BACKGROUND: Lung transplant recipients who experience serious illness could benefit from specialty palliative care (SPC), but evidence suggests that referral has been rare.
OBJECTIVE: Examine the characteristics of post-transplant SPC encounters, utilization trends, and patient characteristics associated with SPC at a center with established SPC services.
DESIGN: Retrospective cohort study of SPC utilization by 597 lung transplant recipients transplanted between 2010 and 2015. We collected data on pretransplant demographics and post-transplant SPC encounters, including timing, location, and referral reasons. Cumulative incidence of SPC and patient characteristics associated with SPC were examined by competing risks methods. Utilization in the first two post-transplant years was compared between subcohorts defined by year of transplantation.
RESULTS: SPC cumulative incidence was 27% and 43% at one and five years. More than 60% of encounters occurred in the first post-transplant year including 34% during the index transplant hospitalization. Over 90% of encounters occurred in the inpatient setting. The majority of consults were for symptom management. From 2010 to 2015 inpatient utilization in the first two post-transplant years increased from 23% to 42%, and outpatient utilization increased from 2% to 16%. Accounting for increasing utilization, pretransplant SPC and double-lung transplantation were associated with greater incidence of post-transplant SPC.
CONCLUSIONS: Lung transplant recipients may have palliative care needs early after transplantation. Increasing utilization suggests greater awareness of or changing attitudes about the utility of SPC for lung transplant recipients. Understanding transplant recipients' palliative care needs and transplant physicians' views of SPC is critical to improving the provision of SPC in lung transplantation.
OBJECTIVES: To describe the rate of do-not-resuscitate (DNR) and do-not-hospitalize (DNH) orders among residents newly admitted into long-term care homes. We also assessed the association between DNR and DNH orders with hospital admissions, deaths in hospital, and survival.
DESIGN: A retrospective cohort study.
SETTING AND PARTICIPANTS: Admissions in all 640 publicly funded long-term care homes in Ontario, Canada, between January 1, 2010 and March 1, 2012 (n = 49,390).
MEASURES: We examined if a DNR and/or DNH was recorded on resident's admission assessment. All residents were followed until death, discharge, or end of study to ascertain rates of several outcomes, including death and hospitalization, controlling for resident characteristics.
RESULTS: Upon admission, 60.7% of residents were recorded to have a DNR and 14.8% a DNH order. Those who were older, female, widowed, lived in rural facilities, lived in higher income neighborhoods prior to entry, had higher health instability or cognitive impairment, and spoke English or French were more likely to receive a DNR or DNH. Survival time was only slightly shorter for those with a DNR and DNH with a mean of 145 and 133 days, respectively, vs 160 and 153 days for those without a DNR and DNH. After controlling for age, sex, rurality, neighborhood income, marital status, health instability, cognitive performance score, and multimorbidity, DNR and DNH were associated with an odds ratio of 0.57 [95% confidence interval (CI) 0.53-0.62] and 0.41 (95% CI 0.37-0.46) for dying in hospital, respectively. Those with a DNR and DNH, after adjustment, had an incidence rate ratio of 0.87 (95% CI 0.83-0.90) and 0.70 (95% CI 0.67-0.73), respectively, days spent in hospital.
CONCLUSIONS AND IMPLICATIONS: This study outlines identifiable factors influencing whether residents have a DNR and/or DNH order upon admission. Both orders led to lower rates, but not absolute avoidance, of hospitalizations near and at death.
OBJECTIVE: To investigate, from the perspective of women and partners, at what stage of a termination of pregnancy (TOP) for foetal anomalies psychosocial care (PSC) is most meaningful, what topics should be discussed, and who should provide PSC.
METHOD: A cross-sectional retrospective cohort study was conducted with a consecutive series of 76 women and 36 partners, who completed a semi-structured online questionnaire.
RESULTS: Overall, women expressed a greater need for PSC than their partners. Parents expressed a preference for receiving support from a maternal-foetal medicine specialist to help them understand the severity and consequences of the anomalies found and to counsel them in their decision regarding termination. Parents showed a preference for support from mental healthcare providers to help with their emotional responses. Forty-one percent of the women visited a psychosocial professional outside of the hospital after the TOP, indicating a clear need for well-organised aftercare.
CONCLUSION: Different disciplines should work together in a complementary way during the diagnosis, decision-making, TOP, and aftercare stages. Parents' need for PSC should be discussed at the beginning of the process. During aftercare, attention should be paid to grief counselling, acknowledgement of the lost baby's existence, and possible future pregnancies.
Supportive and palliative care at the end of life (EOL) is a core component of health systems. Providing care at the EOL may require the interaction of several care providers working in different settings including nursing homes, home care, hospices, and hospitals. This work aims to (a) provide evidence on the performance of EOL care for cancer patients across healthcare organizations, with a focus on the place of care, aggressive treatments, opioids, and the place of death and (b) analyze factors associated with dying in hospital. A population-based retrospective study was performed using administrative data from Tuscany region (Italy). Thirteen thousand sixty-six cancer patients who died in 2016 were considered. There is a marked variability in EOL care within regional areas, with the multilevel logistic regression highlighting a greater likelihood of dying in hospital for patients who were admitted to intensive care units or previously hospitalized. There is a lower probability of dying in acute care setting for patients assisted in hospices and in both hospital and hospices/home care and for patients treated with opioids. This intraregional variation highlights the need to improve EOL planning and rethink the delivery of supportive/palliative care. Further investigations on the preferences of patients may lead to more understanding.
PURPOSE: Family meetings in the medical intensive care unit can improve outcomes. Little is known about when meetings occur in practice. We aimed to determine the time from admission to family meetings in the medical intensive care unit and assess the relationship of meetings with mortality.
METHODS: We performed a prospective cohort study of critically ill adult patients admitted to the medical intensive care unit at an urban academic medical center. Using manual chart review, the primary outcome was any attempt at holding a family meeting within 72 hours of admission. Competing risk models estimated the time from admission to family meeting and to patient death or discharge.
RESULTS: Of the 131 patients who met inclusion criteria in the 12-month study period, the median time from admission to family meeting was 4 days. Fewer than half of patients had a documented family meeting within 72 hours of admission (n = 60/131, 46%), with substantial interphysician variability in meeting rates ranging from 28% to 63%. Patients with family meetings within 72 hours were 30 times more likely to die within 72 hours (32% vs 1%, P < .001). Of the 55 patients who died in the intensive care unit, 27 (49%) had their first family meeting within 1 day of death.
CONCLUSIONS: Family meetings occur considerably later than 72 hours and are often held in close proximity to a patient's death. This suggests for some physicians, family meetings may primarily be used to negotiate withdrawal of life support rather than to support the patient and family.
BACKGROUND: Advance care planning (ACP), palliative care (PC), and hospice are often underutilized by African Americans (AAs). This study assessed the impact of stage of intent to discuss ACP options as key potential barriers.
METHODS: We examined intent to discuss completion of ACP, PC, and hospice among 22 AA patients with cancer admitted to a local safety net hospital. Participants were asked about intent to discuss an advanced directive or living will (AD/LW), medical power of attorney (MPOA), PC, and hospice with their doctors. Intent to discuss these ACP components was based on the transtheoretical model. Electronic health records were reviewed at various intervals to assess completion of ACP behaviors and survival.
RESULTS: Participants had colorectal (33%), breast (44%), and lung (23%) cancer, and 82% had stage III/IV disease. Low percentages of patients were in the precontemplation stage for AD/LW completion (4.6%), MPOA completion (13.6%), and PC discussions (27.2%), but 77.2% were in the precontemplation stage for hospice discussions. At 1 year, only 5% completed an AD/LW, 36.4% appointed an MPOA, 42.9% were referred to PC, and 12.5% were referred to hospice. More than half (54.6%) were deceased by the study's conclusion. Most (81%) of these died within 6 months of their baseline study assessment.
CONCLUSIONS: Despite being hospitalized with advanced cancer and having poor prognosis, intent to discuss ACP options, PC, and hospice in this population was variable, and completion of these activities was low. This formative research is needed to develop education and counseling interventions for this high-risk, vulnerable population.
OBJECTIVE: To develop and validate a simple prognostic tool for early prediction of survival of patients with advanced cancer in a tertiary care setting.
DESIGN: Prospective cohort study with 2 years' follow-up.
SETTING: Single tertiary teaching hospital in Singapore.
PARTICIPANTS: The study includes consecutive patients diagnosed with advanced cancer who were referred to a palliative care unit between 2013 and 2015 (N=840). Data were randomly split into training (n=560) and validation (n=280) sets.
RESULTS: 743 (88.5%) patients died with a mean follow-up of 97.0 days (SD 174.0). Cox regression modelling was used to build a prognostic model, cross-validating with six randomly split dataset pairs. Predictor variables for the model included functional status (Palliative Performance Scale, PPS V.2), symptoms (Edmonton Symptom Assessment System, ESASr), clinical assessment (eg, the number of organ systems with metastasis, serum albumin and total white cell count level) and patient demographics. The area under the receiver operating characteristic curve using the final averaged prognostic model was between 0.69 and 0.75. Our model classified patients into three prognostic groups, with a median survival of 79.0 days (IQR 175.0) for the low-risk group (0-1.5 points), 42.0 days (IQR 75.0) for the medium-risk group (2.0-5.5 points), and 15.0 days (IQR 28.0) for the high-risk group (6.0-10.5 points).
CONCLUSIONS: PROgnostic Model for Advanced Cancer (PRO-MAC) takes into account patient and disease-related factors and identify high-risk patients with 90-day mortality. PPS V.2 and ESASr are important predictors. PRO-MAC will help physicians identify patients earlier for supportive care, facilitating multidisciplinary, shared decision-making.
Studies have found that sibling loss is associated with an increased risk of death from external causes (i.e. suicides, accidents and homicides). Increased psychiatric health problems following bereavement could underlie such an association. We studied the influence of sibling loss during childhood on psychiatric care in young adulthood, adjusting for psychosocial covariates shared by siblings in childhood. A national cohort born in Sweden in 1973-1982 (N = 701,270) was followed prospectively until 2013. Cox proportional hazards models were used to analyse the association between sibling loss during childhood and psychiatric inpatient and outpatient care identified by the Hospital Discharge Register. After adjustment for confounders, the HRs of psychiatric care in men who experienced sibling loss were 1.17 (95% CI 1.07-1.27) while the associations turned non-significant in women after adjustment for family-related psychosocial covariates, HR 1.07 (95% CI 0.99-1.16). An increased risk was found in men bereaved in early childhood (1.22 95% CI 1.07-1.38) and adolescence (1.27 95% CI 1.08-1.48). Among women, loss of a sibling during adolescence was significantly associated with psychiatric care (1.19 95% CI 1.03-1.36). Increased psychiatric health problems following bereavement could underlie the previously found association between sibling loss and mortality from external causes. Family-related psychosocial conditions shared by siblings in childhood may account for the association between sibling death and psychiatric care in adulthood.
Background: Location of death (LOD) is an important aspect of end-of-life (EOL) care. Adolescents and young adults (YAs) with pediatric malignancies are increasingly treated in pediatric institutions. YAs, generally defined as 18-39 years old, deserve specific attention because adults have unique developmental and social considerations compared with younger patients.
Objective: The goal of this retrospective cohort study was to understand the effect of treatment by a pediatric oncology program on EOL experiences for YAs. Specifically, we examined LOD, hospice, and palliative care (PC) involvement in a cohort of YAs who died of cancer in a large, quaternary care pediatric hospital.
Methods: This was a retrospective cohort study of patients >= 18 years of age, who died of cancer between January 1, 2010, and December 31, 2017. Standardized data were abstracted from the institutional cancer registry and the electronic medical record.
Results: YAs in this cohort more commonly died in the hospital (54.9%). Lack of hospice involvement and the presence of a documented do-not-resuscitate (DNR) order were significantly associated with inpatient death. The majority of patients had long-standing PC involvement (95.8%, median 318 days), a DNR order (78.9%), and had enrolled in hospice care (60.6%) before death.
Conclusions: These results suggest that a significant proportion of YAs with cancer remain inpatient for EOL care. Pediatric oncologists and PC teams may benefit from additional training in the unique psychosocial needs of YAs to optimize EOL care for these older patients.
BACKGROUND: Racial and ethnic disparities in the provision of end-of-life care are well described in the adult oncology literature. However, the impact of racial and ethnic disparities at end of life in the context of pediatric oncology remains poorly understood.
OBJECTIVE: To investigate associations between end-of-life experiences and race/ethnicity for pediatric patients with cancer.
METHODS:: A retrospective cohort study was conducted on 321 children with cancer enrolled on a palliative care service at an urban pediatric cancer who died between 2011 and 2015.
RESULTS: Compared to white patients, black patients were more likely to receive cardiopulmonary resuscitation (CPR; odds ratio [OR]: 4.109, confidence interval [CI]: 1.432-11.790, P = .009) and underwent 3.136 (CI: 1.433-6.869, P = .004) CPR events for every 1 white patient CPR event. The remainder of variables related to treatment and end-of-life care were not significantly correlated with race. Hispanic patients were less likely to receive cancer-directed therapy within 28 days prior to death (OR: 0.493, CI: 0.247-0.982, P = .044) as compared to non-Hispanic patients, yet they were more likely to report a goal of cure over comfort as compared to non-Hispanic patients (OR: 3.094, CI: 1.043-9.174, P = .042). The remainder of variables were not found to be significantly correlated with ethnicity.
CONCLUSIONS: Race and ethnicity influenced select end-of-life variables for pediatric palliative oncology patients treated at a large urban pediatric cancer center. Further multicenter investigation is needed to ascertain the impact of racial/ethnic disparities on end-of-life experiences of children with cancer.
Background: Access to palliative care has been associated with improving quality of life and reducing the use of potentially aggressive end-of-life care. However, many challenges and barriers exist in providing palliative care to residents in northern and rural settings in Ontario, Canada.
Aim: The purpose of this study was to examine access to palliative care and associations with the use of end-of-life care in a decedent cohort of northern and southern, rural and urban, residents.
Design: Using linked administrative databases, residents were classified into geographic and rural categories. Regression methods were used to define use and associations of palliative and end-of-life care and death in acute care hospital.
Setting/Participants: A decedent cancer cohort of Ontario residents (2007-2012).
Results: Northern rural residents were less likely to receive palliative care (adjusted odds ratio [OR] = 0.90, 95% confidence interval [CI]: 0.83-0.97). Those not receiving palliative care were more likely to receive potentially aggressive end-of-life care and die in an acute care hospital (adjusted OR = 1.20, 95% CI: 1.02-1.41).
Conclusions: Palliative care was significantly associated with reduced use of aggressive end-of-life care; however, disparities exist in rural locations, especially those in the north. Higher usage of emergency department (ED) and hospital resources at end of life in rural locations also reflects differing roles of rural community hospitals compared with urban hospitals. Improving access to palliative care in rural and northern locations is an important care issue and may reduce use of potentially aggressive end-of-life care.
OBJECTIVES: Use of intensive care is increasing in the United States and may be associated with high financial burden on patients and their families near the end of life. Our objective was to estimate out-of-pocket costs in the last year of life for individuals who required intensive care in the months prior to death and examine how these costs vary by insurance coverage.
DESIGN: Observational cohort study using seven waves of post-death interview data (2002-2014).
PARTICIPANTS: Decedents (n = 2,909) who spent time in the ICU at some point between their last interview and death.
MEASUREMENTS AND MAIN RESULTS: Two-part models were used to estimate out-of-pocket costs for direct medical care and health-related services by type of care and insurance coverage. Decedents with only traditional Medicare fee-for-service coverage have the highest out-of-pocket spending in the last year of life, estimated at $12,668 (95% CI, $9,744-15,592), second to only the uninsured. Medicare Advantage and private insurance provide slightly more comprehensive coverage. Individuals who spend-down to Medicaid coverage have 4× the out-of-pocket spending as those continuously on Medicaid.
CONCLUSIONS: Across all categories of insurance coverage, out-of-pocket spending in the last 12 months of life is high and represents a significant portion of assets for many patients requiring intensive care and their families. Medicare fee-for-service alone does not insulate individuals from the financial burden of high-intensity care, due to lack of an out-of-pocket maximum and a relatively high co-payment for hospitalizations. Medicaid plays an important role in the social safety net, providing the most complete hospital coverage of all the insurance groups, as well as significantly financing long-term care.
Objective: The objective of this study was to estimate palliative care needs and to describe the cohort of children with life-limiting illnesses (LLI) dying in hospitals.
Design: This study was a retrospective cohort study. The national hospital admissions database was reviewed and children who had died who had life-limiting illnesses were identified.
Setting: This study was conducted at Ministry of Health hospitals, Malaysia.
Patients: Children aged 18 years and below who had died between January 1, 2012 and December 31, 2014.
Main Outcome Measures: Life-limiting diagnoses based on Hain et al.'s directory of LLI or the ACT/RCPCH categories of life-limiting disease trajectories.
Results: There were 8907 deaths and 3958 (44.4%) were that of children with LLI. The majority, 2531 (63.9%) of children with LLI were neonates, and the most common diagnosis was extreme prematurity <28 weeks with 676 children (26.7%). For the nonneonatal age group, the median age at admission was 42 months (1-216 months). A majority, 456 (32.0%) had diagnoses from the ICD-10 chapter "Neoplasms" followed by 360 (25.3%) who had a diagnoses from "Congenital malformations, deformations, and chromosomal abnormalities" and 139 (9.7%) with diagnoses from "Disease of the nervous system." While a majority of the terminal admissions were to the general ward, there were children from the nonneonatal age group, 202 (14.2%) who died in nonpediatric wards.
Conclusion: Understanding the characteristics of children with LLI who die in hospitals could contribute toward a more efficient pediatric palliative care (PPC) service development. PPC service should include perinatal and neonatal palliative care. Palliative care education needs to extend to nonpediatric healthcare providers who also have to manage children with LLI.
Background: Palliative care (pc) consultation has been associated with less aggressive care at end of life in a number of malignancies, but the effect of the consultation timing has not yet been fully characterized. For patients with unresectable pancreatic cancer (upcc), aggressive and resource-intensive treatment at the end of life can be costly, but not necessarily of better quality. In the present study, we investigated the association, if any, between the timing of specialist pc consultation and indicators of aggressive care at end of life in patients with upcc.
Methods: This retrospective cohort study examined the potential effect of the timing of specialist pc consultation on key indicators of aggressive care at end of life in all patients diagnosed with upcc in Nova Scotia between 1 January 2010 and 31 December 2015. Statistical analysis included univariable and multivariable logistic regression.
Results: In the 365 patients identified for inclusion in the study, specialist pc consultation was found to be associated with decreased odds of experiencing an indicator of aggressive care at end of life; however, the timing of the consultation was not significant. Residency in an urban area was associated with decreased odds of experiencing an indicator of aggressive care at end of life. We observed no association between experiencing an indicator of aggressive care at end of life and consultation with medical oncology or radiation oncology.
Conclusions: Regardless of timing, specialist pc consultation was associated with decreased odds of experiencing an indicator of aggressive care at end of life. That finding provides further evidence to support the integral role of pc in managing patients with a life-limiting malignancy.
BACKGROUND: Health care expenditures (HCE) are known to steepen with increasing age, but the contributions of biological age, morbidity, or proximity to death as cost drivers are debated. Age-associated HCE growth can be studied across two dimensions: within fixed groups of persons with the same birth year followed over time (birth cohort), or the same age classes (e.g. 66 to 70 year olds) at different time points (age-class analysis). Using health insurance claims data including morbidity and mortality information, HCE growth was analyzed in Swiss mandatory health insurance for the years 1996 to 2011 and compared across the two age dimensions.
RESULTS: Deflated HCE were analyzed for 104,000 persons from three birth cohorts (1921-25, 1926-30, 1931-35). Two-part regression models were adjusted for proximity-to-death (death within same or next calendar year) and morbidity indicators (hospitalization, high drug expenditures, and pharmaceutical cost groups from 2006 onwards). When analyzing HCE growth within birth cohorts, controlling for survival and morbidity status decreased age-associated HCE estimates by 31% to 51% compared to crude age averages. The total HCE volume share of decedents rose from 19% to 31% in the 1931-35 birth cohort and from 28% to 51% for the 1921-25 birth cohort. The analysis of same age classes (e.g. 71-75 year olds) over different years revealed no HCE growth (steepening) in excess of deflation for groups aged 75 years or less, and only moderate HCE growth for those =76 years. For the 76+ age classes, the population fraction of decedents decreased by -3% (age 76-80) and -15% (age 81-85) over time, whilst the total HCE volume share of decedent-associated HCE increased by +16% and +9%, with an HCE growth of +3.2% and +2.5% per year.
CONCLUSIONS: HCE growth was dominated by end-of-life HCE, but residual age-associated HCE growth remained pertinent, the extent of which however depended on morbidity indicator definitions. A better understanding of shifts in chronic disease prevalence with rising age, as well as associated HCE and survival impacts of treatment will be key for further refining future HCE projections.
Importance: The recent parenteral opioid shortage (POS) has potential implications for cancer-related pain management in hospitalized patients.
Objective: This study compared changes in opioid prescriptions and clinically improved pain (CIP) among patients treated by an inpatient palliative care (PC) team before and after our institution first reported the POS.
Design, Setting, and Participants: A cohort study of 386 eligible patients with cancer treated at a comprehensive cancer center 1 month before and after the announcement of the POS. We reviewed data from electronic health records, including patient demographics, opioid type, route of administration, and dose. Board-certified palliative care specialists assessed CIP at follow-up day 1.
Exposures: The announcement of the POS by the institution's pharmacy and therapeutics committee on February 8, 2018.
Main Outcomes and Measures: The primary outcome was to measure the change in opioid prescription patterns of physicians, and the secondary outcome was to measure the proportion of patients who achieved CIP before and after announcement of the POS.
Results: Of 386 eligible patients, 196 were men (51%), 270 were white (70%), and the median age was 58 years (interquartile range, 46-67 years). Parenteral opioids were prescribed less frequently by the referring oncology teams after the POS (56 of 314 [18%]) vs before the POS (109 of 311 [35%]) (P < .001). The PC team also prescribed fewer parenteral opioids after the POS (96 of 336 [29%]) vs before the POS (159 of 338 [47%]) (P < .001). After the POS (vs before the POS), significantly fewer patients achieved CIP on follow-up day 1 (119 [62%] vs 144 [75%] of 193; P = .01). Multivariate analysis showed that before the POS, patients had an 89% higher chance of achieving CIP on follow-up day 1 (odds ratio, 1.89; 95% CI, 1.22-2.94; P = .005).
Conclusions and Relevance: There was a significant change in opioid prescription patterns associated with the POS. Furthermore, after the POS, fewer patients achieved CIP. These factors have potential implications for patient satisfaction and hospital length of stay.
AIMS: Estimating survival is challenging in the terminal phase of advanced heart failure. Patients, families, and health-care organizations would benefit from more reliable prognostic tools. The Palliative Performance Scale Version 2 (PPSv2) is a reliable and validated tool used to measure functional performance; higher scores indicate higher functionality. It has been widely used to estimate survival in patients with cancer but rarely used in patients with heart failure. The aim of this study was to identify prognostic cut-points of the PPSv2 for predicting survival among patients with heart failure receiving home hospice care.
METHODS AND RESULTS: This retrospective cohort study included 1114 adult patients with a primary diagnosis of heart failure from a not-for-profit hospice agency between January 2013 and May 2017. The primary outcome was survival time. A Cox proportional-hazards model and sensitivity analyses were used to examine the association between PPSv2 scores and survival time, controlling for demographic and clinical variables. Receiver operating characteristic curves were plotted to quantify the diagnostic performance of PPSv2 scores by survival time. Lower PPSv2 scores on admission to hospice were associated with decreased median (interquartile range, IQR) survival time [PPSv2 10 = 2 IQR: 1-5 days; PPSv2 20 = 3 IQR: 2-8 days] IQR: 55-207. The discrimination of the PPSv2 at baseline for predicting death was highest at 7 days [area under the curve (AUC) = 0.802], followed by an AUC of 0.774 at 14 days, an AUC of 0.736 at 30 days, and an AUC of 0.705 at 90 days.
CONCLUSIONS: The PPSv2 tool can be used by health-care providers for prognostication of hospice-enrolled patients with heart failure who are at high risk of near-term death. It has the greatest utility in patients who have the most functional impairment.
BACKGROUND: Earlier palliative care consultation is associated with less intensive medical care and improved quality outcomes for patients with cancer. However, there are limited data about how the timing of palliative care affects utilization among noncancer patients exposed to palliative care consultation.
OBJECTIVE: Comparison of health care utilization for hospice decedents who received early versus late palliative care.
DESIGN: A retrospective cohort study utilizing hospital and hospice administrative databases.
SETTING/SUBJECTS: Patients with cancer and noncancer diagnoses who received specialty palliative care consultation before dying at a local hospice.
MEASUREMENTS: Comparing early (>90 days before death) versus late (<90 days before death) palliative care, outcome measures included intensive care unit (ICU) utilization and hospice length of stay (LOS).
RESULTS: Of 233 hospice decedents in 2014 who had palliative care referrals, 36 (15.4%) had early and 197 (84.5%) had late referrals. Nearly half of the patients had a noncancer hospice diagnosis. Only 6% of the early group used the ICU in the last month of life, whereas 56% of the late group did. Patients receiving early palliative care had a longer median hospice LOS than those with late palliative care (138 days vs. 8 days).
CONCLUSIONS: Early palliative care appears to reduce intensive medical care and increase hospice LOS for patients with a variety of end-stage diseases.
Background: The impact of specialty pediatric palliative care (PPC) on intensive care unit (ICU) length of stay for children is unclear.
Objective: To estimate the impact of PPC consultation by analyzing ICU stay as a dynamic outcome over the course of hospitalization.
Patients and Methods: Retrospective cohort study of children hospitalized with diagnoses suggested as referral triggers for PPC at a large academic children's hospital. We assessed ICU stay according to PPC consultation and, using a patient-day analysis, applied multivariable mixed effects logistic regression to predict the odds of being in the ICU on a given day.
Results: The analytic sample included 777 admissions (11,954 hospital days), of which 100 admissions (13%) included PPC consultation. Principal patient demographics were age 8 ± 6 years, 55% male sex, 71% white race, and 52% commercial insurance. Cardiac diagnoses were most frequent (29%) followed by gastrointestinal (22%) and malignant (20%) conditions. Although total ICU stay was longer for admissions, including PPC consultation (compared to admissions where PPC was not consulted), the odds of being in the ICU on a given day were reduced by 79% after PPC consultation (odds ratio [OR] = 0.21; 95% confidence interval [CI]: 0.13–0.34; p < 0.001) for children with cancer and 85% (OR = 0.15; 95% CI: 0.08–0.26; p < 0.001) for children with nononcologic conditions.
Conclusions: Among children hospitalized with a diagnosis deemed eligible for specialty PPC, the likelihood of being in the ICU on a given day was strongly reduced after PPC consultation, supporting the value of PPC.
OBJECTIVE: To identify factors related to decisional conflict among surrogate decision makers for home medical care (HMC) patients.
DESIGN: Prospective Cohort Study.
SETTING/SUBJECTS: For older patients receiving HMC from four different primary care clinics in Japan from January 2016 to June 2017, we studied the family member with the main potential for surrogate decision making.
MEASUREMENTS: At the baseline, surrogates filled out a baseline questionnaire on their characteristics and decision readiness, while the attending doctors provided information about the patients' characteristics. Patient-and-surrogate pairs were tracked for up to six months after the baseline or for three months in the case of death, hospitalization, or admittance to a nursing home. After this tracking, surrogates filled out a follow-up questionnaire on their decision-making experiences, including decisional conflict.
RESULTS: Of the original 159 patient-and-surrogate pairs, 121 (76.1%) responded to the follow-up questionnaire. During the follow-up period, 32 patients (26.4% of the patients followed up) died and 69 (57.0%) experienced decision making. Among surrogates who made decisions, the mean score of decisional conflict was 36.2 (standard deviation 14.7), and 43.5% were above the threshold relating to decision delay. Anticipatory guidance and discussion on the patient's care goals at the beginning of HMC were the two variables significantly associated with less decisional conflict of surrogates.
CONCLUSIONS: Families felt less conflict with surrogate decision making if they had participated in previous discussions with doctors regarding the patients' care goals. Early-stage anticipatory guidance and discussion are a good opportunity for families to prepare for surrogate decision making.