Objectives: Research suggests that clinicians are not very accurate at prognosticating in palliative care. The ‘horizon effect’ suggests that accuracy ought to be better when the survival of patients is shorter. The aim of this study was to determine the accuracy of specialist palliative care clinicians at identifying which patients are likely to die within 72 hours.
Design In a secondary data analysis of a prospective observational study, specialist palliative care doctors and nurses (in a hospice and a hospital palliative care team) provided survival predictions (yes/no/uncertain) about which patients would die within 72 hours.
Results: Survival predictions were obtained for 49 patients. A prediction from a nurse was obtained for 37/49 patients. A prediction from a doctor was obtained for 46/49 patients. In total, 23 (47%)/49 patients actually died within 72 hours of assessment. Nurses accurately predicted the outcome in 27 (73%)/37 cases. Doctors accurately predicted the outcome in 30 (65%)/46 cases. When comparing predictions given on the same patients (27 [55%]/49), nurses were slightly better at recognising imminent death than doctors (positive predictive value (the proportion of patients who died when the clinician predicted death)=79% vs 60%, respectively). The difference in c-statistics (nurses 0.82 vs doctors 0.63) was not significant (p=0.13).
Conclusion: Even when patients are in the terminal phase and close to death, clinicians are not very good at predicting how much longer they will survive. Further research is warranted to improve prognostication in this population.
Context: Universal screening to identify vulnerable patients who may receive limited benefits from life-sustaining treatments can facilitate palliative care in dialysis populations.
Objectives: We aimed to develop prediction models for 1-year mortality in peritoneal dialysis patients.
Methods: This prospective cohort study included 401 adult Taiwanese prevalent peritoneal dialysis patients (average age 56.2 ± 14 years). In addition to obtaining clinical characteristics and laboratory data, the primary care nurses evaluated the “surprise question” and “palliative care screening tool” for each patient in March 2015. Multivariate logistic regression models were conducted to predict the primary outcome of 1-year all-cause mortality.
Results: There were 34 (8.5%) patients who died during the first year of follow-up. Patients allocated to the “not surprised” group according to the surprise question and those who received a score = 4 on the palliative care screening tool had increased odds of death [odds ratio 24.68 (95% CI 10.66 - 57.13) and 12.18 (95% CI 5.66 - 26.21), respectively]. We also developed a clinical risk model for 1-year mortality that included sex, dialysis vintage, coronary artery disease, malignancy, normalized protein nitrogen appearance, white blood cell count, and serum albumin and sodium levels. Integrating the surprise question, palliative care screening tool, and clinical risk model exhibited good discrimination with an area under the receiver operating characteristic curve of 0.95. Kaplan-Meier analysis showed worse survival in high risk patients predicted by the integrated model (log-rank P<.001).
Conclusion: screening with the use of the integrated measurement can identify high-risk peritoneal dialysis patients. This approach may facilitate palliative care interventions for at-risk the subpopulations.
Background: Seizure control is challenging in the palliative care setting. Subcutaneous (SC) levetiracetam (LEV) is currently an off-label route of administration and effectiveness, tolerability, and pharmacokinetics studies for this route are scarce.
Objectives: This prospective study aimed at evaluating effectiveness and tolerability of SC LEV as well as characterizing its pharmacokinetics.
Subjects: Patients (n = 7) who attended the palliative care clinic between September 2018 and January 2019 with diagnosis of seizures, =18 years, and in need of SC route of administration were included in the study.
Measurements: LEV plasma levels were determined using high-performance liquid chromatography and pharmacokinetic analysis were performed using Monolix 2018R2 (France). pH and osmolality of the three SC infusion solutions were also determined.
Results: Seven patients took part in the study. Seizures were controlled in six out of seven patients with doses of 1000 and 3000 mg/day. Adverse effects were mild. pH and osmolality of the SC infusion solutions were within the accepted values reported in the literature. Mean plasma LEV concentrations were 14.4 mg/L (1000 mg/day) and 27.7 mg/L (2000 mg/day). The population clearance (2.5 L/h) and the elimination half-life (10.4 hours) were successfully estimated.
Conclusions: Based on this data, SC LEV was effective and well tolerated. Pharmacokinetic parameters for the SC route were successfully determined.
Purpose: The responsibility of taking care of terminal patients is accepted as a role of family members in Taiwan. Only a few studies have focused on the effect of palliative care consultation service (PCCS) on caregiver burden between terminal cancer family caregivers (CFCs) and non-cancer family caregivers (NCFCs). Therefore, the purpose of this study is to address the effect of PCCS on caregiver burden between CFC and NCFC over time.
Methods: A prospective longitudinal study was conducted in a medical center in northern Taiwan from July to November 2017. The participants were both terminally ill cancer and non-cancer patients who were prepared to receive PCCS, as well as their family caregivers. Characteristics including family caregivers and terminal patients and Family Caregiver Burden Scale (FCBS) were recorded pre-, 7, and 14 days following PCCS. A generalized estimating equation model was used to analyze the change in the level of family caregiver burden (FCB) between CFC and NCFC.
Results: The study revealed that there were no statistically significant differences in FCB between CFC and NCFC 7 days and 14 days after PCCS (p > 0.05). However, FCB significantly decreased in both CFC and NCFC from pre-PCCS to 14 days after PCCS (ß = - 12.67, p = 0.013). PPI of patients was the key predictor of FCB over time following PCCS (ß = 1.14, p = 0.013).
Conclusions: This study showed that PCCS can improve FCB in not only CFC but also NCFC. We suggest that PCCS should be used more widely in supporting family caregivers of terminally ill patients to reduce caregiver burden.
BACKGROUND: Phase of Illness is used to describe the stages of a patient’s illness in the palliative care setting. Categorization is based on individual needs, family circumstances, and the adequacy of a care plan. Substantial ( = .67) and moderate ( = .52) inter-rater reliability is demonstrated when categorizing adults; however, there is a lack of similar studies in pediatrics.
OBJECTIVE: To test the inter-rater reliability of health-care professionals when assigning pediatric palliative care patients to a Phase of Illness. Furthermore, to obtain user views on phase definitions, ease of assignment, feasibility and acceptability of use.
METHOD: A prospective cohort study in which up to 9 health-care professionals' independently allocated 80 pediatric patients to a Phase of Illness and reported on their experiences. This study took place between June and November 2017.
RESULTS: Professionals achieved a moderate level of agreement ( = 0.50). Kappa values per phase were as follows: stable = 0.63 (substantial), unstable = 0.26 (fair), deteriorating = 0.45 (moderate), and dying = 0.43 (moderate). For the majority of allocations, professionals report that the phase definitions described patients very well (76.1%), and they found it easy to assign patients (73.5%). However, the unstable phase caused the most uncertainty.
CONCLUSION: The results of this study suggest Phase of Illness is a moderately reliable, acceptable, and feasible tool for use in pediatric palliative care. Current results are similar to those found in some adult studies. However, in a quarter of cases, users report some uncertainty in the application of the tool, and further study is warranted to explore whether suggested refinements improve its psychometric properties.
Background: Multidrug-resistant organisms are a growing challenge and burden to patient care. To date, there are only data concerning the prevalence of methicillin-resistant Staphylococcus aureus infections. Thus, numbers of other multidrug-resistant organisms can only be extrapolated and inferred from more or less comparable cohorts.
Aim: To evaluate the prevalence of multidrug-resistant organisms on palliative care in-patients.
Design: A prospective cohort analysis
Setting/participants: A University Hospital–bound palliative care unit, in which all patients admitted to the unit were screened for inclusion.
Results: In total, 304 patients were included in this study. The prevalence for methicillin-resistant Staphylococcus aureus of 5.2% (95% confidence interval: 2.9%–8.4%), for vancomycin-resistant Enterococcus faecium of 10.5% (95% confidence interval: 7.2%–14.8%), for Ciprofloxacin-resistant-extended spectrum beta-lactamases isolates of 5.8% (95% confidence interval: 3.4%–9.3%) and Ciprofloxacin-resistant Carbapenem-resistant Gram-negative bacteria of 0.3% (95% confidence interval: 0%–1.3%) was calculated. Except for methicillin-resistant Staphylococcus aureus, patients carrying a multidrug-resistant organism had a significant longer duration of hospitalization. Median length of stay was 12 days (interquartile range: 14.5, no multidrug-resistant organisms), 14.5 days (interquartile range: 15, methicillin-resistant Staphylococcus aureus), 21 days (interquartile range: 16.5, vancomycin-resistant enterococci), 22 days (interquartilsabstand: 20.75, Ciprofloxacin-resistant-extended spectrum beta-lactamases) and 32 days (interquartilsabstand: 22.00) for patients carrying two organisms.
Conclusion: There is a high prevalence of all multidrug-resistant organisms within the hospitalized palliative care patients. However, the multidrug-resistant organisms do not seem to impact the survival within this cohort. Further studies should evaluate additional end-points, for example, quality of life, which are of special interest in this cohort.
OBJECTIVES: To describe the clinical management of palliative sedation and the characteristics of sedated patients in 11 Catalan hospital emergency departments.
MATERIAL AND METHODS: Prospective descriptive study of a cohort of patients given palliative sedation between April and July 2018. We registered patient demographic and disease data, the Charlson comorbidity index (CCI), patient's point of origin before emergency department arrival, times related to emergency care, and medications used.
RESULTS: We included 323 patients (48.9% men) with a mean (SD) age of 84 (12) years. The CCIs were significantly higher in patients attended in level-I hospitals. Palliative sedation was the first option in 27% and was initiated within 18 (28) hours of arrival on average, an interval that was significantly shorter in level-II hospitals. Most patients (74.2%) died in the emergency department.
CONCLUSION: Patients treated with palliative sedation in hospital emergency departments are older and have serious concomitant conditions. Most patients are first treated with intention to cure. Time until the start of palliative sedation differs significantly according to hospital level.
Background: Few large studies describe initial disease trajectories and subsequent mortality in people with head and neck cancer. This is a necessary first step to identify the need for palliative care and associated services.
Aim: To analyse data from the Head and Neck 5000 study to present mortality, place and mode of death within 12 months of diagnosis.
Design: Prospective cohort study.
Participants: In total, 5402 people with a new diagnosis of head and neck cancer were recruited from 76 cancer centres in the United Kingdom between April 2011 and December 2014.
Results: Initially, 161/5402 (3%) and 5241/5402 (97%) of participants were treated with ‘non-curative’ and ‘curative’ intent, respectively. Within 12 months, 109/161 (68%) in the ‘non-curative’ group died compared with 482/5241 (9%) in the ‘curative’ group. Catastrophic bleed was the terminal event for 10.4% and 9.8% of people in ‘non-curative’ and ‘curative’ groups, respectively; terminal airway obstruction was recorded for 7.5% and 6.3% of people in the same corresponding groups. Similar proportions of people in both groups died in a hospice (22.9% ‘non-curative’; 23.5% ‘curative’) and 45.7% of the ‘curative’ group died in hospital.
Conclusion: In addition to those with incurable head and neck cancer, there is a small but significant ‘curative’ subgroup of people who may have palliative needs shortly following diagnosis. Given the high mortality, risk of acute catastrophic event and frequent hospital death, clarifying the level and timing of palliative care services engagement would help provide assurance as to whether palliative care needs are being met.
IMPORTANCE: Underutilization of hospice occupational therapy may be attributable to a lack of evidence on efficacy.
OBJECTIVE: To conduct a scoping review of occupational therapy outcome studies to ascertain how efficacy is captured in the literature.
DATA SOURCES: PubMed, CINAHL, MEDLINE, Scopus, Directory of Open Access Journals, Web of Science, OT Search, and Google Scholar.
STUDY SELECTION AND DATA COLLECTION: Search terms: hospice, palliative care, occupational therapy, rehabilitation, outcome measure, and assessment. Inclusion criteria: research studies in English, centered on adult hospice care, published between January 1997 and September 2017, and investigated occupational therapy efficacy with an outcome measure. Exclusion criteria: systematic reviews, participants not at terminal disease end stages, or intervention program reviews lacking differentiated occupational therapy outcomes.
FINDINGS: Seven articles met the inclusion criteria. Findings include frequent use of noncontrolled, quasi-experimental, prospective research designs; a focus on occupational performance; and no generally accepted hospice occupational therapy outcome measure.
CONCLUSION AND RELEVANCE: Outcome measures of participation in end-of-life occupations and environmental influences on occupational engagement are needed to effectively support occupational therapy practice and research with people who are terminally ill.
WHAT THIS ARTICLE ADDS: Occupational therapy in end-of-life care is growing in complexity yet remains low in utilization. This review adds insights into current practice and future research foci for the profession.
Spinal muscular atrophy type 1 (SMA-1) is a severe neurodegenerative disorder, which in the absence of curative treatment, leads to death before 1 year of age in most cases. Caring for these short-lived and severely impaired infants requires palliative management. New drugs (nusinersen) have recently been developed that may modify SMA-1 natural history and thus raise ethical concerns about the appropriate level of care for patients. The national Hospital Clinical Research Program (PHRC) called "Assessment of clinical practices of palliative care in children with Spinal Muscular Atrophy Type 1 (SMA-1)" was a multicenter prospective study conducted in France between 2012 and 2016 to report palliative practices in SMA-1 in real life through prospective caregivers' reports about their infants' management. Thirty-nine patients were included in the prospective PHRC (17 centers). We also studied retrospective data regarding management of 43 other SMA-1 patients (18 centers) over the same period, including seven treated with nusinersen, in comparison with historical data from 222 patients previously published over two periods of 10 years (1989-2009). In the latest period studied, median age at diagnosis was 3 months [0.6-10.4]. Seventy-seven patients died at a median 6 months of age[1-27]: 32% at home and 8% in an intensive care unit. Eighty-five percent of patients received enteral nutrition, some through a gastrostomy (6%). Sixteen percent had a non-invasive ventilation (NIV). Seventy-seven percent received sedative treatment at the time of death. Over time, palliative management occurred more frequently at home with increased levels of technical supportive care (enteral nutrition, oxygenotherapy, and analgesic and sedative treatments). No statistical difference was found between the prospective and retrospective patients for the last period. However, significant differences were found between patients treated with nusinersen vs. those untreated. Our data confirm that palliative care is essential in management of SMA-1 patients and that parents are extensively involved in everyday patient care. Our data suggest that nusinersen treatment was accompanied by significantly more invasive supportive care, indicating that a re-examination of standard clinical practices should explicitly consider what treatment pathways are in infants' and caregivers' best interest. This study was registered on clinicaltrials.gov under the reference NCT01862042 (https://clinicaltrials.gov/ct2/show/study/NCT01862042?cond=SMA1&rank=8).
PURPOSE: Online programs may help to engage patients in advance care planning in outpatient settings. We sought to implement an online advance care planning program, PREPARE (Prepare for Your Care; http://www.prepareforyourcare.org), at home and evaluate the changes in advance care planning engagement among patients attending outpatient clinics.
METHODS: We undertook a prospective before-and-after study in 15 primary care clinics and 2 outpatient cancer centers in Canada. Patients were aged 50 years or older (primary care) or 18 years or older (cancer care) and free of cognitive impairment. They used the PREPARE website over 6 weeks, with reminders sent at 2 or 4 weeks. We used the 55-item Advance Care Planning Engagement Survey, which measures behavior change processes (knowledge, contemplation, self-efficacy, readiness) on 5-point scales and actions relating to substitute decision makers, quality of life, flexibility for the decision maker, and asking doctors questions on an overall scale from 0 to 21; higher scores indicate greater engagement.
RESULTS: In total, 315 patients were screened and 172 enrolled, of whom 75% completed the study (mean age = 65.6 years, 51% female, 35% had cancer). The mean behavior change process score was 2.9 (SD 0.8) at baseline and 3.5 (SD 0.8) at follow-up (mean change = 0.6; 95% CI, 0.49-0.73); the mean action measure score was 4.0 (SD 4.9) at baseline and 5.2 (SD 5.4) at follow-up (mean change = 1.2; 95% CI, 0.54-1.77). The effect size was moderate (0.75) for the former and small (0.23) for the latter. Findings were similar in both primary care and cancer care populations.
CONCLUSIONS: Implementation of the online PREPARE program in primary care and cancer care clinics increased advance care planning engagement among patients.
The aim of the study is to evaluate the intensity of symptoms, and any treatment and therapeutic procedures received by advanced chronic patients in nursing homes. A multi-centre prospective study was conducted in six nursing homes for five months. A nurse trainer selected palliative care patients from whom the sample was randomly selected for inclusion. The Edmonton Symptoms Assessment Scale, therapeutic procedures, and treatment were evaluated. Parametric and non-parametric tests were used to evaluate month-to-month differences and differences between those who died and those who did not. A total of 107 residents were evaluated. At the end of the follow-up, 39 had (34.6%) died. All symptoms (p < 0.050) increased in intensity in the last week of life. Symptoms were more intense in those who had died at follow-up (p < 0.05). The use of aerosol sprays (p = 0.008), oxygen therapy (p < 0.001), opioids (p < 0.001), antibiotics (p = 0.004), and bronchodilators (p = 0.003) increased in the last week of life. Peripheral venous catheters (p = 0.022), corticoids (p = 0.007), antiemetics (p < 0.001), and antidepressants (p < 0.05) were used more in the patients who died. In conclusion, the use of therapeutic procedures (such as urinary catheters, peripheral venous catheter placement, and enteral feeding) and drugs (such as antibiotics, anxiolytics, and new antidepressant prescriptions) should be carefully considered in this clinical setting.
Background: The “END-of-Life ScorING-System” (ENDING-S) was previously developed to identify patients at high-risk of dying in the ICU and to facilitate a practical integration between palliative and intensive care. The aim of this study is to prospectively validate ENDING-S in a cohort of long-term critical care patients.
Materials and methods: Adult long-term ICU patients (with a length-of-stay> 4 days) were considered for this prospective multicenter observational study. ENDING-S and SOFA score were calculated daily and evaluated against the patient’s ICU outcome. The predictive properties were evaluated through a receiver operating characteristic (ROC) analysis.
Results: Two hundred twenty patients were enrolled for this study. Among these, 21.46% died during the ICU stay. ENDING-S correctly predicted the ICU outcome in 71.4% of patients. Sensitivity, specificity, positive and negative predictive values associated with the previously identified ENDING-S cut-off of 11.5 were 68.1, 72.3, 60 and 89.3%, respectively. ROC-AUC for outcome prediction was 0.79 for ENDING-S and 0.88 for SOFA in this cohort.
Conclusions: ENDING-S, while not as accurately as in the pilot study, demonstrated acceptable discrimination properties in identifying long-term ICU patients at very high-risk of dying. ENDING-S may be a useful tool aimed at facilitating a practical integration between palliative, end-of-life and intensive care.
Trial registration: Clinicaltrials.gov Identifier: NCT02875912; First registration August 4, 2016.
Background: Despite improvements in diagnostics and therapy, the majority of lung tumours are diagnosed at advanced stage IV with a poor prognosis. Due to the nature of an incurable disease, patients need to engage in shared decision making on advance care planning. To implement this in clinical practice, effective communication between patients, caregivers and healthcare professionals is essential. The Heidelberg Milestones Communication Approach (MCA) is delivered by a specifically trained interprofessional tandem and consists of four milestone conversations (MCs) at pivotal times in the disease trajectory. MC 1 (Diagnosis): i.e. prognosis; MC 2 (Stable disease): i.e. prognostic awareness; MC 3 (Progression): i.e. reassessment; MC 4 (Best supportive care): i.e. end of treatment. In between MCs, follow-up calls are carried out to sustain communication. This study aimed to assess to what extent the MCA was implemented as planned and consolidated in specialized oncology practice.
Methods: A prospective observational process evaluation study was conducted, which focused on the implementation fidelity of the MCA. All MCs during two assessment periods were included. We analysed all written records of the conversations, which are part of the routine documentation during MCs and follow-up calls. Adherence to key aspects of the manual was documented on structured checklists at the beginning of the implementation of the MCA and after 6 months. The analysis was descriptive. Differences between the two assessment periods are analysed with chi-square tests.
Results: A total of 133 MCs and 54 follow-up-calls (t1) and of 172 MCs and 92 follow-up calls (t2) were analysed. MC 2 were the most frequently completed conversations (n = 51 and n = 47). Advance care planning was discussed in 26 and 13% of MC 2 in the respective assessment periods; in 31 and 47% of MC 2, prognostic awareness was recorded. The most frequently documented topic in the follow-up calls was the physical condition in patients (82 and 83%).
Conclusion: The implementation of a trajectory-specific communication concept was largely successful. Additional studies are needed to understand how fidelity could be further improved.
Trial registration: DRKS00013469 / Date of registration: 22.12.2017.
PURPOSE: Several validated outcome measures, among them the Zarit Burden Interview (ZBI), are valid for measuring caregiver burden in advanced cancer and dementia. However, they have not been validated for a wider palliative care (PC) setting with non-cancer disease. The purpose was to validate ZBI-1 (ultra-short version and proxy rating) and ZBI-7 short versions for PC.
METHODS: In a prospective, cross-sectional study with informal caregivers of patients in inpatient (PC unit, hospital palliative support team) and outpatient (home care team) PC settings of a large university hospital, content validity and acceptability of the ZBI and its structural validity (via confirmatory factor analysis (CFA) and Rasch analysis) were tested. Reliability assessment used internal consistency and inter-rater reliability and construct validity used known-group comparisons and a priori hypotheses on correlations with Brief Symptom Inventory, Short Form-12, and Distress Thermometer.
RESULTS: Eighty-four participants (63.1% women; mean age 59.8, SD 14.4) were included. Structural validity assessment confirmed the unidimensional structure of ZBI-7 both in CFA and Rasch analysis. The item on overall burden was the best item for the ultra-short version ZBI-1. Higher burden was recorded for women and those with poorer physical health. Internal consistency was good (Cronbach's a = 0.83). Inter-rater reliability was moderate as proxy ratings estimated caregivers' burden higher than self-ratings (average measures ICC = 0.51; CI = 0.23-.69; p = 0.001).
CONCLUSION: The ZBI-7 is a valid instrument for measuring caregiver burden in PC. The ultra-short ZBI-1 can be used as a quick and proxy assessment, with the caveat of overestimating burden.
OBJECTIVE: To characterize how pediatric resident self-evaluation compares to standardized patient evaluations in simulated child death disclosure scenarios.
STUDY DESIGN: This was a prospective, observational, mixed-methods study in which 18 PGY-2 pediatric residents delivered the news of a death of a child to a trained standardized patient (SP) couple. The SPs evaluated residents via a quantitative global rating (1 to 3 scale) and via qualitative comments. Following the training, the residents completed self-assessments consisting of a global rating, qualitative comments, and their confidence related to five death disclosure skills.
RESULTS: Agreement between SPs and resident ratings was poor; resident scores were compared to each of their two SP evaluators yielding Kappa coefficients of -0.23 (95% CI = -0.60 to -0.07) and –0.30 (95% CI = -0.70 to –0.04). Residents uniformly rated themselves as less capable in their communication skills than SPs did. Residents reported significant increases in their confidence in discussing autopsy and organ donation. Major themes determined from the qualitative comments from SPs included non-verbal communication, verbal communication, attunement to parents, and management of next steps. Residents’ comments mirrored these themes with the exception of the absence of non-verbal communication.
CONCLUSIONS: Pediatric residents underestimated their abilities in a self-assessment of their performance in a SP death disclosure scenario, demonstrating the importance of external feedback, particularly from SPs themselves. Based on SP feedback, future death disclosure trainings should emphasize non-verbal communication skills and specific behaviors that convey effective attunement to families.
Background: Nutritional impairment is common in cancer patients and adversely affects quality of life (QoL). The aim of this study was to investigate the association between nutritional status and QoL in incurable cancer patients in palliative care.
Methods: A prospective cohort with incurable cancer patients referred to the specialized Palliative Care Unit of the National Cancer Institute in Brazil was conducted. The nutritional risk (NR) was assessed using the Patient-Generated Subjective Global Assessment short form (PG-SGA SF), and cancer cachexia (CC) was defined according to the international consensus. QoL was evaluated using the Quality of Life Questionnaire Core 15 Palliative (QLQ-C15-PAL). Multivariate linear regressions analyses were performed to assess the relationship between the nutritional status and QoL scores.
Results: A total of 1039 consecutive patients were included. A high prevalence of NR (85.4%) and CC (78.7%) were observed. The patients with worse nutritional status presented significantly poorer physical, emotional, symptoms domains scales, and overall QoL. CC were significantly associated with QoL scores for dyspnea (p = 0.013), insomnia (p = 0.046), and appetite loss (p = 0.015), while NR were associated with all the QoL domains scales covered in QLQ-C15-PAL.
Conclusion: Our findings support that impaired nutritional status was associated with poor QoL in incurable cancer patients. NR assessed by PG-SGA SF better reflects physical, emotional, symptom burden, and overall QoL scores. Thus, this tool may contribute in identifying patients at risk of deterioration QoL.
BACKGROUND: When religious and spiritual (R/S) care needs of patients with advanced disease are met, their quality of life (QoL) improves. We studied the association between R/S support and cancer patients' QoL at end-of-life in Soweto, South Africa.
OBJECTIVES: To identify R/S needs among advanced cancer patients receiving palliative care services and to assess associations of receipt of R/S care with patient QoL and place of death.
METHOD: A prospective cohort study conducted from May 1, 2016 to April 30, 2018 at a tertiary hospital in Soweto, South Africa. Nurses enrolled advanced cancer patients and referred them to the palliative care multidisciplinary team. Spiritual counsellors assessed and provided spiritual care to patients. We compared socio-demographic, clinical, and R/S factors and QoL of R/S care recipients and others.
RESULTS: Of 233 deceased participants, 92 (39.5%) had received R/S care. Patients who received R/S care reported less pain (2.82±1.23 versus 1.93±1.69), used less morphine and were more likely to die at home than patients who did not (57.5% compared to 33.7%). On multivariable logistic regression analysis, adjusting for significant confounding influences and baseline African Palliative Care Association Palliative Outcome Scale (APCA POS) scores, receipt of spiritual care was associated with reduced pain and family worry (OR, 0.33, 95% CI, 0.11-0.95); (OR, 3.43, 95% CI, 1.10-10.70).
CONCLUSION: Cancer patients have R/S needs. R/S care among our patients appreared to improve their end-of-life experience. More research is needed to determine the mechanisms by which R/S care may have improved the observed patient outcomes.
BACKGROUND: News of cancer progression is critical to setting accurate prognostic understanding, which guides patients' treatment decision making. This study examines whether religious belief in miracles modifies the effect of receiving news of cancer progression on change in prognostic understanding.
METHODS: In a multisite, prospective cohort study, 158 patients with advanced cancer, whom oncologists expected to die within 6 months, were assessed before and after the visit at which scan results were discussed. Before the visit, religious belief in miracles was assessed; after the visit, patients indicated what scan results they had received (cancer was worse vs cancer was stable, better, or other). Before and after the visit, prognostic understanding was assessed, and a change score was computed.
RESULTS: Approximately 78% of the participants (n = 123) reported at least some belief in miracles, with almost half (n = 73) endorsing the strongest possible belief. A significant interaction effect emerged between receiving news of cancer progression and belief in miracles in predicting change in prognostic understanding (b = -0.18, P = .04). Receiving news of cancer progression was associated with improvement in the accuracy of prognostic understanding among patients with weak belief in miracles (b = 0.67, P = .007); however, among patients with moderate to strong belief in miracles, news of cancer progression was unrelated to change in prognostic understanding (b = 0.08, P = .64).
CONCLUSIONS: Religious belief in miracles was highly prevalent and diminished the impact of receiving news of cancer progression on prognostic understanding. Assessing patients' beliefs in miracles may help to optimize the effectiveness of "bad news" scan result discussions.
BACKGROUND: Emergency departments (EDs) are crowded with critically ill patients, many of whom are no longer able to communicate with the emergency staff. Substitute decision makers are often unknown or not reachable in time. The availability of advance directives (ADs) among Swiss ED patients has not yet been evaluated. The purpose of this prospective survey was to investigate the prevalence of ADs among ED patients and to identify factors associated with the existence or absence of ADs.
METHODS: In a prospective survey, we enrolled consecutive patients from 10–30 July 2017 who visited a tertiary care ED. Patients completed a written, standardised and self-administrated questionnaire during the waiting time. The primary endpoint was the prevalence of ADs in ED patients. Secondarily, we defined predictors associated with the existence or absence of ADs. Two months after the first survey, there was a written follow-up survey asking patients without ADs whether they had completed an AD in the meantime.
RESULTS: Fifty-eight of 292 enrolled ED patients (19.9%) had a completed AD. Overall, 49.3% of the survey population was female. Patients having an AD were older (69.5 years, interquartile range [IQR] 57–81 vs 39 years, IQR 27–56) and had more comorbidities (67.2% vs 38.9%) compared with patients without ADs. The four leading reasons given for not having an AD were: 33.6% never considered completing one, 26% did not know about ADs, 14% preferred family to make decisions, 11.6% felt it was too early to make such a decision. Predictors for having an AD were older age (p <0.001), being in long-term medical treatment by a specialist (p = 0.050), being Swiss (p = 0.021) and living with nursing care (p = 0.043). Of the ED patients with ADs, 46.6% discussed their AD with the family and 31% with their general practitioner. Results of the follow-up survey showed that eight participants had completed an AD in the meantime. The prevalence of ADs increased from 19.9% to 22.6%.
DISCUSSION: During the last 20 years, the percentage of patients having an AD has not changed. Even today, only every fifth ED patient has a completed AD. Nearly two thirds of ED patients never considered completing one or did not know about ADs. Therefore, there is an urgent need to better inform and sensitise the public, so that they will define in a timely manner legally valid and specifically defined decisions about future medical treatments and wishes by completing individual directives.