admitted to HPC from 2013 to 2018. ED visits during period A (90-days before HPC) and period B (during HPC) were compared for each patient, taking into account avoidable or unavoidable visits based on triage examination. Results During period A, patients had 2880 ED visits, 1934 were considered avoidable (67%). During period B, 2050 ED visits were recorded, 994 were considered avoidable (48%). Patients receiving HPC had a reduction of overall ED visits (IRR 0.87, IC 95% 0.82-0.92) as well as avoidable ED visits (IRR 0.63, IC 95% 0.58-0.67). Unavoidable ED visits increased during HPC (IRR 1.36, IC 95% 1.24-1.49), as a consequence of disease progression. Conclusions Home-based Palliative Care is associated with a significant reduction of the use of overall Emergency Department visits (-13%) and ED avoidable visits (-37%). Since it reduces medical care costs and burden of patients and caregivers at the end of life, Home-based Palliative Care delivery should be increased. Key messages Home-based Palliative Care is associated with a reduction of the use of overall Emergency Department visits and avoidable ED visits, reducing medical care costs and burden of patients and caregivers. Home-based Palliative Care delivery should be encouraged and increased, aiming to an early enrolment as well as an increase of the patients.


2020 ◽  
Vol 34 (4) ◽  
pp. 513-523 ◽  
Author(s):  
Deokhee Yi ◽  
Bridget M Johnston ◽  
Karen Ryan ◽  
Barbara A Daveson ◽  
Diane E Meier ◽  
...  

Background: Care costs rise towards the end of life. International comparison of service use, costs and care experiences can inform quality and improve access. Aim: The aim of this study was to compare health and social care costs, quality and their drivers in the last 3 months of life for older adults across countries. Null hypothesis: no difference between countries. Design: Mortality follow-back survey. Costs were calculated from carers’ reported service use and unit costs. Setting: Palliative care services in England (London), Ireland (Dublin) and the United States (New York, San Francisco). Participants: Informal carers of decedents who had received palliative care participated in the study. Results: A total of 767 questionnaires were returned: 245 in England, 282 in Ireland and 240 in the United States. Mean care costs per person with cancer/non-cancer were US$37,250/US$37,376 (the United States), US$29,065/US$29,411 (Ireland), US$15,347/US$16,631 (England) and differed significantly ( F = 25.79/14.27, p < 0.000). Cost distributions differed and were most homogeneous in England. In all countries, hospital care accounted for > 80% of total care costs; community care 6%–16%, palliative care 1%–15%; 10% of decedents used ~30% of total care costs. Being a high-cost user was associated with older age (>80 years), facing financial difficulties and poor experiences of home care, but not with having cancer or multimorbidity. Palliative care services consistently had the highest satisfaction. Conclusion: Poverty and poor home care drove high costs, suggesting that improving community palliative care may improve care value, especially as palliative care expenditure was low. Major diagnostic variables were not cost drivers. Care costs in the United States were high and highly variable, suggesting that high-cost low-value care may be prevalent.


Death Studies ◽  
2017 ◽  
Vol 42 (6) ◽  
pp. 362-370 ◽  
Author(s):  
John P. Rosenberg ◽  
Debbie Horsfall ◽  
Rosemary Leonard ◽  
Kerrie Noonan

2020 ◽  
pp. 073346482097643
Author(s):  
Kyuho Lee ◽  
Marina Revelli ◽  
Daniel Dickson ◽  
Patrik Marier

Policy makers, practitioners, and scholars are increasingly examining the types of care services (formal vs. informal) offered to older adults. This study evaluates predictors of these adults’ preferences for care types in Québec, Canada, based on a province-wide survey inserted in a magazine of the largest seniors’ club in Canada (FADOQ). More than twice as many respondents indicated a preference for formal rather than informal care. Multinomial logistic regressions demonstrate that older adults’ past and current experiences and perceptions of formal and informal services continue to play an important role in their preference formation regarding care services. The study determined that preferring informal care is significantly more prevalent when one is accustomed to this type of care, and that men are significantly more likely to prefer informal care than women, and that lower-income individuals are less likely to favor formal care.


2007 ◽  
Vol 33 (6) ◽  
pp. 307-316 ◽  
Author(s):  
David A. Gould ◽  
Joanne Lynn ◽  
Deborah Halper ◽  
Sarah K. Myers ◽  
Lin Simon ◽  
...  

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