2016; Volume 17, No 10, October
Media Watch: an annotated list of recent articles about palliative care in the news media and the literature
Paediatric palliative care in Australia
Pop Up: A new model of paediatric palliative care
JOURNAL OF PAEDIATRICS & CHILD HEALTH | Online – 9 September 2016 – This paper describes a model of paediatric palliative care (PPC) developed in the Australian context, to improve access to specialist PPC for children at home. The Paediatric Palliative Care Service at the Children's Hospital at Westmead (CHW) is a multidisciplinary specialist team represented by medical, nursing, allied health and psychology. Approximately, 55 children a year are referred for specialist palliative care. The CHW specialist palliative care service’s catchment extends across metropolitan, rural and remote locations. Each year there is a small number of children who are approaching the end of their life in any particular community. The specialist palliative care team aims to provide a responsive, individualised and dynamic service to meet the needs of each child and their family and care givers. This requires a high level of engagement with local community care providers and adult-focused specialist palliative care services. A case study is described to illustrate this new model of care.
The Day Two Talk: Early integration of palliative care principles in pediatric oncology
JOURNAL OF CLINICAL ONCOLOGY | Online – 19 September 2016 – Since 2000, the number of hospital- and community-based pediatric palliative care (PPC) services, fellowship training programs, and educational opportunities for non-specialists has dramatically increased. With this growth, the importance of the early introduction of PPC, regardless of stage and prognosis, has been repeatedly demonstrated and has shown to substantially affect outcomes in multiple areas including patient symptoms and suffering. As models for early integration of PPC have emerged, so too has an understanding of the barriers to implementation, including still inadequate numbers of trained PPC specialists, the enduring perception that palliative care is synonymous with end-of-life care, and pediatric oncologists’ lack of clarity about how and when to integrate palliative care and whether or not subspecialty services are available. Fifteen years later, the barriers remain significant enough that . . . children dying as a result of cancer continue to suffer in significant numbers.
“Sometimes I’ve gone home feeling that my voice hasn’t been heard”: A focus group study exploring the views and experiences of health care assistants when caring for dying residents
BMC PALLIATIVE CARE | Online – 19 August 2016 – Participants confirmed that health care assistants (HCA) provide the majority of hands on care to dying residents and believed they had a valuable role to play at this time due to their unique “familial” relationship with residents and families. However, it was apparent that a number of barriers existed to them maximising their contribution to supporting dying residents, most notably the lack of value placed on their knowledge and experience by other members of the multidisciplinary team. Whilst a need for additional palliative and end-of-life care education was identified, a preference was identified for hands on education delivered by peers, rather than the didactic education they currently receive. Given ageing populations internationally, coupled with a constrained health budget, the role of HCA in most developed countries is likely to become even more significant in the short to medium term. This study makes a unique contribution to the international literature by identifying the barriers to caring for dying residents experienced by this valuable sector of the aged care workforce. These data have the potential to inform new, innovative, interventions to address the urgent need identified to improve palliative and end-of-life care management in aged care internationally.
End-of-life care in Latin America
JOURNAL OF GLOBAL ONCOLOGY | Online – 24 August 2016 – Cancer has become a global pandemic with disproportionately higher mortality rates in low- and middle-income countries, where a large fraction of patients present in advanced stages and in need of end-of-life care (EOLC). Globally, the number of adults needing EOLC is greater than 19 million, and up to 78% of these patients are living in low- and middle-income countries. In the Americas alone, more than one million people are in need of EOLC, placing an enormous burden on local health systems, which are often unprepared to meet the challenge presented by this complex patient population. In Latin America, cancer care is characterized by the presence of vast inequalities between and within countries, and the provision of EOLC is no exception. Disparities in access to advanced care planning, with a lack of provision of adequate palliative care (PC) and pain medication, are common in the region. These shortcomings are related in large part to inadequate or inappropriate legislation, lack of comprehensive national PC plans, insufficient infrastructure, lack of opportunities for clinical training, unreliable reporting of data, and cultural barriers. This report reviews the current status of EOLC in Latin America, focusing on identifying existing deficiencies and providing a framework for improvement.
End-of-life care in Kenya
Integration of legal aspects and human rights approach in palliative care delivery – the Nyeri Hospice model
eCANCERMEDICALSCIENCE | Online – Accessed – 30 August 2016 – In the absence of a clear legal provision expressly recognising palliative care (PC) in Kenya, providers may face numerous legal and ethical dilemmas that affect the availability, accessibility and delivery of PC services and commodities. In order to ensure positive outcomes for patients, their families, and providers, PC services should be prioritised by all and include advocating for the integration of legal support into those services. PC service providers should be able to identify the various needs of patients and their families including specific issues requiring legal advice and interventions. Access to legal services remains a big challenge in Kenya, with limited availability of specialised legal services for health-related legal issues. An increased awareness of the benefits of legal services in PC will drive demand for easily accessible and more affordable direct legal services to address legal issues for a more holistic approach to quality PC.
The Island Hospice model of palliative care
eCANCERMEDICALSCIENCE | Online – Accessed 30 August 2016 – It is the aim of Island Hospice & Healthcare to bring about a positive change in the lives of the many individuals faced with the challenge of being affected by cancer-related terminal illness. This is carried out through various elements of research, capacity building, direct care, and the constant revision of outcomes of projects implemented by Island. The vision for the future is to provide equitable access to palliative care nationwide.
Media Watch is intended as an advocacy, education and research tool. The weekly report, published by Barry R. Ashpole, a Canadian communications consultant and educator, monitors the literature and the lay press on issues specific to the quality of end-of-life care. It is international in scope and distribution. Each month, this section of the IAHPC Newsletter will publish an abstract or summary of an article or report of special interest noted in recent issues of Media Watch (see below).
Read the current and back issues of the weekly report.