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Living at the end-of-life: experience of time of patients with cancer.

ABSTRACT: BACKGROUND:The aim of this study was to gain insight into the experience of time of terminal patients with cancer. Experience of time is relevant in palliative care in both policy and practice. On a policy level, the Quality Adjusted Life Year (QALY), the most used outcome measure for cost-effectiveness analysis in healthcare, assumes time to be a linear and additive variable, which is one of the reasons that its applicability in palliative care is questioned. On a practice level, a better understanding of the experience of time of patients with limited time left, could help to recognize if and how these patients can have a more meaningful use of time. The main focus of this study was to discover whether time perception of these patients in their last months of life had changed as compared to earlier periods of time in their lives in good physical health. The pace of time and time dominance (comparison of past, present and future) were investigated. METHODS:In several hospices and palliative care units in the Netherlands, twelve semi-structured interviews were conducted with terminal patients with cancer. RESULTS:Time perception at the end of life had changed for most participants. They all lived on a day-to-day basis in the terminal phase, independent of their way of life in the healthy phase. Furthermore, the experienced duration of a day turned out to be very different between patients, but also between days, depending on daily activities. Besides, for most patients for whom the future was the dominant period of time in the healthy phase, the dominant period of time in the terminal phase had become the past. CONCLUSIONS:Time perception of terminal patients with cancer differed from the time perception in their relatively healthy phase of life. This suggests that the LY part of the QALY is not comparable for all phases of life.

SUBMITTER: Rovers JJE

PROVIDER: S-EPMC6518794 | biostudies-literature | 2019 May

REPOSITORIES: biostudies-literature

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Living at the end-of-life: experience of time of patients with cancer.

Rovers Jordy Johannes Eduardus JJE Knol Elze Jantien EJ Pieksma Jelte J Nienhuis Wytse W Wichmann Anne Barbara AB Engels Yvonne Y

BMC palliative care 20190514 1

<h4>Background</h4>The aim of this study was to gain insight into the experience of time of terminal patients with cancer. Experience of time is relevant in palliative care in both policy and practice. On a policy level, the Quality Adjusted Life Year (QALY), the most used outcome measure for cost-effectiveness analysis in healthcare, assumes time to be a linear and additive variable, which is one of the reasons that its applicability in palliative care is questioned. On a practice level, a bett ...[more]

PMID: 31088442

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Project description:Summary Background Given significant morbidity and mortality associated with oesophageal cancer, supportive, high-quality end-of-life care is critical. Most patients with advanced cancer prefer to die at home, but incongruence between preferred and actual place of death is common. Here, we examined trends and disparities in location of death among patients with oesophageal cancer. Methods Using the Centers for Disease Control and Prevention Wide-Range Online Data for Epidemiologic Research database, we utilized multinomial logistic regression to assess associations between sociodemographic characteristics and location of death for patients with oesophageal cancer (n = 237,063). Additionally, we utilized linear regression models to evaluate the significance of changes in location of death trends over time and disparities in the relative change in location of death trends across sociodemographic groups. Findings From 2003 to 2019, there was a decrease of deaths in hospitals, nursing homes, and outpatient medical facilities/emergency departments and an increase of deaths at home and in hospice. Relative to White decedents, Black and Asian decedents were less likely to die at home (relative risk ratio (RRR): 0.58 [95% confidence interval (CI): 0.56–0.60], RRR: 0.57 [95% CI: 0.53–0.61]) and in hospice (RRR: 0.67 [95% CI: 0.64–0.71], RRR: 0.49 [95% CI: 0.43–0.55]) when compared to the hospital. Similar disparities were noted for American Indian and Alaska Native (AIAN) decedents. These disparities persisted even upon stratifying by the number of listed causes of death, a proxy for severity of illness. Time trend analysis indicated that increases in deaths in hospice over time occurred at a slower rate for AIAN and Asian decedents relative to White decedents. Interpretation 2 in 5 patients with oesophageal cancer die at home, with an increasing proportion dying at home and in hospice—in line with general patient preferences. However, location of death disparities have largely persisted over time among racial and ethnic minority groups. Our findings suggest the importance of improving access to advance care planning and delivering tailored, person-centred interventions. Funding None.

Project description:BackgroundThe death rate in intensive care units (ICUs) can reach 20%. More than half occurs after a decision of care withholding/withdrawal. We aimed at describing and evaluating the experience of ICU physicians and nurses involved in the end-of-life (EOL) procedure. Primary objective was the evaluation of the experience of EOL assessed by the CAESAR questionnaire. Secondary objectives were to describe factors associated with a low or high score and to examine the association between Numeric Analogic Scale and quality of EOL.MethodsConsecutive adult patients deceased in 52 ICUs were included between April and June 2018. Characteristics of patients and caregivers, therapeutics and care involved after withdrawal were recorded. CAESAR score included 15 items, rated from 1 (traumatic experience) to 5 (comforting experience). The sum was rated from 15 to 75 (the highest, the best experience). Numeric Analogic Scale was rated from 0 (worst EOL) to 10 (optimal EOL).ResultsFive hundred and ten patients were included, 403 underwent decision of care withholding/withdrawal, and among them 362 underwent effective care withdrawal. Among the 510 patients, mean CAESAR score was 55/75 (± 6) for nurses and 62/75 (± 5) for physicians (P < 0.001). Mean Numeric Analogic Scale was 8 (± 2) for nurses and 8 (± 2) for physicians (P = 0.06). CAESAR score and Numeric Analogic Scale were significantly but weakly correlated. They were significantly higher for both nurses and physicians if the patient died after a decision of withholding/withdrawal. In multivariable analysis, among the 362 patients with effective care withdrawal, disagreement on the intensity of life support between caregivers, non-invasive ventilation and monitoring and blood tests the day of death were associated with lower score for nurses. For physicians, cardiopulmonary resuscitation the day of death was associated with lower score in multivariable analysis.ConclusionExperience of EOL was better in patients with withholding/withdrawal decision as compared to those without. Our results suggest that improvement of nurses' participation in the end-of-life process, as well as less invasive care, would probably improve the experience of EOL for both nurses and physicians. Registration: ClinicalTrial.gov: NCT03392857.

Project description:BackgroundCulture shapes how people understand illness and death, but few studies examine whether acculturation influences patients' end-of-life treatment preferences and medical care.Methods and findingsIn this multi-site, prospective, longitudinal cohort study of terminally-ill cancer patients and their caregivers (n?=?171 dyads), trained interviewers administered the United States Acculturation Scale (USAS). The USAS is a 19-item scale developed to assess the degree of "Americanization" in first generation or non-US born caregivers of terminally-ill cancer patients. We evaluated the internal consistency, concurrent, criterion, and content validity of the USAS. We also examined whether caregivers' USAS scores predicted patients' communication, treatment preferences, and end-of-life medical care in multivariable models that corrected for significant confounding influences (e.g. education, country of origin, English proficiency). The USAS measure was internally consistent (Cronbach ??=?0.98); and significantly associated with US birthplace (r?=?0.66, P<0.0001). USAS scores were predictive of patients' preferences for prognostic information (AOR?=?1.31, 95% CI:1.00-1.72), but not comfort asking physicians' questions about care (AOR 1.23, 95% CI:0.87-1.73). They predicted patients' preferences for feeding tubes (AOR?=?0.68, 95% CI:0.49-0.99) and wish to avoid dying in an intensive care unit (AOR?=?1.36, 95% CI:1.05-1.76). Scores indicating greater acculturation were also associated with increased odds of patient participation in clinical trials (AOR?=?2.20, 95% CI:1.28-3.78), compared with lower USAS scores, and greater odds of patients receiving chemotherapy (AOR?=?1.59, 95% CI:1.20-2.12).ConclusionThe USAS is a reliable and valid measure of "Americanization" associated with advanced cancer patients' end-of-life preferences and care. USAS scores indicating greater caregiver acculturation were associated with increased odds of patient participation in cancer treatment (chemotherapy, clinical trials) compared with lower scores. Future studies should examine the effects of acculturation on end-of-life care to identify patient and provider factors that explain these effects and targets for future interventions to improve care (e.g., by designing more culturally-competent health education materials).

Project description:BackgroundThe objective of the current study was to determine the best set of predictors of psychological disorders, regrets, health-related quality of life, and mental health function among bereaved caregivers of patients with cancer, thereby identifying promising targets for interventions to improve bereavement adjustment.MethodsCoping with Cancer is a longitudinal study of patients with advanced cancer and their informal caregivers who were enrolled from 2002 to 2008. The main outcome measure was bereavement adjustment of 245 caregivers (eg, depression, anxiety, and regrets) 6 months after the loss of the patient. The Structured Clinical Interview of the Diagnostic and Statistical Manual of Mental Disorders determined whether caregivers met the criteria for major depressive disorder or an anxiety disorder. Changes in health-related quality of life and mental health function from baseline to after the patient's death were assessed with the Medical Outcomes Study Short Form (SF-36).ResultsGreater than 50% of the caregivers reported regret about the cancer patient's end-of-life care; better patient quality of death (adjusted odds ratio, 0.77; 95% confidence interval, 0.67-0.88) reduced the risk of bereavement regret. The incidence of major depressive disorder or anxiety among the bereaved caregivers was 12.6% and was less likely for caregivers with better mental health before the loss of the patient (adjusted odds ratio, 0.03; 95% confidence interval, 0.004-0.25). Better patient quality of death also predicted improved caregiver health-related quality of life (adjusted standardized beta, .28; P < .001). The completion of a do-not-resuscitate order was found to be predictive of improved mental health from before the death of the patient to after the death (adjusted standardized beta, .29; P < .001).ConclusionsReducing caregiver distress, encouraging advance care planning by patients, and improving patients' quality of death appear to be promising targets of interventions to improve caregiver bereavement adjustment.

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Living at the end-of-life: experience of time of patients with cancer.

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Living at the end-of-life: experience of time of patients with cancer.

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