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.
Gardening has well-established physical, social and emotional benefits for older adults in varied circumstances. In Detroit, Michigan (United States of America), as in many cities, policy makers, funders, researchers, community organisations and residents regard gardening as a means of transforming bodies, persons, communities, cities and broader polities. We draw on ethnographic research conducted during one gardening season with 27 older African Americans in Detroit to foreground the social dimensions of wellbeing in later life and thus develop a more robust and nuanced understanding of gardening's benefits for older adults. Based on anthropological understandings of personhood and kinship, this article expands concepts of wellbeing to include social relations across multiple scales (individual, interpersonal, community, state) and temporalities (of the activity itself, experiences of ageing, city life). Even when performed alone, gardening fosters connections with the past, as gardeners are reminded of deceased loved ones through practices and the plants themselves, and with the future, through engagement with youth and community. Elucidating intimate connections and everyday activities of older African American long-term city residents counters anti-black discourses of ‘revitalisation’. An expansive concept of wellbeing has implications for understanding the generative potential of meaningful social relations in later life and the vitality contributed by older adults living in contexts of structural inequality.
BACKGROUND: People can live for many months without knowing why their body is failing prematurely before being diagnosed with motor neurone disease (MND); a terminal neurodegenerative disease which can be experienced as 'devastating' for the person and their family.
AIM: This study aimed to explore the meaning of supporting a loved one with MND to die.
METHODS: This study uses reflection and autobiographical story to connect with broader cultural, political and social meaning and understandings of dying.
FINDINGS: Four themes were identified relating to the end-of-life trajectory of MND. Loss of person (lived body experienced in silence); loss of relationships (lived relations are challenged); loss of home and loss of time (lived space and lived time take on new meaning); loss of future (dying-facing it alone).
CONCLUSION: Dying with MND is a complex phenomenon. When a person can no longer move and communicate, relationships between those involved in end-of-life care are challenging. A person with MND needs the support from those acting as power of attorney to make their end of life their own, and they themselves need support to find meaning in their suffering. This autoethnographic reflection provides vicarious experiences for nurses and other healthcare professionals working with people with MND and similar conditions.
This article addresses ethical issues in the conduct of ethnographic research with vulnerable study participants, such as individuals with cognitive impairment. Seven ethical issues emerged from this case study, in which a participant diagnosed with Alzheimer's disease wished to pursue euthanasia in Switzerland: (a) How to protect the participant's autonomy while ensuring his decision had not resulted from untreated depression or modifiable social factors; (b) How to interpret self-harm; (c) How to protect the research team members' "mandated reporter" status; (d) How to counteract the attractive qualities of pro-euthanasia videos depicting an easy end to personal suffering; (e) How to find a better alternative to the common practice of reporting self-harm cases to Adult Protective Services and then removing these cases from studies; (f) How to leverage a participant's trust to address these issues; and (g) Whether researchers should do anything further to help address unmet needs in similar situations.
There are few studies on interment preferences and practices for people in remote and rural regions of developed countries. This mixed methods study in rural Australia collated data on funeral and interment practices with an ethnographic exploration of the post-death preferences of terminally-ill rural residents. In the region, between February 2015 and May 2016, 44% of decedents were cremated. Burial preferences reflected family traditions, generational connections to historic cemeteries, and the wish to instantiate belonging to people and place. Cremation provided the opportunity for ashes to be scattered at personally-significant places. Funeral planning was important for patients and family caregivers, and funerals are valued rural community rituals.
This article examines how hospice philosophy works in contemporary Danish hospice practice. The still sparse literature on Danish hospices indicates that hospice philosophy is influencing professional practice. In international palliative care literature, hospice philosophy is challenged for being overly normative in its ideal of the good death or on the other hand as threatened by the medical model. Drawing on the idea of hospice philosophy as providing meaning for everyday practice, this article explores how it is incorporated within the institutional order of contemporary Danish hospices. An ethnographic study was informed by participant observation and 49 interviews with professionals, patients, and families at three hospices in Denmark. The findings contribute to further understanding of the complexity of maintaining hospice philosophy in contemporary practice. Hospice practice works in an interpretive way with hospice philosophy to offer a "lived" philosophy and a means to an authentic death.
OBJECTIVE: This paper aims to explore the extent to which the "revivalist" discourse of a good death, which promotes an awareness of dying shapes the lived realities of palliative care patients and their families in Portugal.
METHOD: An ethnographic approach was developed. Participant observation was carried out in 2 palliative care units, and this was complemented by in-depth interviews. Ten terminally ill patients, 20 family members, and 20 palliative care professionals were interviewed.
RESULTS: The "revivalist" good death script might not be suitable for all dying people, as they might not want an open awareness of dying and, thereby, the acknowledgment of imminent potential death. This might be related to cultural factors and personal circumstances. The "social embeddedness narrative" offers an alternative to the "revivalist" good death script.
SIGNIFICANCE OF RESULTS: The "revivalist" discourse, which calls for an open awareness of dying, is not a cultural preference in a palliative care context in Portugal, as it is not in accord with its familial nature.
This article is an autoethnographic exploration of college faculty grief. Over a career, a college teacher is likely to encounter deaths of current and former students. The rich connections that can develop in a faculty-student relationship can make for strong grief. Issues that can complicate faculty grief include regrets that might be unique to faculty-student relationships and information about the deceased that the faculty member feels obligated to keep confidential and cannot mention while processing their grief with others. Faculty members may rarely have the benefit of attending funeral or memorial services for students and former students, but with the deaths of current or recent students, a faculty member is likely to have colleagues and students who knew the deceased with whom to talk. With deaths of students from long ago, a faculty member is likely to be limited to processing grief with people who never knew the deceased.
Context: Organization and delivery of palliative care (PC) services vary from one country to another. In Nigeria, PC has continued to develop, yet the organization and scope of PC is not widely known by most clinicians and the public.
Objectives: The aim of the study is to identify PC services available in a Nigerian Hospital and how they are organized.
Methods: This ethnographic study, utilized documentary analysis, participant observation, and ethnographic interviews (causal chat during observation and individual interviews) to gather data from members of PC team comprising doctors (n = 10), nurses (n = 4), medical social workers (n = 2), a physiotherapist, and a pharmacist, as well nurses from the oncology department (n = 3). Data were analyzed using Spradley's framework for ethnographic data analysis.
Results: PC was found to be largely adult patient-centered. A hospital-based care delivery model, in the forms of family meetings, in- and out-patients' consultation services, and a home-based delivery model which is primarily home visits conducted once in a week, were the two models of care available in the studied hospital. The members of the PC team operated two shift patterns from 7:00 am to 2.00 pm and a late shift from 2:00 pm to 7:00 pm instead of 24 h service provision.
Conclusions: Although PC in this hospital has made significant developmental progress, the organization and scope of services are suggestive of the need for more development, especially in manpower and collaborative care. This study provided knowledge that could be used to improve the clinical practice of PC in various cross-cultural Nigerian societies and other African context, as well as revealing areas for PC development.
This essay presents an account of the influence of the researcher's body within qualitative death research. It suggests that appropriate reflection on the researcher's subjectivity should consider his or her own bodily performances and experiences. At the beginning I offer some introductory thoughts in this regard, referring to Plessner's distinction between 'being a body' (Körper-haben) and 'having a body' (Leib-sein). Here, I highlight the importance of autoethnographic approaches for the understanding of bodily experiences, such as sensations, perceptions and their aesthetics. To demonstrate the importance of considering the researcher's body within the research process, I then draw on my own autoethnographic material, discussing how I experienced in my body frightening and disturbing feelings while dealing with the dead. This material was collected during a six-month internship from April to September 2016 at a small funeral home in Thuringia, Germany. I explain how I was socialised regarding my bodily behaviour towards the dead years ago and how I acquired the knowledge that touching a corpse is often taboo; describe my bodily reactions when I saw a dead body for the first time during my internship and how these reactions influenced my fieldwork; relate how my senses and perceptions when first touching a corpse led to extreme responses that drew most of my attention to the haptic and sensual dimension, making me unable to notice other information in the field; and show how these bodily experiences crossed borders and influenced my life beyond my field research.
The aim of this meta-ethnography is to appraise the types and uses of theories relative to end-of-life decision making and to develop a conceptual framework to describe end-of-life decision making among patients with advanced cancers, heart failure, and amyotrophic lateral sclerosis (ALS) and their caregivers or providers. We used PubMed, Embase, and Cumulative Index to Nursing and Allied Health Literature (CINAHL) databases to extract English-language articles published between January 2002 and April 2015. Forty-three articles were included. The most common theories included decision-making models ( n = 14) followed by family-centered ( n = 11) and behavioral change models ( n = 7). A conceptual framework was developed using themes including context of decision making, communication and negotiation of decision making, characteristics of decision makers, goals of decision making, options and alternatives, and outcomes. Future research should enhance and apply these theories to guide research to develop patient-centered decision-making programs that facilitate informed and shared decision making at the end of life among patients with advanced illness and their caregivers.
Our interdisciplinary mixed-methods exploratory study was aimed at gaining empirical data on the medical and nursing demands of residents who are in a late stage of Parkinson Disease (PD) and are cared for in residential homes in Salzburg (Austria). In earlier studies it has been concluded that symptom burden of late stage PD patients is similar to or even higher compared with oncological patients. However, although all nine residents who took part in our study had severe limitations in performing their daily activities and experienced enormous restrictions in their mobility, they were quite content with their present living situations and did not show significant symptom burden. From the ethnographic family interviews that we conducted the following features emerged: a strong closeness in the family, an improved quality of life when the patients lived in the nursing home and fears about the future. Therefore, we concluded that living in a nursing home that provides for the needs of these patients is the best option for PD patients in the final stages of their disease as well as for their relatives.
AIM: To increase understanding of grandparental grief following the death of a grandchild from a life-limiting condition.
DESIGN: META-ETHNOGRAPHY: DATA SOURCES: Academic Search Complete (2015, updated 2018), CINHAL, Embase, psycINFO, PubMed and Web of Science, supplemented by manual search strategies.
REVIEW METHODS: Studies were appraised and synthesised using the principles of meta-ethnography.
FINDINGS: Three superordinate themes were identified: 'influence of the relationship with their grandchild', 'influence of the relationship with the grandchild's family' and 'pain'. The simultaneous, multi-generational position of grandparents meant individuals experience emotional pain from witnessing the experience of family members.
CONCLUSION: Many factors that contribute to the bereavement experience of grandparents are outside of their control. The roles, positions and support needs of grandparents need to be acknowledged to better meet their needs as parents, grandparents and individuals who have experienced a child death.
Patient safety and quality of care are increasing concerns for healthcare internationally. This paper examines the spatial achievement of safety and wellbeing by healthcare staff, patients and their carers within UK primary care and Australian palliative care contexts. Two key socio-spatial modes of safety and wellbeing were found across these healthcare contexts. The technical mode was spatially managed by staff and driven by formal approaches to safety with a limited focus on wellbeing. In contrast, the relational mode was driven by attentiveness to the wellbeing and spatial engagement of staff, patients and carers that drew on informal elements of safety. Both modes extended across public, private, biomedical and administrative spaces, with technical and relational safety-wellbeing configurations often inhabiting the same spaces. Differences also existed across primary and palliative care contexts that reflected the unique pressures present within each context, and the ability of people and places to adapt to these demands. In the context of increasing workloads in healthcare internationally, this study highlights the benefits of attending as much to the relational dimensions of safety and quality of care as to the technical ones through increased focus on the safety and wellbeing of healthcare staff, patients and carers within and beyond traditional sites of care.
Ecuador, located in South America, has a population of 16 million people. According to the National Institution of Statistics in Ecuador, every year 8 out of a 1000 individuals die due to various causes. Palliative care and hospice are relatively new concepts for the Ecuadorian society. In Ecuador people usually die at home, in hospitals, or in nursing homes. In 2012, the first Ecuadorian hospice was created. According to symbolic interactionism theory, research needs to study participants' world in order to understand the dynamic nature of human behavior. Symbolic interactionism proposes that human beings cannot be understood without the context of their interactions. Through an ethnomethodological approach, the following research aims to understand the way that individuals understand and describe death while in the local hospice in Ecuador. Results emerge from the introspection of real stories, field notes, participant observation, and informal conversations at the hospice. Based on a thematic analysis, the following study presents major themes that emphasize the dynamic process of creating meaning of death.
BACKGROUND: The treatment of Multidrug-Resistant Tuberculosis represents one of the most significant challenges to global health. Despite guidance on improving treatment outcomes, there is little focus on how to support individuals in their suffering. Palliative care is therefore proposed as a necessary component in the global strategy to fight Tuberculosis. We aim to describe the informal resources and networks available to persons affected by Multidrug-Resistant Tuberculosis, how they are accessed and how they are integrated into everyday lives.
METHODS: In-depth ethnographic research was conducted in Bengaluru, India. Informal interactions and observations were recorded across a range of palliative care and tuberculosis treatment providers over a month-long period. In addition, ten individuals with Multidrug-Resistant Tuberculosis were asked for in-depth interviews, and five agreed.
RESULTS: Multidrug-Resistant Tuberculosis caused a dynamic chain of events that transgress through physical and psychological domains to cause human suffering. Participants utilised support from their family and friends to build a network of care that was of therapeutic benefit. Informal care networks were similar to the holistic model of care practice by specialist palliative care services and represent an underused resource with enormous potential.
CONCLUSION: Patient suffering is poorly addressed in current Tuberculosis treatment programmes. A community-based palliative care approach may extend peoples' support networks, helping to alleviate suffering. Further research on existing support structures and integration of these services into Tuberculosis control programmes is required.
BACKGROUND: The approach of death is an undeniable part of ageing and death is the most important concern for elderly people who live in nursing homes. This study examines describes how care home residents feel when they recognise that they are close to death.
AIMS:: The aim of this study was to explore the experiences of elderly residents who are dying in nursing homes as well as their caregivers toward death in an Iranian context.
METHODS: A focused ethnographic research design was chosen. The research sample consisted of 25 nursing home staff-three nurses, 18 healthcare assistants, two administrators, a social worker and a psychologist-and 10 elderly people in two nursing homes in Iran. Data was collected through field notes, observations and semistructured, in-depth interviews. Data was analysed using thematic analysis.
FINDINGS: There were two main themes of: seeking the embrace of a calm death; and waiting for death. Within these, four subthemes were identified.
CONCLUSION: The perceptions of the participants originated from the nursing home culture and their beliefs in eternal life. Training staff about the cultural needs of dying people and end-of-life care would be the most effective way to improve the experience of dying for nursing home residents.
BACKGROUND:: Despite the increasing number of people requiring palliative care at home, there is limited evidence on how home-based palliative care is best practised.
AIM:: The aim of this participatory qualitative study is to determine the characteristics that contribute to brilliant home-based palliative care.
DESIGN:: This study was inspired by the brilliance project - an initiative to explore how positive organisational scholarship in healthcare can be used to study brilliant health service management from the viewpoint of patients, families, and clinicians. The methodology of positive organisational scholarship in healthcare was combined with video-reflexive ethnography.
SETTING/PARTICIPANTS:: Home-based specialist palliative care services across two Australian states participated in the study. Clinicians were able to take part in the study at different levels. Pending their preference, this could involve video-recording of palliative care, facilitating and/or participating in reflexive sessions to analyse and critique the recordings, identifying the characteristics that contribute to brilliant home-based palliative care, and/or sharing the findings with others.
RESULTS:: Brilliance in home-based palliative care is contingent on context and is conceptualised as a variety of actions, people, and processes. Care is more likely to be framed as brilliant when it is epitomised: anticipatory aptitude and action; a weave of commitment; flexible adaptability; and/or team capacity-building.
CONCLUSION:: This study is important because it verifies the characteristics of brilliant home-based palliative care. Furthermore, these characteristics can be adapted for use within other services.
BACKGROUND: In many countries, achieving a home death represents a successful outcome from both a patient welfare and commissioning viewpoint. Significant variation exists in the proportion of home deaths achieved internationally, with many countries unable to meet the wishes of a large number of patients. This review builds on previous literature investigating factors influencing home death, synthesising qualitative research to supplement evidence that quantitative research in this field may have been unable to reach.
AIM: To identify and understand the barriers and facilitators influencing death at home.
DATA SOURCES: The review adhered to the PRISMA guidelines. A systematic literature search was conducted using five databases: PubMed, EMBASE, Ovid, CINAHL and PsycINFO. Databases were searched from 2006 to 2016. Empirical, UK-based qualitative studies were included for analysis.
RESULTS: A total of 38 articles were included for analysis. Seven overarching barriers were identified: lack of knowledge, skills and support among informal carers and healthcare professionals; informal carer and family burden; recognising death; inadequacy of processes such as advance care planning and discharge; as well as inherent patient difficulties, either due to the condition or social circumstances. Four overarching facilitators were observed: support for patients and healthcare professionals, skilled staff, coordination and effective communication.
CONCLUSION: Future policies and clinical practice should develop measures to empower informal carers as well as emphasise earlier commencement of advance care planning. Best practice discharge should be recommended in addition to addressing remaining inequity to enable non-cancer patients greater access to palliative care services.