Introduction: Existing literature on attitudes toward end-of-life care (EoLC) covers the general public but has little information on the frail elderly population. The aim of the current study is to investigate the preferences of Chinese frail elderly home residents with respect to EoLC by conducting cross-sectional surveys.
Methods and analysis: Surveys, including resident and family versions, were developed based on the existing literature and our pilot interviews. The targeted participants were 400 frail elderly home residents (aged = 65 years old) and 200 family caregivers. Purposive sampling will be used as each elderly home will help to recruit five to 15 elderly participants for the study. Descriptive analysis and modelling will be used to examine preferences on EoLC and related factors, as well as to compare the responses of elderly home residents with those of their family caregivers.
Ethics and dissemination: The cross-sectional survey has obtained approval from the Institutional Review Board. Confidentiality and safety issues will be carefully observed. The results of the study will be disseminated through international conferences, peer-reviewed academic journal publications, and a report in plain language to be shared with elderly residential homes.
Objectives: The National Health Insurance programme started providing coverage for inpatient care in palliative care (PC) units of acute care hospitals in 2000; however, initially, only PC provided to patients with terminal cancer was covered. A PC policy that enabled PC reimbursement for patients with dementia was implemented in 2009. However, the association of this PC policy with end-of-life care remains unclear. The study aims to compare the association of the PC policy with end-of-life care between patients with dementia and patients with cancer during the last 6 months of their lives.
Methods: We analysed the claims data of 7396 patients dying with dementia (PDD) and 24 319 patients dying with cancer (PDC) during 1997–2013.
Results: Among PDC, while the percentage of receiving PC increased from 3.6% in 1999 to 14.2% by the end of 2000 (adjusted OR (aOR)=4.07, 95% CI 2.70 to 6.13) and from 20.9% in 2010 to 41.0% in 2013 (aOR=1.40, 95% CI 1.33 to 1.47), vasopressor use decreased from 71.6% in 1999 to 35.5% in 2001 (aOR=0.90, 95% CI 0.82 to 0.98). Among PDD, PC use increased from 0.2% in 2009 to 4.9% in 2013 (aOR=2.05, 95% CI 1.60 to 2.63) and cardiopulmonary resuscitation use decreased from 17.6% in 2009 to 10.0% in 2013 (aOR=0.83, 95% CI 0.76 to 0.90).
Conclusions: Implementation of the PC policy in Taiwan was associated with improved PC utilisation among patients with cancer and dementia, which may reduce unnecessary medical care procedures.
OBJECTIVE: To compare perceptions of various aspects of palliative care for doctors and nurses; and examine factors contributing to perceived quality palliative care in intensive care units (ICUs).
DESIGN: A cross-sectional survey study conducted from November to December 2013. Questionnaires used were Knowledge, Attitudinal and Experiential Survey on Advance Directives (ADs), Clarke's Quality of Palliative Care and Nurses' Participation in the end-of-life (EOL) decision-making process.
SETTING: Seven adult medical and surgical ICUs at a medical center in Northern Taiwan.
PARTICIPANTS: In total, 172 doctors and nurses who worked in adult ICU for more than 3 months.
MAIN OUTCOME MEASURES: Nurses' and doctors' perception of quality palliative care.
RESULTS: Nurses provided better care than doctors in symptom management, comfort care and spiritual care; their participation in EOL decision-making was the sole modifiable contributor to perceived quality palliative care in ICUs (ß = 0.24, P < 0.01). Both doctors and nurses had positive attitudes towards ADs (mean = 4.05/10; standard deviation [SD] = 1.38) while their knowledge of ADs was poor (mean = 29.72/40; SD = 3.00). More than half of nurses currently participated in EOL decision-making and over 80% of doctors and nurses agreed both parties should engage in EOL decision-making process. Majority of doctors (83.9%) reckoned nurses agreed with their EOL decisions while a significant percentage (40%) of nurses were uncertain about doctors’ decisions ( 2 = 12.07, P < 0.01).
CONCLUSIONS: Nurses' participation in EOL decision-making and strengthening spiritual care are imperative to rendering quality palliative care in ICUs. Potential disagreements arose during EOL decision-making between doctors and nurses; and insufficient knowledge of ADs should be addressed.
CONTEXT: At the end of life, chronic obstructive pulmonary disease (COPD) and lung cancer (LC) patients exhibit similar symptoms; however, a large-scale study comparing end-of-life health care utilization between these two groups has not been conducted in East Asia.
OBJECTIVES: To explore and compare end-of-life resource use during the last 6 months before death between COPD and LC patients.
METHODS: Using data from the Taiwan National Health Insurance Research Database, we conducted a nationwide retrospective cohort study in COPD (n = 8,640) and LC (n = 3,377) patients who died between 1997 and 2013.
RESULTS: The COPD decedents were more likely to be admitted to intensive care units (ICUs) (57.59% vs 29.82%), to have longer ICU stays (17.59 vs 9.93 days), and to undergo intensive procedures than the LC decedents during their last 6 months; they were less likely to receive inpatient (3.32% vs 18.24%) or home-based palliative care (0.84% vs 8.17%) and supportive procedures than the LC decedents during their last 6 months. The average total medical cost during the last 6 months was approximately 18.42% higher for the COPD decedents than for the LC decedents.
CONCLUSION: Higher intensive health care resource use, including intensive procedure use, at the end of life suggests a focus on prolonging life in COPD patients; it also indicates an unmet demand for palliative care in these patients. Avoiding potentially inappropriate care and improving end-of-life care quality by providing palliative care to COPD patients are necessary.
The aim of this research was to describe knowledge and attitudes regarding advance directives (ADs) in patients with advanced heart failure and identify factors influencing such knowledge and attitudes. We conducted a cross-sectional survey in 75 patients with advanced heart failure at a cardiovascular outpatient clinic and an in-patient ward. Data were collected by a validated measure of knowledge and attitudes regarding ADs. We compared knowledge and attitudes regarding ADs across patient age, sex, socioeconomic status, care received, and disease status using both univariate and stepwise regression models. Only four of the 75 participants (5.3%) had signed ADs. As a result of stepwise regression analysis, positive attitudes toward ADs were higher in those who were not religious (ß = 3.10; 95% confidence interval [CI], 0.26–5.95), and patients who had a poorer left ventricular ejection fraction had more positive attitudes (ß = 7.03; 95% CI, 3.32-10.73) toward ADs. Knowledge of ADs was higher in subjects with college level education (ß = 0.82; 95% CI, 0.13-1.50) and in subjects with heart failure for greater than 1 year of duration (ß = 2.04; 95% CI, 0.59-3.50). The use of ADs is low in patients with advanced heart failure, despite evidence regarding its benefits.
BACKGROUND: No study has compared the effects of hemodialysis on the symptom burden of terminally ill and nonterminally ill end-stage renal disease (ESRD) patients.
OBJECTIVES: This study aimed to examine the effects of hemodialysis on the symptom burden of ESRD patients and compare the terminally ill and nonterminally ill groups.
DESIGN: This was a quantitative survey; for patients on hemodialysis, the survey was conducted at the beginning and end of the weekly cycle of hemodialysis sessions.
SETTING/SUBJECTS: A total of 211 ESRD patients were recruited in Taiwan, 47 of which were terminally ill (38 on hemodialysis) and 164 nonterminally ill (110 on hemodialysis).
MEASUREMENTS: Symptom burden was assessed using the Taiwanese version of the MD Anderson Symptom Inventory for kidney disease.
RESULTS: Being terminally ill predicted higher symptom severity (B = 0.604, p = 0.017), whereas hemodialysis predicted lower symptom severity (B = -0.614, p = 0.014) in ESRD patients. Nonterminally ill patients who were married or on hemodialysis experienced lower symptom severity (B = -0.604, p = 0.013 and B = -0.665, p = 0.017, respectively). Among terminally ill patients, neither hemodialysis nor other background characteristics predicted symptom severity. When hemodialysis was initiated, no change in symptom severity was observed in terminally ill and nonterminally ill patients.
CONCLUSIONS: The effects of hemodialysis on symptom burden were different between ESRD patients with different disease states. Hemodialysis predicted lower symptom severity only in nonterminally ill ESRD patients. Apart from dialysis, care providers should revisit the palliative approach for treating terminally ill ESRD patients to improve their quality of life.
CONTEXT: No study has examined the varying family experience of palliative sedation therapy (PST) for terminally ill patients in different settings.
OBJECTIVES: To examine and compare family concerns about PST use and its effect on the grief suffered by terminally ill patients' families in palliative care units (PCU) or intensive care units (ICU).
METHODS: A total of 154 family members of such patients were recruited in Taiwan, of whom 143 completed the study, with 81 from the PCU and 62 from the ICU. Data was collected on their concerns regarding PST during recruitment. Grief levels were assessed at three days and one month after the patient's death with the Texas Revised Inventory of Grief.
RESULTS: Families' major concern about sedated patients in the PCU was that 'there might be other ways to relieve symptoms' (90.2%), whereas families of ICU sedated patients gave the highest ratings to 'feeling they still had something more to do' (93.55%), and 'the patient's sleeping condition was not dignified' (93.55%). Family members recruited from the ICU tended to experience more grief than those from the PCU (p=0.005 at day 3 and <0.001 at month 1). PST use predicted higher levels of grief in family members recruited from the PCU (p<0.001 at day 3 and month 1).
CONCLUSIONS: Family experiences with the use of PST in terminally ill patients varied in different settings. Supportive care should address family concerns about PST use, and regular attention should be paid to the grief of individuals at higher risk.
CONTEXT: Stroke is the second leading cause of death and the primary cause of disability worldwide. It is uncertain what care patients with stroke receive in their end of life care and what trends in care are in recent years.
OBJECTIVES: To investigate the changes in the use of intensive and supportive procedures received by Taiwanese stroke patients in their last month of life during 2000-2010.
METHODS: Analysis of claims data of 55,930 patients with stroke obtained from the National Health Insurance Research Database were performed to investigate the changes in the use of intensive and supportive procedures for Taiwanese stroke patients in their last month of life during 2000-2010.
RESULTS: Over the whole study period, 25.4% of patients with stroke were admitted to intensive care units (ICUs) in their last month of life. The percentages of patients receiving mechanical ventilation (77.4%-67.9%), cardiopulmonary resuscitation (CPR, 53.8%-35.8%), and inotropic agents (73.5%-64.3%) decreased over time. The percentages of patients receiving artificial hydration and nutrition (65.9%-73.3%) and sedative or analgesic agents (34.7%-38.6%) increased over time. Patients under 85 years old were more likely to be admitted to ICUs. Males were more likely to receive mechanical ventilation and CPR than females.
CONCLUSION: Over time the uses of supportive procedures increased, and the use of intensive procedures decreased in patients with stroke in the last month of life. This study highlights a need for research, guidelines and training in how to provide palliative care for end-stage patients with stroke.
Les buts de l'étude proposée sont doubles et concernent les conséquences de la douleur sur la qualité de vie de patients cancéreux : comparaison chez des malades avec ou sans symptôme de douleur, détermination d'une relation possible entre l'intensité de la douleur et son interférence sur la vie quotidienne. Trois critères ont été choisis : autonomie, état d'esprit, degré d'espoir. La méthodologie se base sur l'emploi de 4 échelles de mesure et d'un questionnaire démographique concernant 233 patients taiwanais. Les résultats sont résumés sous forme de tableaux statistiques. La discussion donne plusieurs implications importantes sur les répercussions multidimensionnelles de la maladie cancéreuse sur les aspects physiques, psychologiques et sociaux de la vie de patients taiwanais ; elle reprend notamment le rôle de la douleur, et fait une comparaison avec d'autres recherches qui ont été effectuées sur ces mêmes facteurs dans d'autres pays. Les impacts négatifs de la douleur cancéreuse se révèlent notamment indépendants de l'aspect culturel.