BEHAVIORAL SCIENCES, 2017; 7(2): 18. As a society, we simply don’t talk about this universal experience called dying and death; in fact, we ignore it until we have to face it. Thus, it is often in a crisis experience when we have to make decisions while we are laden with uncertainty and intense emotions. Sixty percent of people say making sure their family is not burdened by tough decisions is extremely important, yet 56% of them have not held a conversation about its context. Instead of waiting to make end-of-life decisions, let us begin to think about what matters most while we are living, what we value most, and how we translate these values into conversations about what is important. As a public health concern, if we can upstream the advance care planning discussion into usual health promotion activities, perhaps, as a society, we can begin to normalize and reshape how we make decisions about the last chapters of our lives.
BEHAVIORAL SCIENCES | Online – 25 March 2017 – The death of a loved one is an emotional-laden experience, and while grief and mourning rituals are less formal today in many communities, there remain some social norms for individuals to process loss. The death of an ex-family member, such as a former spouse, is more complicated and expectations for how to respond are fraught with uncertainty. While grief has been studied and is primarily understood as an individual cognitive process, scholars in sociology and communication are considering the ways in which grief and mourning are social and take place in dialogue with others. This article explores the concept of disenfranchised grief, which is “grief that is experienced when loss cannot be openly acknowledged, socially sanctioned, or publicly mourned” through the author’s experience of the death of her ex-husband.
INDIAN JOURNAL OF PALLIATIVE CARE, 2017; 23(2): 199-206. The authors of this study concluded that the greatest barrier ... to providing pediatric end-of-life care (EoLC) ... was dealing with an angry family member. In addition, multiple physicians involved in the care of one patient who differ in opinion about the direction of care was rated as the greatest barrier related to healthcare professionals ... and, no available support person for the family such as a social worker or religious leader was rated as the greatest organizational-related barrier. Furthermore, having family members accept that the pediatric patient is dying was rated as the greatest facilitator related to patient-family ... As well, physicians’ agreement about the direction of pediatric EoLC was rated as the greatest facilitator related to healthcare professionals. The greatest facilitating factor dealing with organizational support was allowing family members adequate time to be alone with a pediatric patient after he or she has died.
JOURNAL OF POST-ACUTE & LONG-TERM CARE MEDICINE | Online – 13 April 2017 – The authors undertook a mapping exercise in 29 European countries ... Through a descriptive and thematic analysis of survey data, they identified factors that contribute to the development and implementation of palliative care (PC) into care homes at different structural levels. A typology of PC implementation for the care home sector was developed and applied to the countries surveyed. The authors identified three levels of PC implementation: 1) Macro (national/regional policy, legislation, financial and regulatory drivers); 2) Meso (implementation activities, such as education, tools/frameworks, service models, and research); and, 3) Micro (PC service delivery). This typology was applied to data collected from 29 European countries and demonstrates the diversity of PC implementation activity across Europe with respect to the scope, type of development, and means of provision. The authors found that macro and meso factors at two levels shape PC implementation and provision in care homes at the micro organizational level. At a time of great demographic change and increased financial pressures, care homes are an important component of the health and social care economy, especially for a significant proportion of frail older people. They are also the place where these people will experience their dying and deaths.
THE LANCET | Online – 15 April 2017 – More than 128·6 million people across 33 countries require life-saving humanitarian assistance, 92·8 million of whom are particularly vulnerable. Palliative care (PC), however, has been omitted from efforts to tackle humanitarian crises. PC is, according to the World Health Organization, “an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering.” The authors propose holistic PC as an integral component of relief strategies. PC is especially applicable in four humanitarian scenarios. First, in protracted humanitarian crises for patients with life-limiting illnesses whose pre-crisis PC is interrupted and for those whose PC needs are unmet or exacerbated as a result of the crises. Older people are the most prominent group here, given their vulnerability and poorly identified and understood healthcare needs. Second, in mass casualty events where resources are overwhelmed by acute injuries and individuals are triaged according to their likelihood of survival. Third, in communicable disease outbreaks with high mortality and limited therapeutic interventions where relief of suffering can be the main treatment option available ... Fourth, in camps for refugees and displaced people where some individuals need PC during transition through the camp.
TREMOR & OTHER HYPERKINETIC MOVEMENTS | Online – 11 April 2017 – Huntington disease is a fatal, autosomal dominant, neurodegenerative disorder manifest by the triad of a movement disorder, behavioral disturbances, and dementia. At present, no curative or disease-modifying therapies exist for the condition and current treatments are symptomatic. There is increasing evidence of the benefit of palliative care (PC) throughout the course of neurodegenerative conditions including Parkinson disease and amyotrophic lateral sclerosis. However, beyond its application at the end of life, little is known about the role of PC in Huntington disease. The authors discuss what is known about PC in Huntington disease, specifically related to early disease burden, caregiver burnout, advance care planning, and end-of-life care.
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).