scholarly journals What works in ‘real life’ to facilitate home deaths and fewer hospital admissions for those at end of life?: results from a realist evaluation of new palliative care services in two English counties

2014 ◽  
Vol 13 (1) ◽  
Author(s):  
Lesley Wye ◽  
Gemma Lasseter ◽  
John Percival ◽  
Lorna Duncan ◽  
Bethany Simmonds ◽  
...  
2012 ◽  
Vol 30 (8) ◽  
pp. 880-887 ◽  
Author(s):  
Thomas J. Smith ◽  
Sarah Temin ◽  
Erin R. Alesi ◽  
Amy P. Abernethy ◽  
Tracy A. Balboni ◽  
...  

Purpose An American Society of Clinical Oncology (ASCO) provisional clinical opinion (PCO) offers timely clinical direction to ASCO's membership following publication or presentation of potentially practice-changing data from major studies. This PCO addresses the integration of palliative care services into standard oncology practice at the time a person is diagnosed with metastatic or advanced cancer. Clinical Context Palliative care is frequently misconstrued as synonymous with end-of-life care. Palliative care is focused on the relief of suffering, in all of its dimensions, throughout the course of a patient's illness. Although the use of hospice and other palliative care services at the end of life has increased, many patients are enrolled in hospice less than 3 weeks before their death, which limits the benefit they may gain from these services. By potentially improving quality of life (QOL), cost of care, and even survival in patients with metastatic cancer, palliative care has increasing relevance for the care of patients with cancer. Until recently, data from randomized controlled trials (RCTs) demonstrating the benefits of palliative care in patients with metastatic cancer who are also receiving standard oncology care have not been available. Recent Data Seven published RCTs form the basis of this PCO. Provisional Clinical Opinion Based on strong evidence from a phase III RCT, patients with metastatic non–small-cell lung cancer should be offered concurrent palliative care and standard oncologic care at initial diagnosis. While a survival benefit from early involvement of palliative care has not yet been demonstrated in other oncology settings, substantial evidence demonstrates that palliative care—when combined with standard cancer care or as the main focus of care—leads to better patient and caregiver outcomes. These include improvement in symptoms, QOL, and patient satisfaction, with reduced caregiver burden. Earlier involvement of palliative care also leads to more appropriate referral to and use of hospice, and reduced use of futile intensive care. While evidence clarifying optimal delivery of palliative care to improve patient outcomes is evolving, no trials to date have demonstrated harm to patients and caregivers, or excessive costs, from early involvement of palliative care. Therefore, it is the Panel's expert consensus that combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden. Strategies to optimize concurrent palliative care and standard oncology care, with evaluation of its impact on important patient and caregiver outcomes (eg, QOL, survival, health care services utilization, and costs) and on society, should be an area of intense research. NOTE. ASCO's provisional clinical opinions (PCOs) reflect expert consensus based on clinical evidence and literature available at the time they are written and are intended to assist physicians in clinical decision making and identify questions and settings for further research. Because of the rapid flow of scientific information in oncology, new evidence may have emerged since the time a PCO was submitted for publication. PCOs are not continually updated and may not reflect the most recent evidence. PCOs cannot account for individual variation among patients and cannot be considered inclusive of all proper methods of care or exclusive of other treatments. It is the responsibility of the treating physician or other health care provider, relying on independent experience and knowledge of the patient, to determine the best course of treatment for the patient. Accordingly, adherence to any PCO is voluntary, with the ultimate determination regarding its application to be made by the physician in light of each patient's individual circumstances. ASCO PCOs describe the use of procedures and therapies in clinical trials and cannot be assumed to apply to the use of these interventions in the context of clinical practice. ASCO assumes no responsibility for any injury or damage to persons or property arising out of or related to any use of ASCO's PCOs, or for any errors or omissions.


2021 ◽  
Vol 39 (28_suppl) ◽  
pp. 31-31
Author(s):  
Laura Donovan ◽  
Donna Buono ◽  
Melissa Kate Accordino ◽  
Jason Dennis Wright ◽  
Andrew B. Lassman ◽  
...  

31 Background: GBM is associated with a poor prognosis and early death in elderly patients. Prior studies have demonstrated a high burden of hospitalization in this population. We sought to evaluate and examine trends in hospitalizations and EOL care in GBM survivors. Methods: Using SEER-Medicare linked data, we performed a retrospective observational cohort study of patients aged ≥ 65 years diagnosed with GBM from 2005-2017 who lived at least 6 months from the time of diagnosis. Aggressive EOL care was defined as: chemotherapy or radiotherapy within 14 days of death (DOD), surgery within 30 DOD, > 1 emergency department visit, ≥ 1 hospitalization or intensive care unit admission within 30 DOD; in-hospital death; or hospice enrollment ≤ 3 DOD. We evaluated age, race, ethnicity, marital status, gender, socioeconomic status, comorbidities, prior treatment and percentage of time hospitalized. Multivariable logistic regression was performed to determine factors associated with aggressive end of life care. Results: Of 5827 patients, 2269 (38.9%) survived at least 6 months. Among these, 1106 (48.7%) survived 6-12 months, 558 (24.6%) survived 12-18 months, and 605 (26.7%) survived > 18 months. Patients who survived 6-12 months had the highest burden of hospitalization and spent a median of 10.6% of their remaining life in the hospital compared to those surviving 12-18 months (5.4%) and > 18 months (3%) (P < 0.001). 10.1% of the cohort had claims for palliative care services; 49.8% of initial palliative care consults occurred in the last 30 days of life. Hospice claims existed in 83% with a median length of stay 33 days (IQR 12, 79 days). 30.1% of subjects received aggressive EOL care. Receiving chemo at any time (OR 1.510, 95% CI 1.221-1.867) and spending ≥ 20% of life in the hospital after diagnosis (OR 3.331, 95% CI 2.567-4.324) were associated with aggressive EOL care. Women (OR 0.759, 95% CI 0.624-0.922), patients with higher socioeconomic status (OR 0.533, 95% CI 0.342-0.829), and those diagnosed ≥ age 80 (OR 0.723, 95% CI 0.528-0.991) were less likely to receive aggressive EOL care. Race, ethnicity, marital status, and extent of initial resection were not associated with aggressive EOL care. Conclusions: A minority of elderly patients with GBM in the SEER-Medicare database survived ≥ 6 months; hospitalizations were common and patients spent a significant proportion of their remaining life hospitalized. Although hospice utilization was high in this cohort, 30% of patients received aggressive EOL care. Despite the aggressive nature of GBM, few patients had palliative care consults during their illness. Increased utilization of palliative care services may help reduce hospitalization burden and aggressive EOL care in this population.


2011 ◽  
Vol 17 (1) ◽  
Author(s):  
John Rosenberg

The process of dying at home brings the nexus between the paternalism of conventional palliative care and a social understanding of end of life care into sharp focus. Away from institutional places of care, issues of ownership, compliance and communal responsibility are heightened. At this interface, palliative care services are confronted with the irony of relinquishing their 'ownership' of dying whilst leading communities to reclaim their principal role in the business of dying. This benign – but enduring – paternalism remains a barrier to a paradigmatic shift towards a more complete understanding of the business of dying. Whilst nascent attempts to promote community engagement in end of life issues are evident in the interface between palliative care and public health, dying remains, for the most part, the remit of health care services. In this article, I contend that the business of dying is incompletely attended. This lack of attention will be partially redressed here by considering the home as a fitting death scene.


2018 ◽  
Vol 32 (8) ◽  
pp. 1344-1352 ◽  
Author(s):  
Rossana De Palma ◽  
Daniela Fortuna ◽  
Sarah E Hegarty ◽  
Daniel Z Louis ◽  
Rita Maria Melotti ◽  
...  

Background: Multiple studies demonstrate substantial utilization of acute hospital care and, potentially excessive, intensive medical and surgical treatments at the end-of-life. Aim: To evaluate the relationship between the use of home and facility-based hospice palliative care for patients dying with cancer and service utilization at the end of life. Design: Retrospective, population-level study using administrative databases. The effect of palliative care was analyzed between coarsened exact matched cohorts and evaluated through a conditional logistic regression model. Setting/participants: The study was conducted on the cohort of 34,357 patients, resident in Emilia-Romagna Region, Italy, admitted to hospital with a diagnosis of metastatic or poor-prognosis cancer during the 6 months before death between January 2013 and December 2015. Results: Patients who received palliative care experienced significantly lower rates of all indicators of aggressive care such as hospital admission (odds ratio (OR) = 0.05, 95% confidence interval (CI): 0.04–0.06), emergency department visits (OR = 0.23, 95% CI: 0.21–0.25), intensive care unit stays (OR = 0.29, 95% CI: 0.26–0.32), major operating room procedures (OR = 0.22, 95% CI: 0.21–0.24), and lower in-hospital death (OR = 0.11, 95% CI: 0.10–0.11). This cohort had significantly higher rates of opiate prescriptions (OR = 1.27, 95% CI: 1.21–1.33) ( p < 0.01 for all comparisons). Conclusion: Use of palliative care at the end of life for cancer patients is associated with a reduction of the use of high-cost, intensive services. Future research is necessary to evaluate the impact of increasing use of palliative care services on other health outcomes. Administrative databases linked at the patient level are a useful data source for assessment of care at the end of life.


Author(s):  
David C. Currow ◽  
Stein Kaasa

Hospice and palliative care services have developed in very different ways around the world. Most have been built on the momentum of visionary clinicians and funders who have responded to perceived needs from health-care providers, patients, families, and communities rather than in response to well-formed national policies with an adequately funded planning and development phase. This chapter describes the work that is being done at pan-national, national, and sub-national levels to create effective policies that can further the key work of hospice/palliative care, often after a large number of apparently unconnected local services have been well established. The chapter highlights that there are particular challenges in forming public policy on hospice/palliative care, especially the end-of-life component, and notes the importance of ‘patients’ voices’-the voice of the community which helps to inform health policies including end-of-life care. The chapter ends by describing a variety of country-specific and World Health Organization policy documents and legislation.


2020 ◽  
pp. 147775092094661
Author(s):  
Kristine Espegren Gustad ◽  
Åsta Askjer ◽  
Per Nortvedt ◽  
Olav Magnus S Fredheim ◽  
Morten Magelssen

Background How often does refractory suffering, which is suffering due to symptoms that cannot be adequately controlled, occur at the end of life in modern palliative care? What are the causes of such refractory suffering? Should euthanasia be offered for refractory suffering at the end of life? We sought to shed light on these questions through interviews with palliative care specialists. Methods Semi-structured interviews with six nurses and six doctors working in palliative care in five Norwegian hospitals. Transcripts were analysed with systematic text condensation, a qualitative analysis framework. Results Informants find that refractory suffering is rare, and that with palliative sedation satisfactory symptom control can nearly always be achieved at the end of life. However, the process of reaching adequate symptom control can be protracted, and there can be significant suffering in the meantime. Both somatic, psychological, social and existential factors can contribute to refractory suffering and potentiate each other. However, informants also place significant weight on factors pertaining to the organization of palliative care services as contributing to insufficient symptom control. Conclusions If refractory suffering is indeed rare, then this arguably weakens a common prima facie argument for the legalization of assisted dying. However, the process of reaching adequate symptom control can be protracted and involve significant suffering. The experiences of palliative care clinicians constitute important empirical premises for the assisted dying debate. The study points to several areas in which palliative care can be improved.


2015 ◽  
Vol 33 (29_suppl) ◽  
pp. 171-171
Author(s):  
Marc Kerba ◽  
Ayn Sinnarajah ◽  
M Sarah Rose ◽  
Lynn Nicholson ◽  
Barbara Wheler ◽  
...  

171 Background: In Calgary, Alberta, the Calgary Zone Palliative Care Collaborative (CZPCC) undertook a study to examine the current state of cancer and palliative services and to recommend steps to address gaps in service delivery. We hypothesized that early access to palliative care services would reduce utilization of active cancer treatments and services for individuals nearing the end of life. Our study objectives were to determine the utilization and timing of acute, palliative and oncology-related services in Calgary. Methods: This retrospective study examined cancer registry and administrative data for patients > 18 years, who died in 2012. Measures of aggressive end of life care (EOL) were also collected. A combination of descriptive statistics, tests of association and multivariate regression analysis were conducted. Results: N = 1909 died of cancer in 2012: median age 73 years (IQR: 62-82 years) and median disease duration 364 days (IQR: 92-1114 days). 40.6% of patients received systemic treatment in last 12 months of life. 29.9% received radiotherapy and 13.0% received psychosocial/spiritual care. Palliative care contact was 80.7%, inclusive of 20.6% who had an intensive palliative care unit admission. 5.2% had EOL chemotherapy and 3.8% received EOL radiotherapy. Up to 10.4% of patients had one or more hospital admission. There was no significant effect of age on those who received aggressive EOL care. Men had an increased probability to receive aggressive EOL care (p = 0.015). Tumor group was also associated with receiving aggressive EOL (p < 0.001), with the highest utilization in Head and Neck and hematological malignancies. In patients with a disease duration of > 4 months those who received palliative care at least 2-3 months prior to death were less likely to receive aggressive EOL care (P < 0.001). Patients whose disease duration was < 1 month were less likely to receive aggressive EOL care if they received palliative care services (p = 0.02). Conclusions: The provision of palliative care services at the end of life is most needed among men and certain tumor groups who are the highest users of aggressive EOL care.


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