Media Watch is a weekly report intended as an advocacy, education, and research tool. Published by Barry R. Ashpole, a Canadian communications consultant and educator, Media Watch 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.
AMERICAN JOURNAL OF NURSING RESEARCH, 2018;6(3):82-86. The authors identify the most commonly reported problems associated with the psychological well-being and quality of life (QoL) among palliative care (PC) nurses. All nurses who provide PC for patients suffering from life-threatening conditions should be well trained and prepared to provide quality care for patients and cope effectively with the stressors they might face. This study provides important recommendations to support PC nurses and overcome different challenges that they face. Considering the authors’ recommendations, improving nurses’ psychological health and QoL is essential to help them provide quality PC for patients. However, additional research is needed to identify the most effective methods for improving PC nurses’ psychological health and QoL.
BMC PALLIATIVE CARE | Online – 16 April 2018 – Symptom management is an essential aspect of palliative and end-of-life (EoL) care, but evidence suggests that patients’ symptoms may not always be relieved, causing significant harm to patients and magnifying their relatives’ distress. A growing body of evidence focuses on symptom management at the EoL, but research funding for palliative care (PC) remains disproportionately low. The Palliative & End-of-Life Care Priority Setting Partnership undertook a U.K.-wide survey to establish research priorities within palliative and EoL care and disseminated its results in 2015. Much of the data were related more broadly to personal perceptions and experiences rather than specific research questions. The majority of responses related to symptoms that were sub-optimally managed, in particular pain. Nutrition and hydration were of significant concern, particularly for carers. Overall, respondents consistently asked about the most effective, evidence-based methods for managing symptoms and suggested areas where further research is necessary. This study highlights the perceptions and experiences of patients, families and professionals within PC, highlighting the need for improved care, communication and further research to establish which treatments are most effective within a PC population.
BMC PALLIATIVE CARE | Online – 27 March 2018 – This study identifies a need for paper-based aids that support and empower patients to initiate meaningful advance care planning (ACP). All examined aids presented ACP solely within an end-of-life (EoL) framing. The findings suggest that to meet patients’ needs and create patient-centered ACP aids, active patient involvement is a necessary, and often missing, component and ACP aids need to explore framing beyond specific EoL care situations. By identifying and classifying different categories of paper-based ACP aids, the study provides a useful framework that clinicians might use to help inform the selection of an ACP aid that is most appropriate to their patients and to alternative decision makers. Additionally, these findings have helped guide the development of a new ACP aid, and have provided a framework by which future ACP aids might be measured.
CUREUS JOURNAL OF MEDICAL SCIENCE | Online – Accessed 12 April 2018 – When patients approach the end of life, they are often faced with a challenging multidimensional burden while navigating a complex health care system. Patients and families/caregivers are faced with daily decisions, often with little or no frame of reference or medical knowledge. The “what, how, when, and where” puzzle during this challenging time can be overwhelming for patients and their families, and when clinicians do not contemplate this associated workload’s impact on patients and caregivers’ capacity for self-care, patients and caregivers scramble to find compensatory solutions, often putting their health care at lower priority. This consequently warrants the underlying importance of palliative care (PC) and integrating it into the patients’ health care plans earlier. There is increasing evidence from recent trials that supported implementing national policies regarding the early integration of PC and its role in improving the quality of life, increasing survival, and supporting patients’ and caregivers’ values when making decisions about their health care while possibly minimizing the burden of illness.
INTERNATIONAL JOURNAL OF CLINICAL MEDICINE, 2018;9(3). Despite competing healthcare systems demands in Sub-Saharan Africa (SSA) counties because of the “needs versus resource” tensions, health care policy makers/managers in SSA countries need to work on the issue of a dignified, death trajectory at end of life (EoL) that is as free of pain and suffering as possible for its citizenry, whilst continuing to battle the ravages of preventable and chronic illnesses known to contribute to high mortality and morbidity. In so doing they should be careful not to be caught up in setting up EoL or palliative care (PC) services that will assume a “business role,” as opposed to a value-based PC system. In developing viable “development appropriate” PC services, SSA countries can seek assistance from organisations in developed economies with the appropriate experience and expertise in setting up appropriate cost-saving PC systems, especially in the public health sector. For the citizens of SSA countries who are challenged day-to-day by existential difficulties, the creation of a working, ably managed PC service may allow them to find peace and dignity at EoL.
ONCOLOGY | Online – 15 April 2018 – This article reviews the ways in which palliative care (PC) and oncology teams can collaborate to provide high-quality care to patients and their families; it also provides practical tips for oncologists who wish to initiate primary PC for their patients. Prior to referral to a specialized interdisciplinary PC team, oncologists may start advance care planning discussions, provide basic pain and non-pain symptom relief, and utilize assessment tools. If a specialized PC team is not available, the oncologist will often address additional aspects of PC, with assistance from social work departments and other resources in the community.
SUPPORTIVE CARE IN CANCER | Online – 29 March 2018 – Impacts from volunteer befriending or neighbour services may be achieved through volunteers taking a more practical/goal-based orientation to their role and/or taking a more relational and emotional orientation based on conversation, sharing stories and expressing feelings. The exact combination and weighting given to both of these aspects of the role must be determined by the needs of the patient and their relationship with the volunteer. Training of volunteers must equip them to be aware of these differing elements of the role and sensitive to when it is necessary to depend on one facet of the role or the other. Clinicians can support volunteer-provided befriending services, as these appear to have emotional and social benefits which clinical services may struggle to provide. This research identifies the domains these services have influence in, and the challenge for future researchers is to identify how to measure impact across these domains to enable targeting of services where resources (e.g. volunteers) may be limited. This is one of the largest qualitative studies of volunteers providing care towards the end of life and has particular strengths in its focus on the voice of people being supported as well as those of staff or volunteers.
SLOVENIAN JOURNAL OF PUBLIC HEALTH, 2018;57(2):55-64. During advanced stages of chronic life-limiting diseases, patients might benefit from palliative care (PC). Many in the Western world wish to remain at home during this palliative phase and to die there. Therefore, general practitioners (GPs) should play an important role in PC provision. In Slovenia, this is challenging since the average consultation time per patient is 7 minutes, and GPs do not receive extra payment for home visits. Other barriers in PC provision are the lack of knowledge, PC skills and experience, sub-optimal communication with patients and with other healthcare professionals, and the uncertainty and unpredictability of illness trajectories, especially in non-cancer illnesses. Therefore, PC is often restricted to physical symptom relief in the terminal phase, including emergency visits by the GP, transfers and unplanned hospital admissions. Moreover, 4% of the elderly Slovenian population has severe limitations, for which they do not receive any care. Without a universally accepted definition of “early” PC, the dilemma arises of marking the right moment to start anticipatory PC alongside or instead of disease-oriented care in the advanced stages of chronic diseases. Physicians can approach this dilemma by (silently) asking themselves the surprise question: “Would I be surprised if this patient died within the next 12 months?” PC, including anticipating future problems, needs and wishes, would be indicated if the answer to this question was “no.” The usefulness of this question has been validated in different populations. However, two recent reviews conclude that there is a wide range in accuracy and that further research is needed to develop more accurate tools. Therefore, the second question was formulated: “Would I be surprised if this patient was still alive in 12 months?”