The introduction of palliative care in Uganda

Hospice Uganda was established in Kampala, September 27, 1993. Since then the hospice has served over 3,000 patients with cancer, and referrals of patients with HIV/AIDS are increasing steadily. The concepts of hospice and palliative care are well accepted in Uganda, but the delivery of services has been severely constrained by limited resources. Possibilities for growth, both in service provision and education of health professionals, were improved significantly with the incorporation of palliative care objectives into the Ministry of Health 5-year strategic plan.     

The development of palliative care in national government policy in England, 1986-2000

Palliative care is an established and expanding speciality, important in many areas of service delivery within health and social services and the voluntary sector. Traditionally, palliative care is viewed as most closely linked to cancer services. National government policy has an inevitable impact on the organization and provision of such services. As part of a wider project, an investigation of the content and development of English government policy relating to palliative care was carried out. The development of policy follows a cycle that has no closure; it takes place within changing contexts, between multiple organizations and across sectors. Data collection involved the collation and close examination of policy documents and other documents that demonstrably influenced policy. This was in order to identify a national view of policy intentions for palliative care. In total, 53 policy documents were examined. The analysis revealed a number of pertinent issues relating to shifts in funding policies and an evolving definition of palliative care. There is an increasing recognition in the policy documents of the need for palliative care to extend beyond the traditional focus on cancer services and terminal illness. In tandem, is an increasing recognition of the need for partnership between sectors, reflected in more recent health and social services legislation.     

Development of a rural palliative care program in the Calgary Zone of Alberta Health Services

Specialized rural models of palliative care are greatly needed to address the challenges rural communities face in providing palliative care services and to ensure that their unique strengths and needs are considered. In late 2005, a Rural Palliative Care Program was developed to support primary care providers in delivering palliative care to patients in rural communities outside of Calgary, Alberta, Canada. The program was grounded in the needs of individual communities, incorporated integral roles for local champions, and adopted pre-existing, accepted rural structures and processes. Needs and gaps in rural palliative care service delivery were identified and prioritized. The following actions were taken to address the top six priorities: 1) more accessible palliative care education opportunities with a rural focus were provided to health care professionals; 2) linkages with rural and urban resources were strengthened and access to specialists and procedures was improved; 3) strategies were implemented to improve psychosocial support for patients and families; 4) resources were developed to facilitate rural home deaths; 5) opportunities were expanded for education and utilization of volunteers; and 6) a mobile specialist consultation team was developed to support rural health care professionals and their patients in their rural communities. In its first four years, the team consulted on 640 patients, nearly three-quarters of whom died in their rural communities. Rather than imposing an urban outreach strategy, the development of a rural-based program through respectful engagement of local providers has proven to be crucial to the success of this rural palliative care program.     

Exploring generalizability in a study of costs for community-based palliative care

ContextPalliative care researchers face challenges recruiting and retaining study subjects.ObjectivesThis article investigates selection, study site, and participation biases to assess generalizability of a cost analysis of palliative care program (PCP) clients receiving care at home.MethodsStudy subjects’ sociodemographic, geographic, survival, disease, and treatment characteristics were compared for the same year and region with those of three populations. Comparison I was with nonstudy subjects enrolled in the PCP to assess selection bias. Comparison II was with adults who died of cancer to assess study site bias. Comparison III was with study-eligible persons who declined to participate in order to assess participation bias.ResultsComparison I: When compared with the other 1010 PCP clients, the 50 study subjects were on average 3.6 years younger (P = 0.03), enrolled 70 days longer in the PCP (P < 0.001), lived 6.7 km closer to the PCP (P < 0.0001), and were more likely to have cancer (96.0% vs. 86.4%, P = 0.05). Comparison II: Compared with all cancer decedents, the 45 study subjects who died of cancer were on average 7.0 years younger (P < 0.001), lived 2.7 km closer to the PCP (P < 0.001), and were more likely to have had radiotherapy (62.2% vs. 33.8%, P < 0.0001) and medical oncology (28.9% vs. 14.8%, P = 0.01) consultations. Comparison III: The 50 study subjects lived on average 42 days longer after their diagnosis (P = 0.03) and 2.6 km closer to the PCP (P = 0.01) than the 110 eligible persons who declined to participate.ConclusionIf the study findings are applied to populations that differ from the study subjects, inaccurate conclusions are possible.     

Progress to achieve balanced state policy relevant to pain management and palliative care: 2000-2003

State laws and regulatory policies govern healthcare practice, including the prescribing, dispensing, and administering of opioid analgesics to treat pain. A number of national healthcare and law enforcement organizations have identified drug regulatory policy as a potential barrier to pain relief and palliative care, and have called for evaluation and removal. This article summarizes and discusses the results of an innovative evaluation methodology that was used to produce three policy analysis tools, including one report that graded and ranked states based on the quality of their policies related to pain management and palliative care (called a Progress Report Card [PRC]). The PRC development and implementation was a first-of-a-kind study that compared pain policies in all states over a three year period according to the same evaluation criteria. Results demonstrate significant progress to improve policy in a number of states during the study period, but also showed that most state policies are characterized by a lack "balance." In addition to providing examples of policy change in particular states, the relevance of these findings to current policy issues, including the importance of communicating and implementing new policies is discussed. The need for partnerships between the healthcare and law enforcement communities is emphasized to create a more positive regulatory environment for pain relief and palliative care, which ultimately will benefit patient care.     

Culture,palliative care and multiculturalism

The frequently asked question, 'Why do minority ethnic groups not access palliative care?' needs closer analysis. This article sets out to revisit the context and principles of palliative care and discuss why palliative care services are not accessed equally by all cultural groups in western, particularly UK, society. The conceptual basis of culture, together with cultural diversity, will be discussed to foster greater understanding of multiculturalism with a view to offering recommendations for the provision of culturally sensitive palliative care. These recommendations will seek to be challenging but realistic, both for practitioners providing such care and for educationalist disseminating 'knowledge'. I will highlight what I believe are the challenges of providing palliative care that is acceptable to minority ethnic groups based on personal experience and literature, and emphasize that these challenges should be seen as potential opportunities. It is hoped that this article will set a platform for honest and open discussion about the way forward in providing culturally sensitive palliative care for minority ethic groups. I will pose a challenging call to all members of minority ethnic groups to adopt a more proactive approach to their own care by preparing themselves to be in an influential position in palliative care provision through academic and clinical endeavours.     

Resource consumption and costs of palliative care services in Spain: a multicenter prospective study

Patients (n = 395) with terminal-stage cancer receiving attention from palliative care services (PCSs) were recruited over a period of 15 consecutive days from 171 participating PCS units. Resource consumption and costs were evaluated for 16 weeks of follow-up, and the findings were compared with a study conducted in 1992 so as to assess change over time. The most frequent health care interventions were homecare visits, hospital admissions, and patient-consultant phone calls. PCS provided 67% of all services and consultation interventions in 91% of patients. Compared with the historical data, there was a significant shift from the use of conventional hospital beds toward palliative care beds, a reduced hospital stay (25.5–19.2 days; P = 0.002), an increase in the death-at-home option (31%–42%), a lower use of hospital emergency rooms (52%–30.6%; P = 0.001), and an increase in programmed care. Compared to the previous resource consumption and expenditure study in 1992, the current PCS policy implies a cost saving of 61%, with greater efficiency and no compromise of patient care.     

Capturing activity,costs, and outcomes: The challenges to be overcome for successful economic evaluation in palliative care

Abstract

Palliative care, as with other health care services, is faced with the difficulty of competing for limited health care resources. Health care decision makers seek to maximize ‘value for money’ when selecting services to fund. The challenges for the palliative care community are to (a) demonstrate the cost effectiveness of its interventions in comparison to other health services and (b) provide evidence that the resources currently allocated are being used efficiently. Health economic evaluation can be conducted to support this. In this paper different economic approaches to evaluating health care services are introduced. Providing examples from (home based) palliative care we consider the opportunities to progress this work. We also describe the related challenges of capturing activity, costs, and outcomes. Although the very nature of this area of care presents unique methodological challenges that will need to be overcome, appropriate analyses will allow comparisons across the wider health sector and strengthen the argument for palliative care services.     

Vulnerability, disability, and palliative end-of-life care

Palliative care has paid exceedingly little attention to the needs of disabled people nearing the end of life. It is often assumed that these individuals, like all patients with little time left to live, arrive at palliative care with various needs and vulnerabilities that by and large, can be understood and accommodated within routine standards of practice. However, people with longstanding disabilities have lived with and continue to experience various forms of prejudice, bias, disenfranchisement, and devaluation. Each of these impose heightened vulnerability, requiring an honest, thoughtful, yet difficult revisiting of the standard model of palliative care. A proposed Vulnerability Model of Palliative Care attempts to incorporate the realities of life with disability and how a contextualized understanding of vulnerability can inform how we approach quality, compassionate palliative care for marginalized persons approaching death.     

安宁缓和医疗中的灵性照顾

灵性照顾是安宁缓和医疗实践的核心内容之一.本文以中国医科大学附属盛京医院宁养病房开展灵性照顾的实践经验为基础,阐述了灵性的概念和灵性照顾的意义,以及有效开展灵性照顾的相关要点,供安宁缓和医疗从业人员参考.