Race and birth country are associated with discharge location from hospital: A retrospective cohort study of demographic differences for patients receiving inpatient palliative care.

BACKGROUND: While past studies investigated access to palliative care among marginalized groups, few assessed whether there are differences in clinical process indicators based on demographics among those receiving palliative care. We aimed to: describe demographics among patients receiving inpatient palliative care; and evaluate whether demographic variables are associated with differences in disposition (i.e., discharge location), length of stay (LOS), and timing of inpatient palliative care referral and consultation. METHODS: Retrospective cohort study using electronic medical record data to study patients seen by inpatient palliative care at Mount Sinai Hospital in Toronto, Canada between April 2018 to March 2019. Primary outcome was disposition. Secondary outcomes were LOS, time from admission to palliative referral, and time from referral to consultation. We summarized quantitative data descriptively and used fisher exact tests to explore relationships between categorial variables. For continuous outcomes, we ran one-way ANOVA tests. FINDINGS: A total of 187 patients were referred to palliative care and met inclusion criteria. Mean age was 68·8 and 55·6% were female. 46·7% were born in Canada, 58·2% were White and 78·4% preferred English communication. Variables significantly associated with disposition were: birth country (p = 0·04), and race/ethnicity (p = 0·03). Language (F ratio = 3·6, p = 0·004) was significantly associated with time from admission to palliative care referral. No variables were associated with LOS or time from referral to consult. INTERPRETATION: Inequalities in disposition, and how long it takes to refer to palliative care may exist. Further studies should focus on understanding the underlying practices that constructed, and maintained these inequalities in care. FUNDING: This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.

Enduring Physical or Mental Suffering of People Requesting Medical Assistance in Dying.

BACKGROUND: Medical assistance in dying (MAiD) is available in Canada for patients with grievous and irremediable medical conditions causing unbearable physical or mental suffering. It is not known how the 'grievous and irremediable suffering' criteria is being interpreted and documented by physicians. METHODS: Retrospective chart review of MAiD assessments from patients who submitted written MAiD requests to The Ottawa Hospital from June 1, 2016 to September 18, 2018. We used inductive thematic analysis to determine themes and subthemes. RESULTS: Our sample included 52 patients with a mean age of 70.5 years (SD 14), 24/52 (46%) were male. We identified 5 themes: 1) patient's context and history (e.g., past experiences, lack of disease modifying treatments), 2) physical symptoms (e.g., chronic pain, fatigue), 3) psychosocial symptoms (e.g., social isolation, or inability to communicate), 4) sense of control and 5) irreversibility. These themes were used to create a framework that describes the suffering of patients requesting MAiD. Patients who request MAiD describe how their disease causes suffering through physical symptoms, psychological symptoms and loss of control that is irreversible. These domains of suffering interact with their personal history and context leading to a reality that is unacceptable and irreversible. CONCLUSION: MAiD assessors' working definition of 'grievous and irremediable suffering' as documented in their assessments is consistent with the body of literature on this topic. MAiD assessments could be enhanced with more information about existential aspects of suffering and the impact of illness on meaningful life roles.

RELIEF: A Digital Health Tool for the Remote Self-Reporting of Symptoms in Patients with Cancer to Address Palliative Care Needs and Minimize Emergency Department Visits.

The lack of timely symptom reporting remains a barrier to effective symptom management and comfort for patients with cancer-related palliative care needs. Poor symptom management at home can lead to unwanted outcomes, such as emergency department visits and death in hospital. We developed and evaluated RELIEF, a remote symptom self-reporting app for community patients with palliative care needs. A pilot feasibility study was conducted at a large, community hospital in Ontario, Canada. Patients self-reported their symptoms each morning using validated clinical symptom measures and RELIEF would alert for worsening or severe symptoms. RELIEF alerts were monitored by palliative care nurses who would then contact patients to determine if appropriate clinical intervention could be initiated to avoid unnecessary emergency department visits. A total of 20 patients were recruited to use RELIEF for two months. Patients completed 80% of daily self-report assessments; 133 alerts were trigged, half of which required clinical intervention. No patient visited the emergency department for symptom management during the study. Clinical staff estimated five emergency department visits were avoided because of RELIEF-saving an estimated cost of over CAD 60,000. RELIEF is a feasible and acceptable method for the remote monitoring of patients with palliative care needs through regular symptom self-reporting.

The association between varying levels of palliative care involvement on costs during terminal hospitalizations in Canada from 2012 to 2015.

BACKGROUND: Inpatient palliative care is associated with lower inpatient costs; however, this has yet to be studied using a more nuanced, multi-tiered measure of inpatient palliative care and a national population-representative dataset. Using a population-based cohort of Canadians who died in hospital, our objectives were to: describe patients' receipt of palliative care and active interventions in their terminal hospitalization; and examine the relationship between inpatient palliative care and hospitalization costs. METHODS: Retrospective cohort study using data from the Discharge Abstract Database in Canada between fiscal years 2012 and 2015. The cohort were Canadian adults (age ≥ 18 years) who died in hospital between April 1st, 2012 and March 31st, 2015 (N = 250,640). The exposure was level of palliative care involvement defined as: medium-high, low, or no palliative care. The main measure was acute care costs calculated using resource intensity weights multiplied by the cost of standard hospital stay, represented in 2014 Canadian dollars (CAD). Descriptive statistics were represented as median (IQR), and n(%). We modelled cost as a function of palliative care using a gamma generalized estimating equation (GEE) model, accounting for clustering by hospital. RESULTS: There were 250,640 adults who died in hospital. Mean age was 76 (SD 14), 47% were female. The most common comorbidities were: metastatic cancer (21%), heart failure (21%), and chronic obstructive pulmonary disease (16%). Of the decedents, 95,450 (38%) had no palliative care involvement, 98,849 (38%) received low involvement, and 60,341 (24%) received medium to high involvement. Controlling for age, sex, province and predicted hospital mortality risk at admission, the cost per day of a terminal hospitalization was: $1359 (95% CI 1323: 1397) (no involvement), $1175 (95% CI 1146: 1206) (low involvement), and $744 (95% CI 728: 760) (medium-high involvement). CONCLUSIONS: Increased involvement of palliative care was associated with lower costs. Future research should explore whether this relationship holds for non-terminal hospitalizations, and whether palliative care in other settings impacts inpatient costs.

Association between high cost user status and end-of-life care in hospitalized patients: A national cohort study of patients who die in hospital.

BACKGROUND: Studies comparing end-of-life care between patients who are high cost users of the healthcare system compared to those who are not are lacking. AIM: The objective of this study was to describe and measure the association between high cost user status and several health services outcomes for all adults in Canada who died in acute care, compared to non-high cost users and those without prior healthcare use. SETTINGS AND PARTICIPANTS: We used administrative data for all adults who died in hospital in Canada between 2011 and 2015 to measure the odds of admission to the intensive care unit (ICU), receipt of invasive interventions, major surgery, and receipt of palliative care during the hospitalization in which the patient died. High cost users were defined as those in the top 10% of acute healthcare costs in the year prior to a person's hospitalization in which they died. RESULTS: Among 252,648 people who died in hospital, 25,264 were high cost users (10%), 112,506 were non-high cost users (44.5%) and 114,878 had no prior acute care use (45.5%). After adjustment for age and sex, high cost user status was associated with a 14% increased odds of receiving an invasive intervention, a 15% increased odds of having major surgery, and an 8% lower odds of receiving palliative care compared to non-high cost users, but opposite when compared to patients without prior healthcare use. CONCLUSIONS: Many patients receive aggressive elements of end-of-life care during the hospitalization in which they die and a substantial number do not receive palliative care. Understanding how this care differs between those who were previously high- and non-high cost users may provide an opportunity to improve end of life care for whom better care planning and provision ought to be an equal priority.

Quality versus risk of bias assessment of palliative care trials: comparison of two tools.

BACKGROUND: Randomised controlled trials (RCTs) of palliative care interventions are challenging to conduct and evaluate. Tools used to judge the quality of RCTs do not account for the complexities of conducting research in seriously ill populations and may artificially downgrade confidence in palliative care research. OBJECTIVE: To compare assessments from the Palliative Care Trial Assessment Tool (PCTAT) and Cochrane Risk of Bias (RoB) tool. DESIGN: Reviewers assessed 43 RCTs using PCTAT and RoB. We compared assessments of each trial, assessed overall agreement (weighted kappa (Kw)) and examined (dis)agreement for comparable items. We assessed quality of life at 1-3 months among trials grouped according to RoB or PCTAT score (using meta-analysis) and whether RoB or quality improved over time (Cochran-Armitage trend test). RESULTS: Of 43 trials, those rated low RoB had a mean PCTAT score of 73 (SD 10); those rated high RoB had a mean PCTAT score of 56 (SD 14). Overall Kw was 0.33 (95% CI 0.19 to 0.42). Total agreement between comparable items was observed for 56% of trials (24/43) and total disagreement for 21% (8/43). The standardised mean difference in quality of life was statistically significant among RCTs with low RoB and high PCTAT, but not for those with medium/low PCTAT or high/unclear RoB. Quality of reporting improved over time, whereas RoB did not. CONCLUSION: Although there was fair agreement between tools, areas of disagreement/non-comparability suggest the tools capture different aspects of bias/quality. A specific tool to evaluate quality of palliative care trials may be warranted.

Association of Receipt of Palliative Care Interventions With Health Care Use, Quality of Life, and Symptom Burden Among Adults With Chronic Noncancer Illness: A Systematic Review and Meta-analysis.

Importance: The evidence for palliative care exists predominantly for patients with cancer. The effect of palliative care on important end-of-life outcomes in patients with noncancer illness is unclear. Objective: To measure the association between palliative care and acute health care use, quality of life (QOL), and symptom burden in adults with chronic noncancer illnesses. Data Sources: MEDLINE, Embase, CINAHL, PsycINFO, and PubMed from inception to April 18, 2020. Study Selection: Randomized clinical trials of palliative care interventions in adults with chronic noncancer illness. Studies involving at least 50% of patients with cancer were excluded. Data Extraction and Synthesis: Two reviewers independently screened, selected, and extracted data from studies. Narrative synthesis was conducted for all trials. All outcomes were analyzed using random-effects meta-analysis. Main Outcomes and Measures: Acute health care use (hospitalizations and emergency department use), disease-generic and disease-specific quality of life (QOL), and symptoms, with estimates of QOL translated to units of the Functional Assessment of Chronic Illness Therapy-Palliative Care scale (range, 0 [worst] to 184 [best]; minimal clinically important difference, 9 points) and symptoms translated to units of the Edmonton Symptom Assessment Scale global distress score (range, 0 [best] to 90 [worst]; minimal clinically important difference, 5.7 points). Results: Twenty-eight trials provided data on 13 664 patients (mean age, 74 years; 46% were women). Ten trials were of heart failure (n = 4068 patients), 11 of mixed disease (n = 8119), 4 of dementia (n = 1036), and 3 of chronic obstructive pulmonary disease (n = 441). Palliative care, compared with usual care, was statistically significantly associated with less emergency department use (9 trials [n = 2712]; 20% vs 24%; odds ratio, 0.82 [95% CI, 0.68-1.00]; I2 = 3%), less hospitalization (14 trials [n = 3706]; 38% vs 42%; odds ratio, 0.80 [95% CI, 0.65-0.99]; I2 = 41%), and modestly lower symptom burden (11 trials [n = 2598]; pooled standardized mean difference (SMD), -0.12; [95% CI, -0.20 to -0.03]; I2 = 0%; Edmonton Symptom Assessment Scale score mean difference, -1.6 [95% CI, -2.6 to -0.4]). Palliative care was not significantly associated with disease-generic QOL (6 trials [n = 1334]; SMD, 0.18 [95% CI, -0.24 to 0.61]; I2 = 87%; Functional Assessment of Chronic Illness Therapy-Palliative Care score mean difference, 4.7 [95% CI, -6.3 to 15.9]) or disease-specific measures of QOL (11 trials [n = 2204]; SMD, 0.07 [95% CI, -0.09 to 0.23]; I2 = 68%). Conclusions and Relevance: In this systematic review and meta-analysis of randomized clinical trials of patients with primarily noncancer illness, palliative care, compared with usual care, was statistically significantly associated with less acute health care use and modestly lower symptom burden, but there was no significant difference in quality of life. Analyses for some outcomes were based predominantly on studies of patients with heart failure, which may limit generalizability to other chronic illnesses.

Cost-effectiveness of Investment in End-of-Life Home Care to Enable Death in Community Settings.

BACKGROUND: Many people with terminal illness prefer to die in home-like settings-including care homes, hospices, or palliative care units-rather than an acute care hospital. Home-based palliative care services can increase the likelihood of death in a community setting, but the provision of these services may increase costs relative to usual care. OBJECTIVE: The aim of this study was to estimate the incremental cost per community death for persons enrolled in end-of-life home care in Ontario, Canada, who died between 2011 and 2015. METHODS: Using a population-based cohort of 50,068 older adults, we determined the total cost of care in the last 90 days of life, as well as the incremental cost to achieve an additional community death for persons enrolled in end-of-life home care, in comparison with propensity score-matched individuals under usual care (ie, did not receive home care services in the last 90 days of life). RESULTS: Recipients of end-of-life home care were nearly 3 times more likely to experience a community death than individuals not receiving home care services, and the incremental cost to achieve an additional community death through the provision of end-of-life home care was CAN$995 (95% confidence interval: -$547 to $2392). CONCLUSION: Results suggest that a modest investment in end-of-life home care has the potential to improve the dying experience of community-dwelling older adults by enabling fewer deaths in acute care hospitals.

Patient- and Caregiver-Reported Assessment Tools for Palliative Care: Summary of the 2017 Agency for Healthcare Research and Quality Technical Brief.

CONTEXT: Assessment tools are data collection instruments that are completed by or with patients or caregivers and which collect data at the individual patient or caregiver level. OBJECTIVES: The objectives of this study are to 1) summarize palliative care assessment tools completed by or with patients or caregivers and 2) identify needs for future tool development and evaluation. METHODS: We completed 1) a systematic review of systematic reviews; 2) a supplemental search of previous reviews and Web sites, and/or 3) a targeted search for primary articles when no tools existed in a domain. Paired investigators screened search results, assessed risk of bias, and abstracted data. We organized tools by domains from the National Consensus Project Clinical Practice Guidelines for Palliative Care and selected the most relevant, recent, and highest quality systematic review for each domain. RESULTS: We included 10 systematic reviews and identified 152 tools (97 from systematic reviews and 55 from supplemental sources). Key gaps included no systematic review for pain and few tools assessing structural, cultural, spiritual, or ethical/legal domains, or patient-reported experience with end-of-life care. Psychometric information was available for many tools, but few studies evaluated responsiveness (sensitivity to change) and no studies compared tools. CONCLUSION: Few to no tools address the spiritual, ethical, or cultural domains or patient-reported experience with end-of-life care. While some data exist on psychometric properties of tools, the responsiveness of different tools to change and/or comparisons between tools have not been evaluated. Future research should focus on developing or testing tools that address domains for which few tools exist, evaluating responsiveness, and comparing tools.

Implementing Evidence-Based Palliative Care Programs and Policy for Cancer Patients: Epidemiologic and Policy Implications of the 2016 American Society of Clinical Oncology Clinical Practice Guideline Update.

The American Society of Clinical Oncology (ASCO) recently convened an Ad Hoc Palliative Care Expert Panel to update a 2012 provisional clinical opinion by conducting a systematic review of clinical trials in palliative care in oncology. The key takeaways from the updated ASCO clinical practice guidelines (CPGs) are that more people should be referred to interdisciplinary palliative care teams and that more palliative care specialists and palliative care-trained oncologists are needed to meet this demand. The following summary statement is based on multiple randomized clinical trials: "Inpatients and outpatients with advanced cancer should receive dedicated palliative care services, early in the disease course, concurrent with active treatment. Referral of patients to interdisciplinary palliative care teams is optimal, and services may complement existing programs" (J Clin Oncol. 2017;35(1):96). This paper addresses potential epidemiologic and policy interpretations and implications of the ASCO CPGs. Our review of the CPGs demonstrates that to have clinicians implement these guidelines, there is a need for support from stakeholders across the health-care continuum, health system and institutional change, and changes in health-care financing. Because of rising costs and the need to improve value, the need for coordinated care, and change in end-of-life care patterns, many of these changes are already underway.

Economic Evaluation of a Hospital-Based Palliative Care Program.

PURPOSE: Establish costs of an inpatient palliative care unit (PCU) and conduct a threshold analysis to estimate the maximum possible costs for the PCU to be considered cost effective. METHODS: We used a hospital perspective to determine costs on the basis of claims from administrative data from Johns Hopkins PCU between March 2013 and March 2014. Using existing literature, we estimated the number of quality-adjusted life years (QALYs) that the PCU could generate. We conducted a threshold analysis to assess the maximum costs for the PCU to be considered cost effective, incorporating willingness to pay ($180,000 per QALY). Three types of costs were considered, which included variable costs alone, contribution margin (ie, revenue minus variable costs), and PCU cost savings compared with usual care (from a separate publication). RESULTS: The data showed that there were 153 patient encounters (PEs), variable costs of $1,050,031 ($1,343 per PE per day), a contribution margin of $318,413 ($407 per PE per day), and savings compared with usual care of $353,645 ($452 savings per PE per day). On the basis of the literature, the program could generate 3.11 QALYs from PEs (0.05 QALY) and caregivers (3.06 QALYs). The threshold analysis determined that the maximum variable cost required to be cost effective was $559,800 (an additional $716 per PE per day could be spent). CONCLUSION: According to variable costs, the PCU was not cost effective; however, when considering savings of the PCU compared with usual care, the PCU was cost saving. The contribution margin showed that the PCU was cost saving. This study supports efforts to expand PCUs, which enhance care for patients and their caregivers and can generate hospital savings. Future research should prospectively explore the cost utility of PCUs.

Impact of a New Palliative Care Program on Health System Finances: An Analysis of the Palliative Care Program Inpatient Unit and Consultations at Johns Hopkins Medical Institutions.

PURPOSE: Palliative care inpatient units (PCUs) can improve symptoms, family perception of care, and lower per-diem costs compared with usual care. In March 2013, Johns Hopkins Medical Institutions (JHMI) added a PCU to the palliative care (PC) program. We studied the financial impact of the PC program on JHMI from March 2013 to March 2014. METHODS: This study considered three components of the PC program: PCU, PC consultations, and professional fees. Using 13 months of admissions data, the team calculated the per-day variable cost pre-PCU (ie, in another hospital unit) and after transfer to the PCU. These fees were multiplied by the number of patients transferred to the PCU and by the average length of stay in the PCU. Consultation savings were estimated using established methods. Professional fees assumed a collection rate of 50%. RESULTS: The total positive financial impact of the PC program was $3,488,863.17. There were 153 transfers to the PCU, 60% with cancer, and an average length of stay of 5.11 days. The daily loss pretransfer to the PCU of $1,797.67 was reduced to $1,345.34 in the PCU (-25%). The PCU saved JHMI $353,645.17 in variable costs, or $452.33 per transfer. Cost savings for PC consultations in the hospital, 60% with cancer, were estimated at $2,765,218. $370,000 was collected in professional fees savings. CONCLUSION: The PCU and PC program had a favorable impact on JHMI while providing expert patient-centered care. As JHMI moves to an accountable care organization model, value-based patient-centered care and increased intensive care unit availability are desirable.

A qualitative exploration of chronic pain and opioid treatment among HIV patients with drug use disorders.

OBJECTIVE: The study explored high-risk participants' experiences with pain management regarding clinical access to and use of prescription opioids. DESIGN: Qualitative semistructured interviews and focus groups. SETTING: Data were collected August 2014 to May 2015 at an urban community-based research facility in Baltimore City, MD. PARTICIPANTS: HIV participants with chronic pain and a history of illicit drug use. METHODS: Qualitative coding and analysis used an iterative, inductive, and thematic approach and coders achieved inter-coder consistency. RESULTS: The authors identified two major themes. First, participants had positive and negative interactions with healthcare providers regarding chronic pain treatment. Participants perceived that providers lacked empathy for their pain and/or were not adequately managing their pain. These interactions resulted in participants seeking new providers or mistrusting the medical system. Further, providers' surveillance of participants' pain treatment regimen contributed to distress surrounding pain management. The second theme centered on participants' pain management experiences with prescribed opioid analgesics. Participants felt they were receiving dosages and classes of analgesics that did not sufficiently address their pain, and consequently modified their dosages or rationed prescription opioids. Other participants were reluctant to take analgesics due to their history of illicit drug use. Some participants relapsed to illicit drug use when they felt their prescription opioids did not adequately address their pain needs. CONCLUSIONS: Participant struggles with receiving and managing prescribed opioid analgesics suggest a need for: therapies beyond these medications; guidelines for providers specific to this population; and harm reduction trainings for providers.