Background: Family meetings facilitate the exploration of issues and goals of care however, there has been minimal research to determine the benefits and cost implications.
Aims: To determine: (1) if family caregivers of hospitalised patients referred to palliative care who receive a structured family meeting report lower psychological distress (primary outcome), fewer unmet needs, improved quality of life; feel more prepared for the caregiving role; and receive better quality of end-of-life care; (2) if outcomes vary dependant upon site of care and; (3) the cost-benefit of implementing meetings into routine practice.
Design: Pragmatic cluster randomised trial involving palliative care patients and their primary family caregivers at three Australian hospitals. Participants completed measures upon admission (Time 1); 10 days later (Time 2) and two months after the patient died (Time 3). Regression analyses, health utilisation and process evaluation were conducted.
Results: 297 dyads recruited; control (n = 153) and intervention (n = 144). The intervention group demonstrated significantly lower psychological distress (Diff: –1.68, p < 0.01) and higher preparedness (Diff: 3.48, p = 0.001) at Time 2. No differences were identified based on quality of end of life care or health utilisation measures.
Conclusions: Family meetings may be helpful in reducing family caregiver distress and enhancing their preparedness for the caregiving role and it appears they may be conducted without increased hospital health utilisation impacts; although opportunity costs need to be considered in order to routinely offer these as a standardised intervention. Additional health economic examination is also advocated to comprehensively understand the cost-benefit implications.
Trial Registration: Australian and New Zealand Clinical Trials Registry ACTRN12615000200583
The number of residents in long-term care facilities (LTCFs) in need of palliative care is growing in the Western world. Therefore, it is foreseen that significantly higher percentages of budgets will be spent on palliative care. However, cost-effectiveness analyses of palliative care interventions in these settings are lacking. Therefore, the objective of this paper was to assess the cost-effectiveness of the ‘PACE Steps to Success’ intervention. PACE (Palliative Care for Older People) is a 1-year palliative care programme aiming at integrating general palliative care into day-to-day routines in LTCFs, throughout seven EU countries.
BACKGROUND: Hospitalisation rates for the older population have been increasing with end-of-life care becoming a more medicalised and costly experience. There is evidence that some of these patients received non-beneficial treatment during their final hospitalisation with a third of the non-beneficial treatment duration spent in intensive care units. This study aims to increase appropriate care and treatment decisions and pathways for older patients at the end of life in Australia. This study will implement and evaluate a prospective feedback loop and tailored clinical response intervention at three hospitals in Queensland, Australia.
METHODS: A stepped-wedge cluster randomised trial will be conducted with up to 21 clinical teams in three acute hospitals over 70 weeks. The study involves clinical teams providing care to patients aged 75 years or older, who are prospectively identified to be at risk of non-beneficial treatment using two validated tools for detecting death and deterioration risks. The intervention's feedback loop will provide the teams with a summary of these patients' risk profiles as a stimulus for a tailored clinical response in the intervention phase. The Consolidated Framework for Implementation Research will be used to inform the intervention's implementation and process evaluation. The study will determine the impact of the intervention on patient outcomes related to appropriate care and treatment at the end of life in hospitals, as well as the associated healthcare resource use and costs. The primary outcome is the proportion of patients who are admitted to intensive care units. A process evaluation will be carried out to assess the implementation, mechanisms of impact, and contextual barriers and enablers of the intervention.
DISCUSSION: This intervention is expected to have a positive impact on the care of older patients near the end of life, specifically to improve clinical decision-making about treatment pathways and what constitutes appropriate care for these patients. These will reduce the incidence of non-beneficial treatment, and improve the efficiency of hospital resources and quality of care. The process evaluation results will be useful to inform subsequent intervention implementation at other hospitals.
INTRODUCTION: A high outpatient clinic no-show rate affects clinical outcomes, increases healthcare costs, and reduces both access to care and provider productivity. In an effort to reduce the no-show rate at a busy palliative medicine outpatient clinic, a quality improvement project was launched consisting of a telephone call made by clinic staff prior to appointments. The study aimed to determine the effect of this intervention on the no-show rate, and assess the financial impact of a decreased no-show rate.
METHODS AND MATERIALS: The outpatient clinic no-show rate was measured from September 1 to December 31, 2015. Data from the first 8 months of the calendar year was removed since these could not be verified. Starting January 1, 2016, patients received a telephone call reminder 24 hours prior to their scheduled outpatient appointment for confirmation. No-show rate was again measured for the calendar year 2016. Opportunity costs were calculated for unfulfilled clinic visits.
RESULTS: Of the 1224 completed visits from September 1 to December 31, 2015, 271 were no-shows with an average rate of 11.8%. After the intervention, there were 4368 completed visits and 562 no-shows. The no-show rate for 2016 averaged 6.9% (p < 0.001), down 4.9% from the last 4 months of 2015. Estimated opportunity costs were about 396 no-show visits avoided, equivalent to an annual savings of about $79,200.
CONCLUSION: A telephone call reminder to patients 24 hours prior to their appointment decreased the no-show rate in an outpatient palliative medicine clinic. Avoiding unfulfilled visits resulted in substantial opportunity costs.
BACKGROUND: In recent years the use of time to death (TTD) variables in the modeling of individual health expenditures has been of interest to health economics researchers. The aim of this study was to investigate the effect of age and TTD on hospital inpatient expenditure (HIE).
METHODS: We used a claims database from Iran Health Insurance Organization of Tehran city that includes considerable proportion of Tehran residents and contains information on insured individuals' HIE. We included HIE of all insured decedents (30 to 90 years old) who died during March 2013 and March 2014 (n=1018). No sampling was required. According to the decedents' date of death, we extracted their last 24 months HIE. The period of time March 30, 2011 until March 30, 2014 (3 years) was used to guarantee a full 24 months of observations for decedents. A two-part econometric model was employed to investigate the effect of age, TTD, and some demographic variables on probability and conditional amount of individuals' hospital expenditure. Stata software (version 16.0) was used for data processing and analysis.
RESULTS: Our results demonstrated that the month-based TTDs especially near months before death of decedents (TTD1 to TTD10) significantly affected both probability and conditional amount of HIE. One month before death incurred more HIE than the rest of the months. A further interesting finding is that after including TTD, age variable as a conditional driver of HIE loses its direct effect on decedents' HIE, but age TTD interaction effect on HIE is still positive and statistically significant.
CONCLUSION: The results confirm that TTD as a proxy of mortality indicator has a considerable effect on decedents' HIE. The age variable has not directly affected decedents' HIE but indirectly and through its interaction with TTD has a statistically significant effect on HIE. In addition to age, policy-makers should consider TTD to make better predictions of future HIE.
Introduction: In light of this growing palliative care and end of life care patient population, as well as new (expensive) drugs and treatments, quality research providing evidence for decision-making is required. However, common research guidance is lacking in this field, especially in respect to the methods applied in economic evaluations. Therefore, the aim of the planned systematic review is to identify and summarise relevant information on methodological challenges, potential solutions and recommendations for conducting economic evaluations of interventions in adult patients, irrespective of their underlying disease and gender in the palliative or end of life care settings, with no restrictions in regards to countries/geographical regions. The results of this systematic review may help to clarify the current methodological questions and form the basis of new, setting specific methods guidelines and support ongoing applied economic evaluations in the field.
Methods and analysis: A systematic review will be conducted using Medline, Embase, Health Technology Assessment Database and NHS Economic Evaluation Database to identify the studies published from 1999 onwards with relevant information on methodological challenges, potential solutions and recommendations for conducting economic evaluations in the palliative or end of life care settings. Articles in English, German, Spanish, French or Dutch language will be considered. Two independent reviewers will conduct the screening of articles; any discrepancies will be resolved by discussion and involvement of a third reviewer. Predesigned data extraction forms will be applied, consequently narratively synthesised and categorised. Studies’ methodological quality will be critically appraised. Besides existing economic guidelines and checklists for specific information on the palliative and end of life care sector will be searched.
Ethics and dissemination: Ethical approval is not required, as this is a planned systematic review of published literature. An article will be disseminated in a related peer-reviewed journal, as well as presented at leading palliative care and health economic conferences.
This insightful study examines the deeply personal and heart-wrenching tensions among financial considerations, emotional attachments, and moral arguments that motivate end-of-life decisions.
America’s health care system was built on the principle that life should be prolonged whenever possible, regardless of the costs. This commitment has often meant that patients spend their last days suffering from heroic interventions that extend their life by only weeks or months. Increasingly, this approach to end-of-life care is coming under scrutiny, from a moral as well as a financial perspective. Sociologist Roi Livne documents the rise and effectiveness of hospice and palliative care, and growing acceptance of the idea that a life consumed by suffering may not be worth living.
Values at the End of Life combines an in-depth historical analysis with an extensive study conducted in three hospitals, where Livne observed terminally ill patients, their families, and caregivers negotiating treatment. Livne describes the ambivalent, conflicted moments when people articulate and act on their moral intuitions about dying. Interviews with medical staff allowed him to isolate the strategies clinicians use to help families understand their options. As Livne discovered, clinicians are advancing the idea that invasive, expensive hospital procedures often compound a patient’s suffering. Affluent, educated families were more readily persuaded by this moral calculus than those of less means.
Once defiant of death—or even in denial—many American families and professionals in the health care system are beginning to embrace the notion that less treatment in the end may be better treatment.
Delivery of end-of-life care has gained prominence in the UK, driven by a focus upon the importance of patient choice. In practice choice is influenced by several factors, including the guidance and conduct of healthcare professionals, their different understandings of what constitutes 'a good death', and contested ideas of who is best placed to deliver this. We argue that the attempt to elicit and respond to patient choice is shaped in practice by a struggle between distinct 'institutional logics'. Drawing on qualitative data from a two-part study, we examine the tensions between different professional and organisational logics in the delivery of end-of-life care. Three broad clusters of logics are identified: finance, patient choice and professional authority. We find that the logic of finance shapes the meaning and practice of 'choice', intersecting with the logic of professional authority in order to shape choices that are in the 'best interest' of the patient. Different groups might be able to draw upon alternative forms of professionalism, and through these enact different versions of choice. However, this can resemble a struggle for ownership of patients at the end of life, and therefore, reinforce a conventional script of professional authority.
BACKGROUND: Patients at their end-of-life (EOL) phase frequently visit the emergency department (ED) due to their symptoms, yet the environment and physicians in ED are not traditionally equipped or trained to provide palliative care. This multicentre study aims to measure the current quality of EOL care in ED to identify gaps, formulate improvements and implement the improved EOL care protocol. We shall also evaluate healthcare resource utilisation and its associated costs.
METHODS AND ANALYSIS: This study employs a quasiexperimental interrupted time series design using both qualitative and quantitative methods, involving the EDs of three tertiary hospitals in Singapore, over a period of 3 years. There are five phases in this study: (1) retrospective chart reviews of patients who died within 5 days of ED attendance; (2) pilot phase to validate the CODE questionnaire in the local context; (3) preimplementation phase; (4) focus group discussions (FGDs); and (5) postimplementation phase. In the prospective cohort, patients who are actively dying or have high likelihood of mortality this admission, and whose goal of care is palliation, will be eligible for inclusion. At least 140 patients will be recruited for each preimplementation and postimplementation phase. There will be face-to-face interviews with patients' family members, review of medical records and self-administered staff survey to evaluate existing knowledge and confidence. The FGDs will involve hospital and community healthcare providers. Data obtained from the retrospective cohort, preimplementation phase and FGDs will be used to guide prospective improvement and protocol changes. Patient, family and staff relevant outcomes from these changes will be measured using time series regression.
ETHICS AND DISSEMINATION: The study protocol has been reviewed and ethics approval obtained from the National Healthcare Group Domain Specific Review Board, Singapore. The results from this study will be actively disseminated through manuscript publications and conference presentations.
Benefits newly available under Medicare Advantage are not well-known to consumers and uptake has been limited. At the same time, CMS has propsed funding the hospice benefit differently, which would allow MA plans to “carve in” to this benefit, creating additional uncertainty.
In this paper, we propose and defend three economic arguments for permitting assisted dying. These arguments are not intended to provide a rationale for legalising assisted suicide or euthanasia in and of themselves; rather, they are supplementary arguments that should not be neglected when considering the ethics of assisted dying. The first argument is that permitting assisted dying allows consenting patients to avoid negative quality-adjusted life years, enabling avoidance of suffering. The second argument is that the resources consumed by patients who are denied assisted dying could instead be used to provide additional (positive) quality-adjusted life years for patients elsewhere in the healthcare system who wish to continue living and to improve their quality of life. The third argument is that organ donation may be an additional potential source of quality-adjusted life years in this context. We also anticipate and provide counterarguments to several objections to our thesis. Taken together, the cumulative avoidance of negative quality-adjusted life years and gain in positive quality-adjusted life years suggest that permitting assisted dying would substantially benefit both the small population that seeks assisted suicide or euthanasia, and the larger general population. As such, denying assisted dying is a lose–lose situation for all patients.
PURPOSE: The median overall survival (OS) for metastatic pancreatic ductal adenocarcinoma (mPDAC) is < 1 year. Factors that contribute to quality of life during treatment are critical to quantify. One factor-time spent obtaining clinical services-is understudied. We quantified total outpatient time among patients with mPDAC receiving palliative systemic chemotherapy.
METHODS: We conducted a retrospective analysis using four patient-level time measures calculated from the medical record of patients with mPDAC receiving 5-fluorouracil infusion, leucovorin, oxaliplatin, and irinotecan; gemcitabine/nab-paclitaxel; or gemcitabine within the University of Pennsylvania Health System between January 1, 2011 and January 15, 2019. These included the total number of health care encounter days (any day with at least one visit) and total visit time. Total visit time represented the time spent receiving care (care time) plus time spent commuting and waiting for care (noncare time). We performed descriptive statistics on these outpatient time metrics and compared the number of encounter days to OS.
RESULTS: A total of 362 patients were identified (median age, 65 years; 52% male; 78% white; 62% received gemcitabine plus nab-paclitaxel). Median OS was 230.5 days (7.6 months), with 79% of patients deceased at the end of follow-up. On average, patients had 22 health care encounter days, accounting for 10% of their total days survived. Median visit time was 4.6 hours, of which 2.5 hours was spent commuting or waiting for care.
CONCLUSION: On average, patients receiving palliative chemotherapy for mPDAC spend 10% of survival time on outpatient health care. More than half of this time is spent commuting and waiting for care. These findings provide an important snapshot of the patient experience during ambulatory care, and efforts to enhance efficiency of care delivery may be warranted.
The National Cancer Institute estimates that $154 billion will be spent on care for people with cancer in 2019, distributed across the year after diagnosis (31%), the final year of life (31%), and continuing care between those two (38%). Projections of future costs estimate persistent growth in care expenditures. Early research studies on the economics of palliative care have reported a general pattern of cost savings during inpatient hospital admissions and the end-of-life phase. Recent research has demonstrated more complex dynamics, but expanding palliative care capacity to meet clinical guidelines and population health needs seems to save costs. Quantifying these cost savings requires additional research, because there is significant variance in estimates of the effects of treatment on costs, depending on the timing of intervention, the primary diagnosis, and the overall illness burden. Because ASCO guidelines state that palliative care should be provided concurrently with other treatment from the point of diagnosis onward for all metastatic cancer, new and ambitious research is required to evaluate the cost effects of palliative care across the entire disease trajectory. We propose a series of ways to reach the guideline goals.
Background: There is increasing interest in expanding palliative care (PC) services in the community-based outpatient oncology clinic. However, there is a paucity of data on the economics of integrating palliative medicine in this setting.
Objective: Provide scheduling and financial data on PC physician encounters, charges, and reimbursement in a community-based oncology practice.
Design: Retrospective review of billing data and scheduling software at a single practice.
Setting: A community-based oncology practice comprised of 25 medical oncologists in 8 suburban offices. PC physicians were integrated into the practice.
Measurement: Billed PC physician charges were analyzed on an annual basis for a four-year period from initial start-up of the PC clinic on September 2, 2014 to August 31, 2018.
Results: During year 1, a single PC physician saw 483 new patients and 827 follow-up encounters in four different office locations. In year 2, he saw 471 new patients and 1229 follow-up encounters. Actual collected revenue for those 1700 encounters was $228,168. In year 3, a second PC physician was added and services were expanded to a total of six offices. In year 4, two PC physicians billed for 832 new encounters and 2450 follow-up encounters for a total collected revenue of $454,356.
Conclusions: In a suburban community-based oncology practice, a PC physician can support a substantial part of his or her cost to an oncology practice.
J'ai professé, en tant qu'infirmier, pendant plus de 20 ans en service d'oncologie, puis de soins palliatifs. Enseignant et psychothérapeute depuis 10 ans, j'ai la chance de continuer de travailler avec des étudiants infirmiers dans des services de soins palliatifs et de psychiatrie, ainsi que de superviser des équipes de soins. Ethicien de formation, je fais partie d'un comité d'éthique dans un hôpital neuropsychiatrique. Ces différentes casquettes me donnent le grand privilège de rencontrer à la fois des patients en fin de vie ou souffrant de troubles psychiques, des soignants et des étudiants confrontés à des situations difficiles, et de relire, en comité d'éthique, des situations cliniques de grande souffrance.
La question de l'euthanasie est très régulièrement évoquée et suscite de nombreux débats, aussi passionnels que passionnants.
BACKGROUND: Palliative care aims to improve quality of life by relieving physical, emotional, and spiritual suffering. Health system planning can be informed by evaluating cost and effectiveness of health care delivery, including palliative care.
AIM: The objectives of this article were to describe and critically appraise economic evaluations of palliative care models and to identify cost-effective models in improving patient-centered outcomes.
DESIGN: We conducted a systematic review and registered our protocol in PROSPERO (CRD42016053973).
DATA SOURCES: A systematic search of nine medical and economic databases was conducted and extended with reference scanning and gray literature. Methodological quality was assessed using the Drummond checklist.
RESULTS: We identified 12,632 articles and 5 were included. We included two modeling studies from the United States and England, and three economic evaluations from England, Australia, and Italy. Two studies compared home-based palliative care models to usual care, and one compared home-based palliative care to no care. Effectiveness outcomes included hospital readmission prevented, days at home, and palliative care symptom severity. All studies concluded that palliative care was cost-effective compared to usual care. The methodological quality was good overall, but three out of five studies were based on small sample sizes.
CONCLUSION: Applicability and generalizability of evidence is uncertain due to small sample sizes, short duration, and limited modeling of costs and effects. Further economic evaluations with larger sample sizes are needed, inclusive of the diversity and complexity of palliative care populations and using patient-centered outcomes.
In many countries, it has been publicly debated whether health gains for patients at end-of-life (EoL) should be valued higher than health gains for other patients. This has led to a range of stated preference studies examining the justification for an EoL premium on the basis of public preferences - so far with mixed findings. In the present study, we seek to extend this literature. We apply a simple stated preference approach with illustrative binary choices to elicit both individual and social preferences for several types of health gains. More specifically, we investigate whether health gains at EoL, resulting from either an improvement in quality of life (QoL) or life expectancy (LE) are valued differently from similarly sized health gains from preventive treatment and treatment of a temporary disease. Furthermore, we examine whether social preferences are affected by the age of beneficiaries. A web-based survey was conducted in 2015 using a random sample of 1047 members of the general public in Denmark. Overall, we do not find evidence to support an EoL premium compared to other health gains, neither when preferences are elicited from a social nor an individual perspective. Furthermore, our results demonstrate that the type of the health gain received matters to preferences for treatment at EoL with more weight given to gains in QoL than gains in LE. Finally, we find heterogeneity in preferences according to respondent characteristics, perspectives and age of beneficiaries.
Background: Palliative care for seriously ill adults is spreading rapidly, giving rise to a fast-growing business sector: the home-based palliative care (HBPC) industry. These programs offer services common to most palliative care programs; what distinguishes them is that services are delivered to patients in their homes. Research shows these programs hold promise for improving patient outcomes at lower cost than usual care. Given this, growth in the HBPC business is likely fueled partly by the sector's money-making potential. As in many emerging industries, there are concerns that HBPC benefit may not be enjoyed equitably by patients and other stakeholders.
Objective: To safeguard HBPC quality, we take stock of where quality problems may manifest and discuss strategies to forestall these problems.
Methods: We examine HBPC trends with significant implications for care quality and cost, including HBPC payment, patient enrollment, staff management, and patient visits.
Results/Conclusions: Recommendations pertain to quality metrics, patient disclosures, and further research.
Providing care to cancer patients in resource-poor settings often demands complex trade-offs regarding resource allocation. It is estimated that over 60% of all cancer deaths worldwide occur in low- and middle-income countries, where channels to care and appropriate symptom management interventions are overstressed or obsolete. Concepts of distributive justice underlie much of global health policy. As appetites for expanding global palliative care services increase, so do questions of fair and culturally appropriate distribution. The ethical principle of distributive justice underpins questions of resource allocation at a fundamental level. One of the most challenging concepts for health care workers immersing in cross-cultural contexts is the idea that ethics are somewhat malleable; they shape and are shaped by the unique sociopolitical, economic, intracultural, and power dynamics of a particular setting. In this article, we use the case of a young woman diagnosed with terminal cancer in an underserved community in rural Uganda to illustrate the conflicting concepts of fairness, which dictate distribution of scarce resources in low- and middle-income countries. Notions of distributive justice vary across cultural, societal, and even individual norms, with some definitions allowing for discrimination based on merit or need. Resource allocation in the absence of cultural humility or a genuine willingness to understand decision-making priorities in a given culture can contribute to inequity and may have harmful consequences.
Introduction: Children's hospices offer support to children and their families according to a model that is quite different from adult hospices and has evolved in parallel with specialist paediatric palliative medicine services.
Sources of data: Published research, Together for Short Lives.
Areas of agreement: The services hospices offer are highly valued by families.
Areas of controversy: It is not always clear that hospices can be described as 'specialist', which can make it difficult for hospices to negotiate appropriate commissioning arrangements with the statutory sector.
Growing points: Children's palliative care generally is poorly developed compared with the adult specialty, and local providers should work with hospices to help redress the inequity that children face in accessing specialist palliative care.
Areas timely for developing research: If hospices are to continue to be important providers of palliative care in children they must develop robust and fair relationships with local healthcare providers. That would be facilitated by development of a funding formula for children that properly acknowledges the part hospices already play in palliative care.