Death Talk Research Articles

Middle-aged and older adults in Aids village: a mixed methods study on talking about death and well-being promotion based on social support theory.

Will about talking about death bring well-being? This study aims to explore the impact of talking about death on the subjective well-being of the rural middle-aged and older adults in China's "Aids village" from five dimensions: the way of talking about death, the attitude towards talking about death, the objects of talking about death with, the frequency of talking about death and the content of the death talk, and investigate whether social support played a mediating role during this process. A field survey and in-depth interviews were conducted in Wen Lou village (a famous Chinese "Aids village"), and valid questionnaires were completed by the HIV/Aids-affected middle-aged and older adults. A series of linear regression analyses were conducted to detect whether the way of talking about death, the attitude towards talking about death, the objects of talking about death with, the frequency of talking about death and the content of the death talk predict the subjective well-being of the HIV/Aids-affected middle-aged and older adults. An empirical test for mediation effect was performed to examine whether social support played a mediating role during the process. It was found that the more frequent the middle-aged and older adults talk about death, the higher level of their subjective well-being is (ΔR2 = 0.056, 0.05 < p < 0.10), and during which process social support played a mediating role. The author believes that using "talking about death" as a kind of medical intervention, carrying out corresponding life education and death education, and developing a suitable hospice care model, may be a valuable way for the HIV/Aids-affected middle-aged and older adults in the rural area.

The meaning of dying and death for children, their carers, and families: a scoping review

BackgroundThe meaning of dying and death are underexplored concepts for Canadian children. Subsequently, it is unclear how children and stakeholders make meaning of children’s holistic health needs at the end of life.MethodsA scoping review of the international scholarly literature was conducted. Thirteen data sources were searched to search the scholarly literature without date limits until January 2022. Studies were included on the basis of population: children (aged 0–19 years), families and caregivers; setting (in Canada and end-of-life or dying phases of living) and concepts of interest (dying and death).ResultsOf the 7377 studies identified, 12 were included for data extraction and content thematic analysis. The themes and subthemes include: 1) valuing the whole person; 2) living while dying; 3) authentic death talk; 4) a supportive approach (with lack and presence of support as subthemes); and, 5) a personalist approach.ConclusionsThere is a pressing need for research into the meaning of dying and death for children, their carers and families in Canada. Lack of holistic care, authentic death talk, specialized pediatric palliative care providers, a personalist approach and communities of support present major gaps in care for Canadian children. Research is urgently needed to address these knowledge gaps to generate policy and support practice for dying children in Canada.

Breaking climate justice ‘silence’ in everyday life: The environmentalist killjoy, negotiation and relationship risk

The moral and justice dimensions of climate change are uncomfortable and commonly avoided in the conversations of day-to-day UK life. This ‘silence’ impedes the genesis of a public discourse to drive justice-oriented social and political change. Two social realms identified as silence-breaking are social movements and personal relationships, yet the potential of this intersection has yet to be explored. This article applies Goffman’s theories of interaction to a qualitative study of UK-based climate activists to show how silence around climate justice is often a means to avoid relationship conflict, and the ways in which this is negotiated within everyday interactions. Activist participants faced conversational resistance through normative avoidance of climate-related death talk, and from negative environmental activist stereotyping. In efforts to protect relationships while promoting their climate politics, participants backgrounded their activist identity, slowly ‘chipped away’ at climate obstruction through social and sustainable practices, and prioritised humour. Breaking silences required taking relationship risks through radical environmentalist ‘killjoy-talk’: a deliberate, politicised transgression of polite conversation norms. The article reflects on the normativities and loci of power discursively obstructing a moral engagement, and the potential for activists’ practical and discursive strategies to work against these to normalise politicised climate talk.

DEEP AGING: THE CONNECTION THAT SURVIVES DEATH AND ITS ROLE IN INCREASING HUMAN–NONHUMAN RELATIONSHIPS

Abstract Ageing is part of life, and so is death. Although death will involve all of us over time, it is often regarded as a taboo topic, and bonds with the dead are seldom acknowledged in contemporary times. The aim of this paper is to present selected insights on the connection that survives death and its role in increasing human/non-human relationships, learned from two indigenous knowledges—whakapapa (genealogical connections in Maori) and filial piety (respect/care for parents and ancestors). Data were collected from semi-structured interviews with 49 key informants (Maori=25; Korean=24) between 2019 and 2021 in New Zealand and South Korea. A modified thematic analysis method was used to analyse the data obtained in a bilingual research context. The research findings show that the connectedness with ancestors or deceased loved ones is a significant part of the participants’ mental and social lives, emphasised in both whakapapa and filial piety/ancestor veneration traditions. Maori participants were likely to consider their natural environment (for example, land and water) as a common good for all generations, while Korean counterparts viewed it (for example, a mountain) as the place where ancestors were remembered and venerated. Participants’ awareness of the post-mortem relationships was associated with their connection with nature and spiritual practices. Overall, this study suggests that there are several possible ways that older people could do ‘something’ prior to death for their remaining families and friends, ranging from activities concerning death talk, end-of-life preparation, legacy building and after-life planning, to connectedness with nature and non-human beings.

Understanding public attitudes to death talk and advance care planning in Northern Ireland using health behaviour change theory: a qualitative study.

ObjectivesAdvance care planning is a key preparatory step in ensuring high-quality palliative and end of life care, and should be considered as a process, beginning with community-level conversations among lay persons. There is, however, indication that death talk among community-dwelling adults is not occurring, and there is a dearth of research examining why this is the case. This study aims to provide the first examination of barriers and facilitators to talking about death and dying among the general population in a UK region (Northern Ireland), and to provide a novel application of health behaviour change theory towards developing a theoretical understanding of the sources of this behaviour.MethodsThe study involved qualitative analysis of responses (n = 381 participants) to two open-ended questions within a cross-sectional online survey, with recruitment via social media of adults currently living in Northern Ireland. Reflexive thematic analysis was conducted on open text responses per question, with the barriers and facilitators mapped on to health behaviour change models (the Behaviour Change Wheel COM-B and the Theoretical Domains Framework).ResultsThe findings evidence a myriad of barriers and facilitators to engaging in death talk, with themes aligning to areas such as lack of acceptance of death in social contexts and fear of upsetting self or others, and a need to improve interpersonal communication skills for facilitating conversations and improve knowledge of the existing services around death and dying. A theoretical understanding of the drivers of death talk is presented with findings mapped across most components of the COM-B Behaviour Change Model and the Theoretical Domains Framework.ConclusionsThis study contributes to a small but emergent research area examining barriers and facilitators to talking about death and dying. Findings from this study can be used to inform new public health programmes towards empowering adults to have these conversations with others in their community towards upstreaming advance care planning.

Radiotherapy: death talk on Primetime National Radio - The Steve Hewlett interviews

ABSTRACT Between October 2016 and February 2017, BBC Radio 4 broadcast a series of interviews with presenter Eddie Mair and journalist Steve Hewlett, following Hewlett’s diagnosis with oesophageal cancer. These interviews, which became compelling listening – and for a brief moment, part of public conversation – provide the focus for this article. Three broad but overlapping themes are identified from analysis of the interviews: 1) the subjective lived experience of illness, and specifically, oesophageal cancer; 2) the experience of navigating UK cancer care, and debates about the organisation and delivery of UK healthcare; and 3) the function of talk in mediating the experience of living with/dying from cancer. Two further strands are woven into the discussion: the specificity of male cancer talk; and radio as a medium for facilitating first-person narratives of illness/dying.

Ten minutes to midnight: a narrative inquiry of people living with dying with advanced copd and their family members

ABSTRACT Purpose: To explore how people with end stage chronic obstructive pulmonary disease and their family members describe living in the face of impending death. Methods: A narrative inquiry was undertaken using a social constructionist perspective. Data were collected in 2017–18 in two in-depth interviews, lasting 90 to 120 minutes approximately 3–4 months apart, with a telephone follow-up 2–3 months later. Thematic analysis was conducted including analysis within and across participants. Results: Sixteen people with advanced chronic obstructive pulmonary disease and seven family members participated. For both people with the disease and family members, six key themes/storylines emerged including missing life, being vigilant, hope and realism, avoiding death talk, the scary dying process, and need to prepare. Conclusion: This study highlighted six key storylines about death and dying with advanced chronic obstructive pulmonary disease for people with the illness and their family members. The participants with the illness and their family members held similar perceptions about end of life. More supports are needed for people with advanced chronic obstructive pulmonary disease and their family members in living with their illness while ensuring that they experience a “good death.”

Exploring the Connection Between End-of-Life Relational Communication and Personal Growth After the Death of a Loved One.

The purpose of the current investigation was to examine associations between final conversations (FCs; i.e., relational communication with a terminally ill individual from the moment of terminal diagnosis to death) with the outcome of personal growth (PG). A total of 236 individuals who had previously engaged in FCs with a deceased loved one participated in an online survey. Analyses revealed significant, positive associations between the six FCs factors (i.e., messages of love, messages of spirituality/religion, messages of identity, everyday talk and routine interactions, difficult relationship talk, and instrumental death talk) with the PG factors. Implications are discussed along with limitations and future directions.

Pathos, death talk and palliative care in the assisted dying debate in Victoria, Australia

ABSTRACTMany submissions made by individuals to an Australian Parliamentary inquiry into end-of-life care which supported assisted dying used narratives of bad deaths of family or friends, or included stories by people suffering from chronic terminal illness. The submissions used the emotional tugs (pathos) of these narratives to support their case and to highlight the contemporary weaknesses of end-of-life care. This paper analyses the submissions, showing how pathos-based arguments were used in the public debate. Pathos-based arguments are a significant – and potentially very influential – feature in the debate on assisted dying. This paper also analyses the arguments advanced by proponents of assisted dying to show the weaknesses of Victoria’s current arrangements for end-of-life care, including the significant suffering of family member or friends; lack of access to good palliative care; and that patient needs were not met, sometimes for religious or value-based reasons.

PC-FACS

PC-FACS

Socio-cultural contexts of end- of- life conversations and decisions: bereaved family cancer caregivers\u2019 retrospective co-constructions

BackgroundEnd-of-life communication becomes increasingly difficult in terminal cancer, which inevitably entails conversations around dying and death. In resource-limited areas, the context of end-of-life communication is usually home-based palliative care comprising mostly women in the family who play critical roles as informal caregivers. This article examined the content and contexts of family end-of-life conversations and decisions based on the retrospective accounts of a sample of bereaved women family cancer caregivers in Nairobi, Kenya.MethodAn interpretative phenomenological analysis approach was utilized to explore pertinent end-of-life communication themes. Four mini focus group interviews with a total of 13 participants [n = 5; n = 3; n = 3; n = 2] were conducted.ResultsTwo end-of-life themes, advance directives as preparedness for death, and initiating death talk were examined. Findings (a) illustrate the role of family dynamics in influencing the nature of end-of-life conversations and decisions (b) demonstrate the transitional nature of family caregiver roles, and (c) underscore the paradox of the critical role played by family members in palliative care versus their ill preparedness in dealing with end-of-life issues.ConclusionsFindings are relevant in informing palliative psychosocial interventions and specifically the concerns and decisions of cancer patients and their families. This prompts further engagement with the question of how to equip family caregivers in resource-limited contexts for end of life care. Methodologically, these results demonstrate the possibility of simultaneous elucidation of individual experiences, interactive co-constructions and the socio-cultural contexts of experiences and meaning making processes in IPA research.

Death talk and relief of death-related distress in patients with advanced cancer

ObjectivesThe circumstances of advanced cancer heighten the need for affected individuals to communicate mortality-related concerns, although there may be obstacles to such communication. Managing Cancer and Living Meaningfully(CALM) is a...

Nurses' care practices at the end of life in intensive care units in Bahrain.

The process of dying in intensive care units is complex as the technological environment shapes clinical decisions. Decisions at the end of life require the involvement of patient, families and healthcare professionals. The degree of involvement can vary depending on the professional and social culture of the unit. Nurses have an important role to play in caring for dying patients and their families; however, their knowledge is not always sought. This study explored nurses' care practices at the end of life, with the objective of describing and identifying end of life care practices that nurses contribute to, with an emphasis on culture, religious experiences and professional identity. Research Design and context: Grounded theory was used. In all, 10 nurses from intensive care unit in two large hospitals in Bahrain were participated. Ethical Considerations: Approval to carry out the research was given by the Research Ethics Committee of the host institution, and the two hospitals. A core category, Death Avoidance Talk, was emerged. This was supported by two major categories: (1) order-oriented care and (2) signalling death and care shifting. Death talk was avoided by the nurses, doctors and family members. When a decision was made by the medical team that a patient was not to be resuscitated, the nurses took this as a sign that death was imminent. This led to a process of signalling death to family and of shifting care to family members. Despite the avoidance of death talk and nurses' lack of professional autonomy, they created awareness that death was imminent to family members and ensured that end of life care was given in a culturally sensitive manner and aligned to Islamic values.

Death talk: Basic linguistic rules and communication in perinatal and paediatric end-of-life discussions

ObjectiveThis paper considers clinician/parent communication difficulties noted by parents involved in end-of-life decision-making in the light of linguistic theory. MethodsGrice’s Cooperative Principle and associated maxims, which enable effective communication, are examined in relation to communication deficiencies that parents have identified when making end-of-life decisions for the child. Examples from the literature are provided to clarify the impact of failing to observe the maxims on parents and on clinician/parent communication. ResultsLinguistic theory applied to the literature on parental concerns about clinician/parent communication shows that the violation of the maxims of quantity, quality, relation, and manner as well as the stance that some clinicians adopt during discussions with parents impact on clinician/parent communication and lead to distrust, anger, sadness, and long-term difficulties coping with the experience of losing one’s child. ConclusionParents have identified communication deficiencies in end-of-life discussions. Relating these communication deficiencies to linguistic theory provides insight into communication difficulties but also solutions. Practice implicationsGaining an understanding of basic linguistic theory that underlies human interactions, gaining insight into the communication deficiencies that parents have identified, and modifying some communication behaviours in light of these with the suggestions made in this article may lead to improved clinician/parent communication.

‘Death talk’, ‘loss talk’ and identification in the process of ageing

ABSTRACTIn this paper, we examine the injunction issued by the prominent politician, broadcaster and older people's advocate, Baroness Joan Bakewell, to engage in ‘death talk’. We see positive ethical potential in this injunction, insofar as it serves as a call to confront more directly the prospects of death and dying, thereby releasing creative energies with which to change our outlook on life and ageing more generally. However, when set against a culture that valorises choice, independence and control, the positive ethical potential of such injunctions is invariably thwarted. We illustrate this with reference to one of Bakewell's interventions in a debate on scientific innovation and population ageing. In examining the context of her intervention, we affirm her intuition about its positive ethical potential, but we also point to an ambivalence that accompanies the formulation of the injunction – one that ultimately blunts the force and significance of her intuition. We suggest that Gilleard and Higgs' idea of the third age/fourth age dialectic, combined with the psycho-analytic concepts of fantasy and mourning, allow us to express this intuition better. In particular, we argue that the expression ‘loss talk’ (rather than ‘death talk’) better captures the ethical negotiations that should ultimately underpin the transformation processes associated with ageing, and that our theoretical contextualisation of her remarks can help us see this more clearly. In this view, deteriorations in our physical and mental capacities are best understood as involving changes in how we see ourselves,i.e.in our identifications, and so what is at stake are losses of identity and the conditions under which we can engage in new processes of identification.

Death talk: gender differences in talking about one's own impending death.

BackgroundAccording to common practice based on a generally agreed interpretation of Icelandic law on the rights of patients, health care professionals cannot discuss prognosis and treatment with a patient’s family without that patient’s consent. This limitation poses ethical problems, because research has shown that, in the absence of insight and communication regarding a patient’s impending death, patient’s significant others may subsequently experience long-term psychological distress. It is also reportedly important for most dying patients to know that health care personnel are comfortable with talking about death and dying. There is only very limited information concerning gender differences regarding death talk in terminal care patients.MethodsThis is a retrospective analysis of detailed prospective “field notes” from chaplain interviews of all patients aged 30–75 years receiving palliative care and/or with DNR (do not resuscitate) written on their charts who requested an interview with a hospital chaplain during a period of 3 years. After all study patients had died, these notes were analyzed to assess the prevalence of patient-initiated discussions regarding their own impending death and whether non-provocative evocation-type interventions had facilitated such communication.ResultsDuring the 3-year study period, 195 interviews (114 men, 81 women) were conducted. According to the field notes, 80% of women and 30% of men initiated death talk within the planned 30-minute interviews. After evoking interventions, 59% (67/114) of men and 91% (74/81) of women engaged in death talk. Even with these interventions, at the end of the first interview gender differences were still statistically significant (p = 0.001). By the end of the second interview gender difference was less, but still statistically significant (p = 0.001).ConclusionsGender differences in terminal care communication may be radically reduced by using simple evocation methods that are relatively unpretentious, but require considerable clinical training.Men in terminal care are more reluctant than women to enter into discussion regarding their own impending death in clinical settings. Intervention based on non-provocative evocation methods may increase death talk in both genders, the relative increase being higher for men.

Death and dying in residential care: a matter of concern

Purpose – The purpose of this paper is to trace the history of official policy on the regulation of care homes in respect of end of life care and to contrast this with the results of research on this important theme, not least in terms of what is required to support care home staff in relation to dying residents and their relatives. A central concern is to argue for the open recognition that care homes now cater primarily for frail people towards the end of their lives. Good end of life care and a good death could become a positive “selling point”. The author concludes that the system of regulation has broadly failed to address a good death or good end of life care in a residential home. Death talk should no longer need to be avoided in care homes. The research suggests that appropriate support for care home staff in relation to dying residents needs careful identification and investment. A cultural shift is required. Design/methodology/approach – Following a review of policy documents on regulation and standards of care in residential homes and a subsequent review of the research literature on death and dying in care homes, the paper illuminates the contrast between the ambitious aims in policy documents with very varied practice in everyday care of frail residents. Findings – The recent systems of regulation have broadly failed to address a good death or good end of life care in residential homes. Open acknowledgement of death and dying should not be avoided in care homes. Appropriate support for care home staff in relation to dying residents needs careful identification and investment. Originality/value – The focus of this paper is to contrast official policy with everyday practice. Whilst policy documents suggest recognition of the importance of dignity and respect from dying residents, the research literature indicates great variation in the practice of everyday care.

The Real Truth About Death Panels: Comparative Effectiveness Research and the Health Reform Legislation

The current debate over health reform has been intense and highly polarizing. In 2009, it was dominated by a brouhaha over death panels and talk of government rationing and domination of health care. I will begin my remarks by addressing the provisions of the health reform legislation that precipitated the talk of death panels and the like. Specifically, I will talk about the comparative effectiveness research initiative, which is at the root of the brouhaha over death panels. Then, I will explore the central question of whether comparative effectiveness research really is a contribution to true health reform and can achieve the critical goal of controlling health care costs.

Physician-Assisted Suicide and Euthanasia

Dear Editors: Re: Boudreau JD. Physician-assisted suicide and euthanasia: can you even imagine teaching medical students how to end their patients' lives? Perm J 2011 Fall;15(4):79–84. Considering that physician-assisted suicide and euthanasia is a sensitive and controversial topic, the reductionism and the lack of objectivity of the question asked and of its discussion are intriguing. It is clear that the author and advisers wished no answer but their own. It is not usual for scholars to be reluctant to confront their views with others. Surprising it is, that of those with the most experience in the field, none were consulted, namely from the Netherlands, Belgium, and the State of Oregon. Their comments would have broadened the horizon for the readership and rectified some lexical vagaries. It is generally understood that kill and murder are acts perpetrated on nonconsenting victims. Thus, the absolute moral value of “not to kill” does not apply to requested euthanasia, and “self-murder” is an oxymoron. The experts from overseas would have insisted that euthanasia cannot be reduced to the “teaching of an act intended to hasten death”; and that what can very well be role-modeled is a humanism paving the way toward the “presence and accompaniment,” hailed by Dr Boudreau, which is the essence of the Belgian Integral Palliative Care: high-quality palliative care, open to the “act” of advancing death, when suffering cannot be relieved and proves intolerable to the desolate dying patient, who requests it.1 From the Netherlands likewise, one would appreciate how the “euthanasia talk,” over weeks and months, can be taught, along with excellent palliation and end-of-life care. In this humanistic, reassuring process, nine out of ten formal requests sublimate into a natural death.2 Only one in ten will want the request honored, as recommended by Eric Cassell, MD: “Assisting a patient in dying is not an easy way out. When terminally ill patients request assistance in dying because of their suffering, and their request meets commonly endorsed safeguards, their request should be honored.”3 In that perspective, bright and sensitive medical students, learn to develop a rich “autonomie-en-lien” (bonds in autonomy), an obbligato tandem between patient and physician, wherein both remain free, yet tied by the bonds of humanity (Marc Desmets, MD; personal communication; 2012).a The morality of an act resting on its justification and its benevolence—as per philosopher Tom Beauchamp, MD4—is in the realm of the physician; benevolence, as the answer to suffering, affirmed solely by the patient. “Only the patients know how awful their own suffering is,” wrote Cassell.3 In the above context, to entertain nightmares of “Modules of euthanasia,” taught by certified “euthanatricians” teaching evidence-based medicine, which may well be irrelevant when “The One and Only Mrs Jones” will face death,5 all belong to fiction. Curricula, textbooks, research, hence journals, on end-of-life and palliative care abound and have been on the rise, more so where regulated physician-assisted dying has been enacted. Palliative care, including medically assisted dying are already taught in the Netherlands and in Belgium by qualified medical educators. “Palliative care education fits very well with the aims and agenda of general medical education, helping to correct the imbalance between knowledge, skills and attitudes.”6 In 2007, the Flemish Palliative Care Federation stated: “No dual track in end-of-life care by which palliative care practice and teaching on the one hand and euthanasia on the other would develop in separation” … “Each patient's choice must be respected.”1 What is needed then is a continued expansion of those activities by mentors respectful of patients' autonomy and for whom the faculty's agenda is aligned with, and subordinated to, the patient's own. Paternalism is no longer a virtue but an oppressive tyranny (vide infra). “The first duty of the physician is no longer to save life at all costs, but to respect his patient's choices,” affirmed the Hon Baudouin.7 Dr Cicely Saunders reminded all that: “Whatever our own beliefs, we should never impose them on another person, least of all on any individual who is dependent upon us.”8 Should a ludicrous specialty of “euthanatrists” ever be considered necessary, one for “terminalists” or “sedationists” is then urgently needed to administer terminal sedation, for both euthanasia and terminal sedation end in death. The insinuated inadequacies regarding “death talk,” diagnosing depression, and pain management are still being raised. To be noted, even in reputed palliative care units, terminal sedation can last more than 10 days (in 10% of cases) and even more than 20 days (in 3.4% of cases).9 The longer it lasts, the more knowledge, skills and humanism are necessary to cope with the wide spectrum of physical, psychosocial and spiritual problems that develop, for both staff and families. Not rarely, experienced palliativists at times do poorly in such situations, as heard personally in workshops on “prolonged terminal sedations.”

Parents do not regret death talk

Parents do not regret death talk