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 publishes selected abstracts or summaries of articles or reports of special interest from recent issues of Media Watch.
JOURNAL OF GLOBAL ONCOLOGY | Online – 16 January 2018 – Palliative care (PC) remains an urgent, neglected need in the developing world. Global disparities in end-of-life care (EoLC) for children, such as those with advanced cancers, result from barriers that are complex and largely unstudied. This study describes these barriers at Bugando Medical Center, one of three consultant hospitals in Tanzania, to identify areas for PC development suitable to this context. Data from interviews as well as participant observation revealed several barriers to PC: financial, infrastructure, knowledge and cultural (including perceptions of pediatric pain), and communication challenges. Although this study focused on barriers, what also emerged were the unique advantages of EoLC in this setting, including community cohesiveness and strong faith background. This study provides a unique but focused description of barriers to PC common in a low-resource setting, extending beyond resource needs. This multidisciplinary qualitative approach combined interviews with participant observation, providing a deeper understanding of the logistical and cultural challenges in this setting. This new understanding will inform the design of more effective – and more appropriate – PC policies for young patients with cancer in the developing world.
BMJ SUPPORTIVE & PALLIATIVE CARE | Online – 20 January 2018 – Improving Indigenous people’s access to palliative care (PC) requires a health workforce with appropriate knowledge and skills to respond to end-of-life (EoL) issues. The Indigenous component of the Program of Experience in the Palliative Approach includes opportunities for Indigenous health practitioners to develop skills in the palliative approach by undertaking a supervised clinical placement of up to 5 days within specialist PC services. This paper presents the evaluative findings of the components of an experiential learning programme and considers the broader implications for delivery of successful PC education programmes for Indigenous people. Participants reported that placements increased their confidence about engaging in conversations about EoL care and facilitated relationships and ongoing work collaboration with PC services. Management support was critical and placements undertaken in settings which had more experience caring for Indigenous people were preferred. Better engagement occurred where the programme included Indigenous staffing and leadership and where pre-placement and post-placement preparation and mentoring were provided. Opportunities for programme improvement included building on existing post-placement and follow-up activities.
Asia-Pacific Journal of Oncology Nursing, 2018;5(1):12-14. The need of the hour is for education and training in palliative care (PC) on a scale not previously achieved. There are diverse and complementary approaches to the more traditional or comprehensive institutional-, university-, or college-based education which are often too expensive for professionals living and working in low- and middle-income countries. Free online courses such as e-cancer's PC e-learning course for health professionals in Africa, Stanford's Palliative Care Always program, and the relatively low-cost Education in Palliative & End-of-Life Care distance learning course are accessible to the global community of practitioners. Mentorship projects such as Project Hamrahi, a collaboration between Pallium India and Australasian Palliative Link International, reduce isolation and facilitate sharing of experience and expertise. The Palliative Care-Promoting Access and International Cancer Experience is a new quality improvement collaboration sponsored and coordinated by Stanford's PC program, drawing on Stanford's Clinical Excellence Leadership Training program, and aims to develop quality improvement skills and increase access to PC in India. Intensive in-country training of trainers programs, such as that developed by the Lien Collaborative for Palliative Care in Myanmar, Bangladesh and Sri Lanka, encourage multidisciplinary education and integration of PC into oncology and other aspects of health care. Project Echo, originally developed in New Mexico, the U.S., has now been introduced to India for PC education and development of care management expertise. The International Palliative Medicine Fellowship program is another innovation which successfully influenced PC development globally. International peak bodies such as International Association of Hospice & Palliative Care, the Asia Pacific Hospice Palliative Care Network, and the European Association of Palliative Care also play a major role in fostering PC through provision of free resources, scholarships, fellowship and providing collaborative and interactive platforms for members.
Health SA Gesondheid, 2017;22(12):333-341. The escalation of HIV/AIDS infections in the last decade has increased the need for palliative care (PC) community organizations to care for orphans and vulnerable children, who are in dire need of support. Many of these organizations depend on the services of lay community health workers to provide constant care to those in need of it in their local communities. The focus of this study is to explore the role of lay health workers in a community organization located in rural Bronkhorstspruit, Gauteng Province of South Africa that provides PC for orphans and vulnerable children diagnosed with HIV/AIDS. Their roles were analysed critically through a job-demands and job-resources theoretical framework. Through the findings, a framework for enhancing the work experiences of the lay community health workers was developed. The uniqueness of this framework is that the focus is on improving the work lives of the lay community health workers, who have serious skills-resourcing needs. There were specific concrete strategies that the organization could adopt to support the knowledge and skills requirements of the lay community health workers in relation to the needs and challenges that will enhance their efficiency in the PC environment. The findings and framework that emanated from this study could be used to support lay community health workers in their respective organizations to be more effective in the support they provide to orphans and vulnerable children. Because South Africa is afflicted by the HIV/AIDS epidemic, this framework can be used in similar organizations that are working with lay community health workers with skill-resourcing needs not only in the health sector, but also in other sectors, such as in education and agriculture.
Indian Journal of Palliative Care, 2018;24(1):61-66. In India, roughly one-half of patients undergoing cancer treatment are unaware of their diagnosis or treatment. A cross-sectional study was conducted among 100 palliative care (PC) patients to assess the extent of knowledge about their diagnosis and prognosis. The caretakers and the treating doctors were interviewed. The prevalence of collusion was 37%, i.e., in more than one-third of the PC patients; caregivers restrained doctors from disclosing the diagnosis. The prevalence of collusion was less among patients with higher educational qualification and professionals. Collusion was not associated with gender, type of family, place of residence, and socioeconomic status. In multivariate regression, collusion was independently associated with poor quality of life (QoL) when adjusted for age, gender, place of residence, religion, educational status, family type, and socio-economic status. Collusion is fairly prevalent and it worsens the QoL among cancer patients. Since the main driver for collusion is the strong desire among caregivers to protect the physical and psychological well-being, the findings of the study could motivate the caregiver for a more open and honest communication.
Journal of Clinical Ethics, 2017;28(4):257-268. Clinicians and ethicists routinely encounter complex ethical dilemmas that seem intractable, which have been described as ethical Gordian knots. How can they best assist patients and surrogate decision makers who are entangled in struggles around the capacity to make life-or-death treatment decisions? The author describes unconventional and unorthodox approaches to help slice through these dilemmas.
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Journal of Hospital Medicine| Online – 20 December 2017 – Updated knowledge of the palliative care (PC) literature is needed to maintain competency and best address the PC needs of hospitalized patients. The authors critiqued the recent PC literature with the highest potential to impact hospital practice. Key findings include: 1) Scheduled antipsychotics were inferior to a placebo for non-terminal delirium; 2) A low-dose morphine was superior to a weak opioid for moderate cancer pain; 3) Methadone as a co-analgesic improved high-intensity cancer pain; 4) Many hospitalized patients on comfort care still receive antimicrobials; 5) Video decision aids improved the rates of advance care planning and hospice use, and decreased costs; 6) Standardized, PC-led intervention did not improve psychological outcomes in families of patients with a chronic critical illness; 7) Caregivers of patients surviving a prolonged critical illness experienced high and persistent rates of depression; 8) People with non-normative sexuality or gender faced additional stressors with partner loss; and, 9) Physician trainees experienced significant moral distress with futile treatments.
Revista Brasileira de Enfermagem, 2018;71(1):206-213. A family conference (FC), a therapeutic instrument used by the palliative care (PC) team, emerges as a moment of planned dialogue between patient, family and team. Although it is of particular importance, the FC is still less widespread among health professionals. In addition to the scarcity of studies, it can be seen that there is no single definition in the literature about FCs. For some authors, FC is defined as an intervention aimed at sharing information, clarifying doubts about patient and family concerns, and communicating ‘bad news’ in order to allow the family not only to understand the dynamics of the care that is being provided to their loved one in the process of dying, but also establish an affective connection so that it is possible to reach a consensus in the resolution of problems. One study states that the FC reflects a planned intervention with the family with the goal of helping to alleviate suffering. It is an effective means of communication and should be structured to enable nurses and other health professionals to provide information, assess patient and family needs, and create opportunities for shared decision-making for interaction within the family. It is necessary to develop a concept analysis about the FC in the context of PC, aiming at a better understanding and of the concept, and enabling a practical systematization of this therapeutic family instrument.
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