Background: Our objectives were to test whether during a potentially life-threatening medical emergency, perceived threat (a patient’s sense of life endangerment) in the emergency department (ED) is common and associated with the subsequent development of posttraumatic stress disorder (PTSD) symptoms.
Methods: This study was an ED-based prospective cohort study in an academic hospital. We included adult patients requiring acute intervention in the ED for resuscitation of a potentially life-threatening medical emergency, defined as respiratory or cardiovascular instability. We measured patient-perceived threat in the ED using a validated patient self-assessment measure (score range = 0 to 21, with higher scores indicating greater perceived threat). We performed blinded assessment of PTSD symptoms 30 days after discharge using the PTSD Checklist for Diagnostic and Statistical Manual of Mental Disorders-Fifth Edition (PCL-5).
Results: Ninety-nine of 113 (88%) patients completed follow-up, with 98% reporting some degree of perceived threat, median (interquartile range [IQR]) perceived threat score 12 (6 to 17), and 72% reported PTSD symptoms in relation to their ED visit (median [IQR] PC-5 score = 7 [0 to 30]). Patients with respiratory instability had higher median (IQR) perceived threat scores (16 [9 to 18] vs. 9 [6 to 14)] and PCL-5 scores (10 [2 to 40] vs. 3 [0 to 17]) compared to patients without respiratory instability. In a multivariable linear regression model adjusting for potential confounders, greater perceived threat in the ED was independently associated with higher PCL-5 scores (ß = 0.79, 95% confidence interval [CI] = 0.15 to 1.42). Among the individual perceived threat items, the feeling of helplessness during resuscitation had the strongest association with PCL-5 score (ß = 5.24, 95% CI = 2.29 to 8.18).
Conclusions: Perceived threat during potentially life-threatening emergencies is common and independently associated with development of PTSD symptoms. Additional research to test whether reduction of perceived threat in the ED attenuates the development of PTSD symptoms following potentially life-threatening emergencies is warranted.
BACKGROUND: Previous research on chemotherapy discontinuation has mainly focused on predictive factors and outcomes. Few data are available on the reasons for chemotherapy discontinuation. The main objective was to identify the reasons for chemotherapy discontinuation in patients with gastrointestinal cancer. The secondary objectives were to describe the announcement of chemotherapy discontinuation and the time between chemotherapy discontinuation and death.
METHODS: This prospective multicenter French cohort included patients with advanced gastrointestinal cancer, for whom chemotherapy was discontinued between May 2016 and January 2018.
RESULTS: One hundred and fourteen patients were analyzed. The first cause of chemotherapy discontinuation was the impairment of general condition (asthenia, cachexia). Complications such as sepsis, jaundice or occlusion, were the second most frequent cause. Progression was observed at chemotherapy discontinuation in two-thirds of cases. The announcement of the chemotherapy discontinuation was made formally in 74% of cases, with a follow-up by a palliative care team initiated in 50% of cases. Sixty-nine percent of the patients received chemotherapy during the last three months of life and 26% during the last month. The median time between chemotherapy discontinuation and death was 65 days (IQR: 36.5-109): 44% of patients died at the hospital, 39% in a palliative care unit and 16% at home.
CONCLUSION: Impairment of general condition was the major reason for chemotherapy discontinuation in patients with gastrointestinal cancers. Complications such as jaundice, sepsis or occlusion, were important reasons for discontinuation and could explain our shorter time between chemotherapy discontinuation and death, compared to other oncology sub-specialties.
OBJECTIVES: to establish the accuracy of community nurses' predictions of mortality among older people with multiple long-term conditions, to compare these with a mortality rating index and to assess the incremental value of nurses' predictions to the prognostic tool.
DESIGN: a prospective cohort study using questionnaires to gather clinical information about patients case managed by community nurses. Nurses estimated likelihood of mortality for each patient on a 5-point rating scale. The dataset was randomly split into derivation and validation cohorts. Cox proportional hazard models were used to estimate risk equations for the Revised Minimum Dataset Mortality Risk Index (MMRI-R) and nurses' predictions of mortality individually and combined. Measures of discrimination and calibration were calculated and compared within the validation cohort.
SETTING: two NHS Trusts in England providing case-management services by nurses for frail older people with multiple long-term conditions.
PARTICIPANTS: 867 patients on the caseload of 35 case-management nurses. 433 and 434 patients were assigned to the derivation and validation cohorts, respectively. Patients were followed up for 12 months.
RESULTS: 249 patients died (28.72%). In the validation cohort, MMRI-R demonstrated good discrimination (Harrell's c-index 0.71) and nurses' predictions similar discrimination (Harrell's c-index 0.70). There was no evidence of superiority in performance of either method individually (P = 0.83) but the MMRI-R and nurses' predictions together were superior to nurses' predictions alone (P = 0.01).
CONCLUSIONS: patient mortality is associated with higher MMRI-R scores and nurses' predictions of 12-month mortality. The MMRI-R enhanced nurses' predictions and may improve nurses' confidence in initiating anticipatory care interventions.
Objectives: Facilitating a high quality of death is an important aspect of comfort care for patients in ICUs. The quality of death in ICUs has been rarely reported in Asian countries. Although Korea is currently in the early stage after the implementation of the “well-dying” law, this seems to have a considerable effect on practice. In this study, we aimed to understand the status of quality of death in Korean ICUs as perceived by medical staff, and to elucidate factors affecting patient quality of death.
Design: A multicenter cross-sectional survey study.
Setting: Medical ICUs of two tertiary-care teaching hospitals and two secondary-care hospitals.
Patients: Deceased patients from June 2016 to May 2017.
Interventions: Relevant medical staff were asked to complete a translated Quality of Dying and Death questionnaire within 48 hours after a patient’s death. A higher Quality of Dying and Death score (ranged from 0 to 100) corresponded to a better quality of death.
Measurements and Main Results: A total of 416 completed questionnaires were obtained from 177 medical staff (66 doctors and 111 nurses) of 255 patients. All 20 items of the Quality of Dying and Death received low scores. Quality of death perceived by nurses was better than that perceived by doctors (33.1 ± 18.4 vs 29.7 ± 15.3; p = 0.042). Performing cardiopulmonary resuscitation and using inotropes within 24 hours before death were associated with poorer quality of death, whereas using analgesics was associated with better quality of death.
Conclusions: The quality of death of patients in Korean ICUs was considerably poorer than reported in other countries. Provision of appropriate comfort care, avoidance of unnecessary life-sustaining care, and permission for more frequent visits from patients’ families may correspond to better quality of death in Korean medical ICUs. It is also expected that the new legislation would positively affect the quality of death in Korean ICUs.
Importance: Less than 25% of African American individuals have completed advance directives and are thus vulnerable to poor end-of-life care. Low-cost interventions are needed to increase engagement in advance care planning (ACP).
Objectives: To investigate whether an end-of-life conversation game motivates African American attendees to engage in ACP and to assess whether the game is well received and endorsed.
Exposures: Attendance at an end-of-life conversation game (Hello) played in groups of 4 to 6 participants for 60 minutes.
Design, Setting, and Participants: Prospective, mixed-methods cohort study conducted from 2018 to 2019 with a 3- to 11-month follow-up interview. Game events were held in 53 community venues across the US; 15 were purposively sampled for onsite research procedures. Of 428 attendees at purposively sampled sites, 386 (90%) consented to research procedures (6 attendees were removed from analysis for protocol deviation). Of 367 attendees who provided accurate contact information, 232 (63%) were contacted, and 220 were included in follow-up analyses.
Main Outcomes and Measures: The primary outcome was advance directive completion rates after the intervention. Secondary outcomes included rates of other ACP behaviors, ACP engagement, conversation satisfaction and realism, and participants’ Net Promoter Score (a measure of endorsement). Follow-up telephone interviews explored the game experience and relevant ACP behaviors of attendees.
Results: Of 380 individuals who participated (mean [SD] age, 62.2 [13.8] years; 304 were female [80%], and 348 were [92%] African American), none withdrew because of an adverse event. After the intervention, 91 of 220 attendees (41%) completed a new advance directive; 176 of 220 attendees (80%) discussed end-of-life wishes with loved ones, and 214 of 219 attendees (98%) completed at least 1 ACP behavior. There was a moderate increase in the self-efficacy domain on the ACP Engagement Survey (mean [SD] change from before to after the game, 0.54 [0.98]; P < .001). The mean (SD) conversation satisfaction score was 6.21 (0.93) (range, 1-7, with 7 being highest satisfaction), and the overall Net Promoter Score was 57.89 (range, -100 to 100, with 100 being highest endorsement). Interviews revealed 5 themes about the game: (1) it was a useful forum for ACP; (2) it provided new information and perspective; (3) it was emotionally beneficial; (4) it increased appreciation for ACP; and (5) it empowered and motivated participants to perform ACP. Mixed-methods integration showed convergence across data sets.
Conclusions and Relevance: Among a nationwide sample of African American individuals, the end-of-life conversation game appeared to be well received and was associated with high rates of ACP behavior. This low-cost and scalable tool may help reduce health disparities associated with end-of-life care.
BACKGROUND: Prior to national spread, the Department of Veterans Affairs implemented a pilot of the life-sustaining treatment decisions initiative (LSTDI) to promote proactive goals of care conversations (GoCC) with seriously ill patients, including policy and practice standards, an electronic documentation template and order set, and implementation support.
AIM: To describe a 2-year pilot of the LSTDI at 4 demonstration sites.
DESIGN: Prospective observational study.
SETTING/PARTICIPANTS: A total of 6664 patients who had at least one GoCC.
RESULTS: Descriptive statistics characterized patient demographics, goals of care, LST decisions, and risk of hospitalization or mortality among patients with at least one GoCC. Participants were on average 71.4 years old, 93.2% male, 87.1% white, and 64.7% urban; 27.3% died by the end of the pilot period. Fifteen percent lacked decision-making capacity (DMC). Nonmutually exclusive goals included to be cured (7.6%), to prolong life (34%), to improve/maintain quality of life (61.5%), to be comfortable (53%), to obtain support for family/caregiver (8.4%), to achieve life goals (2.1%), and other (10.5%). Many GoCCs resulted in a do not resuscitate (DNR) order (58.8%). Patients without DMC were more likely to have comfort-oriented goals (77.3% vs 48.8%) and a DNR (84% vs 52.6%). Chart abstraction supported content validity of GoCC documentation.
CONCLUSION: The pilot demonstrated that standardizing practices for eliciting and documenting GoCCs resulted in customized documentation of goals of care and LST decisions of a large number of seriously ill patients and established the feasibility of spreading standardized practices throughout a large integrated health care system.
Purpose: Scarce evidence exists regarding end-of-life decision (EOLD) in neurocritically ill patients. We investigated the factors associated with EOLD making, including the group and individual characteristics of involved healthcare professionals, in a multiprofessional neurointensive care unit (NICU) setting.
Materials and methods: A prospective, observational pilot study was conducted between 2013 and 2014 in a 10-bed NICU. Factors associated with EOLD in long-term neurocritically ill patients were evaluated using an anonymised survey based on a standardised questionnaire.
Results: 8 (25%) physicians and 24 (75%) nurses participated in the study by providing their ‘treatment decisions’ for 14 patients at several time points. EOLD was ‘made’ 44 (31%) times, while maintenance of life support 98 (69%) times. EOLD patterns were not significantly different between professional groups. The individual characteristics of the professionals (age, gender, religion, personal experience with death of family member and NICU experience) had no significant impact on decisions to forgo or maintain life-sustaining therapy. EOLD was patient-specific (intraclass correlation coefficient: 0.861), with the presence of acute life-threatening disease (OR (95% CI): 18.199 (1.721 to 192.405), p=0.038) and low expected patient quality of life (OR (95% CI): 9.276 (1.131 to 76.099), p=0.016) being significant and independent determinants for withholding or withdrawing life-sustaining treatment.
Conclusions: Our findings suggest that EOLD in NICU relies mainly on patient prognosis and not on the characteristics of the healthcare professionals.
CONTEXT: Racial and ethnic disparities in end-of-life care are well documented among adults with advanced cancer.
OBJECTIVES: To examine the extent to which communication and care differ by race and ethnicity among children with advanced cancer.
METHODS: We conducted a prospective cohort study at 9 pediatric cancer centers enrolling 95 parents (42% racial/ethnic minorities) of children with poor prognosis cancer (relapsed/refractory high risk neuroblastoma). Parents were surveyed about whether prognosis was discussed; likelihood of cure; intent of current treatment; and primary goal of care. Medical records were used to identify higher intensity medical care since the most recent recurrence. Logistic regression evaluated differences between white non-Hispanic and minority (black, Hispanic, Asian/other race) parents.
RESULTS: 26% of parents recognized the child's low likelihood of cure. Minority parents were less likely to recognize the poor prognosis (OR .19, 95%CI .06-.63, P=.006) and the fact that current treatment was unlikely to offer cure (OR .07, 95%CI .02-.27, P<.0001). Children of minority parents were more likely to experience higher intensity medical care (OR 3.01, 95%CI 1.29-7.02, P=.01). After adjustment for understanding of prognosis, race/ethnicity was no longer associated with higher intensity medical care (aOR 2.14, 95%CI .84-5.46, P=.11), although power to detect an association was limited.
CONCLUSION: Parental understanding of prognosis is limited across racial and ethnic groups; racial and ethnic minorities are disproportionately affected. Perhaps as a result, minority children experience higher rates of high intensity medical care. Work to improve prognostic understanding should include focused work to meet needs of minority populations.
OBJECTIVES: To describe how children currently die in Spanish PICUs, their epidemiologic characteristics and clinical diagnoses.
DESIGN: Prospective multicenter observational study.
SETTING: Eighteen PICUs participating in the MOdos de Morir en UCI Pediátrica-2 (MOMUCI-2) study in Spain.
PATIENTS: Children 1 to 16 years old who died in PICU during 2017 and 2018.
MEASUREMENTS AND MAIN RESULTS: During the 2-year study period, 250 deaths were recorded. Seventy-three children (29.3%) were younger than 1 year, 131 (52.6%) were between 1 and 12 years old, and 45 (18.1%) were older than 12. One-hundred eighty patients (72%) suffered from an underlying chronic disease, 54 (21.6%) had been admitted to PICU in the past 6 months, and 71 (28.4%) were severely disabled upon admission. Deaths occurred more frequently on the afternoon-night shift (62%) after a median PICU length of stay of 3 days (1-12 d). Nearly half of the patients died (48.8%) after life-sustaining treatment limitation, 71 died (28.4%) despite receiving life-sustaining therapies and cardiopulmonary resuscitation, and 57 (22.8%) were declared brain dead. The most frequent type of life-sustaining treatment limitation was the withdrawal of mechanical ventilation (20.8%), followed by noninitiation of cardiopulmonary resuscitation (18%) and withdrawal of vasoactive drugs (13.7%). Life-sustaining treatment limitation was significantly more frequent in patients with an underlying neurologic-neuromuscular disease, respiratory disease as the cause of admission, a previous admission to PICU in the past 6 months, and severe disability. Multivariate analyses indicated that life-sustaining treatment limitation, chronicity, and poor Pediatric Cerebral Performance Category score were closely related.
CONCLUSIONS: Currently, nearly half of the deaths in Spanish PICUs occur after the withdrawal of life-sustaining treatments. These children are more likely to have had previous admissions to the PICU, be severely disabled or to suffer from chronic diseases. Healthcare professionals who treat critically ill children ought to be aware of this situation and should therefore be prepared and trained to provide the best end-of-life care possible.
Purpose: To characterize the practice of subcutaneous hydration provision in the Beer-Sheva home care hospice unit. We also explore the potential connection between the provision of subcutaneous hydration and the incidence of death rattle.
Methods: This was a prospective observational study involving 120 hospice patients. During the 6 days before death, hospice staff recorded whether or not fluids were administered orally and/or subcutaneously; the duration, timing, and quantity of fluid administration; the incidence, timing, and duration of death rattle; and whether medications that can affect death rattle were given.
Result: Fifty-three percent of the patients received subcutaneous hydration. The mean daily volume administered in the hydration group was 434 ml. There was a significant association between the duration of treatment in the hospice unit and provision of subcutaneous hydration (mean of 51 days in hydration group vs. 31 days in non-hydration group, p = 0.03). Although not statistically significant, males were more likely to receive subcutaneous hydration than females (62% of males vs. 46% of females, p = 0.09). There was a higher incidence of death rattle in men compared to women (54.7% in men vs. 32.8% in women, p = 0.025). A statistically significant association between death rattle and the provision of subcutaneous hydration wasn’t demonstrated.
Conclusion: The decision of whether to provide subcutaneous hydration is individualized taking into consideration the values of the patients and their families. The provision of 500 ml per day of subcutaneous saline during the last 6 days of life does not significantly increase the incidence of death rattle.
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).