CANCER NURSING, 2016; 39 (1): 1-2. The interest in a global approach to end-of-life care is reflected in position statements from a number of international organizations and professional associations and in the priority care or research lists generated by small groups involving a limited number of individuals from three or more countries. But this level of interest and effort has not become a global initiative, program, or movement. There are no international laws that include end-of-life care as part of a healthcare system, and there are no tested international clinical guidelines, and no globally approved best practices. Of most concern, there may be no political will to legislate the right of all persons to the highest-quality end-of-life care. But what would a global champion do? What would be better for individuals dying a cancer death, their families, and their governments? A global champion would commit to establishing a unified and worldwide plan that would include a shared vision, conceptual model and business plan, consensus priorities for care and the corresponding research and quality improvement strategies, and a common lexicon for use in administration, policy setting, education, care, research, and quality improvement efforts.
HEALTH AFFAIRS | Online – 7 December 2015 – Industrialized countries face a challenge providing high-quality care for aging patients with increasingly complex health care needs who will need ongoing chronic care management, community and social services in addition to episodic acute care. A survey of primary care doctors in the U.S. and nine other countries reveals concern about how well prepared their practices are to manage the care of patients with complex needs and about their variable experiences in coordinating care and communicating with specialists, hospitals, home care, and social service providers.
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HEALTH & HUMAN RIGHTS JOURNAL, 2015; 17(2): 149-165. Attributing policy change to one specific organization, intervention, or strategy is often impossible and can be counter-productive. Moreover, the long-term nature of policy or legal change makes it difficult to track the specific antecedents and contributions of actions that set the stage for later potentially more visible work. Efforts by coalitions, which bring diverse expertise, authority, and perspectives, can provide critical momentum to the development of new norms and can increase pressure on international organizations to change priorities and practices. In this case, the involvement of mainstream human rights organizations in advocacy around access to palliative care (PC) lent credibility and specificity to the concept and helped generate a broad acceptance that PC is indeed a right. The authors’ efforts to advance an understanding and acceptance of access to PC as an element of the right to health were aided by recognition of the relationship between this right and two fundamental principles long recognized within human rights movements. First, the right to be free of unnecessary suffering is consistent with the principle of dignity, on which human rights are based. Secondly, the de facto denial of access to pain relief, where it causes severe pain and suffering, can be considered cruel, inhuman, and degrading treatment. Using testimony from individuals and their families ... provided vivid support of both the loss of dignity among people suffering chronic pain and the inhuman and degrading consequences of the lack of access to pain relief. A human rights-based advocacy approach provided new tools and tactics to complement the traditional skill building provided by PC advocates. The result was increased political will to address structural barriers, increased understanding of the technical solutions required, and the protection of the rights of millions of people suffering unnecessary pain.
JOURNAL OF PERINATOLOGY, 2015; 35: S19–S23. Technological advances have increased our ability to detect a life-threatening, life-limiting or lethal problem early in pregnancy, leaving parents months to anticipate a death or a prematurely born infant. Babies can also be born with unanticipated problems that could lead to death. In either scenario, perinatal palliative care (PC) should be offered as a strategy for family support. Since the preponderance of professional training focuses on saving lives, many health professionals are uncomfortable with PC. This article’s purpose is to deﬁne best practices for the provision of family-centered perinatal and neonatal PC and provision of support to bereaved families experiencing anticipated and unanticipated life-limiting conditions or death of their infant. An overview of core concepts and values is presented, followed by intervention strategies to promote an integrated family-centered approach to palliative and bereavement care. The concluding section presents evidence-based recommendations.
NIGERIAN JOURNAL OF CLINICAL PRACTICE, 2015; 18 (7): 15-19. The Hippocratic Oath has often been referred to as the ethical foundation of medical practice with the key restriction “cause no harm,” which is also the principle of benevolence in bioethics. In the medical profession, the Oath still exemplifies the key virtues of a doctor in its emphasis on the obligations toward the well-being of the individual patient. In management of end-stage cancer in a depressed economy such as Nigeria, we frequently encounter a wide range of ethical issues that arise in the provision of palliative care (PC) mostly due to the prevailing economic situation and cultural setting. Since most of these patients came from a lower economic class of the society, with little or no formal education and lived at a subsistence level, they often find it difficult to provide the medications needed. In a poor setting where health inequity is rife, and ignorance and poverty are commonplace, a good understanding of medical ethics with a good model of health care system will contribute to the health professional’s decision-making that will be in the best interest of the patients. Physicians must protect the lives of their patients and should never hasten their death. In end-stage cancer management, we have to relieve suffering and pains, promote PC, and give psychological support but never abandoning the patient or initiate terminating their life. This presentation is a clinical analysis of the ethical issues regarding the management of end-stage cancer patients in a poor economy with a critical overview of end-of-life issues in an African perspective.
SOCIAL SCIENCES | Online – 20 November 2015 – Almost ubiquitous hardware technology, such as smart phones, ensures that social networking sites are part of users’ everyday norms and routines. However, some are now using these new communication technologies to deal with the issues of death, dying and grief. With the hope of being able to create digital memories to leave behind for future generations, the opportunity to “live on” and become digitally immortal is seen as empowering to some: but what about those left behind? Through a review of the current literature exploring how social media are being used as a new space to grieve and mourn, this paper contributes to the literature by arguing for the need for clarity in the lexicon being used by thanatologists and other disciplines. Furthermore, it introduces the term “digital zombie” to describe the dead who remain “alive” in our digital society. The paper concludes by joining the call for further research into the nascent phenomena being generated by human-computer interaction.
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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).