Indigenous resilience and the COVID-19 response: a situation report on the Orang Asli in Peninsular Malaysia

In this situation report, we discuss the response of the Orang Asli, the aboriginal people of Peninsular Malaysia, to COVID-19, focusing specifically on the community’s actions to protect themselves from the coronavirus during the government-imposed lockdown. Drawing from an Indigenous understanding of illness and health, the Orang Asli took the threat of the pandemic seriously and responded with proactive steps to keep their community safe, which included setting up barricades and checkpoints to control movement into their villages, performing health maintenance rituals and prayers and retreating into the forest. We argue that the Orang Asli’s response mitigated the spread of the virus into their villages. Their adaptation and resilience emphasize the need to respect their traditional knowledge and way of life, as well as the importance of strengthening the Orang Asli’s control over their traditional territories and environment.

The Militarized Arena of Medicine

The predominant metaphor in the discourse of medicine is that of war and the military. American presidents of the past century have defined important social policies in terms of battles to be fought and foes to be vanquished, physicians and patients “wage war on cancer,” and cookbooks offer recipes to fight disease. These military tropes are not innocent depictions of medical care—they shape our understanding of illness, disease, and health. Patients become battlegrounds on which doctors fight disease, yet may shoulder the responsibility for “losing.” Obituaries are replete with tributes to heroic patients and valiant battles. This chapter describes different models of medical wars with varying combinations of protagonists and enemies and the effects of such metaphors on how we perceive epidemics and practice public health. It describes the social pressures that force patients to “fight to the end” and the frequent loneliness experienced by those with serious illness.

Integrating Palliative Care Assessment Tools to Enhance Understanding of Illness Trajectory in Post-Acute Care and Long-Term Care

Objectives: To determine whether education and integration of the Gold Standard Framework Proactive Identification Guidance (GSF-PIG) and the Palliative Performance Scale (PPS) into care rounds, in post-acute care settings, can facilitate communication between the interprofessional care team to enhance understanding of illness trajectories, identifying those who would benefit from a palliative approach to care. Methods: Interprofessional care teams received training on the GSF-PIG and PPS which were integrated into weekly care rounds and completed a post-evaluation survey. A chart review was conducted for the 40 patients and residents reviewed with the GSF-PIG and PPS. Data analysis included descriptive statistics and comparisons of characteristics between patients and residents who were grouped as positive or negative on the GFS-PIG surprise question using chi square analyzes and t-tests. Results: The GSF-PIG and PPS were found to enhance communication within care teams and enhance understanding of patient and resident’s illness burden. The chart review revealed that patients and residents whom the team would not be surprised if they died within 1 year were older (p = .002), had a lower PPS score (p = .002) and had more indicators of decline (p < .001) compared to patients and residents the team would be surprised if they died within the year. Conclusion: Training interprofessional care teams on the utilization and integration of the GSF-PIG and PPS during weekly care rounds helped increase the understanding of patient and resident illness burden and illness trajectory to identify those who may benefit from a palliative approach to care.

When young children grieve: Supporting daycare children following bereavement—A parent’s perspective

Thirteen parents who lost the mother or father to their child were interviewed, using semi-structured interviews. Participants reflect on their young children’s (3–6) grief, support needs, and what they learned from this trying time. The event scarred all participants. While some moved on, others were still struggling years after. The study uncovers difficulties associated with informing a young child, with a limfited understanding of illness and loss, in a life-situation where parents themselves are clinging to hope. While support is available from daycare, it can be better organised and structured. Proactive support that assists the child through illness and death relieves the parental care burden.

Communication Experiences in Primary Healthcare with Refugees and Asylum Seekers: A Literature Review and Narrative Synthesis

Refugee and asylum seeker population numbers are rising in Western countries. Understanding the communication experiences, within healthcare encounters, for this population is important for providing better care and health outcomes. This review summarizes the literature on health consultation communication experiences of refugees and asylum seekers living in Western countries. Seven electronic databases were searched from inception to 31 March 2019. Studies were included if they aimed to improve, assess or report on communication/interaction in the primary health care consultation setting with refugees or asylum seekers, and were conducted in Western countries. A narrative synthesis of the literature was undertaken. Thematic analysis of the 21 included articles, showed that refugees and asylum seekers experience a range of communication challenges and obstacles in primary care consultations. This included practical and relational challenges of organizing and using informal and formal interpreters and cultural understanding of illness and healthcare. Non-verbal and compassionate care aspects of communication emerged as an important factor in helping improve comfort and trust between healthcare providers (HCP) and refugees and asylum seekers during a healthcare encounter. Improvements at the systems level are needed to provide better access to professional interpreters, but also support compassionate and humanistic care by creating time for HCPs to build relationships and trust with patients.

A city in (un)health: learning through physical or Mental Suffering in Ancient Greek Tragedies

The spread of healing cults and practices of the 5th century. BC. inspired tragedians to search for new forms of depicting heroes suffering from physical or mental illnesses. The understanding of illness in tragedies contrasted with their rational understanding, affirmed the divine origin of painful suffering and the possibility of learning through them. In Aeschylus, Sophocles and Euripides, heroes suffering from diseases are often in the role of students, and those around them are in the role of mentors, helping to cope with the disease or just observing its course. The article discusses different strategies for teaching heroes through mental or physical illness, presented in the tragedies "Orestes", "Ajax" and "Philoctetus". The pedagogical dimension of the formula "resentment - illness - death / threat of death" is considered as explaining the peculiarities of the dramatic representation of the city as a space of (un)health.

Gasping for air: measuring patient education and activation skillsets in two clinical assessment contexts

Objective structured clinical examinations (OSCEs) provide a controlled, simulated setting for competency assessments, while unannounced simulated patients (USPs) measure competency in situ or real-world settings. This exploratory study describes differences in primary care residents’ skills when caring for the same simulated patient case in OSCEs versus in a USP encounter. Data reported describe a group of residents (n=20) who were assessed following interaction with the same simulated patient case in two distinct settings: an OSCE and a USP visit at our safety-net clinic from 2009 to 2010. In both scenarios, the simulated patient presented as an asthmatic woman with limited understanding of illness management. Residents were rated through a behaviourally anchored checklist on visit completion. Summary scores (mean % well done) were calculated by domain and compared using paired sample t-tests. Residents performed significantly better with USPs on 7 of 10 items and in two of three aggregate assessment domains (p<0.05). OSCE structure may impede assessment of activation and treatment planning skills, which are better assessed in real-world settings. This exploration of outcomes from our two assessments using the same clinical case lays a foundation for future research on variation in situated performance. Using both assessments during residency will provide a more thorough understanding of learner competency.

Medicalization as a way of life

Most debates on postwar mental health focus on clinical evaluations of veterans’ and civilians’ individual experiences of wartime ‘trauma’. But the psychological afterlife and the social discord that wars create cannot be reduced to a clinical artifact of individual trauma or be divorced from the historical and cultural meanings that it carries. Generations of war children will continue to remember, process, and work through cultural changes that quietly inscribe past war experiences in their daily lives. This article examines one such cultural shift, namely the medicalization of the memories of the Iran-Iraq War. It illustrates how individuals’ PTSD-like symptoms or alleged depreshen turn the seemingly desocializing act of medicalization on its head, and how diagnosis can become a cultural resource to resocialize the war in the sanitized language of biomedicine. It further suggests that moving beyond an individual and clinical rendition of trauma requires the integration of an anthropological understanding of illness and its cultural situatedness into medical pedagogies.

Serious Illness Conversations in Pediatrics: A Case Review

The Serious Illness Conversation Guide program developed by Ariadne Labs, a Joint Center for Health Systems Innovation, includes a list of patient-centered questions designed to assist clinicians to gain a more thorough understanding of their patient’s life in order to inform future care decisions. In July 2017, specialist pediatric palliative care clinicians at Canuck Place Children’s Hospice (CPCH) (Vancouver, BC, Canada), adapted the original guide to use with parents of children with serious illness. This tool is referred to as the Serious Illness Conversation Guide-Peds (SICG-Peds). Using the SICG-Peds, along with enhanced communication skills, can help illuminate the parents’ (child’s) understanding of illness and the values they hold. Expanding the application of the guide will promote goal-based, efficient, comprehensive and consistent communication between families and clinicians and help ensure that seriously ill children receive care that is tailored to their needs through the disease trajectory. This paper explores the guide through the lens of a case study. The steps—seeking permission, assessing understanding, sharing prognosis and exploring key topics (hopes, fears, strengths, critical abilities and trade-offs)—as well as formulating clinician recommendations, are described.

Mind the Gap

The “narrative turn” in biomedical discourses has dominated twenty-first-century medical humanities, pursuing the premise that narratives of illness, including patient and literary narratives, contribute toward our understanding of illness because they encourage us to reflect upon lived reality and even to imagine events and experiences with which we may be grossly unfamiliar (Charon et al.; Charon; Oyebode; Halpern; Altschuler). However, an emerging critical approach to the medical and health humanities challenges the assumption that narrative is incontestably and straightforwardly valuable for understanding illness. Following the work of Ahmed, Keen, Bishop, Jurecic, Whitehead and Woods, and Whitehead, the article suggests that narrative fiction may not cultivate empathy for another person, but may draw attention to the limitations of understanding another’s experience by encouraging us to look out for, and even to imagine, the multiple ways in which we experience the world differently to others. With a focus on the experience of dementia-related diseases—including Alzheimer’s disease—in B. S. Johnson’s House Mother Normal, the article shows that metafiction may not help us to empathize with others so much as it may problematize our ability to empathize in ways that are ethically valuable for an understanding of subjectivity, illness, and experience.