A Review of the Literature on End-of-life Care: Setting a Research Agenda for Maine

In 2002, Last Acts, a national campaign of the Robert Wood Johnson Foundation, issued a report assessing the states on access to end-of-life care and policies supporting its provision. Quite striking for the hospice providers and other stakeholders of Maine, the state ranked second to last in hospice use among persons over age 65 in their last year of life. Although anecdotal and unpublished data suggest that hospice use is on the rise in Maine, concerns about the low use rate remains a concern to those interested in end-of-life care in the State. In order to better understand the factors influencing the use of hospice in Maine, the Maine Hospice Council asked the Muskie School of Public Service to conduct a literature review synthesizing current knowledge on outcomes, use, cost, and barriers to end-of-life care. This review provides a foundation for setting an overall research agenda for the Council. At the end of the report, we have outlined a set of questions for further research regarding end-of-life care in Maine

A National Framework and Preferred Practices for Palliative and Hospice Care

Establishes the framework for a set of preferred practices that can be implemented to provide palliative and hospice care that is safe, beneficial, timely, patient-centered, efficient, and equitable

Ethnicity, Older People and Palliative Care

This report brings together established and developing work on older people, ethnicity and palliative care from PRIAE (Policy Research Institute on Ageing and Ethnicity) and the National Council for Palliative Care (NCPC). It draws attention to the palliative care needs and experiences of elders from groups most commonly referred to in the UK as being 'minority ethnic'. The recognition of how multiple and simultaneous disadvantages can affect palliative care needs and experiences is an issue of broad relevance to palliative care - and one that is not restricted to the discussion of old age and ethnicity. In this sense, the report also aims to encourage more complex approaches to inequality in palliative care for all service users

Business models in health care: Accounting for the sustainability of palliative and end of life care provision by voluntary hospices' in England

This study evaluates the sustainability of palliative and end of life care provision by voluntary hospices in England. Using a mixed methods, inductive approach, we construct a ‘descriptive business model’ for hospices which is grounded in analysis of relevant accounting information, and supported by narratives extracted from interviews with senior clinical and non clinical managers from four large and medium sized hospices. The study reveals the strengths and weaknesses of the hospice business model and evaluates its robustness against forthcoming challenges. Our findings highlight the gradual transition from a basic voluntary sector business model to a complex, highly sophisticated, and institutionalized care establishment, sharing many of the characteristics found in large private and public organizations. The sustainability however of the business model is threatened due to its exposure to a number of contradictory forces. Whilst demand for palliative and end of life care going forward is set to increase, due to both demographic and regulatory factors, hospices' voluntary income is highly volatile. Dependency on sustaining a complex network of stakeholder groups to underwrite income, challenges the hospice business model’s ability to cope with the anticipated challenges

Hospice and Palliative Care - Access for All

Published to coincide with World Hospice and Palliative Care Day 2006, this report showcases the success stories of how hospice and palliative care has been provided in the most difficult settings. It also explores how services can be made more accessible and reflects the diversity of our society and the different beliefs and attitudes to care that people have. It focuses on a number of barriers to good care provision including geography, complex needs, culture and perception, and social exclusion

The Quality of Death: Ranking End-of-Life Care Across the World

As the proportion of the world's population grows disproportionately older, the need for end-of-life services will only increase. This paper ranks 40 countries in terms of the quality and availability of end-of-life care. For this paper, the author also conducted in-depth interviews with over 20 experts on the subject from across the world -- including palliative care specialists, physicians, healthcare economists and sociologists -- and reviewed existing research on the topic

Analysing Scientific Collaborations of New Zealand Institutions using Scopus Bibliometric Data

Scientific collaborations are among the main enablers of development in small national science systems. Although analysing scientific collaborations is a well-established subject in scientometrics, evaluations of scientific collaborations within a country remain speculative with studies based on a limited number of fields or using data too inadequate to be representative of collaborations at a national level. This study represents a unique view on the collaborative aspect of scientific activities in New Zealand. We perform a quantitative study based on all Scopus publications in all subjects for more than 1500 New Zealand institutions over a period of 6 years to generate an extensive mapping of scientific collaboration at a national level. The comparative results reveal the level of collaboration between New Zealand institutions and business enterprises, government institutions, higher education providers, and private not for profit organisations in 2010-2015. Constructing a collaboration network of institutions, we observe a power-law distribution indicating that a small number of New Zealand institutions account for a large proportion of national collaborations. Network centrality concepts are deployed to identify the most central institutions of the country in terms of collaboration. We also provide comparative results on 15 universities and Crown research institutes based on 27 subject classifications.Comment: 10 pages, 15 figures, accepted author copy with link to research data, Analysing Scientific Collaborations of New Zealand Institutions using Scopus Bibliometric Data. In Proceedings of ACSW 2018: Australasian Computer Science Week 2018, January 29-February 2, 2018, Brisbane, QLD, Australi

Oncology and palliative care

Oncology developed as a discipline over the last decades. Treatment is concentrated on cure or palliation of the illness with the help of chemotherapy, radiotherapy or surgery. Palliative care has its origin in the hospice movement that started around 1960 in the UK. Centre of care is the patient and his family. Focus of care has moved from quantity to quality of life. Symptom control, communication, rehabilitation and care for the dying are main areas of palliative care. Palliative care and palliative medicine have only developed over the last 10 years in Germany. It is still seen as care for the dying after completion of oncological treatment. The integration of palliative care in earlier stages of the disease is essential to offer a continuity of care for the patient and his family. Principles of palliative care need also be part of medical and post-graduate training

Barriers to the development of palliative care in Western Europe

The Eurobarometer Survey of the <i>EAPC Task Force on the Development of Palliative Care in Europe</i> is part of a programme of work to produce comprehensive information on the provision of palliative care across Europe. Aim: To identify barriers to the development of palliative care in Western Europe. Method: A qualitative survey was undertaken amongst boards of national associations, eliciting opinions on opportunities for, and barriers to, palliative care development. By July 2006, 44/52 (85%) European countries had responded to the survey; we report here on the results from 22/25 (88%) countries in Western Europe. Analysis: Data from the Eurobarometer survey were analysed thematically by geographical region and by the degree of development of palliative care in each country. Results: From the data contained within the Eurobarometer, we identified six significant barriers to the development of palliative care in Western Europe: (i) Lack of palliative care education and training programmes (ii) Lack of awareness and recognition of palliative care (iii) Limited availability of/knowledge about opioid analgesics (iv) Limited funding (v) Lack of coordination amongst services (vi) Uneven palliative care coverage. Conclusion: Findings from the EAPC Eurobarometer survey suggest that barriers to the development of palliative care in Western Europe may differ substantially from each other in both their scope and context and that some may be considered to be of greater significance than others. A number of common barriers to the development of the discipline do exist and much work still remains to be done in the identified areas. This paper provides a road map of which barriers need to be addressed

The effect of age on referral to and use of specialist palliative care services in adult cancer patients: a systematic review

Objective: to investigate variations in the use of specialist palliative care (SPC) services for adult cancer patients, in relation to age.Design: systematic review of studies examining use of or referral to SPC services in adult cancer patients.Search strategy and selection criteria: six electronic databases (Medline, Embase, Web of Science, HMIC, SIGLE and AgeInfo) were searched for studies published between 1966 and March 2005, and references in the articles identified were also examined. Inclusion criteria were all studies which provided data on age in relation to use of or referral to SPC. Two reviewers independently selected studies, extracted data and assessed methodological quality according to defined criteria.Main outcome measures: use of or referral to SPC services, determined from all sources of report (patient, informal carer, health care professional, health care records).Results: 14 studies were identified. All reported a statistically significant lower use of SPC among older cancer patients (65 and above or older) at a univariate level [crude odds ratios ranged from 0.33 (0.15-0.72) to 0.82 (0.80-0.82)]. However, there were important methodological weaknesses in all of the studies identified; most crucially, studies failed to consider variations in use in relation to need for SPC.Conclusions: there is some evidence that older people are less likely to be referred to, or to use, SPC. These findings require confirmation in studies using prospectively collected data which control for patient's need for SPC