Background: An essential component of palliative care (PC) is providing psychological and existential support to the family caregivers. However, there is scant research on the existential journeys of family caregivers throughout the disease trajectory and beyond.
Objective: This study aimed to obtain a deep understanding of the existential journeys of family caregivers from prognosis notification until after the death.
Setting/Participants: A purposive sample of 22 caregivers of terminally ill family members who had died was recruited at a PC bereavement program in Canada and participated to qualitative phenomenological interviews.
Data Collection: Interpretative phenomenological analysis was used to analyze the data derived from in-depth interviews.
Results: The participants' existential journeys can be described by three dynamic dimensions: (1) from avoidance to integration of death, (2) from meaninglessness to meaningfulness, and (3) from transformation to transmission. The findings highlight the importance to family caregivers of having opportunities to share their experiences as a way to progress on the existential journey.
Conclusions: PC should extend beyond the death of the loved one and expand to include existential aspects of the caregiving experience.
OPINION STATEMENT: Palliative care provides an extra layer of support to patients and families facing a serious illness. To date, several studies support the use of early, integrated palliative care for patients with cancer, based upon documented improvements in quality of life, symptoms, mood, satisfaction, utilization, and even overall survival. Despite this, patients with cancer continue to have unmet palliative care needs, and palliative care services are often engaged late in their care, if at all. Amid this under-utilization, questions remain about the optimal timing and nature of palliative care integration. To answer this question, we briefly review the evidence based for palliative care in oncology, and discuss three approaches to optimizing the timing of palliative care integration: (1) prognosis-based, (2) needs-based, and (3) trigger-based models. Prognosis-based models most closely mirror the approach of randomized trials to date, but are overly dependent on prognostication, and may miss patients with unmet needs who do not meet standard definitions of poor-prognosis disease. Needs-based models may better capture patients in a personalized manner, based on actual needs, but require sophisticated screening systems to be integrated into routine care processes, along with clinician buy-in. This may lead to excessive referrals, which strain the already limited palliative care workforce. As such, a blended, trigger-based approach may be best, allowing one to utilize certain disease-based and prognosis-based triggers for referral, plus screening of unmet needs, to identify those patients most likely to benefit from integrated palliative care when they need it most.
Background: despite being a terminal neurodegenerative disease, the role of palliative care is less recognised for motor neurone disease than for other life-limiting conditions. Understanding the experiences of, and need for, palliative care for patients and carers is key to configuring optimal policy and healthcare services.
Aim: To explore the experiences of, and need for, palliative care of people with motor neurone disease and their informal carers across the disease trajectory.
Design: A systematic review of qualitative research conducted using Thematic Synthesis – PROSPERO registration CRD42017075311.
Data Sources: four electronic databases were searched (MEDLINE, CINAHL, PsycINFO, Social Science Citation Index) using terms for motor neurone disease, amyotrophic lateral sclerosis, palliative care, and qualitative research, from inception to November 2018. Included papers were data extracted and assessed for quality.
Results: A total of 41 papers were included, representing the experiences of 358 people with motor neurone disease and 369 caregivers. Analytical themes were developed detailing patients’ and carers’ experiences of living with motor neurone disease and of palliative care through its trajectory including response to diagnosis, maintaining control, decision-making during deterioration, engaging with professionals, planning for end-of-life care, bereavement.
Conclusion: The review identified a considerable literature exploring the care needs of people with motor neurone disease and their carers; however, descriptions of palliative care were associated with the last days of life. Across the disease trajectory, clear points were identified where palliative care input could enhance patient and carer experience of the disease, particularly at times of significant physical change.
Objective: In breast cancer patients, treatment at the end of life accounts for a major share of medical spending. However, little is known about the variability of cost trajectories between patients. This study aims to identify underlying latent groups of advanced breast cancer patients with similar cost trajectories over the last year before death.
Methods: data from deceased advanced breast cancer patients, diagnosed between 2010 and 2017, were retrieved from the Southeast Netherlands Advanced Breast Cancer (SONABRE) Registry. Costs of hospital care over the last twelve months before death were analyzed, and the variability of longitudinal patterns between patients were explored using group-based trajectory modeling. Descriptive statistics and multinomial logistic regression were applied to investigate differences between the identified latent groups.
Results: We included 558 patients. Over the last twelve months before death, mean hospital costs were €2,255 (SD = €492) per month. Costs increased over the last five months and reached a maximum of €3,614 in the last month of life, driven by hospital admissions, while spending for medication declined over the last three months of life. Based on patients’ individual cost trajectories, we identified six latent groups with distinct longitudinal patterns, of which only two showed a marked increase in costs over the last twelve months before death. Latent groups were constituted of heterogeneous patients, and clinical characteristics explained membership only to a limited extent.
Conclusions: The average costs of advanced breast cancer patients increased towards the end of life. However, we uncovered several latent groups of patients with divergent cost trajectories, which did not reflect the overall increasing trend. The mechanisms underlying the variability in cost trajectories warrants further research.
OBJECTIVE: To examine the regional variation in hospital care utilization in the last 6 months of life of Dutch patients with lung cancer and to test whether higher degrees of hospital utilization coincide with less general practitioner (GP) and long-term care use.
DESIGN: Cross-sectional claims data study.
SETTING: The Netherlands.
PARTICIPANTS: Patients deceased in 2013-2015 with lung cancer (N = 25 553).
MAIN OUTCOME MEASURES: We calculated regional medical practice variation scores, adjusted for age, gender and socioeconomic status, for radiotherapy, chemotherapy, CT-scans, emergency room contacts and hospital admission days during the last 6 months of life; Spearman Rank correlation coefficients measured the association between the adjusted regional medical practice variation scores for hospital admissions and ER contacts and GP and long-term care utilization.
RESULTS: The utilization of hospital services in high-using regions is 2.3-3.6 times higher than in low-using regions. The variation was highest in 2015 and lowest in 2013. For all 3 years, hospital care was not significantly correlated with out-of-hospital care at a regional level.
CONCLUSIONS: Hospital care utilization during the last 6 months of life of patients with lung cancer shows regional medical practice variation over the course of multiple years and seems to increase. Higher healthcare utilization in hospitals does not seem to be associated with less intensive GP and long-term care. In-depth research is needed to explore the causes of the variation and its relation to quality of care provided at the level of daily practice.
RATIONALE: Even though Idiopathic pulmonary fibrosis (IPF) is a disease with high morbidity and mortality and no cure, palliative care is rarely implemented, leading to high symptom burden and unmet care needs. In 2012 we implemented a Multidisciplinary Collaborative (MDC) care model linking clinic and community multidisciplinary teams to provide an early-integrated palliative approach, focusing on early symptom management and advanced care planning (ACP).
OBJECTIVES: This study evaluates the differences in resource utilization and associated costs of end-of-life care between early-integrated palliative and conventionally treated IPF patients.
METHODS: Using administrative health data, we identified all patients in Alberta who presented to hospital with an IPF diagnosis between Jan 1, 2012 and Dec 31, 2018 and died within this timeframe. We compared 3 groups of patients: those who received (1) MDC care (our clinic patients), (2) specialist care (SC; respirologist), and (3) non-specialist care (NSC; no contact with a respiratory clinic). The primary outcomes were health care resource utilization and costs in the year before death.
RESULTS: Of 2,768 patients across three groups, MDC patients were over 3 times more likely to have received anti-fibrotic therapies over SC patients (OR=3.0; 95%CI 1.8-5.2), almost twice as likely to receive pulmonary rehab (OR=1.9; 95%CI 1.1-3.4) and 36% more likely to receive opiates (OR=1.4; 95%CI 0.8-2.3) in the last year of life. The median total health care costs in the last 3 months of life were approximately $7,700 CDN lower for MDC patients compared to those receiving specialist care, driven primarily by fewer hospitalizations and ED visits. MDC patients were also less likely to die in hospital (44.9% MDC vs 64.9% SC vs 66.8% NSC, p<0.001) and had the highest rates of no hospitalization in the last year of life.
CONCLUSIONS: An integrated palliative approach in IPF is associated with improvements in the quality of end-of-life care and reduction in costs. Transformation of care models is required to deliver a palliative approach in IPF. Multidisciplinary collaborative teams within such models can address the high burden of unmet needs for symptom management, advance care planning (ACP) and community support in this complex population.
BACKGROUND: Phase of Illness is used to describe the stages of a patient’s illness in the palliative care setting. Categorization is based on individual needs, family circumstances, and the adequacy of a care plan. Substantial ( = .67) and moderate ( = .52) inter-rater reliability is demonstrated when categorizing adults; however, there is a lack of similar studies in pediatrics.
OBJECTIVE: To test the inter-rater reliability of health-care professionals when assigning pediatric palliative care patients to a Phase of Illness. Furthermore, to obtain user views on phase definitions, ease of assignment, feasibility and acceptability of use.
METHOD: A prospective cohort study in which up to 9 health-care professionals' independently allocated 80 pediatric patients to a Phase of Illness and reported on their experiences. This study took place between June and November 2017.
RESULTS: Professionals achieved a moderate level of agreement ( = 0.50). Kappa values per phase were as follows: stable = 0.63 (substantial), unstable = 0.26 (fair), deteriorating = 0.45 (moderate), and dying = 0.43 (moderate). For the majority of allocations, professionals report that the phase definitions described patients very well (76.1%), and they found it easy to assign patients (73.5%). However, the unstable phase caused the most uncertainty.
CONCLUSION: The results of this study suggest Phase of Illness is a moderately reliable, acceptable, and feasible tool for use in pediatric palliative care. Current results are similar to those found in some adult studies. However, in a quarter of cases, users report some uncertainty in the application of the tool, and further study is warranted to explore whether suggested refinements improve its psychometric properties.
OBJECTIVES: To estimate differences in spending and utilization between hospice users and non-users with lung cancer by length of hospice enrollment.
STUDY DESIGN: Retrospective analysis using 2009-2013 Medicare claims.
METHODS: The study sample was a 10% random sample of Medicare fee-for-service beneficiaries with lung cancer who died between 2010 and 2013. We identified different categories of hospice users (hospice enrollment for 1-7 days, 8-14 days, 15-30 days, 31-60 days, 61 days - 6 months) and non-users. We used propensity score matching to match users in each enrollment category with non-users. The outcomes were: a) total Medicare spending, b) number of hospitalizations, c) number of emergency department (ED) visits, d) number of physician-administered chemotherapy claims, and e) number of radiation therapy sessions. Regression analysis was used to compare outcomes between users and non-users by enrollment period.
RESULTS: Hospice users had significantly lower spending, fewer hospitalizations, and fewer ED visits than non-users across all categories of hospice enrollment. Large savings occurred when patients stayed in hospice for at least one month (US$16,566 for those enrolled 61 days - 6 months; US$16,409 for those enrolled 31-60 days). Significant reduction in use of outpatient services including chemotherapy and radiation therapy was observed among patients using hospice for at least 1 month.
CONCLUSIONS: Hospice led to cost savings by reducing utilization of aggressive care towards end-of-life among lung cancer patients. While cost savings were realized even when hospice is utilized for a short duration, large savings occurred when hospice is used for at least 1 month.
Background: Few large studies describe initial disease trajectories and subsequent mortality in people with head and neck cancer. This is a necessary first step to identify the need for palliative care and associated services.
Aim: To analyse data from the Head and Neck 5000 study to present mortality, place and mode of death within 12 months of diagnosis.
Design: Prospective cohort study.
Participants: In total, 5402 people with a new diagnosis of head and neck cancer were recruited from 76 cancer centres in the United Kingdom between April 2011 and December 2014.
Results: Initially, 161/5402 (3%) and 5241/5402 (97%) of participants were treated with ‘non-curative’ and ‘curative’ intent, respectively. Within 12 months, 109/161 (68%) in the ‘non-curative’ group died compared with 482/5241 (9%) in the ‘curative’ group. Catastrophic bleed was the terminal event for 10.4% and 9.8% of people in ‘non-curative’ and ‘curative’ groups, respectively; terminal airway obstruction was recorded for 7.5% and 6.3% of people in the same corresponding groups. Similar proportions of people in both groups died in a hospice (22.9% ‘non-curative’; 23.5% ‘curative’) and 45.7% of the ‘curative’ group died in hospital.
Conclusion: In addition to those with incurable head and neck cancer, there is a small but significant ‘curative’ subgroup of people who may have palliative needs shortly following diagnosis. Given the high mortality, risk of acute catastrophic event and frequent hospital death, clarifying the level and timing of palliative care services engagement would help provide assurance as to whether palliative care needs are being met.
Spinal muscular atrophy type 1 (SMA-1) is a severe neurodegenerative disorder, which in the absence of curative treatment, leads to death before 1 year of age in most cases. Caring for these short-lived and severely impaired infants requires palliative management. New drugs (nusinersen) have recently been developed that may modify SMA-1 natural history and thus raise ethical concerns about the appropriate level of care for patients. The national Hospital Clinical Research Program (PHRC) called "Assessment of clinical practices of palliative care in children with Spinal Muscular Atrophy Type 1 (SMA-1)" was a multicenter prospective study conducted in France between 2012 and 2016 to report palliative practices in SMA-1 in real life through prospective caregivers' reports about their infants' management. Thirty-nine patients were included in the prospective PHRC (17 centers). We also studied retrospective data regarding management of 43 other SMA-1 patients (18 centers) over the same period, including seven treated with nusinersen, in comparison with historical data from 222 patients previously published over two periods of 10 years (1989-2009). In the latest period studied, median age at diagnosis was 3 months [0.6-10.4]. Seventy-seven patients died at a median 6 months of age[1-27]: 32% at home and 8% in an intensive care unit. Eighty-five percent of patients received enteral nutrition, some through a gastrostomy (6%). Sixteen percent had a non-invasive ventilation (NIV). Seventy-seven percent received sedative treatment at the time of death. Over time, palliative management occurred more frequently at home with increased levels of technical supportive care (enteral nutrition, oxygenotherapy, and analgesic and sedative treatments). No statistical difference was found between the prospective and retrospective patients for the last period. However, significant differences were found between patients treated with nusinersen vs. those untreated. Our data confirm that palliative care is essential in management of SMA-1 patients and that parents are extensively involved in everyday patient care. Our data suggest that nusinersen treatment was accompanied by significantly more invasive supportive care, indicating that a re-examination of standard clinical practices should explicitly consider what treatment pathways are in infants' and caregivers' best interest. This study was registered on clinicaltrials.gov under the reference NCT01862042 (https://clinicaltrials.gov/ct2/show/study/NCT01862042?cond=SMA1&rank=8).
OBJECTIVES: Describe pediatric palliative care consult in children with heart disease; retrospectively apply Center to Advance Palliative Care criteria for pediatric palliative care consults; determine the impact of pediatric palliative care on end of life.
DESIGN: A retrospective single-center study.
SETTING: A 16-bed cardiac ICU in a university-affiliated tertiary care children's hospital.
PATIENTS: Children (0-21 yr old) with heart disease admitted to the cardiac ICU from January 2014 to June 2017.
MEASUREMENTS AND MAIN RESULTS: Over 1,000 patients (n = 1, 389) were admitted to the cardiac ICU with 112 (8%) receiving a pediatric palliative care consultation. Patients who received a consult were different from those who did not. Patients who received pediatric palliative care were younger at first hospital admission (median 63 vs 239 d; p = 0.003), had a higher median number of complex chronic conditions at the end of first hospitalization (3 vs 1; p < 0.001), longer cumulative length of stay in the cardiac ICU (11 vs 2 d; p < 0.001) and hospital (60 vs 7 d; p < 0.001), and higher mortality rates (38% vs 3%; p < 0.001). When comparing location and modes of death, patients who received pediatric palliative care were more likely to die at home (24% vs 2%; p = 0.02) and had more comfort care at the end of life (36% vs 2%; p = 0.002) compared to those who did not. The Center to Advance Palliative Care guidelines identified 158 patients who were eligible for pediatric palliative care consultation; however, only 30 patients (19%) in our sample received a consult.
CONCLUSIONS: Pediatric palliative care consult rarely occurred in the cardiac ICU. Patients who received a consult were medically complex and experienced high mortality. Comfort care at the end of life and death at home was more common when pediatric palliative care was consulted. Missed referrals were apparent when Center to Advance Palliative Care criteria were retrospectively applied.
Background: Little is known about patients discharged to hospice following hospitalization for complications of cirrhosis.
Aim: We sought to understand the current pattern of hospice utilization in patients with cirrhosis by evaluating the North American Consortium for the Study of End-stage Liver Disease (NACSELD) cohort.
Methods: Patients with cirrhosis from 14 tertiary-care hepatology centers across North America non-electively hospitalized and prospectively enrolled were evaluated. Exclusion criteria included HIV infection, transplantation or non-hepatic malignancy. Random computer-based propensity score matching was undertaken in a 1:2 ratio based on admission MELD score ± 3 points.
Results: Totally, 2718 patients were enrolled, 5% (N = 132) were discharged to hospice, 6% (N = 171) died, and the rest were discharged alive. Patients discharged to hospice were older (60 vs. 57 years, p = 0.04), less likely to have had SBP (13% vs. 28%, p = 0.002) and be listed for liver transplantation (11% vs. 26%, p = 0.0007). Features, on multivariable modeling, associated with increased probability of discharge to hospice as opposed to being discharged alive: grade-3–4 hepatic encephalopathy, a higher Child–Turcotte–Pugh (CTP) score, and a higher discharge serum creatinine; however, a higher serum sodium, being listed for transplant and being prescribed rifaximin or a statin were protective from hospice discharge.
Conclusion: Patients with more advanced liver disease, hepatic encephalopathy, renal dysfunction, and those not candidates for liver transplantation were more likely to be discharged to hospice. However, in this sick multinational cohort of cirrhotic inpatients, it seems that hospice is markedly underutilized (5%) since 25% of patients not discharged to hospice died within 6 months.
Background: Palliative care (PC) referral is recommended early in the course of advanced cancer. This study aims to describe, in an integrated onco-palliative care program (IOPC), patient’s profile when first referred to this program, timing of this referral and its impact on the trajectory of care at end-of-life.
Methods: The IOPC combined the weekly onco-palliative meeting (OPM) dedicated to patients with incurable cancer, and/or the clinical evaluation by the PC team. Oncologists can refer to the multidisciplinary board of the OPM the patients for whom goals and organization of care need to be discussed. We analyzed all patients first referred at OPM in 2011–2013. We defined the index of precocity (IP), as the ratio of the time from first referral to death by the time from diagnosis of incurability to death, ranging from 0 (late referral) to 1 (early referral).
Results: Of the 416 patients included, 57% presented with lung, urothelial cancers, or sarcoma. At first referral to IOPC, 76% were receiving antitumoral treatment, 63% were outpatients, 56% had a performance status =2 and 46% had a serum albumin level > 35 g/l. The median [1st-3rd quartile] IP was 0.39 [0.16–0.72], ranging between 0.53 [0.20–0.79] (earliest referral, i.e. close to diagnosis of incurability, for lung cancer) to 0.16 [0.07–0.56] (latest referral, i.e. close to death relatively to length of metastatic disease, for prostate cancer). Among 367 decedents, 42 (13%) received antitumoral treatment within 14 days before death, and 157 (43%) died in PC units.
Conclusions: The IOPC is an effective organization to enable early integration of PC and decrease aggressiveness of care near the end-of life. The IP is a useful tool to model the timing of referral to IOPC, while taking into account each cancer types and therapeutic advances.
Background: Economic analyses of end-of-life care often focus on single aspects of care in selected cohorts leading to limited knowledge on the total level of care required to patients at their end-of-life. We aim at describing the living situation and full range of health care provided to patients at their end-of-life, including how informal care affects formal health care provision, using the case of colorectal cancer.
Methods: All colorectal cancer decedents between 2009 and 2013 in Norway (n = 7695) were linked to six national registers. The registers included information on decedents’ living situation (days at home, in short- or long-term institution or in the hospital), their total health care utilization and costs in the secondary, primary and home- and community-based care setting. The effect of informal care was assessed through marital status (never married, currently married, or previously married) using regression analyses (negative binominal, two-part models and generalized linear models), controlling for age, gender, comorbidities, education, income, time since diagnosis and year of death.
Results: The average patient spent four months at home, while he or she spent 27 days in long-term institutions, 16 days in short-term institutions, and 21 days in the hospital. Of the total costs (~NOK 400,000), 58, 3 and 39% were from secondary carers (hospitals), primary carers (general practitioners and emergency rooms) and home- and community-based carers (home care and nursing homes), respectively. Compared to the never married, married patients spent 30 more days at home and utilized less home- and community-based care, but more health care services at the secondary and primary health care level. Their total healthcare costs were significantly lower (-NOK 65,621) than the never married. We found similar, but weaker, patterns for those who had been married previously.
Conclusion: End-of-life care is primarily provided in the secondary and home-and community-based care level, and informal caregivers have a substantial influence on formal end-of-life care provision. Excluding aspects of care such as home and community-based care or informal care in economic analyses of end-of-life care provides a biased picture of the total resources required, and might lead to inefficient resource allocations.
Background: Palliative care is associated with improved symptom control and quality of life in people with heart failure. There is conflicting evidence as to whether it is associated with a greater likelihood of death at home in this population. The objective of this study was to describe the delivery of newly initiated palliative care services in adults who die with heart failure and measure the association between receipt of palliative care and death at home compared with those who did not receive palliative care.
Methods and Results: We performed a population-based cohort study using linked health administrative data in Ontario, Canada of 74 986 community-dwelling adults with heart failure who died between 2010 and 2015. Seventy-five percent of community-dwelling adults with heart failure died in a hospital. Patients who received any palliative care were twice as likely to die at home compared with those who did not receive it (adjusted odds ratio 2.12 [95% CI, 2.03–2.20]; P<0.01). Delivery of home-based palliative care had a higher association with death at home (adjusted odds ratio 11.88 [95% CI, 9.34–15.11]; P<0.01), as did delivery during transitions of care between inpatient and outpatient care settings (adjusted odds ratio 8.12 [95% CI, 6.41–10.27]; P<0.01). Palliative care was most commonly initiated late in the course of a person's disease (=30 days before death, 45.2% of subjects) and led by nonspecialist palliative care physicians 61% of the time.
Conclusions: Most adults with heart failure die in a hospital. Providing palliative care near the end-of-life was associated with an increased likelihood of dying at home. These findings suggest that scaling existing palliative care programs to increase access may improve end-of-ife care in people dying with chronic noncancer illness.
INTRODUCTION: Health care utilization of people with lung cancer (LC) the last year of life, their causes of death and place of death and the associated expenditure have been poorly described together. Then we conducted an observational study.
METHODS: People with LC covered by the French health Insurance general scheme (77% of the population) who died in 2015 were identified in the national health data system, together with their health care utilization and, in 95% of cases, their causes of death.
RESULTS: A total of 22,899 individuals were included (mean age: 68 years, SD±11.4), 72% of whom died in short-stay hospitals (SSH), 4% in hospital-at-home, 8% in Rehab hospital, 2% in skilled nursing homes and 14% at home. One-half of these people had also a chronic respiratory tract disease and 18% another cancer. Hospital palliative care (HPC) was identified for 65% of people, but for only 9% prior to their end-of-life stay. During the last month of life, 49% of people had two or more SSH stays, 15% were admitted to an intensive care unit, 23% received a chemotherapy session (13% during the last 14 days). The main cause of death was cancer for 92% of individuals (LC for 82%) The mean expenditure during the last year of life was €43,329 per individual.
DISCUSSION: This study indicates high rates of intensive care unit admissions and chemotherapy during the last month of life and a SSH hospital-centered management with intensive use of HPC mainly during the end-of-life stay.
Objective: To characterize the use of palliative care for patients with metastatic prostate cancer and identify its associations with costs, hospital course, and discharge.
Materials and Methods: Using the National Inpatient Sample database from 2012 to 2013, we identified 99 070 patients with metastatic prostate cancer and analyzed the data from their hospital admissions using descriptive statistics, 2 analysis, and regression modeling.
Results: Palliative care services were consulted in 10.4% (10 300) of metastatic prostate cancer admissions. These admissions were associated with nonelective origin, acute complications, and reduced surgical procedures and chemotherapy. Patients in private, investor-owned hospitals had a 51.6% less consultations (P < .001), while nonprofit and government, nonfederal hospitals had 4.7% and 7.8% more consultations (P < .001). Median costs and charges were only marginally less (2.1% and 5.6%, respectively, P < .001), length of stay was 22% higher (P < .001), and in-house mortality was 147.2% higher in the consultation group (P < .001). Controlling for other factors, patients seen by palliative care were more likely to have do-not-resuscitate orders (odds ratio [OR]: 5.25, P < .001) and be transferred to another facility like hospice (OR: 3.90, P < .001) or to home health (OR: 3.85, P < .001).
Conclusions: Palliative care consultation could improve care for patients with metastatic prostate cancer in a different manner than observed in other diseases. With our characterization of the incidence and patient and hospital factors, we can conclude that there is room to expand palliative care’s role beyond uninsured patients in large, urban teaching hospitals.
BACKGROUND: Associations of demographic factors with elective dialysis withdrawal and setting of death, patterns of illness trajectories preceding death, and how illness trajectories, particularly worsening putative disability, are associated with elective withdrawal are poorly understood.
METHODS: Using United States Renal Data System data, we performed a case-control analysis of hemodialysis patients who died in 2010-2015. A disability proxy score characterized disability; logistic regression identified characteristics associated with death from withdrawal and with death setting; and group-based trajectory models characterized the trajectory of disability in the months preceding death.
RESULTS: We identified 14,571 (9.2%) patients who withdrew and 144,305 (90.8%) who died of a non-withdrawal cause. Women were more likely than men to withdraw (OR 1.19, 95% CI 1.15-1.24). The most rural patients were more likely to withdraw than the most urban (OR 1.37, 95% CI 1.25-1.50). Medicaid coverage (a marker for impoverishment) was associated with less withdrawal (OR 0.90, 95% CI 0.86-0.94). Disability proxy score was strongly related to withdrawal: the OR for patients in the highest score category was 31.16 (95% CI 28.40-34.20) versus those with a score of 0. Women and whites (vs. blacks) were overrepresented in the worst, versus better, proxy disability score trajectory. In-hospital death and death in the intensive care unit were more common in women and minorities than in men and whites, but less common in the most rural patients.
CONCLUSIONS: Important differences separate patients who electively withdraw from those who die of non-withdrawal causes. Worsening disability, in particular, may be a marker for withdrawal.
Background: Research shows that access to palliative care can help patients avoid dying in hospital. However, access to palliative care services during the terminal hospitalization, specifically, has not been well studied.
Objective: To determine whether access to palliative care varied by disease trajectory among terminal hospitalizations.
Design, Setting, Subjects: We conducted a population-based retrospective cohort study of decedents who died in hospital in Ontario, Canada between 2012 and 2015 by using linked administrative databases.
Measurements: Using hospital and physician billing codes, we classified access to palliative care in three mutually exclusive groups of patients with terminal hospitalization: (1) main diagnosis for admission was palliative care; (2) main diagnosis was not palliative care, but the patient received palliative care specialist consultation; and (3) the patient did not receive any specialist palliative care. We conducted a logistic regression on odds of never receiving palliative care.
Results: We identified 140,475 decedents who died in an inpatient hospital unit, which represents 42% of deaths. Among inpatient hospital deaths, 23% (n = 32,168) had palliative care listed as the main diagnosis for admission, 41% (n = 58,210) received specialist palliative care consultation, and 36% (n = 50,097) never had access to specialist palliative care. In our regression, dying of organ failure or frailty compared with cancer increased the odds of never receiving palliative care by 4.07 (95% confidence interval [CI]: 3.95–4.20) and 4.51 (95% CI: 4.35–4.68) times, respectively.
onclusions: A third of hospital deaths had no palliative care involvement. Access to specialist palliative care is particularly lower for noncancer decedents. Inpatient units play an important role in providing end-of-life care.
A growing body of research demonstrates the feasibility and efficacy of psychological interventions for adult patients with advanced cancer. Findings from quantitative studies of psychotherapeutic interventions with primary psychological outcomes for such patients are reviewed here and recommendations for best practice are made. We consider these interventions according to three broad phases in which they are most commonly applied: soon after diagnosis of advanced cancer, when living with the disease, and at or near the end of life. Cumulative evidence from well-designed studies demonstrates the efficacy of psychosocial interventions for patients with advanced disease to relieve and prevent depression, anxiety, and distress related to dying and death, as well as to enhance the sense of meaning and preparation for end of life. Individual and couple-based interventions have been proven to be most feasible, and the development and use of tailored and validated measures has enhanced the rigor of research and clinical care. Palliative care nurses and physicians can be trained to deliver many such interventions, but a core of psychosocial clinicians, including social workers, psychologists, and psychiatrists, is usually required to train other health professionals in their delivery and to ensure their quality. Few of the interventions for which there is evidence of effectiveness have been routinely incorporated into oncology or palliative care. Advocacy on the basis of this evidence is required to build psychosocial resources in cancer treatment settings and to ensure that psychological care receives the same priority as other aspects of palliative care in oncology.