Dataset Information

Variations in the quality and costs of end-of-life care, preferences and palliative outcomes for cancer patients by place of death: the QUALYCARE study.

ABSTRACT:

Background

Emerging trends and new policies suggest that more cancer patients might die at home in the future. However, not all have equal chances of achieving this. Furthermore, there is lack of evidence to support that those who die at home experience better care and a better death than those who die as inpatients. The QUALYCARE study aims to examine variations in the quality and costs of end-of-life care, preferences and palliative outcomes associated with dying at home or in an institution for cancer patients.

Methods/design

Mortality followback survey (with a nested case-control study of home vs. hospital deaths) conducted with bereaved relatives of cancer patients in four Primary Care Trusts in London. Potential participants are identified from death registrations and approached by the Office for National Statistics in complete confidence. Data are collected via a postal questionnaire to identify the informal and formal care received in the three months before death and the associated costs, relatives' satisfaction with care, and palliative outcomes for the patients and their relatives. A well-established questionnaire to measure relatives' views on the care integrates four brief and robust tools - the Client Service Receipt Inventory, the Palliative Outcome Scale, the EQ-5 D and the Texas Revised Inventory of Grief. Further questions assess patients and relatives' preferences for place of death. The survey aims to include 500 bereaved relatives (140 who experienced a home death, 205 a hospital death, 115 a hospice death and 40 a nursing home death). Bivariate and multivariate analyses will explore differences in place of death and place of end-of-life care, in preferences for place of death, patients' palliative outcomes and relatives' bereavement outcomes, in relation to place of death. Factors influencing death at home and the costs of end-of-life care by place of death will be identified.

Discussion

Collecting data on end-of-life care retrospectively from bereaved relatives has ethical, practical and scientific challenges. QUALYCARE has been carefully designed to address these challenges in a robust and ethically sound population-based survey. By discovering variations in the underlying individual reality of place of death for people dying from cancer and their families, this study will advance our understanding of end-of-life care and, we hope, improve care for cancer patients and their families in the future.

Trial registration

National Institute of Health Research (NIHR) Clinical Research Network Portfolio. UKCRN7041.

SUBMITTER: Gomes B

PROVIDER: S-EPMC2919503 | biostudies-literature | 2010 Aug

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Variations in the quality and costs of end-of-life care, preferences and palliative outcomes for cancer patients by place of death: the QUALYCARE study.

Gomes Barbara B McCrone Paul P Hall Sue S Koffman Jonathan J Higginson Irene J IJ

BMC cancer 20100802

<h4>Background</h4>Emerging trends and new policies suggest that more cancer patients might die at home in the future. However, not all have equal chances of achieving this. Furthermore, there is lack of evidence to support that those who die at home experience better care and a better death than those who die as inpatients. The QUALYCARE study aims to examine variations in the quality and costs of end-of-life care, preferences and palliative outcomes associated with dying at home or in an insti ...[more]

PMID: 20678203

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Project description:ObjectivesTo determine whether the receipt of chemotherapy among terminally ill cancer patients months before death was associated with patients' subsequent intensive medical care and place of death.DesignSecondary analysis of a prospective, multi-institution, longitudinal study of patients with advanced cancer.SettingEight outpatient oncology clinics in the United States.Participants386 adult patients with metastatic cancers refractory to at least one chemotherapy regimen, whom physicians identified as terminally ill at study enrollment and who subsequently died.Main outcome measuresPrimary outcomesintensive medical care (cardiopulmonary resuscitation, mechanical ventilation, or both) in the last week of life and patients' place of death (for example, intensive care unit).Secondary outcomessurvival, late hospice referrals (≤ 1 week before death), and dying in preferred place of death.Results216 (56%) of 386 terminally ill cancer patients were receiving palliative chemotherapy at study enrollment, a median of 4.0 months before death. After propensity score weighted adjustment, use of chemotherapy at enrollment was associated with higher rates of cardiopulmonary resuscitation, mechanical ventilation, or both in the last week of life (14% v 2%; adjusted risk difference 10.5%, 95% confidence interval 5.0% to 15.5%) and late hospice referrals (54% v 37%; 13.6%, 3.6% to 23.6%) but no difference in survival (hazard ratio 1.11, 95% confidence interval 0.90 to 1.38). Patients receiving palliative chemotherapy were more likely to die in an intensive care unit (11% v 2%; adjusted risk difference 6.1%, 1.1% to 11.1%) and less likely to die at home (47% v 66%; -10.8%, -1.0% to -20.6%), compared with those who were not. Patients receiving palliative chemotherapy were also less likely to die in their preferred place, compared with those who were not (65% v 80%; adjusted risk difference -9.4%, -0.8% to -18.1%).ConclusionsThe use of chemotherapy in terminally ill cancer patients in the last months of life was associated with an increased risk of undergoing cardiopulmonary resuscitation, mechanical ventilation or both and of dying in an intensive care unit. Future research should determine the mechanisms by which palliative chemotherapy affects end of life outcomes and patients' attainment of their goals.

Project description:Background/aimsThe use and costs of health care rise substantially in the months prior to death, and although the use of palliative care services may be expected to lead to less costly care, the evidence is mixed. We analysed the costs of care over the last year of life and the extent to which these are associated with the use and duration of specialist palliative care (SPC) for decedents who died from cancer or another life-limiting illness.MethodsThe decedents were participants in a cohort study of older residents of the state of New South Wales, Australia. Using linked survey and administrative health data from 2007 to 2016, two cohorts were identified: n = 10,535 where the cause of death was cancer; and n = 11,179 where the cause of death was another life-limiting illness. Costs of various types were analysed with separate risk-adjusted linear regression models for the last 1, 3, 6, 9 and 12 months before death and for both cohorts. SPC was categorised according to time to death from first contact with the service as 1-7 days, 7-30 days, 30-180 days and more than 180 days.ResultsSPC use was higher among the cancer cohort (30.0%) relative to the non-cancer cohort (4.8%). The mean costs over the final year of life were AU$55,037 (SD 45,059) for the cancer cohort and AU$35,318 (SD 41,948) for the non-cancer cohort. Earlier use of SPC was associated with higher costs over the last year of life but lower costs in the last 1 and 3 months for both cohorts. Initiating SPC use more than 180 days before death was associated with a mean difference relative to the no SPC group of AU$15,590 (95% CI 10,617 to 20,562) and AU$13,739 (95% CI 733 to 26,746) over the last year of life for those dying from cancer and another illness, respectively. The same differences over the last month of life were - AU$2810 (95% CI - 3945 to - 1676) and - AU$4345 (95% CI - 6625 to - 2066). Admitted hospital care was the major driver of costs, with longer SPC associated with lower rates of death in hospital for both cohorts.ConclusionEarly initiation of SPC was associated with higher costs over the last year of life and lower costs over the last months of life. This was the case for both the cancer and non-cancer cohorts, and appeared to be largely attributed to reduced hospitalisation. Although further investigation is required, our results suggest that expanding the availability of SPC services to provide more equitable access could enable patients to spend more time at their usual place of residence, reduce pressure on inpatient services and facilitate death at home when that is preferred.

Project description:ImportancePalliative care has the potential to improve care for patients and families undergoing high-risk surgery.ObjectiveTo characterize the use of perioperative palliative care and its association with family-reported end-of-life experiences of patients who died within 90 days of a high-risk surgical operation.Design, setting, and participantsThis secondary analysis of administrative data from a retrospective cross-sectional patient cohort was conducted in the Department of Veterans Affairs (VA) Healthcare System. Patients who underwent any of 227 high-risk operations between January 1, 2012, and December 31, 2015, were included.ExposuresPalliative-care consultation within 30 days before or 90 days after surgery.Main outcomes and measuresThe outcomes were family-reported ratings of overall care, communication, and support in the patient's last month of life. The VA surveyed all families of inpatient decedents using the Bereaved Family Survey, a valid and reliable tool that measures patient and family-centered end-of-life outcomes.ResultsA total of 95 204 patients underwent high-risk operations in 129 inpatient VA Medical Centers. Most patients were 65 years or older (69 278 [72.8%]), and the most common procedures were cardiothoracic (31 157 [32.7%]) or vascular (23 517 [24.7%]). The 90-day mortality rate was 6.0% (5740 patients) and varied by surgical subspecialty (ranging from 278 of 7226 [3.8%] in urologic surgery to 875 of 6223 patients [14.1%] in neurosurgery). A multivariate mixed model revealed that families of decedents who received palliative care were 47% more likely to rate overall care in the last month of life as excellent than those who did not (odds ratio [OR], 1.47 [95% CI, 1.14-1.88]; P = .007), after adjusting for patient's characteristics, surgical subspecialty of the high-risk operation, and survey nonresponse. Similarly, families of decedents who received palliative care were more likely to rate end-of-life communication (OR, 1.43 [95% CI, 1.09-1.87]; P = .004) and support (OR, 1.31 [95% CI, 1.01-1.71]; P = .05) components of medical care as excellent. Of the entire cohort, 3374 patients (3.75%) had a palliative care consultation, and 770 patients (0.8%) received it before surgery. Of all decedents, 1632 (29.9%) had a palliative care consultation, with 319 (5.6%) receiving it before surgery.Conclusions and relevanceReceipt of a palliative consultation was associated with better ratings of overall end-of-life care, communication, and support, as reported by families of patients who died within 90 days of high-risk surgery. Yet only one-third of decedents was exposed to palliative care. Expanding integration of perioperative palliative care may benefit patients undergoing high-risk operations and their families.

Project description:ObjectivesTo evaluate the impact of palliative home care support on the quality of care and costs in the last 14 days of life.DesignMatched cohort study using linked administrative databases.SettingAll people who died in Belgium in 2012 (n=107 847).Participants8837 people who received palliative home care support in the last 720 to 15 days of life matched 1:1 by propensity score to 8837 people who received usual care.InterventionReceiving the allowance for palliative home patients, multidisciplinary palliative home care team visit or palliative nurse or physiotherapist visit at home.Main outcome measuresHome death, number of family physician contacts, number of primary caregiver contacts, hospital death, hospital admission, intensive care unit (ICU) admission, emergency department (ED) admission, diagnostic testing, blood transfusion and surgery. Total inpatient and outpatient costs. All outcomes were measured in the last 14 days of life.ResultsIn the unmatched cohort, 11 149 (13.5%) people received palliative home care support in the last 720 to 15 days of life. After matching, those using palliative home care support had, compared with those who did not, more family physician contacts (mean 3.1 [SD=6.5] vs 0.8 [SD=1.2]), more chance of home death (56.2%vs13.8%; relative risk [RR]=4.08, 95% CI 3.86 to 4.31), lower risk of hospital admission (27.4%vs60.8%; RR=0.45, 95% CI 0.43 to 0.46), ICU admission (18.3%vs40.4%; RR=0.45, 95% CI 0.43 to 0.48) or ED admission (15.2%vs28.1%; RR=0.54, 95% CI 0.51 to 0.57). Mean total costs of care were lower for those using palliative home care support (€3081 [95% CI €3025 to €3136] vs €4698 [95% CI €4610 to €4787]; incremental cost: -€1617 [p<0.001]).ConclusionsPalliative home care support use positively impacts quality of care and reduces total costs of care at the end of life in Belgium. Policy makers and healthcare practitioners should increasingly focus on communicating the existing options for palliative home care support to patients and their caregivers.

Project description:BackgroundLittle is known about the role of geographic access to inpatient palliative and end of life care (PEoLC) facilities in place of death and how geographic access varies by settlement (urban and rural). This study aims to fill this evidence gap.MethodsIndividual-level death data in 2014 (N = 430,467, aged 25 +) were extracted from the Office for National Statistics (ONS) death registry and linked to the ONS postcode directory file to derive settlement of the deceased. Drive times from patients' place of residence to nearest inpatient PEoLC facilities were used as a proxy estimate of geographic access. A modified Poisson regression was used to examine the association between geographic access to PEoLC facilities and place of death, adjusting for patients' socio-demographic and clinical characteristics. Two models were developed to evaluate the association between geographic access to inpatient PEoLC facilities and place of death. Model 1 compared access to hospice, for hospice deaths versus home deaths, and Model 2 compared access to hospitals, for hospital deaths versus home deaths. The magnitude of association was measured using adjusted prevalence ratios (APRs).ResultsWe found an inverse association between drive time to hospice and hospice deaths (Model 1), with a dose-response relationship. Patients who lived more than 10 min away from inpatient PEoLC facilities in rural areas (Model 1: APR range 0.49-0.80; Model 2: APR range 0.79-0.98) and urban areas (Model 1: APR range 0.50-0.83; Model 2: APR range 0.98-0.99) were less likely to die there, compared to those who lived closer (i.e. ≤ 10 min drive time). The effects were larger in rural areas compared to urban areas.ConclusionGeographic access to inpatient PEoLC facilities is associated with where people die, with a stronger association seen for patients who lived in rural areas. The findings highlight the need for the formulation of end of life care policies/strategies that consider differences in settlements types. Findings should feed into local end of life policies and strategies of both developed and developing countries to improve equity in health care delivery for those approaching the end of life.

Project description:Background: End-of-life discussions and documentation of preferences are especially important for older cancer patients who are at high risk of morbidity and mortality. Objective: To evaluate influence of demographic factors such as religiosity, education, income, race, and ethnicity on treatment preferences for end-of-life care. Methods: A retrospective observational study was performed on baseline data from a multisite randomized clinical trial of Dignity Therapy in 308 older cancer patients who were receiving outpatient palliative care (PC). Interviews addressed end-of-life treatment preferences, religion, religiosity and spirituality, and awareness of prognosis. End-of-life treatment preferences for care were examined, including preferences for general treatment, cardiopulmonary resuscitation (CPR), and mechanical ventilation (MV). Bivariate associations and multiple logistic regression analysis of treatment preferences with demographic and other baseline variables were conducted. Results: Our regression models demonstrated that race was a significant predictor for CPR preference and preferences for MV, although not for general treatment goals. Minority patients were more likely to want CPR and MV than whites. Men were more likely to opt for MV, although not for CPR or overall aggressive treatment, than women. Higher level of education was a significant predictor for preferences for less aggressive care at the end-of-life but not for CPR or MV. Higher level of terminal illness awareness was also a significant predictor for preferences for CPR, but not MV or aggressive care at the end-of-life. Discussion: Race was significantly associated with all three markers for aggressive care in bivariate analysis and with two out of three markers in multiple regression analysis, with minorities preferring aggressive care and whites preferring less aggressive care. Contrary to our hypothesis, income was not significantly associated with treatment preferences, whereas religion was significantly associated with all markers for aggressive care in bivariate models, but not in multiple regression models. Clinical Trial Registration Number NCT03209440.

Project description:Over the last 10 years, one of the key themes of public policy in palliative care has been achievement of choice in place of death. In Marie Curie Hospice Edinburgh a baseline audit conducted in 2006 showed that only a small proportion (18%) of patients referred to hospice services died at home. The audit also revealed that only 31% of those who expressed a preference to die at home were able to do so, whereas 91% of those who chose a setting other than home achieved their preference. Overall achievement of preferred place of death was 56%. However a significant number of patients (29%) did not have a recorded preference. A programme of quality improvement has continued over the last 7 years to improve identification, communication and achievement of preferred place of death for all patients. The mechanisms to change practice have been: changes to documentation; changes to clinical systems to support use of documentation; support for clinical staff to recognise the value of discussing preferences; and support for clinical staff to develop new skills. In addition the programme has been incorporated into local clinical strategy and this has enabled gaps in service to be addressed with a new service to support early discharge of those patients who wish to die at home. A recent audit showed that all patients had a recorded preference or a documented reason why their preference was unclarified. One third of patients died at home - nearly double the proportion that died at home in the baseline audit. Seventy one per cent of patients who wished to die at home actually died at home - a substantial increase from 31% at baseline. Achievement of preferred place of death for patients wishing to die in the hospice remained high at 88%. The focus on assessment of preference for place of death has led to substantial improvements in the identification and achievement of preference for patients dying under the care of the hospice. Furthermore, it has been associated with an increase in the overall proportion of patients who die at home.

Dataset Information

Variations in the quality and costs of end-of-life care, preferences and palliative outcomes for cancer patients by place of death: the QUALYCARE study.

Background

Methods/design

Discussion

Trial registration

Publications

Variations in the quality and costs of end-of-life care, preferences and palliative outcomes for cancer patients by place of death: the QUALYCARE study.

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