Behavioral Sciences | Online – 26 April 2017 – The Death Café is part of the “death positive movement” and, as such, is uniquely positioned to bring the dialogue about death and dying to the public. Participants in a Death Café typically have two different perspectives. Some participants have not experienced death in their family and friends’ circle and wish to converse with others about their beliefs on death and dying. Others are those who have experienced death somewhere in their circle of friends and families. One of goals of the Death Café facilitators is to help attendees reconcile their family narratives regarding death using the broader lens of the Death Café. Using the insights provided by interviews from 15 Death Café facilitators, this manuscript discusses the role of the Death Café facilitators as the death doulas of family communication.
International Archives of Medicine | Online – 25 April 2017 – Traditionally, palliative care (PC) in Brazil has been offered most often to people suffering from cancer in the advanced stage. The needs for people who have other life-limiting chronic diseases are not being fulfilled in a stable approach. The concept of PC only at the end of life (EoL) limits access for many people and carers that could benefit from this mode of health assistance during the trajectory of the disease; from diagnosis, continuing to benefit from treatments that alter the progress of the disease, until the EoL. Despite the fact that PC structures and resources have had a significant increase in recent years in Brazil, the distribution of services are concentrated in some regions, but the health care for people with chronic advanced or life-limiting diseases is fragmented and also there exists differences in the level of access and kind of care. The authors propose guidelines based on integration of several existing policies, trigger and strengthen actions, and integral care to patients with PC needs that are synergistic, sustainable, and respectful of the specificities of each area as well as to support decision-making and the development of actions in health, in particular to the definition of needs and priorities, the construction of prospective scenarios, and the assessment of ongoing actions.
Palliative Medicine | Online – 14 May 2017 – Discrimination experienced by lesbian, gay, bisexual and/or trans (LGBT) people facing advanced illness is unjust and at odds with legislation. Focused efforts are needed to improve care experiences for LGBT people through public health strategies to address issues in accessing care, and training and education, to address deficits in care delivery, focusing on knowledge, skills and attitudes of health-care professionals. Five main themes emerged in this study: 1) Person-centred care needs that may require additional/different consideration for LGBT people (including different social support structures and additional legal concerns); 2) Service level or interactional (created in the consultation) barriers/stressors (including heteronormative assumptions and homophobic/transphobic behaviours); 3) Invisible barriers/stressors (including the historical context of pathology/criminalisation, fears and experiences of discrimination); and, 4) service level or interactional facilitators (including acknowledging and including partners in critical discussions). This study identifies 10 simple, low-cost recommendations for individuals, services and institutions, to improve care for LGBT people facing advanced illness. Through working collaboratively with LGBT communities to promote visibility and partnership, we can enact a culture shift by increasing expectations for person-centred care and improving care delivery.
Prehospital & Disaster Medicine | Online – 20 April 2017 – There is a lack of evidence clarifying ethical and practical possibilities and consequences of humanitarian organizations, addressing or failing to address patients’ palliative needs. This study sought to inform realistic, context-sensitive guidance, education, and practice for the provision of palliative care (PC) during humanitarian emergencies. Beginning with a survey of international aid organizations, the authors aimed to identify a baseline of current PC provisions for clinical and psychosocial care in humanitarian action. Survey results and preliminary analysis of interviews are shared. Responses cover: 1) Preparedness to deliver PC in humanitarian emergencies (e.g., disasters, conflict areas, epidemics); 2) Resources currently available to support the delivery of PC in humanitarian contexts; and, 3) Ideas/concerns related to integration of PC into humanitarian healthcare. PC is an area of growing global concern. It is increasingly recognized as necessary, yet simultaneously seen as outside the realm of possibility, particularly in humanitarian settings, where care in life-threatening conditions may be logistically and ethically challenging.
N.B. The full text of this article is available here; click on ‘Request full text’.
Tropical Medicine & Health | Online – 5 May 2017 – Chronic illnesses are a major public health problem in low-income countries. In the Democratic Republic of the Congo (DRC), few data are available, especially in palliative care. In this context, the present study aimed at describing the patterns of diseases in Kinshasa hospitals as well as risk factors associated with patients’ evolving status and length of hospital stay. The study confirms that patients with a chronic disease condition are frequent in Kinshasa hospitals. They often referred late to the hospital once they have reached an advanced stage of illness. The most frequent diseases encountered were cardiovascular disease, co-morbidities and AIDS. One third of patients died at the hospital, and more than two thirds of patients were lost to follow-up. The proportion of female respondents being hospitalized was higher; their hospital stay was shorter, identical to patients from urban areas. Additional studies are urgently required in different environments of care in order to develop a more detailed inventory of these diseases. These will help implement appropriate healthcare strategies in DRC.
IRELAND | An independent report by Senator Marie-Louise O’Donnell – 18 May 2017 – The key recommendations from this study involve the government reviewing its services, developing supports that are fit-for-purpose and championing the right to a dignified death at home and abroad. The research in this report shows that end-of-life (EoL) is relevant to every arm of the State. While many departments did not have a policy in relation to dying, death and bereavement, almost all were engaged in activities or had developed protocols and practices in response to the recognised needs of people facing dying, death and bereavement. It was also understandable that departments do not have policies on EoL as the State itself has no overarching strategy. EoL is corralled into health strategies covering palliative care, dementia, carers and older people. Therefore, it is natural that people defer to the Department of Health on issues around dying, death and bereavement. Yet people who experience death are citizens and will be attending school as a pupil or teacher; they will be at work; they are family members; they will live in homes that need adaptation as their illness progresses; they will need transportation to live and socialise and get to health appointments; they may be compelled to apply for income supports to cover their growing medical and living expenses … In most cases, they will approach the State for support.
N.B. This report is Senator O’Donnell’s second on end-of-life care in Ireland (see below). Government Departments, the Office of Public Works, and the Office of the Revenue Commissioners were involved. The Department of Health, however, was not included. Download Senator O’Donnell’s report at the website of Senator Marie Louise O’Donnell.
IRELAND | The Independent (Dublin) – 4 December 2015 – ‘Death and bereavement not just a family issue when it comes to our civil servants.’ There are almost 30,000 civil servants in Ireland today. They represent a cross section of Irish society. They are the wheels of government. A silent people who do their best to ensure the workings of State. This is why the report I have written, ‘Finite Lives – Part 1 – A Report on How the Civil Service Deals with Dying, Death and Bereavement Among its Own Members,’ is unique.1
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.
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