Cet atlas présente les ressources pays par pays en matière de soins palliatifs : services pour adultes ou enfants, lits dédiés, composition et nombre d'équipes, tendance et objectifs des politiques nationales de santé des pays.
This dissertation explores the existing barriers for early integration of palliative home care in oncology care and the differences between early and late involvement of palliative home care. Furthermore, an intervention model for early integration of palliative home care in oncology care is developed following the steps of the Medical Research Council Framework. This model is then tested in a pilot pre post study on its feasibility and wacceptability.
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Aggressive resource utilization for patients with cancer at the end of life has been associated with poor outcomes for patients and their families. To our knowledge, no previous studies have characterized resource utilization as a proxy for quality end-of-life care in hospitalized patients awaiting discharge to hospice by physician and advanced practice providers (APPs). We conducted a retrospective cohort study to examine resource utilization and the quality metrics for end-of-life care in patients at Memorial Sloan Kettering Cancer Center from the date of hospice decision to discharge. Patients under the care of APP teams were less likely to receive laboratory testing (50% vs 59%, P = .046) and received fewer tests than those with house staff teams, though performance on end-of-life quality metrics was similar. Our findings suggest APPs may improve quality of end-of-life care by avoiding unnecessary or aggressive measures compared to house staff.
OBJECTIVE: Hospice at Home (HAH) services aim to enable patients to be cared for and die at home, if that is their choice and achieve a 'good death'. A national survey, in 2017, aimed to describe and compare the features of HAH services and understand key enablers to service provision.
METHODS: Service managers of adult HAH services in the 'Hospice UK' and National Association for Hospice at Home directories within England were invited to participate. Information on service configuration, referral, staffing, finance, care provision and enablers to service provision were collected by telephone interview.
RESULTS: Of 128 services invited, 70 (54.7%) provided data. Great diversity was found. Most services operated in mixed urban/rural (74.3%) and mixed deprivation (77.1%) areas and provided hands-on care (97.1%), symptom assessment and management (91.4%), psychosocial support (94.3%) and respite care (74.3%). Rapid response (within 4 hours) was available in 65.7%; hands-on care 24 hours a day in 52.2%. Charity donations were the main source of funding for 71.2%. Key enablers for service provision included working with local services (eg, district nursing, general practitioner services), integrated health records, funding and anticipatory care planning. Access to timely medication and equipment was critical.
CONCLUSION: There is considerable variation in HAH services in England. Due to this variation it was not possible to categorise services into delivery types. Services work to supplement local care using a flexible approach benefitting from integration and funding. Further work defining service features related to patient and/or carer outcomes would support future service development.
Background: Hospice care is designed for persons in the final phase of a terminal illness. However, hospice care is not used appropriately. Some persons who do not meet the hospice eligibility receive hospice care, while many persons who may have benefitted from hospice care do not receive it. This study aimed to examine the characteristics of, and one-year survivorship among, residents who received hospice care versus those who did not in long-term care facilities (LTCFs) in Canada.
Methods: This retrospective cohort study used linked health administrative data from the Canadian Continuing Reporting System (CCRS) and the Discharge Abstract Database (DAD). All persons who resided in a LTCF and who had a Resident Assessment Instrument Minimum Data Set Version 2.0 (RAI-MDS 2.0) assessment in the CCRS database between Jan. 1st, 2015 and Dec 31st, 2015 were included in this study (N = 185,715). Death records were linked up to Dec 31th, 2016. Univariate, bivariate and multivariate analyses were performed.
Results: The reported hospice care rate in LTCFs is critically low (less than 3%), despite one in five residents dying within 3 months of the assessment. Residents who received hospice care and died within 1 year were found to have more severe and complex health conditions than other residents. Compared to those who did not receive hospice care but died within 1 year, residents who received hospice care and were alive 1 year following the assessment were younger (a mean age of 79.4 [+ 13.5] years vs. 86.5 [+ 9.2] years), more likely to live in an urban LTCF (93.2% vs. 82.6%), had a higher percentage of having a diagnosis of cancer (50.7% vs. 12.9%), had a lower percentage of having a diagnosis of dementia (30.2% vs. 54.5%), and exhibited more severe acute clinical conditions.
Conclusions: The actual use of hospice care among LTCF residents is very poor in Canada. Several factors emerged as potential barriers to hospice use in the LTCF population including ageism, rurality, and a diagnosis of dementia. Improved understanding of hospice use and one-year survivorship may help LTCFs administrators, hospice care providers, and policy makers to improve hospice accessibility in this target group.
INTRODUCTION: To study the characteristics and health care utilization of men with prostate cancer (PCa) during their last year and last month of life, as these data have been rarely reported to date.
SUBJECTS AND METHOD: Men covered by the national health Insurance general scheme (77% of the French population) treated for PCa (2014-2015), who died in 2015 were identified in the national health data system, including reimbursed hospital and outpatient care, and their causes of death.
RESULTS: A total of 11,193 men (mean age: 81 years, SD: 9.6) were included. Almost 58% of these men died in a short-stay hospital (SSH), 4% died in hospital-at-home, 9% died in Rehab, 9% died in skilled nursing homes and 21% died at home. During the last year of life, almost all men were hospitalised at least once in SSH and 47% received hospital palliative care (HPC), immediately prior to death in 8% of cases. During the last month of life, 76% of men were hospitalised at least once in SSH, 43% attended an emergency department and 14% were admitted to intensive care, 7% received a chemotherapy session, and 24% received an antineoplastic agent dispensed by a retail pharmacy. Cancer was the main cause of death for 63% of men, corresponding to PCa in 40% of cases, and cardiovascular disease was the main cause of death for 13% of men with marked variations according to age, place of death, and use of HPC. The mean cost reimbursed per man during the last year of life was €38,750 (€48,601 including HPC).
CONCLUSIONS: In France, end-of-life management of men with PCa, regardless of the cause of death, is centered on SSH and HPC, essentially at the time of death. Certain indicators of end-of-life management were particular high.
LEVEL OF EVIDENCE: 4.
BACKGROUND: People experiencing homelessness have significantly shorter life expectancies and higher rates of morbidity and mortality than the general population. Many barriers have been identified to providing palliative care to this population. This study examines health and social service providers' experiences providing end-of-life care to people experiencing homelessness, seeking recommendations to improve both patient and provider experience.
METHODS: Qualitative study using phenomenological approach. Qualitative and quantitative surveys with 136 health and social service providers in Ontario's South East Local Health Integration Network, in-depth interview with 10 key informants.
FINDINGS: Participants approached the end-of-life care of people experiencing homelessness from a framework of dignity and respect. Themes included barriers to end-of-life care internal to the health care system; care avoidance; the experience of stigma for this population when accessing end-of-life care; lack of provider information and awareness on how to provide care for marginalized groups, how to provide care in the context of substance use, and how to assist clients in accessing the formal palliative care system; and the need for harm reduction approaches to end-of-life care for persons experiencing homelessness.
DISCUSSION: Focusing on harm reduction, and using the framework of Equity-Oriented Health Care to make systemic, cultural, and policy changes to develop a palliative-care system for persons experiencing homelessness may improve care experience for both patients and providers.
Objective: To systematically capture patient- and family-centered data to understand variability and opportunities in end-of-life care delivery across settings in an integrated health care delivery system.
Background: Improving the quality of end-of-life care requires assessing patient and family experiences across settings where care occurs, but we found no existing instrument suitable for this purpose.
Methods: We conducted a cross-sectional survey with 10,308 surviving respondents (usually next of kin) of decedents in five Kaiser Permanente operating regions. The survey included eight items from an existing validated survey and three original items.
Results: The overall response rate was 26% (2631). Most respondents reported that they were knowledgeable about decedents' end-of-life care and preferences. Across regions, 80% of respondents reported overall end-of-life care as excellent or very good. The proportion of excellent and very good responses was 74–84% across regions for items assessing attributes of end-of-life care, with statistically significant differences (p < 0.05). The proportion of positive responses was 69–89%. Overall, end-of-life care was rated as excellent or very good for a greater proportion of patients who received palliative care, hospice care, or both (78–82%), compared to those who did not (69%, p < 0.05 for all).
Discussion: Regions are using data to inform end-of-life care initiatives. Assessing patient and family experiences of end-of-life care across settings with a single survey was feasible and provided valuable information supporting quality improvement. The survey met our need for a general purpose survey on end-of-life care experience.
Background: Liberia faces a critical shortage of palliative care services, particularly for persons with advanced-stage HIV/AIDS, tuberculosis, diabetes, and cancers. Access to healthcare services is especially limited in rural areas, along with a lack of supportive social and economic resources. Home of Dignity (HoD) Health Center was established in 2013 in Yarbah's Town to fill a last-option palliative care gap. The mission emphasizes patient wellbeing and worth. HoD integrates health, agriculture, and education on-site for immediate medical needs, broader sustainable development, and reducing disease-associated stigma in local communities.
Objective: We aimed to describe the Center's integrated approach and conduct a descriptive analysis of the HoD patient population.
Methods: We reviewed patient characteristics (sex, age distribution, mobility status, and CD4 count on arrival) and outcomes (survival rate and community reintegration) for patients with HIV seeking care at the Center between 2013-2017.
Findings: Of 182 patients (ages 3 months-50 years), over half arrived to the facility bedridden and over 82% had CD4 counts between <100-350. Of the 182 patients, 66% survived, 27% died, and 7% were lost to follow-up. Of surviving patients, 90% were successfully reintegrated into their communities. The clinic also served over 365 chronically ill patients that had been rejected by other health providers during the 2014-2015 Ebola outbreak.
Conclusions: The Center is providing last-option palliative care services in the country. As a trusted healthcare center, patients also seek care for acute conditions, resulting in unanticipated resource demands. HoD's experience underscores the need for development of training programs for medical professionals, supply chains, community outreach, and resourcing channels to ensure adequate and sustainable service provision for hospice and palliative care services and reduce stigma in the country. There is an urgent need to invest in holistic palliative and overall healthcare services in Liberia.
Importance: Although advance care planning is known to increase patient and caregiver satisfaction, its association with health care utilization is not well understood.
Objective: To examine the association between billed advance care planning encounters and subsequent health care utilization among seriously ill patients.
Design, Setting, and Participants: This retrospective cohort study conducted from October 1, 2015, to May 31, 2018, used a national commercial insurance claims database to retrieve data from 18 484 Medicare Advantage members 65 years or older who had a claim that contained a serious illness diagnosis.
Exposure: A claim that contained an advance care planning billing code between October 1, 2016, and November 30, 2017.
Main Outcomes and Measures: Receipt of intensive therapies, hospitalization, emergency department use, hospice use, costs, and death during the 6-month follow-up period.
Results: The final study sample included 18 484 seriously ill patients (mean [SD] age, 79.7 [7.9] years; 10 033 [54.3%] female), 864 (4.7%) of whom had a billed advanced care planning encounter between October 1, 2016, and November 30, 2017. In analyses adjusted for patient characteristics and a propensity score for advance care planning, the presence of a billed advance care planning encounter was associated with a higher likelihood of hospice enrollment (incidence rate ratio [IRR], 2.52; 95% CI, 2.22-2.86) and mortality (hazard ratio, 2.27; 95% CI, 1.79-2.88) compared with no billed advance care planning encounter. Although patients with billed advance care planning encounters were also more likely to be hospitalized (IRR, 1.37; 95% CI, 1.26-1.49), including in the intensive care unit (IRR, 1.25; 95% CI, 1.08-1.45), they were less likely to receive any intensive therapies (IRR, 0.85; 95% CI, 0.78-0.92), such as chemotherapy (IRR, 0.65; 95% CI, 0.55-0.78). Similar results were observed in a propensity score–matched analysis (99% matched) and in a decedent analysis of patients who died during the 6-month follow-up period.
Conclusions and Relevance: Patients with billed advance care planning encounters were more likely than those without these encounters to receive hospice services and less likely to receive any intensive therapies, such as chemotherapy. However, they were also hospitalized more frequently than patients without billed advance care planning encounters. Although these findings were robust to multiple analytic methods, the results may be attributable to residual confounding because of a higher unmeasured severity of illness in the advance care planning group. Additional evidence appears to be needed to understand the effect of advance care planning on these outcomes.
This guideline covers organising and delivering end of life care services, which provide care and support in the final weeks and months of life (or for some conditions, years), and the planning and preparation for this. It aims to ensure that people have access to the care that they want and need in all care settings. It also includes advice on services for carers.
Heart failure (HF) is a progressive condition with high mortality and heavy symptom burden. Despite guideline recommendations, cardiologists refer to palliative care at rates much lower than other specialties and very late in the course of the disease, often in the final 3 days of life. One reason for delayed referral is that prognostication is challenging in patients with HF, making it unclear when and how the limited resources of specialist palliative care will be most beneficial. It might be more prudent to consider palliative care referrals at critical moments in the trajectory of patients with HF. These include: a) the development of poor prognostic signs in the outpatient setting; b) hospitalization or intensive care unit admission, and c) at the time of evaluation for certain procedures, such as left ventricular assist device placement and ablation for refractory ventricular arrhythmias, among others. In this review, we also summarize the results of clinical trials evaluating palliative interventions in these settings.
Palliative care (PC) improves the quality of life of patients with diseases such as cancer, and several studies have shown a reduction in costs among patients who use PC services when compared with those receiving standard oncological treatments. Most studies on PC costs are carried out in high-income countries. There is a lack of these types of studies in middle-income and low-income countries and of better evidence about this intervention.
OBJECTIVE: To describe resource utilisation and costs among patients with cancer in a Brazilian quaternary hospital by cancer localisation and per month of treatment before death.
METHODS: This study is a description of retrospective costs to estimate the costs of formal healthcare sector associated with PCs, from the perspective of a public quaternary cancer hospital. Unit costs were estimated using microcosting and macrocosting approaches.
SETTING/PARTICIPANTS: Patients older than 18 years old who died from 2010 to 2013 and who had at least two visits in PC and/or made use of hospice care.
RESULTS: Among the 2985 patients included in the study, the average cost per patient was US$12 335, ranging from US$8269 for patients with pancreatic cancer to US$19 395 for patients with brain cancer. The main costing item was hospital admission (47.6% of the total cost), followed by hospice care (29.5%) and medical and other supplies (11.1%).
CONCLUSIONS: The study clarified the direct medical costs and the profile and use of resources of patients with cancer who need PC, and can help in the planning and allocation of resources in cancer care.
BACKGROUND: From 2014 to 2017, the Palliative Medicine Working Group developed and published best practice recommendations for the integration of palliative care in Comprehensive Cancer Centers (CCCs) in Germany. To evaluate the implementation level of these recommendations in the CCCs an online survey was performed. Based on the results of this study, strategic tandem partnerships between CCCs should be built in order to foster further local development.
MATERIALS AND METHODS: Directors of all CCCs were contacted by e-mail between December 2017 and February 2018. At the time of the survey, 15 CCCs were funded by the German Cancer Aid. The level of implementation of the recommendations in individual CCCs was established using a transtheoretical model.
RESULTS: Between December 2017 and February 2018, all 15 contacted directors or their representatives of the CCCs took part in the survey. More than two thirds of the CCCs have a palliative service as well as a day clinic and palliative outpatient clinic. Regional networking and the provision of a palliative care unit were approved by all CCCs.
CONCLUSION: The publication of best practice recommendations was a milestone for the integration of palliative care in the CCCs. The majority of the German CCCs already fulfill essential organizational and structural requirements. There is a particular need for optimization in the provision of a basic qualification for general palliative care and emergency admission personnel.
IMPLICATIONS FOR PRACTICE: In 2017, the Palliative Medicine Working Group in the network of the German Comprehensive Cancer Centers (CCCs) published the best practice recommendations it had developed for the integration of palliative medicine in CCCs in Germany. In order to evaluate the level of implementation of the recommendations, an online survey of the CCC directors was established. The majority of German CCCs fulfil elementary organizational and structural requirements. However, there is still room for improvement in the provision of a basic qualification for general palliative care and emergency admission personnel.
BACKGROUND: ALS is an incurable neurodegenerative disorder, with the recommendation that symptom management and palliative care start immediately or soon after diagnosis. However, little is known about healthcare utilization at the end of life in this patient group.
AIM: To describe healthcare utilization at the end of life in patients who died from ALS.
DESIGN: We performed a retrospective cohort study using population-level administrative databases. The description of healthcare utilization was based on (1) validated quality indicators for end-of-life care, and (2) the European Federation of Neurological Societies guidelines on the clinical management of ALS.
SETTING: We included all people who died from ALS in Belgium between 2010 and 2015 (using ICD-10 code G12.2).
RESULTS: 1636 people died from ALS in Belgium between 2010 and 2015. The mean age at death was 71 years (SD11.3), and 56% were men. Specialized palliative care was used by 44% at some point in the last two years of life. In the last month of life, 13% received tube feeding, 48% received diagnostic testing, 41% were admitted to a hospital, and 25% were admitted to an emergency department. Medications were used mainly to treat pain (43%), insomnia and fatigue (33%) and thrombosis (32%); 39% used riluzole. Non-invasive ventilation was used by 18%. 39% died at home.
CONCLUSION: Administrative data provide a valuable source to describe healthcare utilization in small populations such as ALS, but more clinical evidence is needed on the advantages and disadvantages initiating or terminating treatments at the end of life.
This article is an analysis of the relationship between US hospice structure and the feeling of being a burden to others (FBO). A goal of US hospice care is to reduce the FBO. But in America, hospice is limited in its ability to do so because of the high caregiver burden it places on family members of dying people. Through a historical study, I show that this burden was excessive when the hospice system was created and has worsened over time. Through three ethnographic vignettes, I demonstrate how this burden inculcates in dying people the FBO. I then examine the bioethical implications of this finding for the existing US debate about physician-assisted suicide (PAS). The presence of FBO due to insufficient hospice care supports arguments made by PAS opponents about the social pressure placed on dying people. This finding is not itself sufficient to resolve the "right to die" debate. But it provides the ground for a compromise, across the debate, to reduce the FBO by changing US hospice structure. The resulting consensus will further the goals of both PAS proponents and opponents.
PURPOSE OF REVIEW: The concept of palliative care is becoming increasingly important in the management of glioma patients. However, the right time for implementation, as well as the individual degree of integration of palliative care aspects, are still a matter of debate. This review updates recent evidence of palliative care in glioma and raises questions for future developments.
RECENT FINDINGS: According to the disease-specific aspects of palliative care in glioma management, there is an increasing need for a specialized 'neurooncological' palliative care approach.The implementation of palliative care for glioma patients and caregivers avoids unnecessary hospitalization and reduces health-related costs. Moreover, palliative care may be offered in different settings (inpatient/outpatient) according to local health structures, but definitely improves the QOL of glioma patients and their caregivers.
SUMMARY: There are considerable differences between countries with respect to palliative care in glioma. Major aspects of good-quality care throughout the countries are optimized symptom control, support for patients and proxies by an interdisciplinary team and to provide realistic information to patients and caregivers. The availability of neurooncological palliative teams and multidisciplinary support programs increases well being of glioma patients and caregivers as well as releases pressure on healthcare systems.
OBJECTIVES: As ICUs are increasingly a site of end-of-life care, many have adopted end-of-life care resources. We sought to determine the association of such resources with outcomes of ICU patients.
DESIGN: Retrospective cohort study.
SETTING: Pennsylvania ICUs.
PATIENTS: Medicare fee-for-service beneficiaries.
INTERVENTIONS: Availability of any of one hospital-based resource ( palliative care consultants) or four ICU-based resources ( protocol for withdrawal of life-sustaining therapy, triggers for automated palliative care consultation, protocol for family meetings, and palliative care clinicians embedded in ICU rounds).
MEASUREMENTS AND MAIN RESULTS: In mixed-effects regression analyses, admission to a hospital with end-of-life resources was not associated with mortality, length of stay, or treatment intensity (mechanical ventilation, hemodialysis, tracheostomy, gastrostomy, artificial nutrition, or cardiopulmonary resuscitation); however, it was associated with a higher likelihood of discharge to hospice (odds ratio, 1.58; 95% CI, 1.11-2.24), an effect that was driven by ICU-based resources (odds ratio, 1.37; 95% CI, 1.04-1.81) rather than hospital-based resources (odds ratio, 1.19; 95% CI, 0.83-1.71). Instrumental variable analysis using differential distance (defined as the additional travel distance beyond the hospital closest to a patient's home needed to reach a hospital with end-of-life resources) demonstrated that among those for whom differential distance would influence receipt of end-of-life resources, admission to a hospital with such resources was not associated with any outcome.
CONCLUSIONS: ICU-based end-of-life care resources do not appear to change mortality but are associated with increased hospice utilization. Given that this finding was not confirmed by the instrumental variable analysis, future studies should attempt to verify this finding, and identify specific resources or processes of care that impact the care of ICU patients at the end of life.
Palliative care in oncology is an interdisciplinary approach, centered on patients and their families, carried out along the course of neoplastic diseases, based on symptom control, assertive communication and shared decision-making. Although clinical guidelines recommend a holistic intervention, early integration of palliative care into traditional oncological treatment, research shows a great delay in referral of patients, restricting palliative care to end-of-life care. Why does there seem to be a rationing of the early referral, sometimes in violation of human dignity? To a large extent it has to do with lack of knowledge, training and education of health professionals about palliative care and the techniques to deal with the process of death and dying. Several studies have demonstrated the benefit of integrating palliative actions into the routine of active cancer treatments, not only in terms of effective control of physical and psychological symptoms, but also in terms of overall quality of life, patient and family satisfaction, health care costs and survival in some cases. It is necessary to take measures that encourage oncologists to obtain further training in palliative care, as a formal, compulsory internship, integrated in their specific training program. This way, a new generation of physicians will surely change the lives of cancer patients, and their families, integrating - without disproportionate rationing - oncology and palliative medicine.
Specialist Palliative Care aims to effectively support the quality of life of patients and those close to them through progressive, life-limiting disease. Quality of life, an individual concept, requires a personalized approach to support and maintain it. Primarily achieved through the management of symptoms, both physical and psychological, alongside social and spiritual support, this approach is of the utmost importance to patients with advanced malignancy. Several randomized, controlled trials suggest earlier provision of specialist palliative care may increase quality of life, improve symptoms and facilitate considered end of life care planning. This appears beneficial; however, evidence is mixed about the effectiveness of early specialist palliative care and its potential benefits. Results, therefore, should be interpreted with caution. In reviewing the literature, it is clear that implementing early specialist palliative care is fraught with obstacles and requires increased resources and funding. Until the benefits and cost implications for such provision are better understood, it will not be accessible to all that may have potential to benefit.