OBJECTIVE: To identify common themes and topics that patients nearing the end of life want to discuss when sharing their life stories.
METHODS: Twenty audio-recorded transcripts of open-ended interviews of patients cared for by a palliative care team when approaching the end of life were analyzed using a qualitative analysis.
RESULTS: Qualitative analysis revealed that the primary contextual factors that patients drew upon to generate his or her life story are life events (including upbringing, job, education, travel, trauma, hardships, special events, military history, and hobbies), family and support system, and values and beliefs. Participants used their current medical condition, which included mortality, morbidity, and prognosis, to frame their life story.
CONCLUSION: Patients facing serious illness incorporate four major themes when reflecting upon their lives to create their personal life story: life events, family and support system, values and beliefs, and current medical condition.
Background: Substituted judgment assumes adequate knowledge of patient’s mind-set. However, surrogates’ prediction of individual healthcare decisions is often inadequate and may be based on shared background rather than patient-specific knowledge. It is not known whether surrogate’s prediction of patient’s integrative life-story narrative is better.
Methods: Respondents in 90 family pairs (30 husband-wife, 30 parent-child, 30 sibling-sibling) rank-ordered 47 end-of-life statements as life-story narrative measure (Q-sort) and completed instruments on decision-control preference and healthcare-outcomes acceptability as control measures, from respondent’s view (respondent-personal) and predicted pair’s view (respondent-surrogate). They also scored their confidence in surrogate’s decision-making (0 to 4 = maximum) and familiarity with pair’s healthcare-preferences (1 to 4 = maximum). Life-story narratives’ prediction was examined by calculating correlation of statements’ ranking scores between respondent-personal and respondent-surrogate Q-sorts (projection) and between respondent-surrogate and pair-personal Q-sorts before (simulation) and after controlling for correlation with respondent-personal scores (adjusted-simulation), and by comparing percentages of respondent-surrogate Q-sorts co-loading with pair-personal vs. respondent-personal Q-sorts. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was determined by percent concordance. Results were compared among subgroups defined by intra-pair relationship, surrogate’s decision-making confidence, and healthcare-preferences familiarity.
Results: Mean (SD) age was 35.4 (10.3) years, 69% were females, and 73 and 80% reported = very good health and life-quality, respectively. Mean surrogate’s decision-making confidence score was 3.35 (0.58) and 75% were = familiar with pair’s healthcare-preferences. Mean (95% confidence interval) projection, simulation, and adjusted-simulation correlations were 0.68 (0.67–0.69), 0.42 (0.40–0.44), and 0.26 (0.24–0.28), respectively. Out of 180 respondent-surrogate Q-sorts, 24, 9, and 32% co-loaded with respondent-personal, pair-personal, or both Q-sorts, respectively. Accuracy in predicting decision-control preference and healthcare-outcomes acceptability was 47 and 52%, respectively. Surrogate’s decision-making confidence score correlated with adjusted-simulation’s correlation score (rho = 0.18, p = 0.01). There were significant differences among the husband-wife, parent-child, and sibling-sibling subgroups in percentage of respondent-surrogate Q-sorts co-loading with pair-personal Q-sorts (38, 32, 55%, respectively, p = 0.03) and percent agreement on healthcare-outcomes acceptability (55, 35, and 67%, respectively, p = 0.002).
Conclusions: Despite high self-reported surrogate’s decision-making confidence and healthcare-preferences familiarity, family surrogates are variably inadequate in simulating life-story narratives. Simulation accuracy may not follow the next-of-kin concept and is 38% based on shared background.
Background: Cannabis is increasingly used by persons at end of life to ameliorate symptoms such as pain, spasticity, anorexia, or anxiety. Cannabis hyperemesis is a distressing adverse effect of chronic use and may cause significant morbidity. Unfortunately, the clinical presentation of this syndrome may be subtle in a person with complex medical issues or disability. Providers must remain vigilant for possible variations in presentation in these populations.
Aim: To assess literature on cannabis hyperemesis and present unique considerations for clinical assessment and treatment for patients at end of life.
Design: Initial literature scoping yielded limited evidence on the subject in the setting of chronic disease and disability. A case of cannabis hyperemesis in a person with advanced amyotrophic lateral sclerosis is presented to illustrate challenges in diagnosis and management in this setting. A narrative synthesis of current literature on assessment and management and special considerations for evaluation and treatment for patients under palliative care was performed.
Results: Several unique considerations for the diagnosis and management of cannabis hyperemesis in palliative care patients are highlighted in the case presented, including: (1) Symptoms may possibly be abolished through decrease rather than complete abstinence from cannabis, (2) Frequent hot baths may not be present in patients with physical impairments in activities of daily living, and (3) Management of primary symptoms (pain, spasticity, nausea, and anxiety) in the end-of-life care patient must be considered to maximize comfort.
Conclusion: The presentation of cannabis hyperemesis may be atypical in palliative care patients due to disability. More work is needed to improve risk stratification for patients using cannabis for palliative care.
PURPOSE OF REVIEW: People with cancer commonly experience persistent pain and psychological distress. Interventions are needed which address the multifactorial nature of pain and depression, yet few studies have examined the impact of mindfulness-based interventions (MBIs) for cancer-related pain and depression.
RECENT FINDINGS: MBIs for cancer-related pain and depression can be effectively delivered across a range of modalities and show promise for alleviating mood and some physical health symptoms, although not always pain. There is some evidence for the cost-effectiveness of MBIs.
SUMMARY: The field of MBIs would benefit from greater methodological rigour and investigation into a broader range of cancer populations to increase the knowledge base and in turn the evidence base on which interventions can be developed to the benefit to patients with cancer-related pain and depression.
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.
Advanced care planning (ACP) and end-of-life discussions are especially difficult among persons living with human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) as a result of patients' lack of trust in family and providers, HIV-related stigma, misunderstood spirituality concerns, social isolation, and other factors. Previous research has demonstrated that relatively few persons living with HIV/AIDS engage in ACP, yet developing culturally sensitive methods of ACP is imperative. One such method is digital storytelling, a video narrative that can be used to share ideas or aspects of a life story.
The aim of this study was to examine perspectives from providers and persons living with HIV/AIDS about the acceptability, benefits, and technological challenges of and barriers to using digital storytelling for ACP. A qualitative descriptive design was employed using focus groups of 21 participants in South Central Appalachia. Transcribed data were analyzed using qualitative content analysis. Findings revealed patient and provider ideas about ACP, factors related to digital story acceptability, stigma against persons living with HIV/AIDS, and concern for the legality of ACPs expressed in digital story format. Future research should focus on the process of creating digital stories as an intervention to improve ACP in this unique aggregate.
"Qu'est-ce que tu vas faire après moi ?" est le témoignage d'un homme habité par cette question que sa compagne lui pose juste avant de mourir. Le désarroi est si violent que l'urgence pour lui est de partir, mais ne pas disparaître, au contraire. Il prend la route pendant plus d'un an à bord d'un van, à la rencontre de tous leurs amis aux quatre coins de l'hexagone et à l'étranger, jusqu'en Colombie où ils se sont connus. Il écrit sur un cahier le récit du deuil qu'il est en train de vivre au jour le jour, en direct avec ses émotions et l'impressionnante alchimie qui s'opère autour de l'absence.
Coping affects somatic and psychological outcomes. This article explores narratives in a book, Kamikaze Diaries: Reflections of Japanese Student Soldiers, which report on the ways of coping used by each kamikaze participant before and during military service. The purpose of this study is to observe the possibility of a trend in coping strategies and consider how these trends inform us about other populations facing imminent death. This study analyzed data and extracted meaning from the narratives in the book (thematic content analysis). Within the thematic content analysis, the Ways of Coping scale was used, which describes the coping strategies people use when facing problems. The most frequently used coping strategies before they entered the military were "Accept Responsibility," "Endurance/Obedience/Effort," and "Self-Control," while once in the military, they were "Accept Responsibility" and "Endurance/Obedience/Effort." All the coping strategies used by kamikaze pilots appeared to focus on the passive self, which may be the type of coping in other populations facing death.
The aim of this study was to gain an understanding of the experiences of extended longevity as perceived by centenarians. Centenarians (people over 100 years of age) are the fastest growing group of the ageing population in developed countries. Ten centenarians aged between 100 and 106 years, living in the Lower North Island of New Zealand, participated in the study. The biographical narrative interpretive method of inquiry guided data collection through face-to-face interviews, and thematic analysis was subsequently undertaken. Four themes were identified: (a) ‘becoming a centenarian: ‘Just another day’; (b) ‘growing up in a privileged environment’ that revealed four sub-themes: ‘having freedom and choice’, ‘being loved and nurtured’, ‘living healthy lifestyles’ and having ‘good education prospects’; (c) ‘unique opportunities in adult life’; and (d) ‘positive ageing and celebration of longevity’. The centenarians spoke nonchalantly about their experience of turning 100 and positive personalities were prominent features of the participants, who all expressed a sense of acceptance and satisfaction with life and contentment with living in the present, a feature throughout their lives that was ongoing and at an intergenerational level. This study has provided further insights into the existing literature on longevity and through the narratives of the centenarians has demonstrated the value of Erikson's psycho-social stages of development and Tornstam's theory of gerotranscendence when considering positive ageing.
La narrativité occupe une place de choix dans lâ€™éthique médicale, mais rejoint également les fondements dâ€™une philosophie du soin en soins palliatifs. Sâ€™inspirant entre autres des réflexions sur lâ€™identité narrative de Paul RicÅ“ur, la clinique sâ€™appuie de plus en plus sur la narrativité pour permettre « dâ€™adopter le point de vue des personnes souffrantes » (Rita Charon), dâ€™aborder la personne malade dans sa globalité, et dépasser les « limites » de la rationalité médicale. Il est à noter que cette présence de la thématique de la narrativité en soins palliatifs influe sur les pratiques de soin et dâ€™accompagnement, mais devient également un enjeu de formation, si on se réfère notamment à lâ€™entrée des récits de situation complexe authentiques (RSCA) dans différents dispositifs de formation en soins palliatifs. Nous nous proposons alors de questionner, du point de vue éthique et philosophique cette mobilisation de la narrativité en soins palliatifs, dont on présuppose souvent quâ€™elle permettrait dâ€™intégrer la question de la subjectivité du patient au sein de la clinique. Notre contribution portera ainsi sur une critique épistémologique, mais également éthique de lâ€™approche narrative dans lâ€™accompagnement de la fin de vie : Quels sont les fondements et les implications pratiques de la notion dâ€™identité narrative ? Comment ces récits peuvent faire lâ€™objet dâ€™une forme de régulation des pratiques, dans le sens dâ€™un accompagnement de la personne dans sa globalité, mais qui court le risque dâ€™un usage standardisé ?
This study investigated whether the 30 prompted categories of Gillies, Neimeyer, and Milmanâ€™s (2014) Meaning of Loss Codebook (MLC) emerged in the unprompted and naturalistic blogs of four grieving widows. Furthermore, the study aimed to examine how such meanings emerged through each participantâ€™s processes of narrativization. Results showed that 26 of 30 MLC meanings emerged over 582 posts. Furthermore, in blogs demonstrating continued bonds with the deceased, MLC meanings formed networks integrated within narrative pathways. Conversely, in cases where severing ties were formulated as a condition of â€œmoving on,â€ meanings appeared in isolation of narrative and complications in narrativization were evident.
Two bereaved mothers recount how they made meaning after the deaths of their children, recounting how opportunities to tell their stories in medical settings enabled them to construct narratives that promoted resilience and a sense of control. Pediatric palliative care can be conceived as opening space for patients and guardians to tell their stories outside of the specifics of illness, so medical teams can work to accommodate families' values and goals, thereby initiating the process of meaning making. Viewing videos of parent stories enables medical trainees to enhance their communications skills, empathy, and compassion.
Atteint d'un cancer du poumon, le documentariste Christophe Otzenberger fait face à la maladie en filmant ceux qui, comme lui, tentent d'apprivoiser la mort.
Dans l'hôpital du littoral breton où il est traité, des femmes et des hommes de tous âges, eux aussi concernés par une maladie chronique ou une échéance qu'ils savent proche, se débrouillent comme ils peuvent avec la vie qui se dérobe. Leur dialogue et leurs arrangements incessants avec ces jours qui restent est une preuve éclatante de la flamme qui les anime, jusqu'au bout.
Avec l'aide de sa complice Stéphane Mercurio, qui l'a filmé tout au long de son tournage, Christophe Otzenberger (La conquête de Clichy) dialogue avec ses semblables et documente le quotidien des sursitaires, entre petits arrangements et questions insolubles. À la fois aperçu d'un film en pleine création et bel hommage à la ténacité des malades, son travail fait éclore la poésie, la douceur et – plus souvent qu'on ne pourrait le croire – la drôlerie qui circule dans les couloirs des hôpitaux. Christophe Otzenberger est mort en juin 2017, avant d'avoir pu débuter le montage de ce beau dernier documentaire, terminé par Stéphane Mercurio.
[Extrait résumé du film]
P.S. I Have Cancer is the raw and incredibly human account of the life of Dr Mark Sims, a junior doctor with stage 4 melanoma. Mark’s story begins at his diagnosis, days before his 27th birthday, and ends with a chapter written by his mum, Sue Sims, giving life to the future he’d never have. It closes with a final letter written by Mark's fiancé, Georgie, for his memorial service. What could be a tragic read is not. Instead of being floored by this prognosis, Mark drew light from dark, using his story to affirm who he is and what he loves: science, Europe, Center Parcs, family, friends and Georgie – and also to air his bugbears: Brexit, alternative medicine, and, indeed, the spelling of Center Parcs. The result is a bridge between memoir and a love letter to, well, everything.
This paper offers a reading of psychoanalyst Abram Kardiner's memoir, which tells the story of his analytic encounter with Freud in the early 1920s. The memoir describes Kardiner's dependence on caretakers, parents, and psychoanalysts, as well as painful separations that are understood in relation to his deprived childhood. These memories were revived in analysis and then reactivated in its abrupt termination. In retrospect, it can be seen that Kardiner's work of memory and mourning is tied in ambiguous ways to Freud's mourning over his daughter Sophie at the time. The present paper uses ideas on writing and translation by Derrida, Ricoeur, and Laplanche to suggest a comparative reading of the texts written by the analyst and the patient. This reading views the essence of autobiographical writing not only as a reconstruction of the past but also as a new translation, with an emphasis on the experience of loss.
L'adolescence est une période particulière d'autant plus chez les adolescents gravements malades. A travers des situations tirées de la fiction et du réel, l'auteure illustre ce que peut vivre un adolescent atteint d'une maldie létale.