Media Watch

2015; Volume 16, No 4, April

Media Watch: an annotated list of recent articles about palliative care in the news media and the literature

Lived experience of parents of children with life-limiting and life-threatening disease

CENTRAL EUROPEAN JOURNAL OF NURSING & MIDWIFERY, 2015;6(1):209-217. The aim of the research was to identify and describe the problems and experiences of family members caring for children with life-threatening or life-limiting diseases from diagnosis to the eventual death of the child. Four main categories and subcategories were defined: 1) onset of the disease (diagnosis, prognosis and awareness); 2) therapeutical phase (demands of care, the impact of disease and treatment on the family); 3) the acceptance of life with disease (feelings and emotions, coming to terms with disease); and, 4) dying and death (dignified dying, the period after death). Serious disease in a child is a difficult life situation for parents, associated with changes in their personal and family life. Carers need psychosocial support, especially in the form of advice, and require the exercise of empathy and open communication.
More information.

Threading the cloak: Palliative care education for care providers of adolescents and young adults with cancer

CLINICAL ONCOLOGY IN ADOLESCENTS & YOUNG ADULTS | Online – 9 March 2015 – Medical providers are trained to investigate, diagnose, and treat cancer. Their primary goal is to maximize the chances of curing the patient, with less training provided on palliative care (PC) concepts and the unique developmental needs inherent in this population. Early, systematic integration of PC into standard oncology practice represents a valuable, imperative approach to improving the overall cancer experience for adolescents and young adults (AYAs). The importance of competent, confident, and compassionate providers for AYAs warrants the development of effective educational strategies for teaching AYA PC. Just as PC should be integrated early in the disease trajectory of AYA patients, PC training should be integrated early in professional development of trainees. This article reviews unique epidemiologic, developmental, and psychosocial factors that make the provision of PC especially challenging in AYAs. A conceptual framework is provided for AYA palliative care education.
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Impacts of care-giving and sources of support: A comparison of end-of-life and non-end-of-life caregivers in Canada

HEALTH & SOCIAL CARE IN THE COMMUNITY | Online – 2 March 2015 – This is the second in a series of papers that deal with care-giving in Canada...1 Building on the first paper, which reviewed the differences between short-term, long-term and end-of-life (EOL) caregivers, this paper uniquely examines the caregiver supports employed by EOL caregivers when compared to non-EOL caregivers (short-term and long-term caregivers combined). The study revealed that with respect to socio-demographic characteristics, health outcomes and caregiver supports, EOL caregivers were consistently worse off. This suggests that although all non-EOL caregivers are experiencing negative impacts from their care-giving role, comparatively greater supports are needed for EOL caregivers.
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Closing the divide: the Harvard Global Equity Initiative-Lancet Commission on global access to pain control and palliative care

THE LANCET | Online – 8 March 2015 – Universal health coverage – the widely accepted quest of health systems x13 Knaul, FM, González-Pier, E, Gómez-Dantés, O et al. The quest for universal health coverage: achieving social protection for all in Mexico. Lancet. 2012; 380: 1259–1279 Summary | Full Text | Full Text PDF | PubMed | Scopus (55)See all References13 – must include access to pain control and palliative care with financial protection as a fundamental goal. x14Callahan, D. Ends and means: the goals of health care. in: M Danis, CM Clancy, LR Churchill (Eds.) Ethical dimensions of health policy. Oxford University Press, New York, NY; 2002: 3–18 See all References14. However, health entitlements and essential packages typically do not include drugs and other interventions to alleviate pain and suffering. x15 Jamison, D, Summer, L, Alleyne, G et al. Global health 2035: a world converging within a generation. Lancet. 2013; 382: 1898–1955 Summary | Full Text | Full Text PDF | PubMed | Scopus (81).

As a result, many opportunities to provide access to palliative care through health-system reform and national insurance have been missed. In low-income and middle-income countries regulations hampering opioid accessibility, combined with the scarcity of trained doctors and other health professionals, have stymied delivery of pain treatment and palliative care. But these barriers are not insurmountable. Integration of pain control and palliative care into health provision is a quintessential example of a diagonal strategy that can strengthen health systems through positive externalities for disciplines as diverse as surgery and social work. Novel initiatives from developing regions provide valuable lessons to share and scale-up. The Harvard Global Equity Initiative-Lancet Commission on Global Access to Pain Control & Palliative Care will build on previous work to harness these opportunities.
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Online grief support communities: Therapeutic benefits of membership

OMEGA – JOURNAL OF DEATH & DYING | Online – 6 March 2015 – Online grief support communities have become popular in recent years for those seeking information and empathetic others following the death of someone close to them. Hundreds of Facebook pages and Web sites are now devoted to bereavement – and healthcare professionals need to assess what therapeutic benefits virtual communities might offer to help people manage grief and integrate death into their lives. In the current study... individuals report less psychological distress as a result of joining these groups – and this psychosocial benefit increased over time. Individuals who were members for a year or more characterized their grief as less severe compared with those who had a shorter tenure in the community. Additional findings and implications are discussed.
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Cardiovascular implanted electronic devices in people towards the end of life, during cardiopulmonary resuscitation and after death

RESUSCITATION COUNCIL (U.K.), BRITISH CARDIOVASCULAR SOCIETY & NATIONAL COUNCIL FOR PALLIATIVE CARE | Online – Accessed 17 March 2015 – Each year, many thousands of people have electronic devices implanted, including pacemakers, implantable defibrillators and small recorders to monitor the heart's rhythm. The reason for each device is individual to the person and their particular medical problem. The increasing use of such devices has provided huge benefit but also has created new challenges for patients and those close to them, and for healthcare professionals. Clear challenges arise when people with an implanted device approach or reach the end of their life. What many people want in that situation is care and treatment to maintain their comfort and quality of life for whatever time they have left. Receiving treatment (for example electric shocks from an implanted defibrillator) as they are dying may provide no benefit but may cause them pain and may cause distress both to them and to those who care about them.
More information.

N.B. Available as a guide for health professionals, 'Deactivation of Implantable Cardioverter-Defibrillators Towards the End of Life.

"Death is part of the job" in long-term care homes: Supporting direct care staff with their grief and bereavement

SAGE OPEN | Online – 10 March 2015 – For long-term care (LTC) home staff who work directly with residents, death, dying, and grief are day-to-day experiences in their working life. However, staff are often overlooked for grief and bereavement support. This exploratory research used a qualitative approach to understand LTC staff's grief and bereavement experience and to identify the perceived support needs of nurses and personal support workers who work in two faith-based non-profit care homes in Thunder Bay, Ontario, Canada. Findings indicated that participants' experiences are complex, shaped by the emotional impact of each loss, the cumulative burden of ongoing grief, an organizational culture in LTC where death is hidden, and the lack of organizational attention to staffs' support and education needs. Eight recommendations were developed from the findings.
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Media Watch is intended as an advocacy 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 a recent issue of Media Watch (see below).

The current and back issues of the weekly report.


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