OBJECTIVE: Quality end-of-life (EOL) care is critical for dying residents and their family/friend caregivers. While best practices to support resident comfort at EOL in long-term care (LTC) homes are emerging, research rarely explores if and how the type of care received at EOL may contribute to caregivers' perceptions of a good death. To address this gap, this study explored how care practices at EOL contributed to caregivers' perceptions of a good resident death.
METHOD: This study used a retrospective cross-sectional survey design. Seventy-eight participants whose relative or friend died in one of five LTC homes in Canada completed self-administered questionnaires on their perceptions of EOL care and perceptions of a good resident death.
RESULTS: Overall, caregivers reported positive experiences with EOL care and perceived residents to have died a good death. However, communication regarding what to expect in the final days of life and attention to spiritual issues were often missing components of care. Further, when explored alongside direct resident care, family support, and rooming conditions, staff communication was the only aspect of EOL care significantly associated with caregivers' perceptions of a good resident death.
SIGNIFICANCE OF RESULTS: The findings of this study suggest that the critical role staff in LTC play in supporting caregivers' perceptions of a good resident death. By keeping caregivers informed about expectations at the very end of life, staff can enhance caregivers' perceptions of a good resident death. Further, by addressing spiritual issues staff may improve caregivers' perceptions that residents were at peace when they died.
BACKGROUND/OBJECTIVES: acute hospitalization may be an ideal opportunity to introduce palliative care to dementia patients, who may benefit from symptom management and goals of care discussions. We know little about patients who receive inpatient palliative care consultations (IPCCs).
DESIGN: Retrospective analysis using electronic medical record.
SETTING: Tertiary academic medical center and affiliated community hospital.
PARTICIPANTS: Patients with dementia by International Classification of Diseases diagnosis, 65 years or older, hospitalized between July 1, 2015, and December 31, 2015.
MEASUREMENTS: We used 2 and t -test/Mann-Whitney U test to compare characteristics (living arrangement, advanced dementia markers, diagnoses of delirium and dementia with behavior disturbance, and admitting diagnosis) and outcomes (change in code status, length of stay [LOS], discharge disposition, and discharge medications for symptom management) of patients who did and did not receive IPCC. Patients were matched on sex, age, and race.
RESULTS: Among 927 hospitalized patients with dementia, 17% received IPCC (N = 157). Patients who received IPCC were more likely to be admitted from a nursing facility (35.7% vs 12.7%; P < .0001), experience delirium (71.3% vs 57.3%; P = .01), have behavior disturbance (23.6% vs 13.4%; P = .02), have a pressure ulcer at admission (26.1% vs 11.5%; P = .001), have hypernatremia (12.7% vs 3.2%; P = .002), and be bedbound (20.4% vs 3.2%; P < .000). Patients who received IPCC had a longer LOS (median = 5.9 vs 4.3 days; P = .004) and were more likely to be discharged to hospice (56% vs 3.1%; P < .0001). Patients with IPCC were more likely to have a discharge code status of do not attempt resuscitation (89% vs 46%). There was no significant difference in comfort medications at discharge between groups.
CONCLUSIONS: Patients who received IPCC had evidence of more advanced dementia. These patients were more likely to change their code status and enroll in hospice. IPCC may be useful to prioritize patient-centered care and discuss what matters most to patients and families.
Purpose: Our study aimed to evaluate the association between CDS and survival time using the likelihood of receiving CDS to select a matched non-CDS group through an accurate measurement of survival time based on initiation of CDS.
Methods: A retrospective cohort study was performed using an electronic database to collect data regarding terminally ill cancer patients admitted to a specialized palliative care unit from January 2012 to December 2016. We first used a Cox proportional hazard model with receiving CDS as the outcome to identify individuals with the highest plausibility of receiving CDS among the non-CDS group (n = 663). We then performed a multiple regression analysis comparing the CDS group (n = 311) and weighted non-CDS group (n = 311), using initiation of CDS (actual for the CDS group; estimated for the non-CDS group) as the starting time-point for measuring survival time.
Results: Approximately 32% of participants received CDS. The most common indications were delirium or agitation (58.2%), intractable pain (28.9%), and dyspnea (10.6%). Final multiple regression analysis revealed that survival time was longer in the CDS group than in the non-CDS group (Exp(ß), 1.41; P < 0.001). Longer survival with CDS was more prominent in females, patients with renal dysfunction, and individuals with low C-reactive protein (CRP) or ferritin, compared with their counterpart subgroup.
Conclusions: CDS was not associated with shortened survival; instead, it was associated with longer survival in our terminally ill cancer patients. Further studies in other populations are required to confirm or refute these findings.
OBJECTIVE: To explore the trends and utilization of palliative care (PC) service among inpatients with metastatic bladder cancer (MBC).
METHODS: A retrospective, cross-sectional analysis was performed using data from the 2003 to 2014 National Inpatient Sample. Palliative care was identified through International Classification of Diseases, Ninth Revision code V66.7. Demographics, comorbidities, hospital characteristics, tumor-related, and treatment-related factors were compared between patients with and without PC. Multivariable logistic regression was used to explore predictors of PC use.
RESULTS: Among 131 852 patients with MBC, 13 224 (10.03%) received PC. Rate of PC increased from 2.49% in 2003 to 28.39% in 2014 (P < .0001). Similarly, rate of PC in decedents increased from 7.02% in 2003 to 54.86% in 2014 (P < .0001). Patients receiving PC were older, tendered to be white, had more comorbidities, and higher all-patient refined diagnosis-related group mortality risk. Predictors of PC included age (odds ratio [OR]: 1.02; 95% CI: 1.01-1.02; P < .0001), Medicaid (OR: 1.87; 95%.CI: 1.54-2.26; P < .0001), and private (OR: 1.61; 95% CI: 1.40-1.84; P < .0001) insurance, hospitals in the West (OR: 1.33; 95% CI: 1.10-1.61; P = .0032), and Mid-west (OR: 1.46; 95% CI: 1.22-1.75; P = .0032), major (OR: 1.32; 95% CI: 1.11-1.49; P < .0001), and extreme (OR: 2.37; 95% CI: 2.04-2.76; P < .0001) mortality risk. Chemotherapy and mechanical ventilation were related with lower odds of PC use. Palliative care predictors in the decedents were similar to those in overall patients with bladder cancer.
CONCLUSIONS: Palliative care encounter in MBC shows an increasing trend. However, it still remains very low. Disparities in PC use covered age, insurance, and hospital characteristics among metastatic bladder cancer in the United States.
BACKGROUND: There is a gap in knowledge about the kind and quality of care experienced by hospital patients at the end of their lives.
AIMS: To document and compare the patterns in end-of-life care for patients dying across a range of different medical units in an acute care hospital.
METHODS: A retrospective observational study of consecutive adult inpatient deaths between 1 July 2010 and 30 June 2014 in four different medical units of an Australian tertiary referral hospital was performed. Units were selected on the basis of highest inpatient death rates and included medical oncology, respiratory medicine, cardiology and gastroenterology/hepatology.
RESULTS: Overall, 41% of patients died with active medical treatment plans, but significantly more respiratory and cardiology patients died with ongoing treatment (46 and 75% respectively) than medical oncology and gastroenterology patients (each 27%, P < 0.05). More medical oncology and gastroenterology patients were recognised as dying (92 and 88%) compared with 72% of respiratory and only 38% of cardiology patients (P < 0.001). Significantly, more medical oncology patients were referred to palliative care and received comfort care plans than all other patient groups. However, the rate of non-palliative interventions given in the final 48 h was not significantly different between all four groups.
CONCLUSIONS: There were differences in managing the dying process between all disciplines. A possible solution to these discrepancies would be to create an integrated palliative care approach across the hospital. Improving and reducing interdisciplinary practice variations will allow more patients to have a high-quality and safe death in acute hospitals.
PURPOSE: To determine how demographic, socioeconomic, health and psychosocial factors predict preferences to accept life prolonging treatments (LPT) at the end of life.
METHODS: This is a retrospective cohort study of a nationally representative sample of community-dwelling older Americans (N=1,648). Acceptance of LPT was defined as wanting to receive all life prolonging treatments in the hypothetical event of severe disability or severe chronic pain at the end of life (EOL). Participants with a DPOA, living will or who discussed EOL with family were determined to have expressed their EOL preferences. The primary analysis used survey-weighted logistic regression to measure the association between older adult characteristics and acceptance of LPT. Secondarily, the associations between LPT preferences and health outcomes were measured using regression models.
RESULTS: Approximately 31% of older adults would accept LPT. Non-white race/ethnicity (OR=0.54, CI (0.41,0.70), White vs. non-White), self-realization (OR=1.34, CI (1.01,1.79)), attendance of religious services (OR=1.44, CI (1.07,1.94)), and expression of preferences (OR=0.54, CI(0.40,0.72)) were associated with acceptance of LPT. LPT preferences were not independently associated with mortality or disability.
CONCLUSIONS: Approximately 1/3 of older Americans would accept LPT in the setting of severe disability or severe chronic pain at the end of life. Adults who discussed their EOL preferences were more likely to reject LPT. Conversely, minorities were more likely to accept LPT. Sociodemographics, physical capacity and health status were poor predictors of acceptance of LPT. A better understanding of the complexities of LPT preferences is important to ensuring patient-centered care.
Continuous deep sedation (CDS) is used to alleviate unbearable and otherwise refractory symptoms in patients dying of cancer. No data are available concerning CDS in children from Japan to date. This study primarily aimed to describe experience in CDS in child cancer patients at Kyoto University Hospital. The secondary aims were to identify the characteristics of patients who received CDS, and to assess ability in daily living at the end of life. A retrospective chart review was performed for child cancer patients who died at the institute between 2008 and 2017. The data of 35 patients were analyzed. Nine (26%) patients had received CDS. Indications for CDS were dyspnea (56%), agitation (22%), seizures (22%), and pain (11%). Midazolam was used in all nine cases. In eight (89%) patients, opioids were also prescribed. In seven (78%) patients, CDS was performed for < 48 hours. In all nine cases, consent was obtained from the parent(s) but not from the children. CDS was more likely in patients with solid tumors (p = 0.018) and those who had received no respite sedation (p = 0.002). Patients without central nervous system symptoms tended to maintain their capacity for oral intake and verbal communication until a few days prior to death. This is the first report on CDS in child cancer patients from Japan. In the CDS literature, cross-study differences are evident for incidence, target symptoms, duration, and the decision-making process. Further international discussion is warranted concerning indications for CDS and the decision-making process.
Background: The optimal timing to introduce palliative care (PC) and end-of-life (EOL) conversations into the lives of people with cystic fibrosis (CF) has not been established.
Objective: Compare EOL care practices for people with CF who died without a lung transplant (LT), are living without an LT, and those who received an LT.
Design: Retrospective chart review.
Setting/Subjects: People with CF who received care from 2012 to 2017 at the University of Texas Southwestern Medical Center.
Measurements: Primary outcomes were (1) EOL discussion with a pulmonologist, (2) time of EOL discussion before death or LT, (3) evaluation by PC, and (4) documentation of advanced directive or medical power of attorney.
Results: Twenty-three patients died without LT, 40 patients received an LT, and 222 were living without an LT. Among LT recipients, 10% had EOL conversations compared with 74% of deceased patients and 5% of living patients without LT (p = 0.001). Among deceased patients, 39% had EOL conversations more than six months before death, while 5% of transplanted patients had EOL conversation more than six months before LT (p < 0.001). Deceased patients were more likely to have seen PC (57%) than either patients who received LT (2%) or those living without LT (3%, p = 0.0001).
Conclusions: Patients who died without LT were more likely to have seen PC and had an EOL conversation than patients who received LT or who are living without LT. Further research should explore the optimal timing to discuss EOL care and the best timing to involve PC.
Objectives: To discuss the outcomes of a formalized care transition process for palliative care patients from the hospital to the community.
Background: Patients who received inpatient palliative care services from the specialist palliative care team in the hospital or who were identified as needing community palliative care services have inadequate support on discharge.
Methods: A retrospective review of the medical records of patients admitted to the community based palliative care (CBPC) program, Arizona Palliative Home Care (AZPHC) over a 12-month period (June 2018 to May 2019) was undertaken with a focus on the frequency and pattern of hospital events pre- and postadmission to the program. Patient/family satisfaction data obtained from telephone surveys were evaluated. The medical records from patients (n = 294) with advanced complex illnesses who were admitted to AZPHC from the five Honor Health Network hospitals were included in this study.
Results: Of the 294 patients' records reviewed, 80% were in the 65 and older age group and had a mean length of stay on AZPHC of [about] 40 days. Comparing acute care utilization pre and post AZPHC admission, there was a reduction of 68.95% at 60 days and 68.22% at 90 days. In addition, 128 avoided hospital events were recorded, and 86% of patients were very likely to recommend AZPHC to family or friends.
Discussion: Collaboration between a hospital palliative care team and a CBPC program resulted in high quality transitions across care settings and reduction in acute care utilization.
The integration of specialized geriatric providers with trauma services has received increased attention with promising results. Palliative medicine consultation (PMC) has been shown to reduce length of stay, improve symptom management, and clarify advance directives in the geriatric trauma population. The aim of this study was to evaluate whether PMC reduced tracheostomies and percutaneous endoscopic gastrostomies (trach/PEG) and readmission rates in the geriatric trauma population. Retrospective cohort analysis of patients 65 years of age and older, admitted to a Level I trauma center surgical intensive care unit from 2013 to 2014. Patients who died within 1 day were excluded. Statistical analyses included descriptive statistics, independent-samples t test for continuous variables, 2 test for categorical variables, and logistic regression analysis. A total of 202 patients were included. Palliative medicine consultation occurred in 48%. Average time from admission to PMC was 2.91 days. Thirty-day readmission rate was 19.3%. Patients with a PMC (69.1%) were less likely to undergo trach/PEG (30.9%; p < .001) but more likely if the consult was late (>72 hr posttrauma; 22.0% vs. 40.4%; p = .05). Patients without a trach/PEG were more likely to survive 1 year posttrauma (85.7% vs. 14.3%; p = .003). Thirty-day readmission rates were similar between groups. In a logistic regression analysis, PMC, age, and injury severity score demonstrated an independent association with trach/PEG (all p < .05). Early palliative consults (<72 hr posttrauma) for geriatric trauma patients may reduce tracheostomy and percutaneous endoscopic gastrostomy procedures and hospital stays.
BACKGROUND: There is increasing recognition of the importance of early incorporation of palliative care services in the care of patients with advanced cancers. Hospice-based palliative care remains underutilized for black patients with cancer, and there is limited literature on racial disparities in use of non-hospice-based palliative care services for patients with cancer.
OBJECTIVE: The primary objective of this study is to describe racial differences in the use of inpatient palliative care consultations (IPCC) for patients with advanced cancer who are admitted to a hospital in the United States.
DESIGN: This retrospective cohort study analyzed 204 175 hospital admissions of patients with advanced cancers between 2012 and 2014. The cohort was identified through the National Inpatient Dataset. International Classification of Disease, Ninth Revision codes were used to identify receipt of a palliative care consultation.
RESULTS: Of this, 57.7% of those who died received IPCC compared to 10.5% who were discharged alive. In multivariable logistic regression models, black patients discharged from the hospital, were significantly less likely to receive a palliative care consult compared to white patients (odds ratio [OR] black: 0.69, 95% CI: 0.62-0.76).
CONCLUSIONS: Death during hospitalization was a significant modifier of the relationship between race and receipt of palliative care consultation. There are significant racial disparities in the utilization of IPCC for patients with advanced cancer.
Background: Patients requiring mechanical ventilation (MV) have high morbidity and mortality. Providing palliative care has been suggested as a way to improve comprehensive management. The objective of this retrospective cross-sectional study was to identify predictors for palliative care utilization and the association with hospital length of stay (LOS) among surgical patients requiring prolonged MV (= 96 consecutive hours).
Methods: National Inpatient Sample (NIS) data 2009–2013 was used to identify adults (age = 18) who had a surgical procedure and required prolonged MV (= 96 consecutive hours), as well as patients who also had a palliative care encounter. Outcomes were palliative care utilization and association with hospital LOS.
Results: Utilization of palliative care among surgical patients with prolonged MV increased yearly, from 5.7% in 2009 to 11.0% in 2013 (p < 0.001). For prolonged MV surgical patients who died, palliative care increased from 15.8% in 2009 to 33.2% in 2013 (p < 0.001). Median hospital LOS for patients with and without palliative care was 16 and 18 days, respectively (p < 0.001). Patients discharged to either short or long term care facilities had a shorter LOS if palliative care was provided (20 vs. 24 days, p < 0.001). Factors associated with palliative care utilization included older age, malignancy, and teaching hospitals. Non-Caucasian race was associated with less palliative care utilization.
Conclusions: Among surgical patients receiving prolonged MV, palliative care utilization is increasing, although it remains low. Palliative care is associated with shorter hospital LOS for patients discharged to short or long term care facilities.
BACKGROUND: Acute hospitalization is a frequent reason for live discharge from hospice. Although risk factors for live discharge among hospice patients have been well documented, prior research has not examined the role of neighborhood socioeconomic characteristics, or how these characteristics relate to racial/ethnic disparities in hospice outcomes.
OBJECTIVE: To examine associations between neighborhood socioeconomic characteristics and risk for live discharge from hospice because of acute hospitalization. The authors also explore the moderating role of race/ethnicity in any observed relationship.
RESEARCH DESIGN: Retrospective cohort study using electronic medical records of hospice patients (N=17,290) linked with neighborhood-level socioeconomic data (N=55 neighborhoods). Multilevel models were used to identify the independent significance of patient and neighborhood-level characteristics for risk of live discharge because of acute hospitalization.
RESULTS: Compared with the patients in the most well-educated and affluent sections of New York City [quartile (Q)4], the odds of live discharge from hospice because of acute hospitalization were greater among patients who resided in neighborhoods where lower proportions of residents held college degrees [Q1 adjusted odds ratio (AOR), 1.36; 95% confidence interval (CI), 1.06-1.75; Q2 AOR, 1.41; 95% CI, 1.07-1.84] and median household incomes were lower (Q1 AOR, 1.42; 95% CI, 1.10-1.85; Q2 AOR, 1.43; 95% CI, 1.10-1.85; Q3 AOR, 1.39; 95% CI, 1.07-1.80). However, these observed relationships were not equally distributed by patient race/ethnicity; the association of neighborhood socioeconomic disadvantage and risk for live discharge was significantly lower among Hispanic compared with white patients.
CONCLUSIONS: Findings demonstrate neighborhood socioeconomic disadvantage poses a significant risk for live discharge from hospice. Additional research is needed to clarify the social mechanisms underlying this association, including greater attention to the experiences of hospice patients from under-represented racial/ethnic groups.
Background: End of life (EoL) care becomes more complex and increasingly takes place in the community, but there is little data on the use of general practice (GP) services to guide care improvement. This study aims to determine the trends and factors associated with GP consultation, prescribing and referral to other care services amongst cancer patients in the last year of life.
Methods: A retrospective cohort study of cancer patients who died in 2000–2014, based on routinely collected primary care data (the Clinical Practice Research DataLink, CPRD) covering a representative sample of the population in the United Kingdom. Outcome variables were number of GP consultations (primary), number of prescriptions and referral to other care services (yes vs no) in the last year of life. Explanatory variables included socio-demographics, clinical characteristics and the status of palliative care needs recognised or not. The association between outcome and explanatory variables were evaluated using multiple-adjusted risk ratio (aRR).
Results: Of 68,523 terminal cancer patients, 70% were aged 70+, 75% had comorbidities and 45.5% had palliative care needs recognised. In the last year of life, a typical cancer patient had 43 GP consultations (Standard deviation (SD): 31.7; total = 3,031,734), 71.5 prescriptions (SD: 68.0; total = 5,074,178), and 21(SD: 13.0) different drugs; 58.0% of patients had at least one referral covering all main clinical specialities. More comorbid conditions, prostate cancer and having palliative care needs recognised were associated with more primary care consultations, more prescriptions and a higher chance of referral (aRRs 1.07–2.03). Increasing age was related to fewer consultations (aRRs 0.77–0.96), less prescriptions (aRR 1.09–1.44), and a higher chance of referral (aRRs 1.08–1.16) but less likely to have palliative care needs recognised (aRRs 0.53–0.89).
Conclusions: GPs are very involved in end of life care of cancer patients, most of whom having complex care needs, i.e. older age, comorbidity and polypharmacy. This highlights the importance of enhancing primary palliative care skills among GPs and the imperative of greater integration of primary care with other healthcare professionals including oncologists, palliative care specialists, geriatricians and pharmacists. Research into the potential of deprescribing is warranted. Older patients have poorer access to both primary care and palliative care need to be addressed in future practices.
Introduction: Esophagitis influences quality of life and might cause treatment interruption and hospitalization. Previous studies of risk factors focused on curative treatment for non-small cell lung cancer (NSCLC), which often involves concomitant chemoradiation (CRT). Given the uncertainty around extrapolation of dose constraints, we analyzed risk factors in patients treated with hypofractionated palliative regimens.
Patients and methods: A retrospective review of 106 patients treated with palliative radiotherapy or CRT between 2009 and 2017 was performed. Inclusion criteria: prescribed total dose 30–54 Gy, dose per fraction 2.5–4 Gy, esophageal dose > 1 Gy. Uni- and multivariate analyses were performed in 97 eligible patients to identify predictive factors for acute esophagitis grade = 1 (CTCAE 5.0).
Results: Forty percent of patients were treated with 15 fractions of 2.8 Gy (42 Gy) and 28% also received chemotherapy according to the CONRAD study regimen (induction and concomitant Carboplatin/Vinorelbine) published by the Norwegian Lung Cancer Group. Thirty-four percent were treated with 10 fractions of 3 Gy. Stage IV NSCLC was present in 47%. Esophagus Dmax was 39 Gy (population median) and Dmean 15 Gy. Overall 31% of patients developed esophagitis (26% grade 2–3, no grade 4–5). Several dosimetric parameters correlated with the risk of esophagitis (Dmax, Dmean, D5cc, V20, V30, V35, V40). Dmax outperformed other dosimetric variables in multivariate analysis. Furthermore, concomitant chemotherapy significantly increased the risk of esophagitis, while oral steroid medication reduced it. In patients with Dmax =40 Gy a reduced Dmean (=20 Gy) was beneficial.
Conclusion: In order to reduce esophagitis after hypofractionated palliative treatment lower doses than those recommended in curative NSCLC settings are preferable. Besides esophageal dose, CRT is the main risk factor for esophagitis. Additional work is needed to confirm that steroids are able to modify the risk (or to rule out confounding effects of baseline variables not included in our database).
Background: Pain is a prevalent symptom at the end of life and negatively impacts quality of life. Despite this, little population level data exist that describe pain frequency and associated factors at the end of life. The purpose of this study was to explore the prevalence of clinically significant pain at the end of life and identify predictors of increased pain.
Methods: Retrospective population-level cohort study of all decedents in Ontario, Canada, from April 1, 2011 to March 31, 2015 who received a home care assessment in the last 30 days of life (n = 20,349). Severe daily pain in the last 30 days of life using linked Ontario health administrative databases. Severe pain is defined using a validated pain scale combining pain frequency and intensity: daily pain of severe intensity.
Results: Severe daily pain was reported in 17.2% of 20,349 decedents. Increased risk of severe daily pain was observed in decedents who were female, younger and functionally impaired. Those who were cognitively impaired had a lower risk of reporting pain. Disease trajectory impacted pain; those who died of a terminal illness (i.e. cancer) were more likely to experience pain than those with frailty (odds ratio 1.66).
Conclusion: Pain is a common fear of those contemplating end of life, but severe pain is reported in less than 1 in 5 of our population in the last month of life. Certain subpopulations may be more likely to report severe pain at the end of life and may benefit from earlier palliative care referral and intervention.
BACKGROUND: Despite improvements in palliative care for critically ill children, the characteristics of end-of-life care for pediatric patients with advanced heart disease are not well-known. We investigated these characteristics among hospitalized children with advanced heart disease in a tertiary referral center in Korea.
METHODS: We retrospectively reviewed the records of 136 patients with advanced heart disease who died in our pediatric department from January 2006 through December 2013.
RESULTS: The median age of patients at death was 10.0 months (range 1 day-28.3 years). The median duration of the final hospitalization was 16.5 days (range 1-690 days). Most patients (94.1%) died in the intensive care unit and had received mechanical ventilation (89.7%) and inotropic agents (91.2%) within 24 hours of death. The parents of 74 patients (54.4%) had an end-of-life care discussion with their physician, and the length of stay of these patients in the intensive care unit and in hospital was longer. Of the 90 patients who had been hospitalized for 7 days or more, the parents of 54 patients (60%) had a documented end-of-life care discussion. The time interval from the end-of-life care discussion to death was 3 days or less for 25 patients.
CONCLUSION: Children dying of advanced heart disease receive intensive treatment at the end of life. Discussions regarding end-of-life issues are often postponed until immediately prior to death. A pediatric palliative care program must be implemented to improve the quality of death in pediatric patients with heart disease.
BACKGROUND: We aim to describe the access to palliative care (PC) in hospitalized children during end-of-life care and compare the circumstances surrounding the deaths of hospitalized children as a basis for implementing a pediatric PC program at our institution.
METHODS: We performed a retrospective chart review of deceased pediatric patients at a tertiary referral hospital in Colombia. The study group was selected by randomly drawing a sample of 100 observations from the 737 deceased children from 2013 to 2016. A 1:1 propensity score (PS) matching was performed to compare the characteristics and outcomes between PC and non-PC treated patients.
RESULTS: We included 87 patients. After PS matching, we found that patients under the care of non-PC physicians were more likely to die in the pediatric intensive care unit (non-PC: 6/10 vs PC: 1/10; P = .02), to be on vasopressor agents and mechanical ventilation (non-PC: 7/10 vs PC: 1/10; P = .02), and to receive cardiopulmonary resuscitation at the end of life (non-PC: 5/10 vs PC: 0/10; P = .03). In contrast, a significantly higher proportion of patients under the care of the pediatric PC team died with comfort measures (non-PC: 2/10 vs 8/10; P = .02) and nonescalation of care in physician orders (non-PC: 5/10 vs PC: 10/10; 0.03).
CONCLUSION: In this study, only 10 of 87 patients were treated by the pediatric PC team at the end of life. The latter finding is concerning and is a call to action to improve access to pediatric PC at our institution.
Background: factors associated with place of death inform policies with respect to allocating end-of-life care resources and tailoring supportive measures.
Objective: To determine factors associated with non-hospital deaths among cancer patients.
Design: Retrospective cohort study of cancer decedents, examining factors associated with non-hospital deaths using multinomial logistic regression with hospital deaths as the reference category.
Setting/subjects: Cancer patients (n = 15254) in Singapore who died during the study period from January 1, 2012 till December 31, 2105 at home, acute hospital, long-term care (LTC) or hospice were included.
Results: Increasing age (categories =65 years: RRR 1.25–2.61), female (RRR 1.40; 95% CI 1.28–1.52), Malays (RRR 1.67; 95% CI 1.47–1.89), Brain malignancy (RRR 1.92; 95% CI 1.15–3.23), metastatic disease (RRR 1.33–2.01) and home palliative care (RRR 2.11; 95% CI 1.95–2.29) were associated with higher risk of home deaths. Patients with low socioeconomic status were more likely to have hospice or LTC deaths: those living in smaller housing types had higher risk of dying in hospice (1–4 rooms apartment: RRR 1.13–3.17) or LTC (1–5 rooms apartment: RRR 1.36–4.11); and those with Medifund usage had higher risk of dying in LTC (RRR 1.74; 95% CI 1.36–2.21). Patients with haematological malignancies had increased risk of dying in hospital (categories of haematological subtypes: RRR 0.06–0.87).
Conclusions: We found key sociodemographic and clinical factors associated with non-hospital deaths in cancer patients. More can be done to enable patients to die in the community and with dignity rather than in a hospital.
Objectives: Identifying the preferred place of death for children/young people with cancer and determining whether this is achieved is pertinent to inform palliative care service provision. The aims of this retrospective case series review were to determine where children/young people with cancer want to die and whether their preferred place of death was achieved.
Methods: Clinical/demographic details, including preferred and actual places of death, were recorded for 121 patients who died between 2012 and 2016 at a tertiary haematology–oncology centre. A logistic regression model was used to determine the odds of achieving the preferred place of death in patient subgroups.
Results: 74 (61%) patients had a documented discussion regarding place of death preference. Where a preferred location was identified, 72% achieved it. All patients who wanted to die in the hospital (n=17) or a hospice (n=9) did, but only 58% of patients who wanted to die at home (n=40) achieved this. Of the 42% (n=17) who wanted to die at home but did not, 59% of these were due to rapid deterioration in clinical status shortly after the discussion. Having supportive treatment in the last month of life was associated with increased odds of achieving the preferred place of death versus those who were undergoing chemotherapy/radiotherapy (OR 3.19, 95% CI 1.04 to 9.80, p value=0.04).
Conclusion: Where hospice/hospital was chosen as the preferred place of death, this was always achieved. Achieving home as the preferred place of death was more challenging and frequently prevented by rapid clinical deterioration. Clinicians should be encouraged to address end-of-life preferences at an early stage, with information provided adequately. Further research should explore implications of these findings on both end-of-life experience and overall service provision.