Abstract
Ramages M, Cheung G: Why do older people refuse resuscitation? A qualitative study examining retirement village residents' resuscitation decisions. Psychogeriatr 2018. [E-pub ahead of print]; DOI: 10.1111/psyg.12286
There is a dearth of qualitative research on resuscitation preferences of older New Zealanders. The aim of this study was to investigate the resuscitation preferences of older New Zealanders in a retirement village or residential care setting, as well as the reasons for these preferences. There were 37 participants from two retirement villages in Auckland, New Zealand. Participants were interviewed about a hypothetical case vignette about cardiopulmonary resuscitation, and then they completed a semistructured interview. Interviews were subsequently transcribed and analyzed by two independent researchers using a thematic qualitative methodology. Results demonstrated that most of the participants (n = 25, 67.6%) decided against resuscitation, 10 (27.0%) wanted resuscitation, and 2 (5.4%) were ambivalent about their resuscitation preferences. Three main themes emerged during the data analysis regarding participants' reasons for deciding against resuscitation: (1) the wish for a natural death; (2) advanced age; and (3) a realistic awareness about the consequences of resuscitation. Responses related to the third of these had three subthemes: (1) reduced quality of life; (2) loss of personal integrity and sense of existence; and (3) concern that resuscitation could result in unnecessary costs or a burden on others. Among participants who preferred resuscitation, two main themes emerged regarding their reasons for wanting resuscitation: (1) the wish to prolong a good quality of life and (2) unrealistic expectations of resuscitation. The authors conclude that older New Zealanders in this study were able to make reasoned decisions about resuscitation based on balancing their subjective estimations of quality of life and the presumed consequences of resuscitation. The authors note that it is important therefore to educate older adults about the potential outcomes of resuscitation and explore (and document) their reasoning when discussing resuscitation preferences so that their wishes can be respected.
Weekly T, Walker N, Beck J, et al.: A review of apps for calming, relaxation, and mindfulness interventions for pediatric palliative care patients. Children 2018. [E-pub ahead of print]; DOI: 10.3390/children5020016
Patients and families increasingly use mobile apps as a relaxation and distraction intervention for children with complex, chronic medical conditions in the waiting room setting or during inpatient hospitalizations; and yet, there are limited data on app quality assessment or review of these apps for level of engagement, functionality, esthetics, or applicability for palliative pediatric patients. The pediatric palliative care study team searched smartphone application platforms for apps relevant to calming, relaxation, and mindfulness for pediatric and adolescent patients. Apps were reviewed using a systematic data extraction tool. Validated Mobile Application Rating Scale scores were determined by two blinded reviewers. Apps were then characterized by infant, child, adolescent, and adult caregiver group categories. Reviewer discussion resulted in consensus. Sixteen of the 22 apps identified were included in the final analysis. The apps operated on either iOS or Android platforms. All were available in English with four available in Spanish. Apps featured a relaxation approach (12/16), soothing images (8/16), and breathing techniques (8/16). Mood and sleep patterns were the main symptoms targeted by apps. The authors conclude that the provision of a mobile app resource summary has the potential to foster pediatric palliative care providers' knowledge of app functionality and applicability as part of ongoing patient care.
Rodrigues P, Crokaert J, Gastmans C: Palliative sedation for existential suffering: A systematic review of argument-based ethics literature. J Pain Symptom Manage 2018. [E-pub ahead of print]; DOI: 10.1016/j.jpainsymman.2018.01.013
While unanimity exists on using palliative sedation (PS) for controlling refractory physical suffering in end-of-life situations, using it for controlling refractory existential suffering (PS-ES) is controversial. Complicating the debate is that definitions and terminology for existential suffering are unclear, ambiguous, and imprecise, leading to a lack of consensus for clinical practice. The authors of this article sought to systematically identify, describe, analyze, and discuss ethical arguments and concepts underpinning the argument-based bioethics literature on PS for refractory existential suffering. The authors conducted a systematic search of the argument-based bioethics literature in PubMed, CINAHL, Embase®, The Philosopher's Index, PsycINFO®, PsycARTICLES®, Scopus, ScienceDirect, Web of Science, Pascal Francis, and Cairn. They included articles published in peer-reviewed journals till December 31, 2016, (written in English or French) that focused on ethical arguments related to PS-ES. We used the Peer Review of Electronic Search Strategies protocol (PRESS), Preferred Reporting Items for Systematic review and Meta-Analysis (PRISMA), and The Qualitative Analysis Guide of Leuven (QUAGOL) for data extraction and synthesis of themes. Results demonstrated that the authors identified 18 articles that met the inclusion criteria. Their analysis revealed mind–body dualism, existential suffering, refractoriness, terminal condition, and imminent death as relevant concepts in the ethical debate on PS-ES. The ethical principles of double effect, proportionality, and the four principles of biomedical ethics were used in argumentations in the PS-ES debate. The authors conclude that there is a clear need to better define the terminology used in discussions of PS-ES and to ground ethical arguments in a more effective way. They also recommend that anthropological presuppositions such as mind–body dualism underpin the debate and need to be more clearly elucidated using an interdisciplinary approach.
Hudson B, Hunt V, Waylen A, et al.: The incompatibility of healthcare services and end-of-life needs in advanced liver disease: A qualitative interview study of patients and bereaved carers. Palliat Med 2018. [E-pub ahead of print]; DOI.org/10.1177/0269216318756222
Liver disease represents the third commonest cause of death in adults of working age and is associated with an extensive illness burden toward the end of life. Despite this, patients rarely receive palliative care and are unlikely to be involved in advance care planning discussions. Evidence addressing how existing services meet end-of-life needs and exploring attitudes of patients and carers toward palliative care is lacking. The aim of this qualitative study was to explore the needs of patients and caregivers with liver disease toward the end of life, evaluate how existing services meet need, and examine patient and caregivers' attitudes toward palliative care. Seventeen participants (12 patients and 5 bereaved carers) were recruited from University Hospitals Bristol. Results demonstrated that participants described escalating physical, psychological, and social needs as the liver disease progressed, including disabling symptoms, emotional distress and uncertainty, addiction, financial hardship, and social isolation. End-of-life needs were incompatible with the healthcare services available to address them; these were heavily centered in secondary care, focused on disease modification at the expense of symptom control, and provided limited support after curative options were exhausted. Attitudes toward palliative care were mixed; however, participants valued opportunities to express future care preferences (particularly relating to avoidance of hospital admission toward the end of life) and an increased focus on symptomatic and logistical aspects of care. The authors conclude that the needs of patients with liver disease and their caregivers are frequently incompatible with the healthcare services available to them toward the end of life and that novel strategies, which explicitly recognize the life-limiting nature of liver disease and improve coordination with community services, are required if end-of-life care is to improve.
Mohammed S, Swami N, Pope A, et al.: “I didn't want to be in charge and yet I was”: Bereaved caregivers' accounts of providing home care for family members with advanced cancer. Psychooncol 2018. [E-pub ahead of print]; DOI: 10.1002/pon.4657
The aim of this study was to describe bereaved caregivers' experiences of providing care at home for patients with advanced cancer, while interacting with home care services. Caregivers of patients who had completed a four-month randomized controlled trial of early palliative care versus standard oncology care were recruited six months to five years after the patient's death. All patients except one (control) had eventually received palliative care. In semistructured interviews, participants were asked about their experiences of caregiving. Results demonstrated that 61 bereaved caregivers (30 intervention and 31 control) were interviewed, including spouses (33), adult children (19), and other family (9). There were no differences in themes between control and intervention groups. The core category of Taking charge encompassed caregivers' assumptions of active roles in care, often in the face of inadequate formal support. There were four interrelated subcategories: (1) Navigating the system—navigating the complexities of the home care system to access resources and support; (2) Engaging with professional caregivers—interacting with visiting personnel to advocate for consistency and quality of care; (3) Preparing for death—seeking out information about what to expect at the end of life; and (4) Managing after death—managing multiple administrative responsibilities in the emotionally charged period following death. The authors conclude that caregivers were often thrust into assuming control to compensate for deficiencies in formal palliative home care services. They suggest that policies, quality indicators, and guidelines are needed to ensure the provision of comprehensive, interdisciplinary, home palliative care.
Wagner AJM: Do not click “Like” when somebody has died: The role of norms for mourning practices in social media. Social Media Society 2018. [E-pub ahead of print]; DOI.org/10.1177/2056305117744392
Social media constitute new social spaces where the topics of death, loss, and mourning are increasingly encountered and negotiated. Users might either engage in mourning practices themselves or be confronted with other users' mourning during their everyday social media use. The omnipresence of mourning in social media poses challenges to the users and increases the need for norms on how to engage in online mourning practices and how to react toward expressions of grief and mourning. This article systematically reviews 25 internationally published journal articles on norms guiding mourning practices and (non)reactions toward these practices in social media. Three distinct types of norms related to different forms of practices are identified in the review. Results show that norms for mourning in social media are in flux and consistently negotiated between users. However, norms for mourning in social media often adhere to traditional norms that are adapted and reconfigured.