Siew Tzuh Tang

When death is imminent: where terminally ill patients with cancer prefer to die and why.

End-of-life care strives to honor terminally ill patients’ preferences regarding the way of dying. Scholars defined one domain of quality of dying and death as dying at the place of one’s choice. Despite efforts over more than two decades and more than 40 studies to investigate the influencing factors associated with the place of death for terminally ill patients with cancer, there is a notable lack of empirical data examining the reasons why terminally ill patients with cancer choose a specific setting as their preferred place of death. An exploratory and descriptive study was conducted to explore the preferences of terminally ill patients with cancer for the place of death, to identify the reasons for selecting a preferred place of death, and to examine the importance of dying at a place one prefers. A convenience sample of 180 terminally ill patients with cancer was recruited from four tertiary care hospitals and two home care programs in Connecticut. Nearly 90% of the subjects preferred to die at home. Quality of life, availability and ability of family caregivers, concerns of being a burden to others, long-standing relationships with healthcare providers, and quality of healthcare were the major considerations in decision making regarding the place of death. Terminally ill patients with cancer acknowledged dying at their preferred place of death as highly important. Effective nursing interventions need developing to facilitate death at a place that is in accord with dying patients’ preferences.

Determinants of Place of Death for Terminal Cancer Patients

Approximately two-third of cancer patients, when asked about the preferred place of death, wish to die in their own homes. However, the majority of deaths from cancers in most western countries occur in a hospital. When a person dies from other than sudden or traumatic causes, the death appears to be a function of a complex interplay of personal and cultural values and physical and medical factors, as well as various health care systems forces. This article reviews the determinants of place of death for terminal cancer patients from published studies in hopes of shedding light on the difficulties of dying patients to realize their preferences for place of death. These insights may contribute to modification of hospice care systems so health professionals will be more responsive to the needs of their dying patients to retain control and die with dignity and help health professionals achieve the proposed outcome of hospice care.

Determinants of Aggressive End-of-Life Care for Taiwanese Cancer Decedents, 2001 to 2006

PURPOSE To assess the association between aggressiveness of end-of-life (EOL) care and patient demographics, disease characteristics, primary physicians 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.

Trends in quality of end-of-life care for Taiwanese cancer patients who died in 2000-2006

BACKGROUND Quality of end-of-life care received by cancer patients has never been explored in an entire Asian country for all ages and cancer groups. PATIENTS AND METHODS Retrospective cohort study to examine trends in quality of end-of-life care among a cohort of 242 530 Taiwanese cancer patients who died in 2000-2006. RESULTS In the last month of life, cancer care tended to become increasingly aggressive as shown by (i) intensive use of chemotherapy (15.45%-17.28%), (ii) frequent emergency room visits (15.69%-20.99%) and >14-day hospital stays (41.48%-46.20%), (iii) admissions to intensive care units (10.04%-12.41%), and (iv) hospital deaths (59.11%-65.40%). Use of cardiopulmonary resuscitation (13.09%-8.41%), intubation (26.01%-21.07%), and mechanical ventilation (27.46%-27.05%) decreased, whereas use of hospice services increased considerably (7.34%-16.83%). Among those receiving hospice services, rates of referrals to hospice services in the last 3 days of life decreased from 17.88% to 17.13% but remained steady after adjusting for selected covariates. CONCLUSIONS The quality of end-of-life care for Taiwanese cancer decedents was substantially inferior to that previously reported and to that recommended as benchmarks for not providing overly aggressive care near the end of life.

Meanings of dying at home for Chinese patients in Taiwan with terminal cancer: a literature review.

To maintain dignity, patients with terminal cancer must be able to do things in their own way, to make their own decisions, and to preside over their own dying. Among the tasks considered essential for patients with terminal cancer is deciding where they prefer to die. The actual place of death has been recognized in hospice care as indicating quality of care. Approximately two-thirds of patients with cancer, when asked about the preferred place of death, say they wish to die in their own homes. Patients with terminal cancer dying at home may find physical and emotional comfort there. Home is a place where people may feel safety and a sense of belonging. In dying at home, patients with terminal cancer also may have a greater chance to control their environment, more autonomy and privacy, and a sense of normality. In this article, special cultural meaning of dying at home for the Chinese patient and the family is reviewed. It is essential for health care professionals to understand Chinese cultural beliefs and values related to dying at home in order to provide culturally sensitive care for Chinese dying patients and their families and to enhance their sense of control over the unknown process of dying.

Factors associated with depressive distress among Taiwanese family caregivers of cancer patients at the end of life

Family caregivers in East Asian countries are known to have a strong sense of filial piety and a traditional caregiving ideology. They are generally presumed to be protected from psychological distress arising from caregiving. However, there is scant information regarding the impact of caregiving on Chinese/Taiwanese families. The purpose of this study was aimed at identifying those family caregivers of Taiwanese terminally ill cancer patients who are at risk of experiencing depressive distress from the following three categories of predisposing factors: 1) contextual factors; 2) stressors; and 3) appraisal of the caregiving situation. Of the 170 Taiwanese family caregivers of terminally ill cancer patients that participated in this survey, 129 (75.9%) were at an extraordinarily high risk of being distressed because of depressive symptoms (CES-D > 15). Results indicated that family caregivers were vulnerable to clinically depressive distress if they were the patients spouse (adjusted odds ratio (AOR): 2.89; 95% confidence interval (CI): 1.19—7.01), or evaluated caregiving as imposing a greater negative impact on their own health (AOR: 1.27; 95% CI: 1.09—1.47). In contrast, if family caregivers felt very confident in their knowledge of how to take care of the patient at home (AOR: 0.35; 95% CI: 0.15—0.81), or were sufficiently aware of the patients thoughts and feelings about disease experiences and symptoms (AOR: 0.47; 95% CI: 0.25—0.88), they were less likely to suffer from depressive distress. These finding have significant clinical implications when they are put into the context of Confucian cultures which place great emphasis on filial piety and familism. Interventions and policy should be developed to target spousal caregivers to enhance their confidence in caregiving and understanding of the patients disease experiences. This will reduce the negative caregiving impact on the caregivers health, which in turn may prevent the development of depressive distress among family caregivers. Palliative Medicine 2007; 21: 249—257

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

BackgroundFamily 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.MethodsA prospective, longitudinal study was conducted among 167 FCs. Trajectory and determinants of FCs’ QOL were identified by a generalized estimation equation (GEE).ResultsCaregiving 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.ConclusionTaiwanese 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.

Instrument translation and evaluation of equivalence and psychometric properties: The Chinese sense of coherence scale

Translating well-established English instruments into target languages other than English and testing cross-cultural validity to prove that the same attributes are being measured in each cultural group or country are required before a multicultural or international study can be conducted and cross-cultural comparisons of study results can be applied. However, rigorous and systematic cross-cultural efforts to test the effectiveness of specific translation methods are rare. This article presents a model of translation processes and empirical validation of the translated instrument through description of the translation of a selected instrument—the Sense of Coherence (SOC) Scale—from English into Chinese. A cyclic process of forward translations, back translations, and expert evaluation of equivalence by bilingual and English speaking experts was conducted to achieve conceptual equivalence between the original and translated instruments. Empirical validation of the Chinese SOC scale data from a group of bilingual Chinese people demonstrated non-identical, but comparable, item and scale means and variances, internal consistency, and relationships to an external criterion. Advantages and difficulties of using multi-rounds, multi-experts, and multi-methods to establish translation equivalence and to validate the translated Chinese SOC scale are discussed.

Influencing factors of place of death among home care patients with cancer in Taiwan

Multiple factors, including personal and cultural values, physical and medical factors, and various healthcare systems’ forces, influence the place of death of patients with cancer. The purpose of this retrospective chart audit study was to examine the influence of sociodemographic factors, family support, patient functioning, and care needs on the place of death for patients with cancer served by a home care program in Taiwan. Among the 264 study patients, 182 (69%) died at home and 82 (31%) died in the hospital. Significant differences were found between patients dying at home or in a hospital predominantly in the categories of patient functioning and care needs. From the multivariate logistic regression model, home care patients with cancer who were never rehospitalized, who received more home care visits, and who were referred to home care services at the greatest functionally dependent status and with pain were more likely to die at home. Overall, this model could accurately classify 78% of the place of death, which is higher than other published studies. Understanding factors that influence place of death of terminally ill patients with cancer allow healthcare professionals to modify healthcare systems and tailor effective interventions to help patients die at the place they prefer.

Meta-analysis of cultural differences in Western and Asian patient-perceived barriers to managing cancer pain:

Purpose: barriers to managing cancer pain contribute to cancer patients’ reluctance to report pain and use prescribed analgesics, resulting in inadequate pain control. Patients’ perceived barriers to managing cancer pain may be influenced by culture. This meta-analysis compared differences in Western and Asian patient-perceived barriers to managing cancer pain. Methods: the literature was systematically reviewed to compare pain barriers in Western and Asian cancer patients in 22 studies that used Ward’s Barrier Questionnaire. Differences in weighted barrier scores were compared by meta-regression analysis. Results: Asian cancer patients had higher barrier scores than Western patients, except for barriers of ‘good patient’, ‘side effects’, ‘distract physician’, ‘fear of injections’, and ‘addiction’. Meta-regression analysis indicated that Asian patients’ perceived pain barriers differed significantly from those of Western patients for disease progression (weighted mean difference [WMD] = 1.32; 95% confidence interval [CI] 0.80, 1.84, p < 0.0001), tolerance (WMD = 1.63; 95% CI 0.91, 2.36, p < 0.0001), fatalism (WMD = 0.89; 95% CI 0.28, 1.52, p = 0.004), and total score (WMD = 0.82; 95% CI 0.36, 1.28, p < 0.0001). Conclusion: Asian patients’ perceived barriers to managing cancer pain were significantly higher than those for Western patients (especially for concerns about disease progression, tolerance, and fatalism). Asian cancer patients need to be assessed and carefully treated for perceived barriers to optimize cancer pain management.