INTRODUCTION: Patient demographics demand physicians who are competent in and embrace palliative care as part of their professional identity. Published literature describes ways that learners acquire knowledge, skills and attitudes for palliative care. These studies are, however, limited by their focus on the individual where learning is about acquisition. Viewing learning as a process of becoming through the interplay of individual, social relationships and cultures, offers a novel perspective from which to explore the affordances for professional identity development.
METHODS: Qualitative narrative methods were used to explore 45 narratives of memorable learning (NMLs) for palliative care recounted by 14 graduating family medicine residents in one family medicine residency program. Thematic and narrative analyses identified the affordances that support and constrain the dynamic emergence of professional identity.
RESULTS: Participants recounted affordances that supported and/or constrained their learning acting on personal (e.g. past experiences of death), interpersonal (e.g. professional support) and systemic (e.g. patient continuity) levels. Opportunities for developing professional identity were dynamic: factors acted in harmony, were misaligned, or colliding to support or constrain an emerging professional identity for palliative care practice.
CONCLUSION: Findings highlight how individual factors interplay with interpersonal and structural conditions in the workplace in dynamic and emergent ways that may support or constrain the emergence of professional identity. Viewing learning as a process of becoming allows teachers, curriculum developers and administrators to appreciate the complexity and importance of the interplay between the individual and the workplace affordances to create environments that nurture professional identity for palliative care practice.
OBJECTIVE: The diagnosis of an advanced cancer in young adulthood can bring one's life to an abrupt halt, calling attention to the present moment and creating anguish about an uncertain future. There is seldom time or physical stamina to focus on forward-thinking, social roles, relationships, or dreams. As a result, young adults (YAs) with advanced cancer frequently encounter existential distress, despair, and question the purpose of their life. We sought to investigate the meaning and function of hope throughout YAs' disease trajectory; to discern the psychosocial processes YAs employ to engage hope; and to develop a substantive theory of hope of YAs diagnosed with advanced cancer.
METHOD: Thirteen YAs (ages 23-38) diagnosed with a stage III or IV cancer were recruited throughout the eastern and southeastern United States. Participants completed one semi-structured interview in-person, by phone, or Skype, that incorporated an original timeline instrument assessing fluctuations in hope and an online socio-demographic survey. Glaser's grounded theory methodology informed constant comparative methods of data collection, analysis, and interpretation.
RESULTS: Findings from this study informed the development of the novel contingent hope theoretical framework, which describes the pattern of psychosocial behaviors YAs with advanced cancer employ to reconcile identities and strive for a life of meaning. The ability to cultivate the necessary agency and pathways to reconcile identities became contingent on the YAs' participation in each of the psychosocial processes of the contingent hope theoretical framework: navigating uncertainty, feeling broken, disorienting grief, finding bearings, and identity reconciliation.
SIGNIFICANCE OF RESULTS: Study findings portray the influential role of hope in motivating YAs with advanced cancer through disorienting grief toward an integrated sense of self that marries cherished aspects of multiple identities. The contingent hope theoretical framework details psychosocial behaviors to inform assessments and interventions fostering hope and identity reconciliation.
INTRODUCTION: Caring for terminally ill children influences nurses' and allied health provider's quality of life, ability to provide personalized, dignified and empathetic care and even their concepts of personhood. In the absence of data this review utilizes the Ring Theory of Personhood (RToP) to evaluate how a physician's concept of personhood is affected caring for terminally ill children in order to better support them holistically.
METHODS: Using PRISMA Guidelines, 14 researchers carried out independent searches of PubMed, CINAHL, PsycINFO, Cochrane Library and gray literature databases for articles published between 2000 to 2019. Concurrent and independent employment of content and thematic analysis (Split Approach) was used to enhance the trustworthiness of the analysis.
RESULTS: 13,424 titles and abstracts were retrieved, 188 full texts were evaluated, and 39 articles were included and analyzed. Identical categories and themes identified using the Split Approach suggest that caring for dying children in PPC impacts the physician's professional identity, clinical decision making, personal well-being and relationships. The data also suggests that the magnitude of these effects depends on the presence of protective and risk factors.
CONCLUSION: Aside from providing a novel insight into the upon the physician, this review proffers a unique approach to accounting for the presence, magnitude and influence of incoming catalysts, resultant conflicts, and protective and risk factors upon the physician's personhood. Further studies into the changes in personhood are required. Design of a personalized assessment tool based on the RToP will help direct timely, appropriate and personalized support to these physicians.
Methods: As in life at large, ideas of 'self' underlie a great deal of theory and practice in palliative care and in bereavement care, they are frequently implicit, being part of shared cultural assumptions, but may assume a degree of theoretical abstraction when fostered by professionals. This article considers the latter, arguing for an interpretation of 'self' influenced by the anthropological notion of dividual or composite personhood and not for that of the autonomous, relatively insular individual typified in much postmodern culture.
Results: After depicting both types of personhood, the article explores Western theories of grief typified in the approaches of attachment and loss, continuing bonds with the dead and narrative approaches to identity.
Discussion: The dividual approach to personhood then drives a theoretical critique of those grief theories as a means of reflecting upon palliative and bereavement care.
Conclusion: This alignment of palliative and bereavement care is seen as an entailment of the dividual approach to personhood, while further consequences are raised for analysing memory, dreams and visitations of the dead, as well as providing a potential perspective upon memory loss and the dissonance experienced by relatives of someone who no longer recognizes them.
A persistent question in discussions of the ethics of advance directives for euthanasia is whether patients who go through deep psychological changes retain their identity. Rather than seek an account of identity that answers this question, I argue that responsible policy should directly address indeterminacy about identity directly. Three sorts of indeterminacy are distinguished. Two of these-epistemic indeterminacy and metaphysical indeterminacy-should be addressed in laws/policies regarding advance directives for euthanasia.
This article reviews the concept of postmortem identity, noting its relationships to others concepts such as relational trauma. Identity is a very fluid concept that can change even after an individual's death as new information becomes available or even as social values change. Such modifications of postmortem identity can affect the course of bereavement-complication reactions to loss.
Cet article décrit certains aspects uniques dans les soins des patients de sexe masculin souffrant d'une maladie hématologique, tout au long du processus, depuis l'étape du diagnostic en passant par la phase de traitement jusqu'à la rémission et parfois, malheureusement, jusqu'à la phase de fin de vie. Ce périple peut s'étendre de quelques mois à plusieurs années. Cet article présente aussi le travail effectué auprès de patients de sexe masculin qui suivent une thérapie de groupe au sein du service. Il met en lumière les défis auxquels les hommes sont confrontés, en particulier dans la société israélienne, lorsqu'ils doivent faire face à une maladie potentiellement mortelle.
[Adaptation de l'Intro.]
This longitudinal nonheroic narrative study allows familiarity with personal and societal transitions in the self-identity of individuals with life-threatening cancer. The theoretical anchor is Bion's container-contained theory. Five interviews with a terminally ill hospitalized male in his 30s were conducted along intervals of between 6 and 8 weeks, up to 2 months before his death. Data were analyzed using the selection mechanisms method. Findings provide insights about the hospitalization experience, his grief, and disenfranchised grief. A rigid mode of container-contained relationships with clinicians created disenfranchised grief. Reflection and coherence among self-identities lead to inner strength and emotional growth despite the body's deterioration. Clinicians have a role in holistic identity transitions of individuals with cancer. Findings illuminate practical recommendations that clinicians may adopt to improve the experience of individuals suffering from cancer at the chronic and terminal phase of illness.
In the context of the end of life, many authors point out how the experience of identity is crucial for the well-being of patients with advanced disease. They define this identity in terms of autonomy, control, or dependence, associating these concepts with the sense of personal dignity. From the perspective of the phenomenology of embodiment, Kay Toombs and other authors have investigated the ways disease can impact on the subjective world of patients and have stressed that a consideration of this personal world can promote understanding and recognition of their experience. Based on the findings of qualitative studies of the perception of dignity and autonomy in patients at the end of life, this analysis assesses concepts such as being-in-the-world in illness, embodiment, lived body versus objective body or the gaze of the other from a Toombsian phenomenological perspective.
PURPOSE: Siblings of children and young people diagnosed with cancer are commonly reluctant to talk about their experiences due to the circumstances of the illness situation. This article aims to bring voice to experience and inform practice by investigating what and how three young sisters narrate about their illness experiences in personal blogs on the Internet.
METHODS: A narrative methodology for the analysis of life storytelling was applied primarily to investigate the sister's coping strategies and support needs.
RESULTS: The results show how the sisters constructed their own space for narration, with the main aims of expressing their feelings about the illness and seeking social support. The telling of their experiences along with encouraging comments from a supportive audience enabled a change in position from feeling neglected and silenced to being a recognized agent and caring sister. In addition, through their narrative coping the sisters went from powerless to powerful in their position in relation to cancer.
CONCLUSION: The results highlight the need for siblings to be able to narrate experience in a supportive context, where the processing of their relationship with the ill sister/brother should be understood as an important element of their coping with cancer and death.
Most of the literature on reincarnation among the Druze attempts to shed light on its history and on those who believe in it. In this paper, we will argue that the Druze’s belief in reincarnation serves as one of the central components in defining their ethno-religious identity. Our study is based on an analysis of 30 semi-structured interviews with Israeli Druze university students. Findings suggest that the belief in reincarnation plays an important role in the lives of the Druze and it appears to serve as the most outstanding component in the young Druze’ definition of their primordial identity.
This paper takes a novel approach to the active bioethical debate over whether advance medical directives have moral authority in dementia cases. Many have assumed that advance directives would lack moral authority if dementia truly produced a complete discontinuity in personal identity, such that the predementia individual is a separate individual from the postdementia individual. I argue that even if dementia were to undermine personal identity, the continuity of the body and the predementia individual's rights over that body can support the moral authority of advance directives. I propose that the predementia individual retains posthumous rights over her body that she acquired through historical embodiment in that body, and further argue that claims grounded in historical embodiment can sometimes override or exclude moral claims grounded in current embodiment. I close by considering how advance directives grounded in historical embodiment might be employed in practice and what they would and would not justify.
PURPOSE: Migrants experience challenges settling into a new society, while retaining their cultural and religious values. Concurrently facing an end-of-life illness can result in existential distress affecting quality of dying. This study aimed to explore the lived experience of migrants dying away from their country of birth or origin.
METHODS: The study design used a phenomenological approach using Heidegger's philosophy to gather and interpret dying migrants' stories. Participants were a purposive sample of New Zealand immigrants experiencing end-of-life illness and under hospice care. Participants were interviewed at home. Coherent stories were drawn from the transcribed interviews and analysed using iterative methods. Interpretive notions were formed through contemplation and writing.
RESULTS: The ten participants, seven males and three females, were of different ethnicities and countries of origin. Three notions emerged. The first was dual possession of a new hybrid identity developed in their adoptive country, and an inner ethnic and cultural identity, in varying degrees of harmony with each other. The second was being in life review-reliving homeland memories and letting go of dreams. The third notion showed how they sought resolution by enacting continuity through their children, hoping for a final homeland visit, or conveying their dying wishes.
CONCLUSIONS: How life review was enacted for each migrant and resolution depended on finding some degree of belonging in their country of adoption. Implications for end-of-life care include education to increase practitioner awareness and use of formal and informal life review. Enhancing spiritual well-being can assist resolution of end-of-life adjustment.
Some authors have questioned the moral authority of advance directives (ADs) in cases in which it is not clear if the author of the AD is identical to the person to whom it later applies. This article focuses on the question of whether the latest results of neuroimaging studies have moral significance with regard to the moral authority of ADs in patients with disorders of consciousness (DOCs). Some neuroimaging findings could provide novel insights into the question of whether patients with DOCs exhibit sufficient psychological continuity to be ascribed diachronic personal identity. If those studies were to indicate that psychological continuity is present, they could justify the moral authority of ADs in patients with DOCs. This holds at least if respect for self-determination is considered as the foundation for the moral authority of ADs. The non-identity thesis in DOCs could no longer be applied, in line with clinical and social practice.
PURPOSE: Cancer threatens the social well-being of patients and their informal caregivers. Social life is even more profoundly affected in advanced diseases, but research on social consequences of advanced cancer is scarce. This study aims to explore social consequences of advanced cancer as experienced by patients and their informal caregivers.
METHODS: Seven focus groups and seven in-depth semi-structured interviews with patients (n = 18) suffering from advanced cancer and their informal caregivers (n = 15) were conducted. Audiotapes were transcribed verbatim and open coded using a thematic analysis approach.
RESULTS: Social consequences were categorized in three themes: "social engagement," "social identity," and "social network." Regarding social engagement, patients and informal caregivers said that they strive for normality by continuing their life as prior to the diagnosis, but experienced barriers in doing so. Regarding social identity, patients and informal caregivers reported feelings of social isolation. The social network became more transparent, and the value of social relations had increased since the diagnosis. Many experienced positive and negative shifts in the quantity and quality of their social relations.
CONCLUSIONS: Social consequences of advanced cancer are substantial. There appears to be a great risk of social isolation in which responses from social relations play an important role. Empowering patients and informal caregivers to discuss their experienced social consequences is beneficial. Creating awareness among healthcare professionals is essential as they provide social support and anticipate on social problems. Finally, educating social relations regarding the impact of advanced cancer and effective support methods may empower social support systems and reduce feelings of isolation.
This article examines the function of music during contemporary funerals in the Netherlands. Using a performance-based approach, this article shows that music adds to the ritual dimension of contemporary funerals, by relating the music to the funeral itself, the deceased person's identity, and to emotions. Zooming in on the music that in contemporary personalized funerals is selected because it is-one way or another-related to the deceased, it will be shown that the lyrical content of this music is less important than social and emotional aspects. Theoretically, the concept of the musical eulogy is introduced as a hermeneutic tool to examine music in ritualized contexts.
Following deceased organ donation and transplantation, the narratives of families of donors and organ recipients become connected. This is acknowledged when parties receive anonymous information from donation agencies and transplant centres, when they exchange correspondence or when they meet in person. This article reviews literature describing the experience from the points of view of donor families, recipients, and other stakeholders to explore the dynamic system that evolves around this relationship. Findings highlight a link between identity development and ongoing adjustment and will assist those supporting donor families and recipients to make decisions that fit meaningfully.
Les débats actuels sur le deuil périnatal et la nomination civile des enfants morts-nés ouvrent un nouveau champ de l’éthique qui est abordé ici au travers des discours des familles endeuillées ainsi que par les discours juridiques et médicaux. Le nom porte métonymiquement l’individu, qu’il ait vécu ou non. La nomination des bébés décédés prématurément joue un rôle essentiel dans le processus de deuil des parents concernés : la reconnaissance du statut de parent passe par la reconnaissance de l’existence de l’enfant décédé, et donc par sa nomination et son inscription dans le registre d’état civil. En outre, cette problématique associe la question de la désignation des parents endeuillés pour lesquels il n’existe pas de terme leur permettant de s’auto-désigner, d’où des néologismes tels que mamange ou parange. Cette étude discursive amorce l’ébauche d’une éthique de la nomination, mettant en jeu des notions telles que l’empathie, la mémoire discursive ou le devoir de mémoire. Le nom n’est pas seulement un désignatif, ses enjeux sont aussi éthiques et sociaux.
The impact of interpersonal violence extends beyond the victims and perpetrator(s). The purpose of this research was threefold: (a) to identify whether college students' very early reactions to an on-campus shooting were associated with well-known predictors of distress, (b) to examine whether grief and distress reactions were distinguishable in the early days following a shooting, and (c) to investigate whether a compassionate self-identity was uniquely associated with grief but not distress. Beginning just 3 days after an early morning shooting that killed one student and injured three others, university students ( N = 408) completed an online questionnaire. Grief, but not distress, was associated with a sense of solidarity with other students and a compassionate self-identity. General distress was associated with prior mental health difficulties and exposure to the shooting. Acute stress was positively associated with being female, having prior mental health difficulties, media exposure, perceived similarity to victims, less victim blame, social support, and social strain. Results suggest that grief reactions that arise in the early days following a collective loss may serve as important psychosocial resources in coping with interpersonal violence.
This study explored bereaved mothers' responses to the death of a child from cancer, with a focus on identifying adaptive and complicated grief reactions. To understand the unique meaning of their loss, in-depth interviews were conducted with 13 mothers at two time points. Interpretative phenomenological analysis-guided by meaning-making theories of loss-revealed five master categories: the perceptions of the child's life with cancer and death from the disease, changed self-identity, coping style, developing an ongoing relationship to the deceased child, and the postdeath social environment. Each of these master categories and associated subthemes provided insights into the characteristics of the bereaved mothers' adaptive and complicated grief responses to their loss. Given all the mothers evidenced multiple forms or types of these responses over time, they could not be categorized as adaptive or complicated grievers. However, the varying proportions of each of these responses highlighted differences in overall bereavement adaptation.