PURPOSE: This study aimed to investigate the supportive care needs of family caregivers (FCs) of advanced cancer patients and their support service use at the beginning of specialist inpatient palliative care (SIPC), near the patient's death, and during bereavement.
METHODS: FCs reported their needs using the Family Inventory of Needs (FIN), along with their utilization of psychosocial and bereavement support services at the beginning (N = 232) and 6-9 months after SIPC (N = 160).
RESULTS: At the beginning of SIPC, mean of 16.9 of 20 needs were reported to be highly important, and 12.2 were reported to be met. At the time of the patient's death, 16.8 needs were highly important, and 13.8 were met. At both time points, the highest ranked need was related to information about changes in the patient's condition (100% vs. 99%), and the most frequently unmet need was related to feeling hope (73% vs. 71%). Multivariate linear regression analysis revealed a low education level to be consistently related to a greater number of highly important needs. Higher satisfaction with care and better social support was related to a greater number of met needs. Twenty-five percent of FCs had accessed at least one psychosocial support service prior to SIPC, and 30% had done so during bereavement. Among non-users of support services, > 75% indicated sufficient informal support as a barrier to service use.
CONCLUSIONS: The findings offer a useful guide for adequately addressing FCs' needs in an effort to optimize FC support. However, only a subgroup of the FCs used support services. Better information and provision of tailored services might improve FCs' situations in the future.
Controlled donation after circulatory death (cDCD) occurs after a decision to withdraw life-sustaining treatment (WLST) and subsequent family approach and approval for donation. We currently lack data on factors that impact the decision-making process on WLST and whether time from admission to family approach, influences family consent rates. Such insights could be important in improving the clinical practice of potential cDCD donors. In a prospective multicenter observational study, we evaluated the impact of timing and of the clinical factors during the end-of-life decision-making process in potential cDCD donors. Characteristics and medication use, of 409 potential cDCD donors admitted to the intensive care units (ICU), were assessed. End-of-life decision-making was made after a mean time of 97 h after ICU admission and mostly during the day. Intracranial hemorrhage or ischemic stroke and a high APACHE IV score were associated with a short decision-making process. Preserved brainstem reflexes, high Glasgow Coma Scale scores or cerebral infections were associated with longer time to decision-making. Our data also suggest that the organ donation request could be made shortly after the decision to stop active treatment and consent rates were not influenced by day- or nighttime or by the duration of the ICU stay.
Background/Objective: Surrogate decision makers for patients with intracerebral hemorrhage (ICH) are frequently asked to make difficult decisions on use of life-sustaining treatments. We explored ICH surrogate satisfaction with decision making and experience of decision regret using validated measures in a prospective multicenter study.
Methods: Cases of non-traumatic ICH were enrolled from three hospitals (September 2015–December 2016), and surrogate decision makers were invited to complete a self-administered survey. The primary outcome was the 10-item decision-making subscale of the Family Satisfaction in the Intensive Care Unit scale (FSICU-DM, range 0–100, higher is greater satisfaction), and the secondary outcome was the decision regret scale (range 0–100, higher is greater regret). Linear regression models were used to assess the association between satisfaction with decision making and pre-specified covariates using manual backward selection.
Results: A total of 73 surrogates were approached for participation (in person or mail), with 48 surrogates returning a completed survey (median surrogate age 60.5 years, 63% female, 77% white). Patients had a median age of 72.5, 54% were female, with a median admission Glasgow coma scale of 10, in-hospital mortality of 31%, and 56% with an in-hospital DNR order. Physicians commonly made treatment recommendation (> 50%) regarding brain surgery or transitions to comfort measures, but rarely made recommendations (< 20%) regarding DNR orders. Surrogate satisfaction with decision making was generally high (median FSICU-DM 85, IQR 57.5–95). Factors associated with higher satisfaction on multivariable analysis included greater use of shared decision making (P < 0.0001), younger patient age (p = 0.02), ICH score of 3 or higher (p = 0.03), and surrogate relationship (spouse vs. other, p = 0.02). Timing of DNR orders was not associated with satisfaction (P > 0.25). Decision regret scores were generally low (median 12.5, IQR 0–31.3).
Conclusions: Considering the severity and abruptness of ICH, it is reassuring that surrogate satisfaction with decision making was generally high and regret was generally low. However, more work is needed to define the appropriate outcome measures and optimal methods of recruitment for studies of surrogate decision makers of ICH patients.
Background: It is important to understand the total burden of COPD and thereby be able to identify patients who need more intensive palliative care to avoid deteriorated quality of life. The aim of this study was to describe the psychosocial and demographic characteristics of a population with advanced COPD in a stable phase of the disease.
Methods: This study was cross-sectional based on a prospective observational cohort. The following questionnaires were administered: Chronic Respiratory Disease Questionnaire (CRQ), The COPD Assessment Test (CAT), The Hospital and Anxiety and Depression Scale (HADS), The Medical Research Council dyspnoea scale (MRC), and self-rate general health.
Results: We included 242 patients with advanced COPD from a Danish pulmonary outpatient clinic. Their mean FEV1 was 38% (±12.7) and 19% were treated with long term oxygen. The mean CRQ domain score was CRQ-dyspnea 4.21 (±1.4), CRQ-Mastery 4.88 (±1.3), CRQ-Emotional 4.81 (±1.2), CRQ-Fatigue 3.93 (±1.3). The mean CAT-score was 18.4 (± 6.7), and 44% had a CAT score > 20. The mean score on the subscale for anxiety (HADS-A) and depression (HADS-D) was 5.07 (±3.9) and 5.77 (±3.9), respectively. Thirty percent self-rated their health as bad or very bad and 19.8% were current smokers.
Conclusions: This study describes the characteristics of a population with advanced COPD in a stable phase of their disease. Our results illustrate how the population although treated in an outpatient structure already focusing on palliative needs, still live with unmet palliative needs and impaired quality of life.
Background: Ohana Health Plan, Inc., (OHP) is one of the first managed care organizations offering supportive care services targeted to superutilizers. Bristol Hospice Hawaii, LLC, partnered with OHP to provide interdisciplinary supportive care services to home-bound OHP members.
Objectives: The purpose of this study was to measure symptom relief, satisfaction, resource utilization, and cost savings associated with supportive care.
Design: Prospective study.
Setting: Over 12 months, 27 superutilizer members residing in the community were referred by OHP, 21 members were enrolled into supportive care.
Measurements: Data were collected upon admission and repeatedly thereafter using the Edmonton Symptom Assessment Scale (ESAS) and the Missoula–Vitas Quality of Life Index (MVQOLI). The Family Satisfaction with Advanced Cancer Care (FAMCARE) Scale was administered at discharge. Emergency department (ED) visits and hospital utilization were tracked.
Results: Median age was 63 years; more than half had cardiac diagnoses. Majority of members were Hawaiian and other Pacific Islander. Median length of stay in supportive care was 90 days. Five (23%) members enrolled in hospice following supportive care. Symptom improvement occurred in pain (p < 0.0001), anxiety (p = 0.0052), and shortness of breath (p = 0.0447). This model has shown a 79.5% reduction of ED visits per thousand members and a 75% reduction of hospitalizations per thousand. Overall net savings was 36%. Discussions and documentation of end-of-life wishes increased from 23% to 85%.
Conclusion: Supportive care is highly effective in reducing costs associated with superutilizers. Our experience demonstrates the effectiveness of supportive care approaches in this population through improved care and lower health care costs overall.
Background: Controlled donation after circulatory death (cDCD) is a major source of organs for transplantation. A potential cDCD donor poses considerable challenges in terms of identification of those dying within the predefined time frame of warm ischemia after withdrawal of life-sustaining treatment (WLST) to circulatory arrest. Several attempts have been made to develop models predicting the time between treatment withdrawal and circulatory arrest. This time window determines whether organ donation can occur and influences the quality of the donated organs. However, the selected patients used for these models were not always restricted to potential cDCD donors (eg, patients with cancer or severe infections were also included). This severely limits the generalizability of those data.
Objective: The objectives of this study are the following: (1) to develop a model predicting time to death within 60 minutes in potential cDCD patients; (2) to validate and update previous prediction models on time to death after WLST; (3) to determine timing and patient characteristics that are associated with prognostication and the decision-making process that leads to initiating end-of-life care; (4) to evaluate the impact of timing of family approach on organ donation approval; and (5) to assess the influence of variation in WLST processes on postmortem organ donor potential and actual postmortem organ donors.
Methods: In this multicenter observational prospective cohort study, all patients admitted to the intensive care unit of 3 university hospitals and 3 teaching hospitals who met the criteria of the cDCD protocol as defined by the Dutch Transplant Foundation were included. The target of enrolment was set to 400 patients. Previously developed models will be refitted in our data set. To further update previous prediction models, we will apply least absolute shrinkage and selection operator (LASSO) as a tool for efficient variable selection to develop the multivariable logistic regression model.
Results: This protocol was funded in August 2014 by the Dutch Transplant Foundation. We expect to have the results of this study in July 2020. Patient enrolment was completed in July 2018 and data collection was completed in April 2020.
Conclusions: This study will provide a robust multimodal prediction model, based on clinical and physiological parameters, that can predict time to circulatory arrest in cDCD donors. In addition, it will add valuable insight in the process of WLST in cDCD donors and will fill an important knowledge gap in this essential field of health care.
Background: Data are scarce on the withdrawal of life-sustaining therapies and limitation of care orders (LCOs) during physician-staffed Helicopter Emergency Medical Service (HEMS) missions. We investigated LCOs and the quality of information available when physicians made treatment decisions in prehospital care.
Methods: A prospective, nationwide, multicentre study including all Finnish physician-staffed HEMS bases during a six-month study period. All HEMS missions where a patient had pre-existing LCOs and/or a new LCO were included.
Results: There were 335 missions with LCOs, which represented 5.7% of all HEMS missions (n=5,895). There were 181 missions with pre-existing LCOs, and a total of 170 new LCOs were issued. Usually, the pre-existing LCO was a do not attempt cardiopulmonary resuscitation order only (n=133, 74%). The most frequent new LCO was ‘termination of cardiopulmonary resuscitation’ only (n=61, 36%), while ‘no intensive care’ combined with some other LCO was almost as common (n=54, 32%). When issuing a new LCO for patients who did not have any preceding LCOs (n=153), in every other (49%) case the physicians thought that the patient should have already had an LCO. When the physician made treatment decisions, patients’ background information from on-scene paramedics was available in 260 (78%) of the LCO missions, while patients’ medical records were available in 67 (20%) of the missions.
Conclusion: Making LCOs or treating patients with pre-existing LCOs is an integral part of HEMS physicians’ work, with every twentieth mission involving LCO patients. The new LCOs mostly concerned withholding or withdrawal of cardiopulmonary resuscitation and intensive care.
Objective: The ‘surprise question’ (SQ) and the palliative care screening tool (PCST) are the common assessment tools in the early identification of patients requiring palliative care. However, the comparison of their prognostic accuracies has not been extensively studied. This study aimed to compare the prognostic accuracy of SQ and PCST in terms of recognising patients nearing end of life (EOL) and those appropriate for palliative care.
Methods: This prospective study used both the SQ and PCST to predict patients’ 12-month mortality and identified those appropriate for palliative care. All adult patients admitted to Taipei City Hospital in 2015 were included in this cohort study. The c-statistic value was calculated to indicate the predictive accuracies of the SQ and PCST.
Results: Out of 21 109 patients, with a mean age of 62.8 years, 12.4% and 11.1% had a SQ response of ‘no’ and a PCST score of =4, respectively. After controlling for other covariates, an SQ response of ‘no’ and a PCST score of =4 were the independent predictors of 12-month mortality. The c-statistic values of the SQ and PCST at recognising patients in their last year of life were 0.680 and 0.689, respectively. When using a combination of both SQ and PCST in predicting patients’ 12-month mortality risk, the predictive value of the c-statistic increased to 0.739 and was significantly higher than either one in isolation (p<0.001).
Conclusion: A combination of the SQ with PCST has better prognostic accuracy than either one in isolation.
Background: Noninvasive ventilation may relieve dyspnea in advanced diseases, but noninvasive ventilation through mouthpiece has not been tested in palliative care.
Aim: To assess the feasibility of mouthpiece ventilation in relieving dyspnea among patients with advanced disease.
Design: In this prospective single-arm pilot study, the change in dyspnea by mouthpiece ventilation was measured with numeric rating scale (0–10) and 100-mm visual analogue scale. Overall, benefit and adverse events of the therapy were also assessed.
Setting/participants: Twenty-two patients with an advanced disease and dyspnea from the Tampere University Hospital or Pirkanmaa Hospice were treated with mouthpiece ventilation. The patients used mouthpiece ventilation as long as they preferred, but for a minimum of 5 min.
Results: After the treatment period lasting a median of 13.5 min, mean decrease in dyspnea was -1.1 (95 % confidence interval = -2.2 to -0.1, p = 0.034) on numeric rating scale and -11.8 mm (95 % confidence interval = -19.9 to -3.7, p = 0.006) on visual analogue scale. Nonetheless, there was a high variability in this effect between individual patients. About half of the patients found mouthpiece ventilation beneficial. No serious adverse events occurred, but dry mouth was the most common adverse event. Anxiety did not increase with mouthpiece ventilation.
Conclusion: Mouthpiece ventilation is feasible and may relieve dyspnea in some patients with an advanced disease. Further studies are needed, and these might concentrate on stable patients in early palliative care. Before initiation, this study was registered at clinicaltrials.gov (study no. NCT03012737).
Background: The use of formalized criteria (or triggers) for palliative care services (PCSs) has been associated with increased use of PCSs in the intensive care unit (ICU).
Objective: To explore the utility/validity of frailty as a trigger for providing PCSs.
Design: This is a prospective cohort study.
Setting/Subjects: Older adults (age =50 years) admitted to ICUs were enrolled.
Measurements: We measured frailty using the Clinical Frailty Scale. We reviewed electronic health records for the presence/absence of six evidence-based triggers, the use and quality of specialty palliative care (SPC), and markers of primary palliative care (PPC). We used descriptive statistics to describe the differences in PPC, SPC, and six-month mortality by frailty and by the presence/absence of triggers.
Results: In a study population of 302 older adults, mean (standard deviation) age 67.2 years (10.5), 151 (50%) were frail and 105 (34.8%) had =1 trigger for PCSs. Of the 151 (55.6%) frail patients, 84 had no triggers for PCSs, despite a 46.4% six-month mortality in this group. Patients with =1 trigger had higher rates of SPC than those without (39.1% vs. 18.3%, p < 0.001); frail patients also had higher SPC than nonfrail patients (32.5% vs. 18.5%, p = 0.006). Patients with =1 trigger had higher rates of PPC than those without (66.7% vs. 44.2%, p < 0.001); no statistically significant difference in PPC was found by frailty (56.3% vs. 47.7%, p = 0.134).
Conclusion: The rates of PCSs and six-month mortality by frailty are consistent with frailty being a valid trigger for PCSs in ICUs; the high prevalence of frailty relative to triggers suggests that ways to increase PCSs would be needed.
Objectives: To measure trauma patient and caregiver satisfaction before and after implementation of standardised palliative care (PC) guidelines.
Methods: Prospective pre–post study at two level-I trauma centres. PC satisfaction surveys were administered prior to discharge for consented trauma patients (Family Satisfaction with Advanced Cancer Scale, Patient (FAMCARE-P13) survey)=55 years, and their caregivers (FAMCARE survey), from 1 November 2016 to 30 November 2018. Standardised PC guidelines were implemented January 2018 and included consultations, prognostication assessments, identification of proxies, review of advanced directives and do not resuscitate orders within 24 hours of admission, while advanced goals of care, formal family meetings and spiritual care support were recommended within 72 hours of admission. Generalised linear models were used to determine whether differences in patient or caregiver satisfaction existed pre versus post implementation.
Results: There were 572 patients (299 pre; 273 post) and 595 caregivers (334 pre; 261 post) included. Overall patient satisfaction significantly increased post implementation (82.0 vs 86.0, p=0.001). After adjustment, the implementation of the guidelines was an independent predictor of higher overall patient satisfaction (least squares mean (LSM= (83.8% (95%CI 81.2%-86.5%) vs 80.3% (77.7%-82.9%), p=0.003)). Compared with preimplementation, patient satisfaction was significantly higher post implementation in the following domains: information giving (80.9 vs 85.5, p=0.001), followed by physical care (82.2 vs 86.0, p=0.002), availability of care (83.4 vs 86.8, p=0.007) and psychosocial care (84.7 vs 87.6, p=0.04). No significant differences in caregiver satisfaction were found before or after adjustment (LSMpre: 83.1% (95%CI 80.9%-85.3%) vs. post: 82.4% (80.3%-84.5%), p=0.56))
Conclusions: Our data suggest that the implementation of PC guidelines significantly improved patient satisfaction following traumatic injury, while maintaining robust caregiver satisfaction.
Context: Off-label and unlicensed use of drugs is a widespread practice in pediatric care due to the lack of specific efficacy and safety data and the absence of formulations adapted to the needs of these individuals. Pediatric patients with a life-limiting illness frequently receive drugs under these conditions, though no studies have established the prevalence of this practice.
Aim: to describe the prevalence, indications, and most common uses of off-label and unlicensed drugs in a pediatric palliative care unit.
Methods: A prospective, cross-sectional observational study carried out between January and October 2019.
Setting/participants: The study included all patients admitted to the pediatric palliative care unit for home hospitalization and with at least one prescribed drug treatment.
Results: eighty-five patients involving 1198 prescriptions were analyzed. A total of 39.6% were off-label and 12.9% were unlicensed. All received at least one off-label drug, with a median of 5 per patient (IQR = 3–7), and 81.2% received at least one unlicensed drug. A total of 36.1% of the prescriptions were considered off-label due to indication, 33.8% due to dosage, and 26.6% due to age. The main drugs used off-label were oral morphine, oral levetiracetam, inhaled albuterol, sublingual ondansetron, oral tizanidine, sublingual fentanyl, and oral diazepam. The main symptoms treated with off-label drugs were dyspnea, pain, and nausea/vomiting.
Conclusions: Over half of the prescriptions in this PPCU were off-label or unlicensed. Treatment indication was one of the main reasons for off-label use. Administration of compounded preparations was common in patients with a life-limiting illness.
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: 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.
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.
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.
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.
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.