Concordance of Preferences for End-of-Life Care Between Terminally Ill Cancer Patients and Their Family Caregivers in Taiwan

There is a dearth of information in the literature about the concordance of preferences for endof- life care between terminally ill patients & their family surrogates outside the Western countries. The purpose of this study was to examine the extent of concordance in preferences for end-of-life care goals & life-sustaining treatments between Taiwanese terminally ill cancer patients & their primary family caregivers. A total of 617 dyads of patients--family caregivers across 21 hospitals throughout Taiwan were surveyed. Overall agreements on the goals for end-of-life care & preferences for initiating life-sustaining treatments ranged from 62.4% to 96.9% (average: 71.0%). Kappa values for the extent of concordance ranged from 0.13 to 0.46 (average: 0.29), indicating poor to moderate consistency in personal preferences. Family caregivers had a significantly more aggressive attitude toward each examined life-sustaining treatment for their ill family members than the patients’ own stated preferences. In societies, such as in Asian countries, where physicians’ respect for patient autonomy is frequently subordinate to the power of family, disagreements between a patient & family about end-of-life care may result in the patient’s preferences being overridden at the end of life. To effect real change & to gain increased agreement on preferences for endof- life care, an open dialogue between patients & their primary family caregivers should become standard. J Pain Symptom Manage 2005;30:510--518

DISCREPANCY IN THE PREFERENCES OF PLACE OF DEATH BETWEEN TERMINALLY ILL CANCER PATIENTS AND THEIR PRIMARY FAMILY CAREGIVERS IN TAIWAN

There is a worldwide common preference for dying at home. However, death at home does not come without significant challenges and potential consequences for families. Given the interactive nature of decisions regarding the place of death, the family's perspective is important and needs to be investigated. The purposes of this study were to compare (1 ) Taiwanese terminally ill cancer patients’ and their family caregivers’ preferences for the patient's place of death; and (2) important factors that are considered in choosing the preferred place of death from both points of view. A total of 617 dyads of terminally ill cancer patients and their family caregivers were surveyed. The majority of both terminally ill cancer patients and their family caregivers preferred to die at home (61.0% and 56.9%, respectively). A higher proportion of the family caregivers indicated a preference for hospital death for the patients. There was a moderate association between the two respondents in the preferences of place of death. Results underscore discrepancies between patients and their families in the importance given to cultural concerns, quality of health care, worries of being a burden to others, lack of availability of families, relationships with health care providers, and being surrounded by the home environment. Effective interventions need to be developed which can lighten the caregiving burden and help families retain dying patients at home, avoid unnecessary re-hospitalizations and unfavorable hospital deaths, and improve accordance with the patient's wishes

Trajectory and Determinants of the Quality of Life of Family Caregivers of Terminally Ill Cancer Patients in Taiwan

Background Family caregiving is common and important in Taiwanese culture . However, the combination of anticipated loss, prolonged psychological distress, and the physical demands of caregiving can seriously compromise the quality of life (QOL) of a family caregiver (FC). The effect of caring for a dying cancer patient on a FC's QOL has been explored in western countries-primarily with small sample sizes or short-term follow-ups-but has not yet been investigated in Taiwan. Therefore, the purposes of this study were to: (1) identify the trajectory of the QOL of FCs of terminally ill cancer patients in Taiwan; and (2) investigate the determinants of the QOL of FCs, in a large sample and with longer follow-ups, until the patient dies. Methods A prospective, longitudinal study was conducted among 167 FCs. Trajectory and determinants of FCs' QOL were identified by a generalized estimation equation (GEE). Results Caregiving for a terminally ill cancer patient extracts a toll from a FC's QOL and causes it to deteriorate significantly over time. The results from the multivariate GEE analysis indicated that this deterioration of a FC's QOL reflects the patient's increasing distress from symptoms, the gradual loss of confidence in caregiving and an increased subjective caregiving burden on the FC as the patient's death approaches, and a weaker psychological resource (i.e., sense of coherence) of the FC. Conclusion Taiwanese FCs' QOL deteriorated significantly as the patient 's death approached. This study contributes to the family caregiving literature by using longitudinal data to confirm that the available psychological resource of a FC and the 'appraisals of caregiving' are more salient in determining a FC's QOL than the patient's/FC's characteristics and the caregiving demands

CONCORDANCE OF PREFERENCES FOR END- OF-LIFE CARE BETWEEN TERMINALLY ILL CANCER PATIENTS AND THEIR FAMILY CAREGIVERS IN TAIWAN

There is a dearth of information in the literature about the concordance of-life care between terminally ill patients and their family surrogates outside the Western countries. The purpose of this study was to examine the extent of concordance, in preferences for end-of-life care goals and life-sustaining treatments between 1 Taiwanese terminally ill cancer patients and their primary family caregivers. A total of 617 dyads of patients-family caregivers across 21 hospitals throughout Taiwan were surveyed. Overall agreements on the or end-of-life care and preferences for initiating life-sustaining treatment ranged front goals for end-of-life care and preferences for initiating life- sustaining treatments ranged from 62.4% to 96.9% (average: 71.0%). Kappa values for the extent of concordance ranged from 0.1.3 to 0.46 (average: 0.29), indicating poor to moderate consistency in personal preferences. Family caregivers had a significantly more aggressive attitude toward each examined life-sustaining treatment for their ill family members than the patients' own stated preferences. In societies, such as in Asian countries, where physicians' respect for patient autonomy is frequently subordinate to the power of family, disagreements between a patient and family about end-of-life care may result in the patients' preferences being overridden at the end-of-life care, an open dialogue between patients and their primary family caregivers should become standard

2010, Propensity For Home Death Among Taiwanese Cancer Decedents, 2001-2006 Determined By Services Received At End Of Life

[[abstract]]CONTEXT: The discrepancy between patients' preferred and actual place of death highlights the dilemma inherent in achieving their preferences for home death. Research on determinants of home death has been limited largely by focusing on individual-level factors and somewhat on health care resources at the primary hospital and regional levels. OBJECTIVES: To investigate factors associated with home death, specifically, services received by cancer patients at the end of life (EOL). METHODS: This was a retrospective cohort study using administrative data from 201,201 Taiwanese cancer decedents in the period 2001-2006. RESULTS: Rates of home death decreased significantly over time (from 35.67% to 32.39%). Dying at home was associated with patient demographics (gender, age, and marital status) and disease characteristics (cancer type, metastatic status, postdiagnosis survival time, and comorbidity level). Taiwanese cancer patients were less likely to die at home if they received care from a medical oncologist and in hospitals or regions with abundant health care resources. Furthermore, Taiwanese cancer patients were less likely to die at home if they used life-sustaining treatments (intensive care unit care, cardiopulmonary resuscitation, intubation, and mechanical ventilation) in the last month of life. However, multiple emergency room visits in the last month of life and receiving hospice care increased Taiwanese cancer patients' propensity to die at home. CONCLUSION: Despite the causal ambiguity in interpreting our research findings, they indicate that using life-sustaining treatments at EOL not only exacts a substantial toll from patients, family members, and society, but also decreases the likelihood of dying at home

Aggressive End-of-Life Care Significantly Influenced Propensity for Hospice Enrollment Within the Last Three Days of Life for Taiwanese Cancer Decedents

[[abstract]]CONTEXT: Late hospice enrollment exacts a substantial toll from patients, families, hospices, and society. The relationship between the propensity for late hospice enrollment and aggressive health services received at the end of life (EOL) has been underinvestigated. OBJECTIVES: To identify determinants of hospice enrollment within the last three days of life. METHODS: Retrospective population-based cohort study using administrative data for 31,529 Taiwanese cancer decedents who used hospice care in their last year of life. RESULTS: Rates of hospice enrollment within the last three days of life (16.80%-18.73%) remained constant over 2001-2006. After adjustment for patient demographics and disease characteristics, physician specialty, availability of health care resources at the hospital and regional levels, and historical trends, late hospice enrollment was more likely if Taiwanese cancer patients received chemotherapy, had multiple emergency room visits or hospital admissions, and used the intensive care unit in their last month of life (adjusted odds ratio [95% confidence interval] (AOR [95% CI]): 1.61 [1.44-1.80], 1.40 [1.29-1.52], 1.78 [1.51-2.09], and 1.45 [1.19-1.76], respectively). Late hospice enrollment was less likely for patients with hospital stays>14 days or who received cardiopulmonary resuscitation in their last month of life (AOR [95% CI]: 0.51 [0.45-0.58] and 0.41 [0.25-0.65], respectively). CONCLUSION: Aggressive EOL care played a more significant role than patient, physician, or hospital characteristics in determining the propensity of Taiwanese cancer patients to be enrolled in hospice care within their last three days of life. Clinical and health policies should aim to avoid aggressive care when it will not benefit patients but may preclude timely hospice enrollment

Prognostic Disclosure and its Influence on Cancer Patients

Background: Prognostic disclosure is a show of respect for patient autonomy. Only patients who are aware of their prognosis can participate in discussions about their medical condition and make decisions that meet their individual preferences. Despite the abundant literature on this topic, no systematic estimates of prognostic disclosure in cancer patients are available and relatively little research has focused on the impact of prognostic awareness and disclosure on cancer patients. Methods: The literature on prognostic awareness and disclosure in cancer patients was systematically reviewed and subjected to a meta-analysis. Results: The literature search retrieved 25 articles for meta-analysis. The pooled proportion of preferences for prognostic information and prognostic disclosure was calculated. Most cancer patients expressed a preference for prognostic disclosure [84.6%, 95% confidence interval (CI) 74.1%-91.4%)], but only about half were told their prognosis (49.3%, 95% CI 36.4%- 62.3%). These results indicate a gap between cancer patients’ preferences for prognostic disclosure and their actual receipt of prognosis. Cancer patients who are not told their prognosis may have several negative consequences, including inappropriate prognostic awareness, receiving futile treatment at the end of life, being unprepared for death, increased psychological and mental distress as well as social and spiritual suffering, and decreased quality of life. The discrepancy between patients’ preferred and actual prognostic disclosure is primarily due to physicians’ difficulty in revealing the prognosis; this difficulty stems from inaccurate estimates of prognosis, attitudes of beneficence and maintaining patients’ hope, lack of good communication skills, and not knowing patients’ preferences for prognostic information. Conclusions: In order to close the gap between patients’ preferences for prognostic disclosure and actual receipt of prognostic information, healthcare professionals should develop interventions to overcome the physicians’ difficulty in revealing prognosis, thus facilitating cancer patients’ awareness of prognosis and providing high quality end-of-life care

Determinants of aggressive end-of-life care for Taiwanese cancer decedents, 2001 to 2006

[[abstract]]PURPOSE: To assess the association between aggressiveness of end-of-life (EOL) care and patient demographics, disease characteristics, primary physician's specialty, hospital characteristics, and availability of health care resources at the hospital and regional levels in Taiwan for a cohort of 210,976 cancer decedents in 2001 to 2006. METHODS: This retrospective cohort study examined administrative data. Aggressiveness of EOL care was examined by a composite measure adapted from Earle et al. Scores range from 0 to 6, with higher scores indicating more aggressive EOL care. RESULTS: The mean composite score for aggressiveness of EOL care was 2.04 (mean) +/- 1.26 (standard deviation), increasing from 1.96 +/- 1.26 in 2001 to 2.10 +/- 1.26 in 2006. Each successive year of death significantly increased the composite score. Cancer decedents received more aggressive EOL care if they were male, younger, single, had a higher level of comorbidity, had more malignant and extensive diseases or hematologic malignancies, were cared for by oncologists, and received care in a hospital with a greater density of beds. CONCLUSION: Controlling for patient demographics and cormorbidity burden, EOL care in Taiwan was more aggressive for patients with cancer with highly malignant and extensive diseases, for patients with oncologists as primary care providers, or in hospitals with abundant health care resources. Health policies should aim to ensure that all patients receive treatments that best meet their individual needs and interests and that resources are devoted to care that produces the greatest health benefits

Impact of age on end-of-life care for adult Taiwanese cancer decedents, 2001–2006

[[abstract]]Background: With increasing patient age in Western countries, evidence indicates a pervasive pattern of decreasing healthcare expenditures and less aggressive medical care, including end-of-life (EOL) care. However, the impact of age on EOL care for Asian cancer patients has not been investigated.Purpose: To explore how healthcare use at EOL varies by age among adult Taiwanese cancer patients.Methods: Retrospective cohort study using administrative data among 203,743 Taiwanese cancer decedents, 2001–2006. Age was categorized as 18–64, 65–74, 75–84, and ≥85 years.Results: Elderly (≥65 years) Taiwanese cancer patients were significantly less likely than those 18–64 years to receive aggressive treatment in their last month of life, including chemotherapy, >1 emergency room visits, >1 hospital admissions, >14 days of hospitalization, hospital death, intensive care unit admission, cardiopulmonary resuscitation, intubation, and mechanical ventilation. However, they were significantly more likely to receive hospice care in their last year of life.Conclusion: Elderly Taiwanese cancer patients at EOL received less chemotherapy, less aggressive management of health crises associated with the dying process, and fewer life-extending treatments, but they were more likely to receive hospice care in their last year and to achieve the culturally highly valued goal of dying at home

Trajectory and determinants of the quality of life of family caregivers of terminally ill cancer patients in Taiwan.

[[abstract]]BACKGROUND: Family caregiving is common and important in Taiwanese culture. However, the combination of anticipated loss, prolonged psychological distress, and the physical demands of caregiving can seriously compromise the quality of life (QOL) of a family caregiver (FC). The effect of caring for a dying cancer patient on a FC's QOL has been explored in western countries--primarily with small sample sizes or short-term follow-ups--but has not yet been investigated in Taiwan. Therefore, the purposes of this study were to: (1) identify the trajectory of the QOL of FCs of terminally ill cancer patients in Taiwan; and (2) investigate the determinants of the QOL of FCs, in a large sample and with longer follow-ups, until the patient dies. METHODS: A prospective, longitudinal study was conducted among 167 FCs. Trajectory and determinants of FCs' QOL were identified by a generalized estimation equation (GEE). RESULTS: Caregiving for a terminally ill cancer patient extracts a toll from a FC's QOL and causes it to deteriorate significantly over time. The results from the multivariate GEE analysis indicated that this deterioration of a FC's QOL reflects the patient's increasing distress from symptoms, the gradual loss of confidence in caregiving and an increased subjective caregiving burden on the FC as the patient's death approaches, and a weaker psychological resource (i.e., sense of coherence) of the FC. CONCLUSION: Taiwanese FCs' QOL deteriorated significantly as the patient's death approached. This study contributes to the family caregiving literature by using longitudinal data to confirm that the available psychological resource of a FC and the 'appraisals of caregiving' are more salient in determining a FC's QOL than the patient's/FC's characteristics and the caregiving demands