Purpose: Most people are familiar with the expression ‘laughter is the best medicine’. By enhancing cognitive flexibility and strengthening relationships, laughter can be considered a holistic care-approach. Yet, in medical oncology, especially the palliative phase, using humour can be considered inappropriate or taboo. We aimed to explore the acceptability and functions of humour and laughter in patients with prolonged incurable cancer.
Methods: This study was performed in a Dutch Comprehensive Cancer Centre. We included four short conversations with patients, eighteen in-depth patient-interviews and eleven observational fieldnotes in which humour was a major topic of the conversation. We further administered an online questionnaire to thirty-three oncology clinicians about their experiences with humour. Qualitative data were thematically analysed. We specifically distinguished between humour and laughter.
Results: Nearly all specialists reported using humour (97%), and all reported sometimes laughing during consultations; 83% experienced a positive effect of laughter. These results were in line with patients’ experiences: Patients noted that humour always stayed alive despite medical difficulties. Apart from this human aspect, patients also used humour to broach difficult topics and downplay challenges. Patients and specialists acknowledged that using humour is sometimes inappropriate, partly because they did not always share the same humour. Laughter, in contrast, was regarded as ‘lighter’ than humour, and could, accordingly, more easily be implemented. Specialists cautioned against patients using laughter to avoid broaching difficult topics.
Conclusion: Many conversations were full of laughter. Hierarchy as usually experienced between healthcare professionals and patients/relatives seemed to disappear when using laughter. If applied appropriately, adding shared laughter may help optimize shared decision-making.
Purpose: Tai Chi is increasingly being used as a complimentary therapy in hospice care to help patients self-manage multiple and complex health needs. However, currently there is limited understanding of Tai Chi from patients’ perspective, including what participation in this mindfulness based movement (MBM) exercise means to their experiences of living with an advanced, incurable disease. The purpose of this study was to explore outpatients’ lived experiences of hospice-based Tai Chi in relation to mindfulness.
Methods: 19 participants (15 females; 4 males, aged between 50 and 91 years old) with a range of advanced, incurable diseases (cancer, COPD, pulmonary fibrosis, pulmonary arterial hypertension) who attended day therapy at a local hospice took part in Tai Chi sessions. Using a focused ethnographic approach, multi-methods including 17 semi-structured interviews (averaging 40 min), participant observations (equating to 200 h spent in the day therapy unit), and informal conversations were used to collect data over a 6 month period. Data was analysed using a thematic framework approach.
Results: Four main themes were constructed that demonstrated participants’ lived experiences of mindfulness during participation in hospice-based Tai Chi sessions. Main themes included: (1) mind-body respite; (2) being present with others; (3) tranquil and therapeutic atmosphere and; (4) physical limitations.
Conclusion: Tai Chi may be an important therapeutic strategy for helping patients with advanced, incurable disease experience mindfulness. The findings of this study support the use of MBM exercises such as Tai Chi as a non-pharmacological adjunct to conventional treatments within palliative care settings.
Gender inequality in the form of gender-based violence manifests throughout the course of women's lives but has a particularly unique impact at end of life. We sampled 26 patients and 14 caregivers for this qualitative critical ethnographic study. The study purpose was to describe the lived experience of female palliative care patients in rural Malawi and their caregivers. The specific aims were to (i) analyse physical, spiritual and mental health needs and (ii) guide best healthcare practice. The study was informed by feminist epistemology, which drew us to an analysis focused on how gender inequality and gender-based violence affect the care of those with terminal illness. In this article, based on our findings, we demonstrate how gender inequality manifests through the intersecting gendered vulnerabilities of patients and their caregivers in rural Malawi. The findings specifically provide insight into the gendered nature of care work and how the gendered life trajectories of both patients and caregivers intersect to impact the health and well-being of both groups. Our findings have implications on how palliative care can be scaled up in rural Malawi in support of women who are experiencing intimate partner violence at end of life, and the caregivers responsible for their well-being.
Dans les Andes, les humains partagent nourritures et boissons avec leurs morts et scellent un pacte de réciprocité où les morts assureront pluies et bonne chance aux vivants tandis que ces derniers s’engageront à les alimenter. On se demandera d’abord pourquoi offrir des dons physiques à des entités dépourvues de corporéité puis ce qui incite défunts et vivants à se dévorer mutuellement pendant la période du retour des morts, à la Toussaint. On verra que ce cannibalisme symbolique permet un transfert d’énergie vitale entre morts et vivants.
À la Toussaint, les populations amérindiennes du Mexique déposent des aliments et des boissons sur les tombes et les autels dressés dans les maisons, afin d’apporter un réconfort aux morts réputés être engagés dans un épuisant cheminement post-mortem. Quel sens attribuer à cette « vitalité » post-mortem ? Comment expliquer que des êtres, que l’on ne peut percevoir, puissent se mouvoir et consommer des aliments ? En s’appuyant sur les résultats d’une enquête ethnographique réalisée chez les Mixe de l’État de Oaxaca, cet article apporte des éléments de réponses à cette interrogation. En même temps que la mise au jour des conceptions relatives aux mécanismes physiologiques à l’œuvre chez les morts, l’enjeu est de déterminer quelles relations sociales les vivants établissent par l’intermédiaire de la nourriture et des boissons avec ces êtres au statut ambivalent à qui les familles doivent rendre hommage tout en maintenant une certaine distance.
BACKGROUND: People of Black and minority ethnic heritage are more likely to die receiving life supporting measures and less likely to die at home. End-of-life care decision making often involves adult children as advance care planning is uncommon in these communities. Physicians report family distress as being a major factor in continuing with futile care.
AIM: To develop a deeper understanding of the perspectives of elders of Black and minority ethnic heritage and their children, about end-of-life conversations that take place within the family, using a meta-ethnographic approach.
DESIGN: Systematic interpretive exploration using the process of meta-ethnography was utilised.
DATA SOURCES: CINAHL, MEDLINE, PubMed and PsycINFO databases were searched. Inclusion criteria included studies published between 2005 and 2019 and studies of conversations between ethnic minority elders and family about end-of-life care. Citation snowballing was used to ensure all appropriate references were identified. A total of 13 studies met the inclusion criteria and required quality level using Critical Appraisal Skills Programme.
RESULTS: The following four storylines were constructed: 'My family will carry out everything for me; it is trust'; 'No Mum, don't talk like that'; 'I leave it in God's hands'; and 'Who's going to look after us?' The synthesis reflected the dichotomous balance of trust and burden avoidance that characterises the perspectives of Black and minority ethnic elders to end-of-life care planning with their children.
This ethnographic study draws on the experiences of members of interdisciplinary care teams working with end-of-life care patients to identify strategies to improve quality of life through care practices. We surveyed 133 staff and volunteers (physicians, physician assistants, nurse practitioners, registered nurses, social workers, chaplains, administrators, and volunteers) who provide end-of-life care to patients in both home and institutional settings for 4 organizations in 2 counties in Upstate New York. Survey responses were analyzed using qualitative content analysis. The results identified numerous strategies to enhance and safeguard quality of life for end-of-life care patients and their family members. These strategies can be categorized into 6 domains: organization philosophy and mission; organizational policies; caregivers' behaviors and practices; symptom management; facility design, operation and management; and patient, family member, and caregiver experience. The diverse list of identified strategies indicates that improving care to address the unique, complex, multilayered dimensions of quality of life at the end of life requires a multidisciplinary approach and consistency among care providers, including administration, clinical management, front-line caregivers, and support staff. When all of these strategies are used in harmony, care can truly be enhanced.
PURPOSE OF REVIEW: Qualitative research in the field of palliative care allows for a crucial study of the final stage of life from a social point of view and cultural perspective. This review evaluates the advantages and challenges of applying an ethnographic approach to palliative care research.
RECENT FINDINGS: Thirteen ethnographic articles on organization or quality of care, decision-making, delirium, death, and the process of dying, were reviewed. Most studies use interviews, participant observation, and field notes as their primary data collection techniques. In ethnographic research, cultural issues, relationships and interactions of a group, the meanings and perceptions of the participants, the communication process, and the use of language in a particular and natural context were analyzed. Data collection and information analysis took an average of 14 months in the included studies.
SUMMARY: The ethnographic method, applied with rigor, is valuable in the analysis of a real phenomenon if the particular context in which the study developed is well defined. With an ethnographic approach, researchers can uncover cultural nuances that evidence different realities.
OBJECTIVE: To analyze the constitution of homes and medical-social establishments as possible spaces for the end of life in Brazilian and French scenarios.
METHOD: An ethnographic study in homes and medical-social establishments carried out in Porto Alegre and Grenoble, between October 2014 and October 2016. Participants were six people with end-of-life cancer and four family caregivers. Data was submitted to cultural analysis.
RESULTS: We showed how the (re)configurations of the home space and the medical-social establishments occur to receive people at end-of-life stage by two categories: "They don't know where I live": the home as a space for the end of life and "They are good here, but in another way": care in medical-social settings.
CONCLUSIONS: The (re)definition of the space where we die takes place based on the culture, besides the social and economic conditions of the families to receive the person at the end of life. In both spaces, home and medical-social establishments, we found that sickness and the end of life are still cross-permeated and signified according to the knowledge of health, in such a way that it continues to medicalize death and the dying process, even outside the hospital.
Dans cette enquête ethnographique, l'auteure donne la parole aux détenus en fin de vie pour interroger l'expérience de la maladie grave et le sens de la punition. L'analyse du soin, de la mort et de la peine fondée sur des observations et des entretiens menés auprès des détenus et des professionnels de la surveillance et du soin font émerger deux dimensions fondamentales : l'espace et le temps.
BACKGROUND AND OBJECTIVES: Agitation is common in people living with dementia especially at the end of life. We examined how staff interpreted agitation behavior in people with dementia nearing end of life, how this may influence their responses and its impact on the quality of care.
RESEARCH DESIGN: Ethnographic study. Structured and semi-structured non-participant observations (referred to subsequently in this paper as "structured observations") of people living with dementia nearing the end of life in hospital and care homes (south-east England) and in-depth interviews with staff, conducted August 2015-March 2017.
METHODS: Three data sources: 1) detailed field notes, 2) observations using a structured tool and checklist for behaviors classed as agitation and staff and institutional responses, 3) staff semi-structured qualitative interviews. We calculated the time participants were agitated and described staff responses. Data sources were analyzed separately, developed continuously and relationally during the study and synthesized where appropriate.
RESULTS: We identified two main 'ideal types' of staff explanatory models for agitation: In the first, staff attribute agitated behaviors to the person's "moral judgement", making them prone to rejecting or punitive responses. In the second staff adopt a more "needs-based" approach in which agitation behaviors are regarded as meaningful and managed with proactive and investigative approaches. These different approaches appear to have significant consequences for the timing, frequency and quality of staff response. While these models may overlap they tend to reflect distinct organizational resources and values.
CONCLUSIONS: Care worker knowledge about agitation is not enough, and staff need organizational support to care better for people living with dementia towards end of life. Positional theory may help to explain much of the cultural-structural context that produces staff disengagement from people with dementia, offering insights on how agitation behavior is reframed by some staff as dangerous. Such behavior may be associated with low-resource institutions with minimal staff training where the personhood of staff may be neglected.
The right to die is an issue is predicated on larger cultural understandings of autonomy. Autonomy, in turn, is centered around assumptions of choice, that individuals are able to make health-related decisions based on a rational calculation. In such a way, a medically assisted death is differentiated from suicide. Through an ethnographic study of right-to-die activists in North America and Australia and how they understand ideals of “good deaths,” this article will complicate this view by examining the ethical subject constructed by such activism that reveals autonomy to be a useful guiding fiction that mask larger ethical relationships.
Narratives that frame the end of life with dementia as undignified reveal moral claims on which lives are considered worth living. These claims are deeply rooted in the medicalization of death and its appeal to dignity. Drawing from ethnographic fieldwork in nursing homes for people with dementia in The Netherlands, I demonstrate how the end of life with dementia is managed through such moral frames. Specifically, I elaborate on the production of lives (not) worth living and explore how family members welcomed the death of a loved one with dementia. I argue that the welcoming of death is not an act of indifference but can be seen as a form of care.
What might the good life amount to at the margins of life? Taking our point of departure in Jonathan Lear’s notions of ontological breakdown and radical hope as well as the phenomenology of lived time, we explore hope within the institutional aging process in Denmark. Drawing on two ethnographic cases, Vagn and Thea, we propose a phenomenological and responsive hope emerging within complex temporalities. This is a relational hope to be included among the living, to be a human being among others. Importantly, it is neither optimistic nor naive but rather hope practiced in the face of devastating life circumstances.
Is it possible to end one’s life well with dementia? The perception of dementia as death brought into life flows from ideas about humanness embedded in medicine’s Cartesian paradigm. Dementia as incurable brain disease exacerbates negativity. But the real impact of dementia is that it changes social relations: to live well with dementia requires a relational not Cartesian understanding of life. A relational ontology prioritizes social health: to live is to be held in connection. Negativity produces the disconnection that is death, with or without disease. When people with dementia are held in connection, they live a better life.
Building on work on post-Fordist affect, we argue that the group-based and person-centered forms of production in mining and milling, respectively, produce contingent conceptualizations of culture, identity, and personhood and, in turn, of dying and death. The “communal solidarism” characteristic of post-mining milieu engenders senses of dying and death entailing a communal merging of erstwhile individual selfhoods. In post-milling milieu dying and death are conceptualized as individuated, but subject to social evaluation. The evaluative criterion in this regard is ability to “perform” dying and death in ways that reflect the valorized essence of local culture, identity, and personhood, “resilient autonomy.”
In this introduction to the special issue, Life’s End: Ethnographic Perspectives, we review the field of anthropological studies of death and dying. We make the argument that, largely because of its sub-disciplining into the larger field of the anthropology of religion, ritual and symbolism, the focus of anthropological research on death has been predominantly on post- rather than pre-death events, on death’s beginnings rather than life’s ends. Additionally, we argue that an anthropological aversion to the study of dying may also lie in the intimacy of the discipline’s principal method, ethnography. Contrastingly, we argue that this very methodological intimacy can be a source of insight, and we offer this as a rationale for the special issue as a whole, which comprises eight ethnographic studies of dying and social relations at life’s end from across Africa, Australia, Europe, and North America. Each of these studies is then summarized, and a rationale for their presentation around the themes of “structures of dying,” “care for the dying,” “hope in dying,” and “ending life” is presented.
Hospitals remain the most common location of death in a significant number of countries, and specialist palliative care is positioned as a crucial resource for improving hospital care for those nearing end of life. Little is known, however, about a substantive aspect of this work: how hospital palliative clinicians anticipate and organize a patient's dying trajectory. In this paper I draw from a larger original ethnographic research study of palliative specialists in two Canadian hospitals. Abductive analysis resulted in framing their work as affective labour, both reflecting and re-creating a larger affective economy shaping the affective states of everyone involved in the provision and uptake of care. I articulate six analytically ideal outcomes of clinicians' affective labour that organize end of life, including: 1) proactive co-authorship of disease trajectory; 2) mutual acknowledgement of a dying trajectory; 3) naturalizing direction and outcome of care, 4) ensuring a minimum of social disruption, 5) identification as compassionate and efficient care providers, and 6) increased specialist knowledge and interventions. In so doing, clinicians' practices become understandable as labour to meet a diversity of - at times conflicting - individual, organizational, and societal mandates that necessarily include, but extend well beyond, the patient and her immediate social network. This is the first study to consider hospital palliative care as an affective economy, and presents a theoretically innovative and empirically grounded model to advance new ways of conceptualizing hospital palliative care. I conclude by considering how this model, and the unique insights it affords, can inform the future development of end of life care in hospital settings.
This paper investigates nursing home staff’s experiences of the “final journey,” when a resident’s dead body is taken to the cold room. The account is based on data from ethnographic fieldwork in two nursing homes in Norway. Accompanying the dead body, staff found themselves “betwixt and between” – an anxious and ambiguous state, bordering on the uncanny. Liminality became a useful theoretical device in the data interpretation. The last offices – a rite of passage governing liminal states – provided a containing structure for this final journey but were not sufficient to banish the uncanny from the staff’s experience.
OBJECTIVE: During critical care, physicians are frequently confronted with bad-news communication because of patients' frail conditions. Delivering bad news is not easy, certainly not when patients from ethnic minority groups are involved. In this study we investigate the delivery of bad news in a multi-ethnic critical care context.
METHODS: Ethnographic fieldwork in one intensive care unit of a multi-ethnic urban hospital in Belgium. Data were collected through negotiated interactive observation, in-depth interviews and from reading patients' medical records. Data were thematically analysed.
RESULTS: Bad-news communication was primarily dominated by physicians. Patients' and relatives' input and other professionals' involvement in the communication was limited. Staff encountered ethno-cultural related difficulties, firstly, in choosing suitable conversation partner(s); secondly, in choosing the place of conversations and thirdly, in the information exchange. Staff usually tried to address these problems themselves on the spot in a quick, pragmatic way. Sometimes their approaches seemed to be more emotion-driven than well thought-out.
CONCLUSION: Delivering bad news in a multi-ethnic intensive care unit has a number of specific difficulties. These can have negative consequences for parties involved.
PRACTICE IMPLICATIONS: The challenges of an adequate delivery of bad news need a team-approach and a well thought-out protocol.