A Prospective Cohort Study of Factors Associated With Place of Death Among Patients With Late-Stage Cancer in Southern Africa

Context

Identifying factors that affect terminally ill patients' preferences for and actual place of death may assist patients to die wherever they wish.

Causes of Hospital Admissions in Domus: A Randomized Controlled Trial of Specialized Palliative Cancer Care at Home

Context

Avoidable hospital admissions are important negative indicators of quality of end-of-life care. Specialized palliative care (SPC) may support patients remaining at home.

Palliative Sedation in Patients With Advanced Cancer Followed at Home: A Prospective Study

ContextHome care programs in Italy.ObjectivesThe aim of this study was to assess a protocol for palliative sedation (PS) performed at home.MethodsA total of 219 patients were prospectively assessed to evaluate a PS protocol in patients with advanced cancer followed at home by two home care programs with different territorial facilities. The protocol was based on stepwise administration of midazolam.ResultsA total of 176 of the patients died at home, and PS was performed in 24 of these patients (13.6%). Younger patients received the procedure more frequently than older patients (P = 0.012). The principal reasons to start PS were agitated delirium (n = 20) and dyspnea (n = 4). Mean duration of PS was 42.2 ± 30.4 hours, and the mean doses of midazolam were 23–58 mg/day. Both the home care team and the patients' relatives expressed optimal or good levels of satisfaction with the procedure in all but one case, respectively.ConclusionThis protocol for PS was feasible and effective in minimizing distress for a subgroup of patients who died at home. The characteristics of patients who may be effectively sedated at home should be better explored in future studies.     

Trends in Place of Death for Individuals With Deaths Attributed to Advanced Chronic or End-Stage Kidney Disease in the United States

ContextAn important aspect of end-of-life care, place of death is understudied in advanced chronic (CKD) and end-stage kidney disease (ESKD).ObjectiveWe sought to examine trends and factors associated with where advanced CKD/ESKD patients die.MethodsWe conducted a retrospective cross-sectional study using mortality data from 2003 to 2017 for deaths attributed primarily to advanced CKD/ESKD in the United States.ResultsBetween 2003 and 2017, 222,247 deaths were attributed to advanced CKD/ESKD. From 2003 to 2017, deaths occurring in hospitals declined from 56.0% (n = 5356) to 35.6% (n = 7764), whereas increases occurred in deaths at home (13.5% [n = 1292] to 24.3% [n = 5306]), nursing facilities (18.6% [n = 1776] to 19.3% [n = 4221]), and hospice facilities (0.3% [n = 29] to 13.4% [n = 2917]). Nonwhite race was associated with increased odds of hospital death (Black [OR = 1.59; 95% CI = 1.55, 1.62]; Native American [OR = 1.47; 95% CI = 1.32, 1.63]; Asian [OR = 1.43; 95% CI = 1.32, 1.55] and reduced odds of nursing facility (Black [OR = 0.622; 95% CI = 0.600, 0.645]; Native American [OR = 0.638; 95% CI = 0.572, 0.712]; Asian [OR = 0.574; 95% CI = 0.533, 0.619], or hospice facility death (Black [OR = 0.843; 95% CI = 0.773, 0.918]; Native American [OR = 0.380; 95% CI = 0.289, 0.500]; Asian [OR = 0.609; 95% CI = 0.502, 0.739]). Older age was associated with reduced odds of hospital death (≥85 [OR = 0.334; 95% CI = 0.312, 0.358]) and increased odds of home (≥85 [OR = 1.55; 95% CI = 1.43, 1.68]), nursing facility (≥85 [OR = 3.09; 95% CI = 2.76, 3.45]) or hospice facility death (≥85 [OR = 1.60; 95% CI = 1.49, 1.72]).ConclusionsHospitals remain the most common place of death from advanced CKD/ESKD; however, the proportion of home, nursing facility, and hospice facility deaths have increased.     

The Association Between Hospital End-of-Life Care Quality and the Care Received Among Patients With Heart Failure

ContextImproving end-of-life care (EOLC) quality among heart failure patients is imperative. Data are limited as to the hospital processes of care that facilitate this goal.ObjectivesTo determine associations between hospital-level EOLC quality ratings and the EOLC delivered to heart failure patients.MethodsRetrospective analysis of the Veterans Health Administration (VA) and the Bereaved Family Survey data of heart failure patients from 2013 to 2015 who died in 107 VA hospitals. We calculated hospital-level observed-to-expected casemix-adjusted ratios of family reported excellent EOLC, dividing hospitals into quintiles. Using logistic regression, we examined associations between quintiles and palliative care consultation, receipt of chaplain and bereavement services, inpatient hospice, and intensive care unit death.ResultsOf 6256 patients, mean age was 77.4 (SD = 11.1), 98.3% were male, 75.7% were white, and 18.2% were black. Median hospital scores of “excellent” EOLC ranged from 41.3% (interquartile range 37.0%–44.8%) in the lowest quintile to 76.4% (interquartile range 72.9%–80.3%) in the highest quintile. Patients who died in hospitals in the highest quintile, relative to the lowest, were slightly although not significantly more likely to receive a palliative care consultation (adjusted proportions 57.6% vs. 51.2%; P = 0.32) but were more likely to receive chaplaincy (92.6% vs. 81.2%), bereavement (86.0% vs. 72.2%), and hospice (59.7% vs. 35.9%) and were less likely to die in the intensive care unit (15.9% vs. 31.0%; P < 0.05 for all).ConclusionPatients with heart failure who die in VA hospitals with higher overall EOLC quality receive more supportive EOLC. Research is needed that integrates care processes and develops scalable best practices in EOLC across health care systems.     

Earlier Initiation of Community-Based Palliative Care Is Associated With Fewer Unplanned Hospitalizations and Emergency Department Presentations in the Final Months of Life: A Population-Based Study Among Cancer Decedents

Context

Although community-based palliative care (CPC) is associated with decreased acute care use in the lead up to death, it is unclear how the timing of CPC initiation affects this association.

A Population-Based Mortality Follow-Back Survey Evaluating Good Death for Cancer and Noncancer Patients: A Randomized Feasibility Study

ContextEvaluation of end-of-life care is a key element in quality improvement, and population-based mortality follow-back designs have been used in several countries. This design was adapted to evaluate a good death in Japan.ObjectivesThis study aimed to explain the scientific background and rationale for assessing the feasibility of a mortality follow-back survey using a randomized design.DesignWe used a cross-sectional questionnaire survey to assess feasibility using response rate, sample representativeness, effect on response rate with two methods, and survey acceptability.Setting/ParticipantsThe subjects were 4812 bereaved family members of patients who died from the major five causes of death: cancer, heart disease, cerebrovascular disease, pneumonia, or kidney failure, using mortality data.ResultsOverall, 682 (14.2%) questionnaires could not be delivered, and 2294 (55.5%) family members agreed to participate in the survey. There was little difference in the distribution of characteristics between the study subjects and the full population, and sample representativeness was acceptable. Sending the questionnaire with a pen achieved a higher response rate than without (weighted: 48.2% vs. 40.8%; P < 0.001). In follow-up contact, there was no difference in response rate between resending the questionnaire and a reminder letter alone (weighted: 32.9% vs. 32.4%; P = 0.803). In total, 84.8% (weighted) of the participants agreed with improving quality of care through this kind of survey.ConclusionThis study demonstrated the feasibility of conducting a population-based mortality follow-back survey using a randomized design. An attached pen with the questionnaire was effective in improving the response rate.     

Patterns of Care for Patients with Cancer before and after the Establishment of a Hospice Ward

A majority of people die in acute hospital care, in a culture of quickness primary aimed at curing. There are indications that hospice care in various forms will spread during the present decade in Sweden. The hospice philosophy contributes to a culture of slowness, where the patient is not only allowed but is encouraged to live at his own pace. As a first step in establishing for whom hospice inpatient care is the best alternative, patient flow to a newly started hospice ward was studied. All patients (n = 1464) who died at the Medical Centre Hospital with a primary diagnosis of cancer during the period of study were compared regarding place of death, diagnosis, gender, age and length of the last period of care. The year before the ward was established, 82% of patients died in acute hospital care compared with 59% during the hospice ward's third year of operation. A total of 315 patients (22%) died in the hospice ward during the study period. The percentage of these patients over the age of 80 was significantly higher (p = 0.0001), and they also had a longer continuous final period of care. More women (57%) than men (43%) were cared for at the hospice ward. The hospice ward has in this way influenced the pattern of care in the hospital.     

Pediatric Palliative Care in Sub-Saharan Africa: A Systematic Review of the Evidence for Care Models,Interventions, and Outcomes

ContextThe progressive disease burden among children in sub-Saharan Africa means the provision of palliative care is essential and should be provided alongside treatment where it is available.ObjectivesTo systematically review the evidence for pediatric palliative care models, interventions, and outcomes to appraise the state of the science and inform best practice.MethodsA systematic review search strategy was implemented in eight electronic databases, the search results reported using a PRISMA statement, and findings tabulated.ResultsIn terms of evidence of palliative care provision and outcomes, only five articles were identified. These represent a small range of acute, community, and hospice care and offer some limited guidance on the development and delivery of services.ConclusionPediatric palliative care is a pressing clinical and public health challenge in sub-Saharan Africa. Explicit evidence-based models of service development, patient assessment, and evidence for control of prevalent problems (physical, psychological, social, spiritual, and developmental) are urgently needed. Greater research activity is urgently required to ensure an evidence-based response to the enormous need for pediatric palliative care in sub-Saharan Africa.     

Within-Day Test-Retest Reliability of the Timed Up & Go Test in Patients With Advanced Chronic Organ Failure

Objective

To investigate the within-day test-retest reliability of the Timed Up & Go (TUG) test in patients with advanced chronic obstructive pulmonary disease (COPD), chronic heart failure (CHF), and chronic renal failure (CRF).

Design

Cross-sectional.

Setting

Patients' home environment.

Participants

Subjects (N=235, 64% men; median age, 70y [interquartile range, 61–77y]; median body mass index, 25.6kg/m² [interquartile range, 22.8–29.4kg/m²]) with advanced COPD (n=95), CHF (n=68), or CRF (n=72).

Interventions

Not applicable.

Main Outcome Measure

Time to complete the TUG test. Three trials were performed on the same day and by the same assessors. The intraclass correlation coefficient (ICC), kappa coefficient, standard error of measurement, and absolute and relative minimal detectable change (MDC) values were calculated.

Results

Good agreement was observed, in general, for both the total sample and subgroups (COPD, CHF, CRF), with ICC values ranging from .85 to .98, and kappa coefficients from .49 to 1.00. However, statistical improvement occurred in the total sample from the first to the second trial with large limits of agreement (mean difference, −.97s; 95% confidence interval, 3.00 to −4.94s; P<.01). The third trial added little or no information to the first 2 trials. For the total sample, a standard error of measurement value of approximately 1.6 seconds, an absolute value of MDC at the 95% confidence level (MDC_95%) of approximately 4.5 seconds, and a relative value of MDC at the 95% confidence level (MDC_95%%) of approximately 35% were found between the first 2 trials, with similar values found for the subgroups.

Conclusions

The TUG test is reliable in patients with advanced COPD, CHF, or CRF after 2 trials. Values of standard error of measurement and MDC may be used in daily clinical practice with these populations to define what is expected and what represents true change in repeated measures.     

Risk Factors for Developing Prolonged Grief During Bereavement in Family Carers of Cancer Patients in Palliative Care: A Longitudinal Study

ContextFamily carers of palliative care patients report high levels of psychological distress throughout the caregiving phase and during bereavement. Palliative care providers are required to provide psychosocial support to family carers; however, determining which carers are more likely to develop prolonged grief (PG) is currently unclear.ObjectivesTo ascertain whether family carers reporting high levels of PG symptoms and those who develop PG disorder (PGD) by six and 13 months postdeath can be predicted from predeath information.MethodsA longitudinal study of 301 carers of patients receiving palliative care was conducted across three palliative care services. Data were collected on entry to palliative care (T1) on a variety of sociodemographic variables, carer-related factors, and psychological distress measures. The measures of psychological distress were then readministered at six (T2; n = 167) and 13 months postdeath (T3; n = 143).ResultsThe PG symptoms at T1 were a strong predictor of both PG symptoms and PGD at T2 and T3. Greater bereavement dependency, a spousal relationship to the patient, greater impact of caring on schedule, poor family functioning, and low levels of optimism also were risk factors for PG symptoms.ConclusionScreening family carers on entry to palliative care seems to be the most effective way of identifying who has a higher risk of developing PG. We recommend screening carers six months after the death of their relative to identify most carers with PG.     

医护人员对晚期老年痴呆症患者姑息照护态度的调查分析

目的了解医护人员对晚期老年痴呆症患者姑息照护的态度及其影响因素,为晚期老年痴呆症患者姑息照护实践提供依据。方法对本市4所三级甲等综合医院神经内科和老年病科107名医护人员进行问卷调查,内容包括:医护人员的一般资料,对姑息照护的认知及姑息照护态度等,了解医护人员对姑息照护的态度和认知。结果姑息照护态度问卷中总量表得分均值为3.12±0.32分,三维度得分均值分别为3.35±0.58分、3.17±0.43分、2.74±0.49分。除外2维度与总量表得分比较无显著性差异(P0.05),以上四个均值两两比较均有显著性差异(P0.05)。年龄、性别、职称、职业四个因素对于态度问卷的总量表得分是重要的影响因素。结论医护人员对于姑息照护的态度总体上是积极的、正面的,认可了姑息照护的有效性,但是对于姑息照护的实施存在认知及与患者(包括家属)沟通方面的问题。     

Nurse-Led Follow-Up at Home vs. Conventional Medical Outpatient Clinic Follow-Up in Patients With Incurable Upper Gastrointestinal Cancer: A Randomized Study

ContextUpper gastrointestinal cancer is associated with a poor prognosis. The multidimensional problems of incurable patients require close monitoring and frequent support, which cannot sufficiently be provided during conventional one to two month follow-up visits to the outpatient clinic.ObjectivesTo compare nurse-led follow-up at home with conventional medical follow-up in the outpatient clinic for patients with incurable primary or recurrent esophageal, pancreatic, or hepatobiliary cancer.MethodsPatients were randomized to nurse-led follow-up at home or conventional medical follow-up in the outpatient clinic. Outcome parameters were quality of life (QoL), patient satisfaction, and health care consumption, measured by different questionnaires at one and a half and four months after randomization. As well, cost analyses were done for both follow-up strategies in the first four months.ResultsIn total, 138 patients were randomized, of which 66 (48%) were evaluable. At baseline, both groups were similar with respect to clinical and sociodemographic characteristics and health-related QoL. Patients in the nurse-led follow-up group were significantly more satisfied with the visits, whereas QoL and health care consumption within the first four months were comparable between the two groups. Nurse-led follow-up was less expensive than conventional medical follow-up. However, the total costs for the first four months of follow-up in this study were higher in the nurse-led follow-up group because of a higher frequency of visits.ConclusionThe results suggest that conventional medical follow-up is interchangeable with nurse-led follow-up. A cost utility study is necessary to determine the preferred frequency and duration of the home visits.