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 INTERNATIONAL HUMANITARIAN ACTION | Online – 3 September 2018 – Wars, disasters, and epidemics affect millions of individuals every year. International non-governmental organizations respond to many of these crises and provide healthcare in settings ranging from a field hospital deployed after an earthquake, to a health clinic in a longstanding refugee camp, to a treatment center during an infectious disease outbreak. The primary focus of these activities is to save lives. However, inevitably, many patients cannot be saved. The authors undertook an interpretive description study to investigate humanitarian policy-maker and care providers’ experiences and perceptions of palliative care during humanitarian crises. They report on interviews with 23 health professionals, 11 of whom also had experience as policy-makers within a humanitarian organization. The authors use the concept of moral experience as an analytic lens: participants’ experiences of values that they held to be important being realized or thwarted as they responded to the needs of patients who were dying or likely to die. Five themes related to participants’ moral experiences were identified, all of which relate to values of compassion in the provision of care, and justice in accessing it: 1) Participants described intervening to ease the suffering of dying patients as an inherent aspect of humanitarianism and their duty as health professionals; 2) Participants also expressed that upholding dignity was of critical importance, stemming from a recognition of shared humanity and as an act of respect; 3) Since humanitarian action is provided in situations of scarcity, prioritization is inescapable. (Acknowledging the primacy of curative care in emergencies, participants also emphasized the importance of ensuring that care for the dying was attended to, including during triage); 4) Participants reported working within and pushing against systemic constraints such as legal or logistical barriers to opioids, lack of guidelines, and conflicting views with colleagues; and, 5) Given the stakes involved, participants felt a heavy weight of responsibility and described their challenges in carrying it. These findings illuminate experiences responding to patients who are dying or likely to die, and how these connect with the values of humanitarian health professionals, sometimes resulting in dissonance between values and actions. They also point to the need to make more space for palliative, alongside curative, approaches to care in situations of humanitarian crises, ideally by further integrating them.
JOURNAL OF THE ROYAL COLLEGE OF PHYSICIANS OF EDINBURGH, 2018;48(3):217-224. Communication between professionals, patients and families about palliative and end-of-life care after stroke is complex and there is a need for educational resources in this area. 599 healthcare professionals responded to an electronic survey. Educational topics that were either definitely or probably needed were: ensuring consistent messages to families and patients (88%); resolving conflicts among family members (83%); handling unrealistic expectations (88%); involving families in discussions without them feeling responsible for decisions (82%); discussion of prognostic uncertainties (79%); likely mode of death (72%); and oral feeding for 'comfort' in patients at risk of aspiration (71%). Key topics of unmet need for education in end-of-life care in stroke have been identified and these have influenced the content of an open access, web-based educational resource.
CA: A CANCER JOURNAL FOR CLINICIANS | Online – 13 September 2018 – Over the past decade, a large body of evidence has accumulated supporting the integration of palliative care (PC) into oncology practice for patients with advanced cancer. The question is no longer whether PC should be offered, but what is the optimal model of delivery, when is the ideal time to refer, who is in greatest need of a referral, and how much PC should oncologists themselves be providing? These questions are particularly relevant given the scarcity of PC resources internationally. In this state‐of‐the‐science review directed at the practicing cancer clinician, the authors first discuss the contemporary literature examining the impact of specialist PC on various health outcomes. Then, conceptual models are provided to support team‐based, timely, and targeted PC. Team‐based PC allows the interdisciplinary members to address comprehensively the multidimensional care needs of patients and their caregivers. Timely PC, at its best, is preventive care to minimize crises at the end of life. Targeted PC involves identifying the patients most likely to benefit from specialist PC interventions, akin to the concept of targeted cancer therapies. Finally, the strengths and weaknesses of innovative care models, such as outpatient clinics, embedded clinics, nurse‐led PC, primary PC provided by oncology teams, and automatic referral, are summarized. Moving forward, more research is needed to determine how different health systems can best personalize PC to provide the right level of intervention, for the right patient, in the right setting, at the right time.
EVIDENCE-BASED NURSING | Online – 15 September 2018 – Building on existing research, this study uniquely obtains the patients’ perspective, highlighting how patients are hesitant to discuss issues of death and dying with medical doctors and how they do not always fully understand the remit of palliative care (PC) and what it may mean for them and their illness. There is a common misperception that doctors’ interests are solely focused on the disease, active treatment and cure. When professionals do not use a shared language about PC, offer toned-down language or avoid direct discussion about death and dying, they are not supporting their patients. Instead, they are encouraging misunderstanding and false hope which can be a major barrier to patient well-being and the uptake of supportive services. Successful communication in this context involves bearing witness, supporting patients in their distress and discussing ways to optimise the life that they have yet to live. Although we already have checklists, guides and communication training, more engaged therapeutic approaches are needed, mindful of the very delicate space these communicative needs occupy. There is also a broader issue highlighted here, a total focus on disease negates the patients’ experience of the illness. Having knowledge of how that illness experience is being lived is helpful for professionals to provide compassionate and patient-centred care.
ITALIAN JOURNAL OF MEDICINE | Online – 10 September 2018 – Since a large number of patients with chronic medical diseases die in hospital, often in an internal medicine ward, internists are urged to improve their expertise in end-of-life care (EoLC), which is a neglected part of their academic education. Recently, the Italian Federation of the Associations Hospital Doctors on Internal Medicine has addressed EoL-medicine in many ways, promoting many scientific meetings on this and allied topics, providing educational material made available in its website on a free basis and establishing an ad hoc committee charged with the task of organizing dedicated events annually. The Committee has also elaborated a series of recommendations on EoLC in internal medicine (a decalogue), reflecting largely shared visions. It has been endorsed also by the Association of the Italian Nurses working in an internal medicine department). The decalogue for EoLC in internal medicine is issued here, and calls for its diffusion and implementation. The driving concept is that doctors and nurses must feel responsible for disregarding appropriate EoLC for the dying patients, because delaying it means to add suffering and discomfort to them in the final phase of their existence.
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CHILDREN | Online – 31 August 2018 – Among the over 21 million children with life-limiting conditions worldwide that would benefit annually from a pediatric palliative care (PPC) approach, more than eight million would need specialized PPC services. In the U.S. alone, more than 42,000 children die every year, half of them infants younger than one year. Advanced interdisciplinary PPC for children with serious illnesses is now an expected standard of pediatric medicine. Unfortunately, in many institutions there remain significant barriers to achieving optimal care related to lack of formal education, reimbursement issues, the emotional impact of caring for a dying child, and most importantly, the lack of interdisciplinary PPC teams with sufficient staffing and funding. Data reveals the majority of distressing symptoms in children with serious illness (such as pain, dyspnea and nausea/vomiting) were not addressed during their end-of-life period, and when treated, therapy was commonly ineffective. Whenever possible, treatment should focus on continued efforts to control the underlying illness. At the same time, children and their families should have access to interdisciplinary care aimed at promoting optimal physical, psychological and spiritual wellbeing. Persistent myths and misconceptions have led to inadequate symptom control in children with life-limiting diseases. PPC advocates the provision of comfort care, pain, and symptom management concurrently with disease-directed treatments. Families no longer have to opt for one over the other. They can pursue both, and include integrative care to maximize the child’s quality of life. Since most of the sickest children with serious illness are being taken care of in a hospital, every children’s hospital is now expected to offer an interdisciplinary palliative care service as the standard of care. The authors address common myths and misconceptions which may pose clinical obstacles to effective PPC delivery and discusses the four typical stages of PPC program implementation.
THE PATIENT – PATIENT-CENTERED OUTCOMES RESEARCH | Online – 24 August 2018 – Measuring the quality of care (QoC) at the end of life (EoL) and/or the quality of dying and death can be challenging. Some measurement tools seek to assess the QoC immediately prior to death; others retrospectively assess, following death, the quality of EoL care. The comparative evaluation of the properties and application of the various instruments has been limited. This systematic review has identified and critically appraised tools for assessing, following death, the QoC at the EoL and of dying and death. This evaluation demonstrates that a limited number of tools exists and that they show some promising psychometric properties but still need further investigation. Despite the abundance of tools available to assess the quality of dying and death and satisfaction with care at the EoL, many gaps remain in our understanding of the psychometric properties of these tools. Future research, rather than seeking to develop new tools, might more productively focus on improving and validating existing tools.