Context: Although the early and middle stages of Huntington's disease (HD) and its complications have been well described, less is known about the course of late-stage illness. In particular, little is known about the population of patients who enroll in hospice.
Objectives: Our goal is to describe the characteristics of patients with HD who enrolled in hospice.
Methods: This is a retrospective cohort study of electronic medical record data from 12 not-for-profit hospices in the United States from 2008 to 2012.
Results: Of the 164,032 patients admitted to these hospices, 101 (0.06%) had a primary diagnosis of HD. Their median age was 57 (IQR 48-65) and 53 (52.5%) were women. Most patients were cared for by a spouse (n = 36, 36.6%) or adult child (n = 20, 19.8%). At the time of admission, most patients were living either at home (n = 39, 38.6%) or in a nursing home (n = 41, 40.6%). All were either bedbound or could ambulate only with assistance. The most common symptom reported during enrollment in hospice was pain (n = 34, 33.7%) followed by anxiety (n = 30, 29.7%), nausea (n = 18, 17.8%), and dyspnea (n = 10, 9.9%). Patients had a median length of stay in hospice of 42 days, which was significantly longer than that of other hospice patients in the sample (17 days), P < 0.001. Of the 101 patients who were admitted to hospice, 73 died, 11 were still enrolled at the time of data analysis, and 17 left hospice either because they no longer met eligibility criteria (n = 14, 13.7%) or because they decided to seek treatment for other medical conditions (n = 3, 3.0%). Of the 73 patients who died while on hospice, most died either in a nursing home (n = 29; 40%) or a hospital (n = 27; 37%). Seventeen patients (23%) died at home. No patient that started in a facility died at home.
Conclusion: Patients with HD are admitted to hospice at a younger age compared with other patients (57 vs. 76 years old) but have a significant symptom burden and limited functional status. Although hospice care emphasizes the importance of helping patients to remain in their homes, only a minority of these patients were able to die at home.
Proper patient selection for palliative surgery requires a challenging and often complex decision-making process. Optimally, proposed palliative procedures must be undertaken with an intent to provide the greatest possible value to patients at the end of life. This review describes the process of patient selection and identifies psychosocial, biochemical, and functional markers that can complement sound surgical judgment.
Background: In 2004, Aetna, a national health insurer, launched the Aetna Compassionate Care Program (ACCP) targeting members diagnosed with an advanced illness with a view to increase access to palliative care and hospice services.
Objective: The objective of this study is to evaluate the impact of ACCP on health care utilization and hospice enrollment among enrolled members.
Methods: This was a retrospective cohort study comparing participants in ACCP to a matched control group using a propensity score method. The study group consisted of Aetna Medicare Advantage members who participated in the ACCP between January 2014 and June 2015. Potential control group members were those who were not identified by the predictive model nor were referred to the ACCP program through other means. The primary outcomes of interest were hospice use measured as percent of members electing hospice and median number of days in hospice; health care utilization and medical costs measured as rates and medical costs associated with acute inpatient admissions, emergency room, primary care, and specialty visits in the 30 and 90 days before death.
Results: Participants in the ACCP program were 36% more likely to enroll in hospice (79% vs. 58%, p < 0.0001) and had reduced acute inpatient medical costs ($4169 vs. $5863, p < 0.0001) driven primarily by fewer inpatient admissions (860 vs. 1017, p < 0.0001) in the last 90 days of life.
Conclusions: Advanced illness case management programs such as ACCP can improve access to hospice and improve patient outcomes while reducing unnecessary admissions in the last 90 days of life.
BACKGROUND: Three different models are commonly used to provide palliative care services to cancer patients in Turkey: comprehensive palliative care center (CPCC), hospital inpatient services (HIS) and home healthcare (HHC).
OBJECTIVES: The purpose of this study was to evaluate the cost-effectiveness of three alternative palliative care models for cancer patients.
METHODS: The study included a total of 160 patients diagnosed with cancer (CPCC:60, HIS:59, HHC:41). The patients' quality of life and their levels of satisfaction were used as the indicators of effectiveness, while direct and indirect costs incurred by service providers, patients and relatives were considered in estimating the costs of alternative models. The cost and effectiveness of the alternatives compared the "patient perspective" and "societal perspective" separately.
RESULTS: From a societal perspective, palliative care services provided the HIS model was found to be more cost-effective than the CPCC model. From a patient perspective, HHC was found to be more cost-effective compared to the other two models.
CONCLUSIONS: This study has the potential to provide substantial evidence to health managers and decision-makers with respect to health planning and the formulation of social security policies in Turkey.
OBJECTIVES: We examined public reaction to the proposed Center for Medicare and Medicaid Services rule reimbursing physicians for advanced care planning (ACP) discussions with patients.
METHODS: Public comments made on regulations.gov were reviewed for relevance to ACP policy and their perceived position on ACP (ie, positive, negative and neutral). Descriptive statistics were used to quantify the results.
RESULTS: A total of 2225 comments were submitted to regulations.gov. On review, 69.0% were categorised as irrelevant; among relevant comments (n=689), 81.1% were positive, 18.6% were negative and 0.002% were neutral. Individuals submitted a greater percentage of the total comments as compared to organisations (63.5% and 36.5%, respectively).
CONCLUSIONS: The US Medicare programme is a tax financed social insurance programme that covers all patients 65 years of age and older, including 8 in 10 decedents annually, and it is the part of the US healthcare system most similar to the rest of world. There has been a trend globally towards recognising the importance of aligning patient preferences with care options, including palliative care to deal with advanced life limiting illness. However, ACP is not widely used in the USA, potentially reducing the use of palliative care. Reimbursing ACP discussions between physicians, patients and their family has the potential to have a large impact on the quality of life of persons near death, which can greatly impact public health and the comfort in dealing with our ultimate demise.
This chapter describes design and implementation considerations for clinical trials that evaluate behavioral interventions in hospice and palliative care. We discuss traditional and emerging approaches to randomization and data analysis, considering the unique challenges of the setting including the unpredictable and often stressful conditions that participants find themselves in when dealing with advanced illness and how these affect their ability to participate in prescribed and standardized study procedures. In addition, we discuss considerations for recruitment and retention of participants and methodological approaches such as intention to treat. We also explore options for economic considerations when evaluating an intervention.
Background:: Palliative care services and life-sustaining treatments are provided to dying patients with lung cancer in the United States. However, data on the utilization trends of palliative care services and life-sustaining treatments of dying patients with lung cancer are not available.
Methods: This study was a retrospective analysis of the National Inpatient Sample data (2005-2014) and included patients with lung cancer, aged = 18 years, who died in the hospitals. Claims data of palliative care services and life-sustaining treatments that contained systemic procedures, local procedures, or surgeries were extracted. Compound annual growth rates (CAGRs) using Rao-Scott correction for 2 tests were used to determine the statistical significance of temporal utilization trends of palliative care services and life-sustaining treatments and their hospital costs. Multilevel multivariate regressions were performed to identify factors associated with hospital costs.
Results: A total of 120 144 weighted patients with lung cancer died in the hospitals and 41.9% of them received palliative care services. The CAGRs of systemic procedures, local procedures, surgeries, palliative care services, and hospital cost were 3.42%, 3.48%, 6.08%, 18.5%, and 5.0% (all P < .001), respectively. Increased hospital cost was attributed to systemic procedures (50.6%), local procedures (74.4%), and surgeries (68.5%; all P < .001), respectively. Palliative care services were related to decreasing hospital costs by 28.6% (P < .001).
Conclusion: The temporal trends of palliative care services indicate that their utilization has increased gradually. Palliative care services were associated with reduced hospital costs. However, life-sustaining treatments were associated with increased hospital costs.
BACKGROUND: Aggressive end-of-life (EOL) care is associated with lower quality of life and greater regret about treatment decisions. Higher EOL costs are also associated with lower quality EOL care. Advance care planning and goals-of-care conversations ("EOL discussions") may influence EOL health-care utilization and costs among persons with cancer.
OBJECTIVE: To describe associations among EOL discussions, health-care utilization and place of death, and costs in persons with advanced cancer and explore variation in study measures.
METHODS: A systematic review was conducted using PubMed, Embase, and CINAHL. Twenty quantitative studies published between January 2012 and January 2019 were included.
RESULTS: End-of-life discussions are associated with lower health-care costs in the last 30 days of life (median US$1048 vs US$23482; P < .001); lower likelihood of acute care at EOL (odds ratio [(OR] ranging 0.43-0.69); lower likelihood of intensive care at EOL (ORs ranging 0.26-0.68); lower odds of chemotherapy near death (ORs 0.41, 0.57); lower odds of emergency department use and shorter length of hospital stay; greater use of hospice (ORs ranging 1.79 to 6.88); and greater likelihood of death outside the hospital. Earlier EOL discussions (30+ days before death) are more strongly associated with less aggressive care outcomes than conversations occurring near death.
CONCLUSIONS: End-of-life discussions are associated with less aggressive, less costly EOL care. Clinicians should initiate these discussions with patients having cancer earlier to better align care with preferences.
BACKGROUND: Cancer is the second leading cause of death globally, causing a substantial economic burden on cancer suffers and their families. The aim of this study is to explore the prevalence, determinants and consequences of catastrophic health expenditure (CHE) among urban and rural end-of-life (EOF) cancer patients in China.
METHODS: Using respondent-driven sampling and face-to-face interviews, field research was conducted with a specialist questionnaire. Data were collected on 792 cancer patients who died between June 2013 and June 2016 in China. The determinants of household catastrophic expenditure were identified by multivariate logistic regression.
FINDINGS: It is found that more than 80% of cancer patients received life-extending treatment. Extremely high rates of CHE were identified among EOL cancer patients, at 94.3% for urban families and 96.1% for rural families. After spending for health, 84.1% of urban and 91.1% rural EOL cancer patient households were impoverished, falling below the poverty line. For both urban and rural households, income was the most significant factor associated with catastrophic health expenditure (CHE). Health insurance did not adequately compensate for CHE. Rural families experienced higher CHE, lower levels of health care utilization, a different mix of health care access and higher rates of borrowing for out-of-pocket (OOP) health care expenditures than urban families. Both urban and rural households suffered long-term economic disadvantage due to CHE and borrowing for OOP medical care expenses.
CONCLUSIONS: EOL cancer patients experienced severe CHE, with families forced into poverty. With only about 1% of EOL cancer patients receiving palliative care, developing palliative care services and expanding the acceptance of palliative care in China is both urgent and essential. To help address impoverishment due to CHE, China should also develop targeted programs to reduce income inequality, especially rural-urban inequalities; increase access to health care; and accelerate health reform. Increasing the retirement age would provide households with more savings and wealth to withstand CHE.
BACKGROUND: High rates of health care utilization at the end of life may be a marker of care that does not align with patient-stated preferences. We sought to describe trends in end-of-life care and factors associated with dying in hospital.
METHODS: We conducted a population-level retrospective cohort study of adult decedents in Ontario between Apr. 1, 2004, and Mar. 31, 2015, using linked administrative data sets, including the Office of the Registrar General for Deaths database, the hospital Discharge Abstract Database, the National Ambulatory Care Reporting System and physicians' billing claims (Ontario Health Insurance Plan). The primary outcome was place of death. To determine health care utilization and health care costs during the 6 months before death, we also identified admissions to hospital and to the intensive care unit, emergency department visits, and receipt of mechanical ventilation and palliative care.
RESULTS: In the last 6 months of life, 77.3% of 962 462 decedents presented to an emergency department, 68.4% were admitted to hospital, 19.4% were admitted to an intensive care unit, and 13.9% received mechanical ventilation. Forty-five percent of all deaths occurred in hospital, a proportion that declined marginally over time, whereas receipt of palliative care increased during terminal hospital admissions (from 14.0% in fiscal year 2004/05 to 29.3% in 2014/15, p < 0.001) and in the last 6 months of life (from 28.1% in 2004/05 to 57.7% in 2014/15, p < 0.001). The proportion of decedents who presented to the emergency department, were admitted to hospital or were admitted to the intensive care unit in the last 6 months of life did not change over 11 years. The mean total health care costs in the last 6 months of life were highest among those dying in hospital, with most costs attributable to inpatient medical care.
INTERPRETATION: Health care utilization in the last 6 months of life was substantial and did not decrease over time. It is possible that increased capacity for palliative, hospice and home care at the end of life may help to better align health system resources with the preferences of most patients, a topic that should be explored in future studies.
In response to Dr. Sethi's query about the care of patients with disorders of consciousness (DoC) in the context of scarce resources, what is owed to conscious individuals with brain injury is as much a civil and disability rights issue as one of distributive justice. At a minimum, physicians should identify covert consciousness. Turning to the question of resource allocation, the provision of proper rehabilitation may be cost-effective. Because chronic care costs of DoC patients are fixed, improvements in functional status may decrease longitudinal costs.
Background: The Centers for Medicare & Medicaid Services (CMS) Hospice Quality Reporting Program (HQRP) introduced the requirement that hospices nationwide begin collecting and submitting standardized patient-level quality data on July 1, 2014.
Objectives: This study examined whether this requirement has increased hospice total costs, general costs and visiting services costs.
Research Design: We conducted a cross-sectional study using data from the 2012 and 2014 Medicare hospice cost reports linked to hospice claims. We measured total costs per patient day (PPD), general costs PPD and visiting services costs PPD for freestanding hospices. We estimated the incremental costs of operating in 2014 vs. 2012 using hierarchical random effects models and adjusting for year, wage-index, care volume, case-mix and hospice and market characteristics, stratified by hospice ownership type.
Results: Both for-profit and nonprofit hospices reported higher total costs PPD and general services costs PPD in 2014 compared with 2012. Nonprofit hospices also reported higher general costs PPD in 2014 compared with 2012. In adjusted models, the total costs PPD in 2014 were $10.55 higher than in 2012 for non-profit hospices and $6.43 higher for for-profit hospices. The increase in general costs PPD and visiting services costs PPD ranged from $3.15 to $5.87 by ownership and type of costs. Both for-profit and non-profit hospices showed lower costs PPD for all types associated with more patients and longer length of stay.
Conclusions: Hospice costs increased following the CMS HQRP quality data collection/submission requirement. Complementary studies need to understand whether increased costs brought additional benefits.
BACKGROUND: New population health community-based models of palliative care can result in more compassionate, affordable, and sustainable high-quality care.
OBJECTIVES: We evaluated utilization and cost outcomes of a standardized, population health community-based palliative care program provided by nurses and social workers.
DESIGN: We conducted a retrospective propensity-adjusted study to quantify cost savings and resource utilization associated with a community-based palliative care program. We analyzed claims data from a Medicare Advantage (MA) plan and used a proprietary predictive model to identify 804 members at high risk for overmedicalized end-of-life care. We enrolled 204 members in the palliative care program and compared them with 600 who received standard, telephonic, health plan case management. We excluded members with fewer than two months of enrolled experience or those with insufficient data for analysis, leaving 176 members in the study group and 570 in the control group for evaluation. We compared differences in utilization and costs (medical and pharmacy), hospital admissions, bed days (acute and intensive care unit [ICU]), and emergency department visits.
SETTING/SUBJECTS: A 30,000-member MA plan and a health system in Central Ohio between October 2015 and June 2016.
RESULTS: Members who received community-based palliative care showed a statistically significant 20% reduction in total medical costs ($619 per enrolled member per month), 38% reduction in ICU admissions, 33% reduction in hospital admissions, and 12% reduction in hospital days.
CONCLUSION: A structured nurse and social work model of community-based palliative care using a predictive model to identify MA candidates for intervention can reduce utilization and medical costs.
The Quality Oncology Practice Initiative has several metrics related to end-of life (EOL) care, including hospice enrollment =3 days, with lower scores signaling better performance. Of privately insured patients with head and neck cancer, 3.5% were enrolled in hospice prior to death and 21.3% spent =3 days in hospice, indicating aggressive EOL care. Patients with late hospice enrollment had higher spending in the last 30 days of life (DOL). Patients in hospice =3 days spent $37,426, while those in hospice >3 days spent $24,418 (P = .002). The largest portion of this difference was attributable to inpatient services. Patients in hospice =3 days spent $22,089 on inpatient services in the last 30 DOL, while those in hospice >3 days spent $8361 (P < .001). Further research is needed to determine if more high-value care can be provided with earlier hospice enrollment and to ensure that goal concordance is included in defining high-value care.
BACKGROUND: The intensity of end-of-life care varies substantially both within and between areas. Differing practice patterns of individual physicians are likely influenced by their peers.
OBJECTIVE: To assess whether intensity of end-of-life care previously provided by a physician's peers influences patterns of care at the end-of-life for that physician's patients.
RESEARCH DESIGN: Observational study.
SUBJECTS: A total of 185,947 fee-for-service Medicare enrollees with cancer who died during 2006-2010 who were treated by 26,383 physicians.
MEASURES: Spending in the last month of life, >1 emergency room visit, >1 hospitalization, intensive care unit admission in the last month of life, chemotherapy within 2 weeks of death, no/late hospice, terminal hospitalization.
RESULTS: Mean (SD) spending in the last month of life was $16,237 ($17,124). For each additional $1000 of spending for a peer physician's patients in the prior year, spending for the ego physician's patients was $83 higher (P<0.001). Among physicians with peers both in and out of their practice, more of the peer effect was explained by physicians outside of the practice ($72 increase for each $1000 increase by peer physicians' patients, P<0.001) than peer physicians in the practice ($27 for each $1000 increase by within-practice peer physicians' patients, P=0.01). Results were similar across the other measures of end-of-life care intensity.
CONCLUSIONS: Physician's peers exert influence on the intensity of care delivered to that physician's patients at the end-of-life. Physician education efforts led by influential providers and provider organizations may have potential to improve the delivery of high-value end-of-life care.
BACKGROUND: Patients with terminal conditions are often admitted to the emergency department (ED) for acute medical services, but studies have suggested that multiple ED admissions may negatively impact end-of-life (EOL) care. Research have shown that incorporating palliative care (PC) is integral to optimal EOL care, but it is an aspect of medical practice that is often neglected. The current study sought to provide an overview of health outcomes and hospital costs of patients with cancer admitted to The Ottawa Hospital and/or received acute medical services during their final 2 weeks of life. Cost comparisons and estimates were made between hospital and hospice expenditures.
METHODS: We conducted a retrospective chart review of palliative patients who died at The Ottawa Hospital in 2012. A total of 130 patients who visited the ED within 2 weeks of death were included in the analyses.
RESULTS: In this cohort of patients, 71% of admitted patients did not have advanced care directives and 85% experienced a metastasis, but only 18% had a PC medical doctor. Patients were hospitalized, on average, for 7 days and hospitalization costs exceeded the estimated hospice cost by approximately 2.5 times (Can$1 041 170.00 at Can$8009.00/patient vs Can$401 570.00 at Can$3089.00/patient, respectively).
CONCLUSION: Our study highlighted the importance of PC integration in high-risk patients, such as those in oncology. Patients in our sample had minimal PC involvement, low advanced care directives, and accrued high costs. Based on our analyses, we concluded that these patients would have likely benefited more from hospice care rather than hospitalization.
Advanced chronic obstructive pulmonary disease (COPD), is characterized by high morbidity and mortality. Patients with COPD and their families experience a range of stresses and suffering from a variety of sources throughout the disease's progression. COPD is the fourth leading cause of death in the world. It exists as a significant contributor to global morbidity and mortality, and it results in substantial economic and social burden. This review provides some key facts regarding disease burden and encourages clinician to familiarize themselves and use both conventional and palliative approach early in the disease progression for a better quality of life.
Introduction: Lung cancer exerts a significant societal and health-care-related economic burden and chemotherapy drugs constitute a major factor of total direct cost. The aim of the present study was to assess the direct health-care cost of lung cancer in Greece by conducting a retrospective analysis on the last 6 months of life.
Methods: The present study was based on both the medical data and costs of treatment of deceased adult patients who suffered from terminal stage IIIB/IV lung cancer (non-small cell lung cancer and small cell lung cancer) during the last 6 months of their life. The study's protocol was approved by the Hospital's Research Ethics Committee. Costs included outpatient (outpatient services) and inpatient (inpatient services) costs. Descriptive statistics were mainly used for statistical analysis.
Results: The files of 144 patients were analyzed. The total cost of health-care services for the study population during the last 6 months of life was attributed by 57% to inpatient services, whereas chemotherapy costs (74%) comprised the largest proportion of the total inpatient cost. The highest expenditure for outpatient services was attributed to concomitant medication (59%), followed by the cost of tests (21%) and radiotherapy (20%).
Conclusions: The results of our study indicate that both inpatient and outpatient costs were substantial. The main inpatient and outpatient cost drivers were chemotherapy and concomitant medication, respectively. A more comprehensive nationwide study would be useful to validate our results and to include also indirect costs of cancer care in Greece.
AIM: In this study our aim was to evaluate the nosocomial infections and to understand factors affecting the cost of used antibiotics in palliative care unit.
MATERIALS AND METHODS: Between 2016 and 2017, 113 patients were included in the study in palliative care unit of University of Health Sciences Bursa Yuksek Ihtisas Research and Training Hospital. Patients medical records were analyzed retrospectively for nosocomial infections, chronic diseases, presence of decubitis ulcers, opioid use, enteral, parenteral feedings, mortality and antibiotic cost.
RESULTS: Nosocomial infections were observed in 74.3% of the cases and 92.0% of patients used antibiotics. The mean duration of antibiotic use was 23.13 ± 18.06 days; and the average antibiotic cost was 2009.72 ± 2153.37 TL. Length of stay, male sex, presence of decubitus ulcers, tracheostomy, enteral and parenteral nutrition significantly increased antibiotic cost. Antibiotic cost and mortality were not related statistically.
CONCLUSIONS: A vicious circle in palliative care involves the following order: length of stay, increased rate of infection, use of antibiotics, infection with resistant microorganisms, use of broad spectrum antibiotics, increased length of stay; all affecting each other. Therefore, using antibiotics for aggressive treatment of infections in palliative care is contraindicated as it opposes to real philosophy of palliative care.
As the Medicare program struggles to control expenditures, there is increased focus on opportunities to manage patient populations more efficiently and at a lower cost. A major source of expense for the Medicare program is beneficiaries at end of life. Estimates of the percentage of Medicare costs that arise from patients in the last year of life differ, ranging from 13% to 25%, depending on methods and assumptions. We analyze the most recently available Medicare Limited Data Set to update prior studies of end-of-life costs and examine different methods of performing this calculation. Based upon these findings, we conclude that higher estimates that take into account the spending over the 12 months leading up to death more accurately reflect the full cost of a patient's last year of life. Comparing current year costs of decedents with Medicare's current year costs understates the full budgetary impact of end-of-life patients. Because risk-taking entities such as Medicare Advantage plans and Accountable Care Organizations (ACOs) need to reduce costs while improving the quality of care, they should initiate programs to better manage the care of patients with serious or advanced illness. We also calculate costs for beneficiaries dying in different settings and conclude that more effective use of palliative care and hospice benefits offers a lower cost, higher quality alternative for patients at end of life.