The aim of the study is to analyze individual legal problems of the implementation of the human right to palliative care. To achieve this goal, statistical data on the number of palliative patients, their access to medical services were analyzed. The absence of reasons for limiting the patient's right to receive palliative care, as such a right is a fundamental human right, is substantiated. An analysis of the understanding of the legal construction of "palliative care" in the scientific literature, national and international legal documents was carried out. It was revealed that the terms "hospice care", "end-of-life-care", "respite care" are components of a precise definition - "palliative care". Two groups of subjects that ensure the human right to this type of medical care are identified, their powers are indicated. In the course of the research it was established that palliative patients, more often than other patients, need medical care, including children. This category of patients faces the following problems: incomplete providing of high-quality free medical palliative care; insufficient number of palliative and hospice departments for such patients; palliative care does not meet international standards (logistical support for palliative departments, there are no specialists of a multidisciplinary team); there is no special training for medical personnel working with incurable patients; painkillers (non-narcotic and narcotic) drugs for relieving pain syndrome of such patients are not provided in full volume; there is no cooperation of state authorities in the field of palliative care with public and charitable organizations; palliative patients do not have access to free legal services (pensions, inheritance).
As part of the health care reforms and transformation project of the Vision 2030, a group of expert healthcare professionals was tasked with the development of a model of care for patients with life-shortening illnesses in Saudi Arabia. This Care Design Group (CDG 1-3) held a series of workshops and conducted surveys and online discussions to systematically document and develop a model of care. These interventions were aimed at achieving a national standard of care. This short article is a description of this very successful process of development.
Gastric cancer (GC) is a public health issue with high incidence and mortality in Colombia due to tardy diagnosis and barriers to access to curative treatment; this leaves palliative care (PC) as the only option. Our aim is to describe the access barriers to PC perceived by adults with GC, caregivers and physician in Santander, Colombia. A qualitative study was carried out with the analysis of the grounded theory (Strauss and Corbin), through semi-structured interviews, after sampling for convenience we found that the access barriers were: administrative, economic, cultural, knowledge, communication, institutional and geographical; strategies to overcome barriers: screening programs, governmental surveillance, and investment in health. In conclusion, access to PC requires remove barriers to timely and integral access and strengthen health and education policies to facilitate procedures and services that ensure the attention required by the adult with GC.
CONTEXT: International consensus on indicators is necessary to standardize the global assessment of palliative care (PC) development.
OBJECTIVES: To identify the best indicators to assess current national-level PC development.
METHODS: Experts in PC development were invited to rate 45 indicators organized by domains of the WHO Public Health Strategy in a two-round RAND/UCLA modified Delphi process. In the first round, experts rated indicators by relevance, measurability, and feasibility (1-9). Ratings were used to calculate a Global-Score (1-9). Indicators scoring >7 proceeded to the second round for fine-tuning of Global-Scores. Median, Confidence Interval (CI), Content Validity Index (I-CVI), and Disagreement Index were calculated. Indicators scoring a lower limit 95% CI 7 and an I-CVI 0·30 were selected.
RESULTS: Twenty-four experts representing five continents and several organizations, completed the study. Twenty-five indicators showed a high content validity and level of agreement. Policy indicators (n=8) included the existence of designated staff in the national Ministry of Health, the inclusion of PC services in the basic health package and in the primary care level list of services. Education indicators (n=4) focused on processes of official specialization for physicians, inclusion of teaching at the undergraduate level, and PC professorship. Use of medicines indicators (n=4) consisted of opioid consumption, availability and prescription requirements. Services indicators (n=6) included number and type of services for adults and children. Additional indicators for professional activity (n=3) were identified.
CONCLUSION: The first list including 25 of the best indicators to evaluate PC development at a national-level has been identified.
OBJECTIVES: We examined public reaction to the proposed Center for Medicare and Medicaid Services rule reimbursing physicians for advanced care planning (ACP) discussions with patients.
METHODS: Public comments made on regulations.gov were reviewed for relevance to ACP policy and their perceived position on ACP (ie, positive, negative and neutral). Descriptive statistics were used to quantify the results.
RESULTS: A total of 2225 comments were submitted to regulations.gov. On review, 69.0% were categorised as irrelevant; among relevant comments (n=689), 81.1% were positive, 18.6% were negative and 0.002% were neutral. Individuals submitted a greater percentage of the total comments as compared to organisations (63.5% and 36.5%, respectively).
CONCLUSIONS: The US Medicare programme is a tax financed social insurance programme that covers all patients 65 years of age and older, including 8 in 10 decedents annually, and it is the part of the US healthcare system most similar to the rest of world. There has been a trend globally towards recognising the importance of aligning patient preferences with care options, including palliative care to deal with advanced life limiting illness. However, ACP is not widely used in the USA, potentially reducing the use of palliative care. Reimbursing ACP discussions between physicians, patients and their family has the potential to have a large impact on the quality of life of persons near death, which can greatly impact public health and the comfort in dealing with our ultimate demise.
To implement the National End of Life Care strategy and enable more people to express and achieve their preferences about care at the end of life, senior clinicians outside palliative medicine need to make it a routine part of their practice. However, it is acknowledged that recognising that people are entering the last phase of their illness is not always straightforward, and having conversations about aims of treatment and planning for future care may not be easy. In order to begin to address these challenges, funding was sought from the Yorkshire and the Humber Strategic Health Authority (SHA), and subsequently Health Education England, Yorkshire and the Humber (HEEYH), to pilot a development programme in 2 acute trusts. 2 palliative medicine consultants shared the trainer role at each site, supporting hospital consultants from a range of specialties, with a GP to give a community perspective. The programme involved individual clinicians identifying their own learning needs and specific issues for end-of-life care in their patients. The group met together monthly in action learning sets to discuss issues in a safe yet challenging environment. Following evaluation using a combination of training needs analyses, feedback questionnaires, audits and service evaluations, it was modified slightly and repiloted in 2 further trusts as 'Rethinking Priorities'. This paper describes the programme and its outcomes, especially in relation to participants' learning, service development and leadership. It also highlights the challenges, including different learning styles, the concept of action learning, obtaining funding and dedicated time, and how to evaluate the effectiveness of a programme. Overall, it suggests that an educational initiative based on clinicians identifying their own learning needs, and using an action learning approach to explore issues with other colleagues, with the addition of some targeted sessions, can result in positive change in knowledge, behaviour and clinical practice.
Specialized palliative care teams improve outcomes for the steadily growing population of people living with serious illness. However, few studies have examined whether the specialty palliative care workforce can meet the growing demand for its services. We used 2018 clinician survey data to model risk factors associated with palliative care clinicians leaving the field early, and we then projected physician numbers from 2019 to 2059 under four scenarios. Our modeling revealed an impending "workforce valley," with declining physician numbers that will not recover to the current level until 2045, absent policy change. However, sustained growth in the number of fellowship positions over ten years could reverse the worsening workforce shortage. There is an immediate need for policies that support high-value, team-based palliative care through expansion in all segments of the specialty palliative care workforce, combined with payment reform to encourage the deployment of sustainable teams.
Palliative care is an essential aspect of care for patients with serious illness and their families, but a large proportion of the world’s population, particularly in developing countries like Botswana, do not have access to it. In Botswana and other developing countries, palliative care is often sporadic and lacks comprehensive delivery owing to a lag between policies and practice and a lack of knowledge about palliative care among health care professionals and communities. In this article, the progress of palliative care in Botswana is discussed by first evaluating at the relevance of palliative care in Botswana given the burden of diseases and resources available for disease management. Second, the palliative care delivery models and their successes and shortcomings in Botswana context are discussed. Third, the Botswana palliative care services are viewed on a global scale to illuminate progress and areas that need improvement. Thereafter, using a case as a reference, this article highlights the challenges faced by Botswana palliative care services. Finally, some areas that can be targeted to improve palliative care services in Botswana and possible solutions are discussed. Overall, palliative care is at infancy stage in Botswana and many opportunities exist in education, research, and resource support to transform it into a full-fledged service.
OBJECTIVE: Hospital use increases in the last 3 months of life. We aimed to examine its association with where people live and its variation across a large health jurisdiction.
METHODS: We studied a number of emergency department presentations and days spent in hospital, and in-hospital deaths among decedents who were hospitalized within 30 days of death across 153 areas in New South Wales (NSW), Australia, during 2010-2015.
RESULTS: Decedents' demographics and health status were associated with hospital use. Primary care and aged care supply had no or minimal influence, as opposed to the varying effects of areal factors-socioeconomic status, remoteness, and distance to hospital last admitted. Overall, there was an approximate 20% difference in hospital use by decedents across areas. In all, 18% to 57% of areas had hospital use that differed from the average.
DISCUSSION: The observed disparity can inform targeted local efforts to strengthen the use of community care services and reduce the burden of end-of-life care on hospitals.
Background: Delivery of health services in the province of Ontario is organized into 14 Local Health Integration Networks (LHINs), and further into 76 LHIN subregions, making these a natural unit of comparing the regional differences in palliative care receipt among decedents who were identified as having palliative care needs.
Objective: To assess the presence and magnitude of the remaining regional variation in palliative care receipt in Ontario after accounting for demographic and socioeconomic differences between the LHIN subregions, and therefore to assess whether the standardized proportion of palliative care receipt as a performance indicator can capture potential performance-related issues.
Design: A retrospective cohort study based on Ontario administrative data sources.
Setting/Subjects: Ontario residents who died between April 1, 2015 and March 31, 2016 and were identified as having palliative care needs.
Measurements: Date of death, diagnostic codes used for determining palliative care needs, and services receipt in last year of life were identified from multiple administrative databases. Demographic and socioeconomic information were derived from linking decedents' postal codes to Statistics Canada Census data and Ontario Marginalization Index.
Results: Statistically significant variation ranging from 63% to 75% in palliative care receipt exists between Ontario subregions even after accounting for demographic and socioeconomic differences, including age, sex, rurality, income quintile, and the four dimensions of the Ontario Marginalization Index.
Conclusions: Annual directly standardized proportion of palliative care receipt can be used as a performance indicator to detect regional differences in service receipt while adjusting for regional differences in the characteristics of the decedent populations. The factors to be adjusted for can be chosen based on the comparison of interest.
Leading medical authorities advocate for routine integration of palliative care for all major causes of death in the United States. With rapid growth and acceptance, the field of palliative care is tasked with addressing a compelling question of its time: "Who will deliver timely, evidence-based palliative care to all who should benefit?" The current number of palliative care specialists will not suffice to meet the needs of persons with serious illness. In 2010, initial estimates quantified the shortage at 6000 to 18 000 additional palliative care physicians needed to fully staff existing programs. Unfortunately, the predicted number of specialty physicians in 2030 will likely not be larger than the workforce in existence today. These findings result in a physician-to-serious-illness-person ratio of about 1:28 000 in 2030.1 To address the workforce shortage, stronger alignment is needed between intensity of patient needs and provision of palliative care services. Such an alignment better harnesses the talents of those in a position to deliver core palliative care services (such as discussing goals of care with patients or managing their symptoms) while engaging palliative care specialists to address more complex issues. We introduce the concept of "Palliative Care Champions," who sit at the nexus between specialty palliative care and the larger clinical workforce. Acknowledging that the needs of most patients can be met by clinicians who have received basic palliative care training, and that specialty palliative care is not always available for those with more complex needs, there exists an important opportunity for those with additional interest to scale training and quality improvement to fill this void.
La société française réduit de façon binaire « pour ou contre l’euthanasie » la complexité de l’abord des questions de fin de vie. Malgré les lois, les avis du CCNE, la question demeure identique même si elle se déplace de l’abord direct du geste à sa signification cachée. Au lieu de s’intéresser à la formation des soignants, aux questions de l’accompagnement, à la place des soins palliatifs, les positions politiques se figent et se clivent sur des situations emblématiques, même si elles demeurent exceptionnelles.
L’ensemble des vécus et des pratiques regroupés sous l’expression générique de « fin de vie » ne doit pas seulement être conçu et traité comme un problème médical, ou bien économique, ou encore psychologique. Il doit également être conçu comme une question politique, c’est-à-dire comme une question qui concerne les responsabilités de l’État et touche directement le gouvernement des hommes. C’est cette question politique, recouverte d’un côté par la technoscience médicale et de l’autre par l’idéologie des choix personnels, qui doit être remise à la place qui lui revient, c’est-à-dire au premier plan.
BACKGROUND: Palliative care guidelines and quality measures have been developed in many countries to improve the quality of care. The challenge is to implement quality measures nationally to improve quality of care across all settings.
OBJECTIVE: This article describes the development and implementation of National Guidelines for Palliative Care (NGPC) in Singapore.
DESIGN: The NGPC was developed through literature review, multidisciplinary inputs, and modified RAND Delphi method. Quality measures for the guidelines were developed through literature review and multidisciplinary inputs and implemented with an audit of specialist palliative care providers.
RESULTS: The NGPC consisted of 13 guidelines and 64 quality measures. A total of 11 palliative care services (73.3%) participated in the audit from September 2015 to October 2015. National-level and service-level gaps in quality of care were identified and individual providers identified priority areas for improvement.
CONCLUSION: We successfully developed the national palliative care guidelines and quality measures. We implemented voluntary self-assessment among health care institutions in various settings nationally that serve to catalyze quality improvement and cultivate a culture of quality improvement.
BACKGROUND: New population health community-based models of palliative care can result in more compassionate, affordable, and sustainable high-quality care.
OBJECTIVES: We evaluated utilization and cost outcomes of a standardized, population health community-based palliative care program provided by nurses and social workers.
DESIGN: We conducted a retrospective propensity-adjusted study to quantify cost savings and resource utilization associated with a community-based palliative care program. We analyzed claims data from a Medicare Advantage (MA) plan and used a proprietary predictive model to identify 804 members at high risk for overmedicalized end-of-life care. We enrolled 204 members in the palliative care program and compared them with 600 who received standard, telephonic, health plan case management. We excluded members with fewer than two months of enrolled experience or those with insufficient data for analysis, leaving 176 members in the study group and 570 in the control group for evaluation. We compared differences in utilization and costs (medical and pharmacy), hospital admissions, bed days (acute and intensive care unit [ICU]), and emergency department visits.
SETTING/SUBJECTS: A 30,000-member MA plan and a health system in Central Ohio between October 2015 and June 2016.
RESULTS: Members who received community-based palliative care showed a statistically significant 20% reduction in total medical costs ($619 per enrolled member per month), 38% reduction in ICU admissions, 33% reduction in hospital admissions, and 12% reduction in hospital days.
CONCLUSION: A structured nurse and social work model of community-based palliative care using a predictive model to identify MA candidates for intervention can reduce utilization and medical costs.
In 2011, the Veterans Health Administration mandated that Veterans Affairs (VA) Medical Centers develop and implement a policy that allowed registered nurses (RNs) and advanced practice registered nurses (APRNs) to pronounce the death of residents who die in Veterans Affairs community living centers, previously known as nursing homes, provided that there is a written do-not-resuscitate order in their medical record. The purpose of this quality improvement project was to determine the extent to which the implementation of the RN/APRN death pronouncement policy affected death pronouncement time for residents who die after 5 PM and before 7:30 AM, on weekends and holidays. This project is significant because the previous physician-only death pronouncement policy was found to cause unnecessary delays in death pronouncement. A chart review of the medical records of all veterans' deaths pronounced by physicians 3 years before the implementation of the policy and 4 years after the RN/APRN policy was reviewed and implemented. The data analysis was conducted using descriptive analysis. A significant difference was found in the results (P < .05). The maximum for prepolicy deaths was 125 minutes. The maximum for postpolicy deaths was 7 minutes. The results supported the assumption that RN/APRN pronounced death without delay.
CONTEXT: The need for increased use and earlier initiation of palliative home care has been advocated by several international organizations.
OBJECTIVES: To investigate time trends in the use and timing of initiating palliative home care support (PHCS).
METHODS: Observational study using routinely collected population-level databases linked with health claims data for the entire population living at home that died from diseases indicative of palliative care needs in Belgium between 2010 and 2015 (n=230,704). Trends and trends by cause of death and age were measured through changes over time in prevalence of use of PHCS. Rates were standardized for age, sex and cause of death distribution in 2010. The median number of days before death when PHCS was initiated was calculated for each year.
RESULTS: Uptake of PHCS increased from 31.7% to 34.9% between 2010 and 2015. Trends were similar in size for all groups, except for people who died from dementia (smallest increase with 1.9 percent-point). The timing of initiating PHCS advanced from 41 days to 46 days before death, with the smallest increase observed among people who died from dementia (+2.5 days). The proportion of people receiving PHCS only in the last week of life changed from 15.3% to 13.9%.
CONCLUSION: This population-level study found a slight trend towards more and earlier initiation of PHCS between 2010 and 2015. However, uptake of PHCS remained below estimated needs in the population and the proportion of people receiving PHCS very late in life remained stable over time.
A consensus document on early palliative care was produced by a committed Working Group of the Italian Society of Medical Oncology and the Italian Society of Palliative Care to improve the early integration of palliative care in medical oncology and to stimulate and guide the choices of those who daily face the problems of advanced stage cancer patients. The simultaneous administration of antineoplastic treatments and early palliative care was shown to be beneficial in metastatic cancer pathway outcomes. Patients who could benefit from early palliative care are those with an advanced cancer at presentation, a compromised PS for cancer, and/or morbidities, and who are too frail to receive treatment. According to the Bruera practice models, in which the combination of cancer management with early palliative care can be offered, three groups of patients needing simultaneous care were identified and three different models of the delivery of palliative care were proposed. In patients with good prognosis and low need of simultaneous care, the solo practice model and the request for consultations were suggested, while in patients with poor prognosis disease with high need of simultaneous care and in conditions with high need of simultaneous care, regardless of cancer prognosis, the integrated care approach should be offered. Palliative care consultation services are seldom accessible in the majority of Italian hospitals; thus the application of various practice models depends on available resources, and a shared care model with the structures of palliative care operating in the area is often required.