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.
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.
BACKGROUND: Economic evaluations of advance care planning (ACP) in people with chronic kidney disease are scarce. However, past studies suggest ACP may reduce healthcare costs in other settings. We aimed to examine hospital costs and outcomes of a nurse-led ACP intervention compared with usual care in the last 12 months of life for older people with end-stage kidney disease managed with haemodialysis.
METHODS: We simulated the natural history of decedents on dialysis, using hospital data, and modelled the effect of nurse-led ACP on end-of-life care. Outcomes were assessed in terms of patients' end-of-life treatment preferences being met or not, and costs included all hospital-based care. Model inputs were obtained from a prospective ACP cohort study among dialysis patients; renal registries and the published literature. Cost-effectiveness of ACP was assessed by calculating an incremental cost-effectiveness ratio (ICER), expressed in dollars per additional case of end-of-life preferences being met. Robustness of model results was tested through sensitivity analyses.
RESULTS: The mean cost of ACP was AUD$519 per patient. The mean hospital costs of care in last 12 months of life were $100,579 for those who received ACP versus $87,282 for those who did not. The proportion of patients in the model who received end-of-life care according to their preferences was higher in the ACP group compared with usual care (68% vs. 24%). The incremental cost per additional case of end-of-life preferences being met was $28,421. The greatest influence on the cost-effectiveness of ACP was the probability of dying in hospital following dialysis withdrawal, and costs of acute care.
CONCLUSION: Our model suggests nurse-led ACP leads to receipt of patient preferences for end-of-life care, but at an increased cost.
BACKGROUND: Low socioeconomic position (SEP) is recognized as a risk factor for worse health outcomes. How socioeconomic factors influence end-of-life care, and the magnitude of their effect, is not understood. This review aimed to synthesise and quantify the associations between measures of SEP and use of healthcare in the last year of life.
METHODS AND FINDINGS: MEDLINE, EMBASE, PsycINFO, CINAHL, and ASSIA databases were searched without language restrictions from inception to 1 February 2019. We included empirical observational studies from high-income countries reporting an association between SEP (e.g., income, education, occupation, private medical insurance status, housing tenure, housing quality, or area-based deprivation) and place of death, plus use of acute care, specialist and nonspecialist end-of-life care, advance care planning, and quality of care in the last year of life. Methodological quality was evaluated using the Newcastle-Ottawa Quality Assessment Scale (NOS). The overall strength and direction of associations was summarised, and where sufficient comparable data were available, adjusted odds ratios (ORs) were pooled and dose-response meta-regression performed. A total of 209 studies were included (mean NOS quality score of 4.8); 112 high- to medium-quality observational studies were used in the meta-synthesis and meta-analysis (53.5% from North America, 31.0% from Europe, 8.5% from Australia, and 7.0% from Asia). Compared to people living in the least deprived neighbourhoods, people living in the most deprived neighbourhoods were more likely to die in hospital versus home (OR 1.30, 95% CI 1.23-1.38, p < 0.001), to receive acute hospital-based care in the last 3 months of life (OR 1.16, 95% CI 1.08-1.25, p < 0.001), and to not receive specialist palliative care (OR 1.13, 95% CI 1.07-1.19, p < 0.001). For every quintile increase in area deprivation, hospital versus home death was more likely (OR 1.07, 95% CI 1.05-1.08, p < 0.001), and not receiving specialist palliative care was more likely (OR 1.03, 95% CI 1.02-1.05, p < 0.001). Compared to the most educated (qualifications or years of education completed), the least educated people were more likely to not receive specialist palliative care (OR 1.26, 95% CI 1.07-1.49, p = 0.005). The observational nature of the studies included and the focus on high-income countries limit the conclusions of this review.
CONCLUSIONS: In high-income countries, low SEP is a risk factor for hospital death as well as other indicators of potentially poor-quality end-of-life care, with evidence of a dose response indicating that inequality persists across the social stratum. These findings should stimulate widespread efforts to reduce socioeconomic inequality towards the end of life.
BACKGROUND: Children with complex chronic conditions (CCCs) are dying at home with increased frequency, yet the number of studies on the financial feasibility of community-based pediatric palliative care is limited.
OBJECTIVE: The objectives of this study were to (1) describe characteristics of patients who died in a community-based palliative care program and (2) evaluate cost differences associated with participant characteristics and location of death.
DESIGN: A retrospective cohort analysis of administrative and electronic medical record data was employed.
SETTING/SUBJECTS: Children enrolled in the community-based pediatric palliative care program, CompassionNet, who died between 2008 and 2015 were included (N = 224).
MEASUREMENTS: Demographic data, program expense, and paid claims were extracted from an insurance provider database and clinical data from the electronic medical record.
RESULTS: Sixty-six (29%) of the children were <1 year old at death; 80 (36%) were 1–9 years old, and 78 (35%) were 10–22 years old. Malignancy was the most common primary CCC diagnosis for the 158 children/adolescents (n = 89, 56%), whereas neuromuscular conditions (n = 20, 30%) were most frequent for infants. Death at home occurred 21% of the time for infants, 48% for children of ages 1–9 years, and 46% for children of ages 10–22 years. The mean total cost in the final year of life for pediatric patients was significantly related to location of death, a malignancy diagnosis, and participation in Medicaid. The largest estimated difference was between costs of care associated with death at home ($121,111) versus death in the hospital ($200,050).
CONCLUSIONS: Multidisciplinary community-based pediatric palliative care teams provide the opportunity for a home death to be realized as desired. Significant cost differences associated with location of death may support program replication and sustainability.
Palliative patients who cannot go home are placed into nursing homes. This involves moving between up to five locations in the final weeks of life. We censored all inpatients on a single day from a large tertiary centre to investigate the feasibility of a proposed extended care unit to accommodate patients with a prognosis of less than 90 days, unable to return home, and with nursing home referral process commenced. This study identifies a present demand for an extended care unit (15 patients identified), outlines admission criteria, and proposes a funding model that is predicted to save hospital costs (savings of $207.70 per patient per bed day). This patient-focused approach is a feasible economic solution to the current unmet needs of this patient demographic.
BACKGROUND: Approximately half of decedents in Ontario, Canada, receive some palliative care, but little is known about the influence of language on the nature of these services.
OBJECTIVE: To examine differences between English- and French-speaking residents of Ontario in end-of-life care and outcomes (e.g., health care costs and location of death).
DESIGN: A retrospective cohort study using multiple linked databases.
SETTING/SUBJECTS: A population-based cohort of decedents in Ontario (2010–2013) who were living in long-term care institutions (i.e., nursing homes) or receiving home care before death (N = 25,759). Data from two regions with higher representations of Francophones were examined, with the final distribution by primary language being 75% Anglophone, 18% Francophone, and 7% other languages.
RESULTS: Compared with Anglophones, Francophones were more frequent users of long-term care (47.6% vs. 37.1%) and less frequent users of home care (71.3% vs. 76.3%). In adjusted models, the number of days spent in hospital in the last 90 days of life was similar between Anglophones and Francophones, although the odds of dying in hospital were significantly higher among the latter. The mean total health care cost in the last year of life was slightly lower among French ($62,085) compared with English ($63,814) speakers.
CONCLUSIONS: There are statistically significant differences in end-of-life outcomes between linguistic groups in Ontario, namely more institutionalization in long-term care, less home care use and more deaths in-hospital among Francophones (adjusted). Future research is needed to examine the cause of these differences. Strategies to ensure equitable access to quality end-of-life care are required.
Palliative and end-of-life care are special types of healthcare that focus on improving the quality of life of patients who are living with life-threatening illness or nearing their end of life. The primary goal here is to provide various support services to help the patients to maintain an active life and dignity. Assuming there are cost and resource limitations for delivering care within the system, where each care provider can support a limited number of patients, the problem can be defined as finding a set of suitable care providers with a minimum overall cost to match the needs of the maximum number of patients. In the grand scheme, the whole care system can be seen as a social network consisting of patients and care providers. This representation provides an opportunity to apply social network analysis techniques to enhance the topology of the system and improve its efficiency. In this paper, we propose a novel computational agent-based model to address this problem by extending the agent's capabilities using the benefits of the social network. We assume that each patient agent can cover its disabilities and perform its desired tasks through collaboration with other agents. The primary objective is to optimize a dynamic, personalized care pathway system that will support palliative care within a community eco-system. Testing the ability of the system to match social support agents with personal preferences, needs, and capabilities is the second goal of this research work. In addition, we are going to measure the impact of the system on perceived quality of life, social connectedness, caregiver burden, and care satisfaction. The performance and functionality of our proposed model have been evaluated using various synthetic and a real palliative networks. The results demonstrate a significant reduction in the operational costs and enhancement of the service quality.
BACKGROUND: Treating chronic, uncontrolled, cancer pain with subcutaneous ketamine in patients unresponsive to opioids and co-analgesics remains controversial, especially in light of recent evidence demonstrating ketamine does not have net clinical benefit in this setting.
AIM: To evaluate the cost-effectiveness of subcutaneous ketamine versus placebo in this patient population.
DESIGN AND SETTING: A within-trial cost-effectiveness analysis of the Australian Palliative Care Clinical Studies Collaborative's randomised, double-blind, placebo-controlled trial of ketamine was conducted from a healthcare provider perspective. Mean costs and outcomes were estimated from participant-level data over 5 days including positive response, health-related quality of life (HrQOL) measured with the Functional Assessment of Chronic Illness Therapy-Palliative Care (FACIT-Pal), ketamine costs, medication usage and in-patient stays.
RESULTS: There was no statistically significant difference in responder rates, but higher toxicity and worse HrQOL for ketamine participants (mean change -3.10 (standard error (SE) 1.76), ketamine n = 93; 4.53 (SE 1.38), placebo n = 92). Estimated total mean costs were AU$706 higher per ketamine participant (AU$6608) compared with placebo (AU$5902), attributable to the cost of higher in-patient costs as well as costs of ketamine administration. The results were robust to sensitivity analyses accounting for different medication use costing methods and removal of cost outliers.
CONCLUSION: The findings suggest subcutaneous ketamine in conjunction with opioids and standard adjuvant therapy is neither an effective nor cost-effective treatment for refractory pain in advanced cancer patients.