Background: Ageist perceptions continue to constrain the choices available to older adults in terms of their sexual expression.
Objective: This paper discusses the last stage of life, when older adults may be progressing through a terminal disease, dying and in palliative care environments. Are they (or is anyone, at any age) interested in remaining intimate when they are dying? If yes, how is this interest accepted/facilitated within such environments?.
Results: This article does not claim to be definitive, but provides a broad, preliminary sketch of this neglected research area. It suggests that, for many, sexual expression and intimate connection continue to be important until the very end of the lifespan.
Conclusions: As such, this important topic deserves recognition as part of an overall response to sexuality and ageing by policy makers and health professionals. Its importance will only become more significant due to greater longevity and population ageing.
Much of the scholarly literature sees death as a taboo topic for Chinese. To test this assumption, this study held seven focus groups in the Greater Toronto Area in 2017. It found that the majority of the older Chinese immigrant participants talked about death freely using either the word death or a euphemism. They talked about various issues including medical treatment and end-of-life care, medical assistance in dying, death preparation, and so on. A small number did not talk about death, but it seemed their reluctance was related to anxiety or discomfort or simply reflected a choice of words. The study concludes death as taboo could be a myth, at least for older Chinese immigrants.
Depuis l’aube de la modernité, la mort est tendanciellement disqualifiée. Mort tabou, mort interdite, déni de la mort, les mots ne manquent pas pour évoquer la mort et son rejet.
Ce livre met en perspective le traitement contemporain de la mort au regard de la psychanalyse, en appui sur divers travaux d'historiens, de philosophes, en lien avec la littérature et à la lumière des expériences personnelles relatives à la mort. L’analyse des pratiques entourant la mort et leur abandon vient questionner la volonté de l’homme de la dépasser par la technique. Une des questions centrales porte sur la façon dont les sujets parviennent à composer avec le rejet de la mort, à inventer une solution somme toute personnelle pour composer avec la perte. Dans une époque marquée par la solitude et l’érosion du vivre ensemble, la mort aujourd’hui nous réduit irrémédiablement à une affaire personnelle.
Cette ouvrage présente une réflexion autour du fait de mourir dans un contexte médical comme nouvelle pratique admises par les sociétés occidentales au XXIe siècle. L'auteur s'interroge sur le lien entre cet habitus et le déni global de la mort en Europe et en Amérique du Nord.
The way death is (not) dealt with is one of the main determinants of the current crisis of cancer care. The tendency to avoid discussions about terminal prognoses and to create unrealistic expectations of fighting death is seriously harming patients, families and healthcare professionals, and the delivery of high-quality and equitable care. Drawing on different literature sources, we explore key dimensions of the taboo of death: medical, policy, cultural. We suggest that the oncologist, from a certain moment, could take on the role of amicus mortis, a classical figure in the past times, and thus accompanying patients towards the end of their life through palliation and linking them to psychosocial and ethical/existential resources. This presupposes the implementation of Supportive Care in Cancer and the ethical idea of relational autonomy based on understanding patients' needs considering their sociocultural contexts. It is also key to encourage public conversations beyond the area of medicine to re-integrate death into life.
Au vue de notre expérience en soins palliatifs, nous nous sommes demandés pourquoi la sexualité des patients ne fait-elle pas partie intégrante de la prise en charge globale en soins palliatifs ? Dans notre cadre conceptuel, nous avons travaillé sur les concepts de sexualité, de tabous culturels, de mécanismes de défense des soignants et enfin de dissonance cognitive.
Ce cadre théorique nous a amené à formuler deux hyptohèses :
L'émergence de mécanismes de défense chez les soignants entrave l'ntégration de la sexualité dans la prise en charge globale en soins palliatfs. Ces mécanismes de défense sont l'expression d'une dissonance cognitive.
Afin d'explorer nos hypothèses, nous avons réalisé dix entretiens semi-dirigés avec des soigants travaillant auprès de patients en fin de vie (en unité de soins palliatifs ou en service avec des lits identifiés de soins palliatifs). Après l'analyse des résultats, nos deux hypothèses ont été validées. La confrontation des résultats de l'étude aux apports théoriques nous a permis de dégager des préconisations afin d'intégrer le besoin de sexualité dans notre prise en charge.
Un livre audacieux qui ose parler de la mort sans tabous.
La mort, on n’en veut rien savoir, ou le moins possible ! Tête dans le sable, oreilles bouchées, position de fuite immédiate dès que le sujet est levé. Or il faut bien, tout au long de notre vie, oser la regarder. Qu’on le veuille ou non, elle s’impose à nous à travers les pertes, les deuils, et en vieillissant avec la perspective de sa propre disparition.
Paule Giron relève le défi. Avec son regard aigu et sa plume acérée – sans se départir de son humour – elle nous entraîne dans une exploration de nos attitudes face à la mort : du déni à la peur de disparaître ; de l’espoir d’un au-delà au rationalisme « scientifique »…
Sans complaisance et avec lucidité, elle évoque le temps de la douleur, le temps du souvenir, le temps de l’attente avant la mort… Autant de moments où sont mobilisées en nous forces et faiblesses contradictoires, qu’il s’agisse de ceux que l’on aime ou de nous-même.
[Extrait résumé éditeur]
Death discourse provides interesting material to determine how societies and cultures cope with death and the sorrow of losing a beloved one. Several aspects can be analyzed: content, language, design, and so on. This article describes a diachronic bottom-up analysis of the metaphorical language in 150 epitaphs from Belgian cemeteries. The analysis allows us to determine whether attitudes toward death and the taboo to talk directly about it have changed. Based on the existing frameworks, 13 recurring metaphors were identified and analyzed. Their occurrences are linked to the period in which they were written and the age and the gender of the deceased. Epitaphs are a stable genre on all levels of analysis. The results indicate that people are still reluctant to talk in a straightforward way about death as metaphors with positive connotations prevail.
Palliative care (PC) names as one of its central aims to prevent and relieve suffering. Following the concept of "total pain", which was first introduced by Cicely Saunders, PC not only focuses on the physical dimension of pain but also addresses the patient's psychological, social, and spiritual suffering. However, the goal to relieve suffering can paradoxically lead to a taboo of suffering and imply adverse consequences. Two scenarios are presented: First, PC providers sometimes might fail their own ambitions. If all other means prove ineffective terminal sedation can still be applied as a last resort, though. However, it may be asked whether sedating a dying patient comes close to eliminating suffering by eliminating the sufferer and hereby resembles physician-assisted suicide (PAS), or euthanasia. As an alternative, PC providers could continue treatment, even if it so far prove unsuccessful. In that case, either futility results or the patient might even suffer from the perpetuated, albeit fruitless interventions. Second, some patients possibly prefer to endure suffering instead of being relieved from it. Hence, they want to forgo the various bio-psycho-socio-spiritual interventions. PC providers' efforts then lead to paradoxical consequences: Feeling harassed by PC, patients could suffer even more and not less. In both scenarios, suffering is placed under a taboo and is thereby conceptualised as not being tolerable in general. However, to consider suffering essentially unbearable might promote assisted dying not only on an individual but also on a societal level insofar as unbearable suffering is considered a criterion for euthanasia or PAS.
Dans son article « Changements post mortem, contrôle étatique et transmission de l’impossible en psychanalyse », le professeur Shingû cite un célèbre poème zen : « Vivant devenir mort et une fois devenu mort librement accompli tout acte sera bon ». N’est-ce pas justement la position d’Antigone telle que Lacan l’analyse dans un de ses séminaires ? À l’opposé, le Christ dit à ses disciples : « Laissez les morts ensevelir leurs morts ! » Cette parole, où l’on voit d’habitude une néantisation de la mort et du deuil à la lumière de l’espérance d’une vie éternelle, semble condamner non seulement Antigone, mais aussi la plupart des sagesses antiques ou non chrétiennes. Cependant, cette injonction ne pourrait-elle pas nous encourager à admettre et accueillir au plus profond de nous, plutôt que dans d’étatiques cimetières, la présence encombrante de nos morts ?
Pour Megan Divine, psychotérapeuthe de formation, le choc de la mort accidentelle de son conjoint a été incroyablement brutal. "Je savais que la mort était un sujet tabou, mais je n'avais jamais réalisé à quel point ce tabou ostracisait les personnes en deuil", raconte-t-elle. Commence alors ce combat, qu'elle appelle la révolution du deuil, et qu'elle mène encore aujourd'hui afin de transformer nos attitudes tant sur le plan interpersonnel que du point de vue collectif.
BACKGROUND: Noncancer patients with life-limiting diseases often receive more intensive level of care in their final days of life, with more cardiopulmonary resuscitation performed and less do-not-resuscitate (DNR) orders in place. Nevertheless, death is still often a taboo across Chinese culture, and ethnic disparities could negatively affect DNR directives completion rates.
OBJECTIVES: We aim to explore whether Chinese noncancer patients are willing to sign their own DNR directives in a palliative specialist clinic, under a multidisciplinary team approach.
DESIGN: Retrospective chart review of all noncancer patients with life-limiting diseases referred to palliative specialist clinic at a tertiary hospital in Hong Kong over a 4-year period.
RESULTS: Over the study period, a total of 566 noncancer patients were seen, 119 of them completed their own DNR directives. Patients had a mean age of 74.9. Top 3 diagnoses were chronic renal failure (37%), congestive heart failure (16%), and motor neuron disease (11%). Forty-two percent of patients signed their DNR directives at first clinic attendance. Most Chinese patients (76.5%) invited family caregivers at DNR decision-making, especially for female gender (84.4% vs 69.1%; P = .047) and older (age >75) age group (86.2% vs 66.7%; P = .012). Of the 40 deceased patients, median time from signed directives to death was 5 months. Vast majority (95%) had their DNR directives being honored.
CONCLUSION: Health-care workers should be sensitive toward the cultural influence during advance care planning. Role of family for ethnic Chinese remains crucial and professionals should respect this family oriented decision-making.
AIMS AND OBJECTIVES: To identify factors that influence the engagement of Chinese Australians with advance care planning.
BACKGROUND: Despite the benefits of advance care planning, there is a low prevalence of advance care planning in the Chinese Australian community. Reasons for this are often cited as cultural considerations and taboos surrounding future medical planning and death; however, other logistical factors may also be important.
DESIGN: This qualitative study used a thematic analysis grounded theory approach to explore facilitators and barriers to engagement in advance care planning.
METHODS: Semistructured interviews were conducted in-language (Mandarin or Cantonese) exploring the views of a purposive sample of 30 community-dwelling older Chinese Australians within Victoria, Australia.
RESULTS: Three key themes were identified: knowledge of, attitudes towards and needs for undertaking advance care planning amongst the Chinese Australians. There was a low awareness of advance care planning amongst the participants and some confusion regarding the concept. Most participants reported positive attitudes towards advance care planning but acknowledged that others may be uncomfortable discussing death-related topics. Participants would want to know the true status of their health and plan ahead in consultation with family members to reduce the burden on the family and suffering for themselves. Language was identified as the largest barrier to overcome to increase advance care planning awareness. In-language materials and key support networks including GPs, family and Chinese community groups were identified as ideal forums for the promotion of advance care planning.
CONCLUSIONS: The participants of this study were open to conversations regarding future medical planning and end-of-life care, suggesting the low uptake of advance care planning amongst Chinese Australians is not culturally motivated but may be due a lack of knowledge relating to advance care planning.
RELEVANCE TO CLINICAL PRACTICE: The results highlight the need to provide access to appropriate in-language advance care planning resources and promotion of advance care planning across the Chinese community.
This paper argues that there is a cultural taboo against the public recognition and expression of perinatal grief that hinders parents' ability to mourn and their psychological adjustment following a loss. It is proposed that this cultural taboo is recreated within the therapy relationship, as feelings of grief over a perinatal loss are minimized or avoided by the therapist and parent or patient. Importantly, it is suggested that if these cultural dynamics are recognized within the therapy relationship, then psychotherapy has the immense opportunity to break the taboo by validating the parent's loss as real and helping the parent to mourn within an empathic and affect-regulating relationship. Specifically, it is suggested that therapists break the cultural taboo against perinatal grief and help parents to mourn through: acknowledging and not pathologizing perinatal grief reactions, considering intrapsychic and cultural factors that impact a parent's response to loss, exploring cultural reenactments within the therapy relationship, empathizing with the parent's experience of loss and of having to grieve within a society that does not recognize perinatal loss, coregulating the parent's feelings of grief and loss, and helping patients to create personally meaningful mourning rituals. Lastly, the impact of within and between cultural differences and therapist attitudes on the therapy process is discussed.
Quantitative studies have found that suicide bereavement is associated with suicide attempt, and is perceived as the most stigmatising of sudden losses. Their findings also suggest that perceived stigma may explain the excess suicidality. There is a need to understand the nature of this stigma and address suicide risk in this group. We aimed to describe and compare the nature of the experiences of stigma reported by people bereaved by suicide, sudden unnatural death, and sudden natural death, and identify any commonalities and unique experiences. We conducted a population-based cross-sectional survey of 659,572 staff and students at 37 British higher educational institutions in 2010, inviting those aged 18–40 who had experienced sudden bereavement of a close contact since the age of 10 to take part in an on-line survey and to volunteer for an interview to discuss their experiences. We used maximum variation sampling from 1398 volunteer interviewees to capture a range of experiences, and conducted individual face-to-face semi-structured interviews to explore perceptions of stigma and support. We continued sampling until no new themes were forthcoming, reaching saturation at n = 27 interviews (11 participants bereaved by suicide). We employed thematic analysis to identify any distinct dimensions of reported stigma, and any commonalities across the three groups. We identified two key themes: specific negative attitudes of others, and social awkwardness. Both themes were common to interviewees bereaved by suicide, sudden unnatural death, and sudden natural death. All interviewees reported the experience of stigmatising social awkwardness, but this may have been experienced more acutely by those bereaved by suicide due to self-stigma. This study provides evidence of a persistent death taboo in relation to sudden deaths. There is potential for anti-stigma interventions to reduce the isolation and social awkwardness perceived by people bereaved suddenly, particularly after suicide loss.
BACKGROUND: Advance care planning (ACP) empowers patients to consider and communicate their current and future treatment goals. However, it can be an emotionally charged process for patients with kidney disease and their caregivers. This study aimed to describe the perspectives and attitudes of patients with end-stage renal disease (ESRD) and their caregivers toward ACP.
STUDY DESIGN: Qualitative study.
SETTING & PARTICIPANTS: Patients with ESRD (n=24) and their caregivers (n=15) aged 36 to 91 years at various stages of ACP ("not commenced," "in progress," or "completed") from 3 renal services.
METHODOLOGY: Semistructured interviews.
ANALYTICAL APPROACH: Transcripts were analyzed using thematic analysis.
RESULTS: 5 major themes were identified: articulating core values (avoiding futile and undignified treatment, reevaluating terms of dialysis, framing a life worth living, and refusing to be a burden), confronting conversations (signifying death and defeat, accepting inevitable death, and alleviating existential tension), negotiating mutual understanding (broaching taboos and assisting conflicted caregivers), challenging patient autonomy (family pressures to continue dialysis, grief diminishing caregivers' capacity, and leveraging support), and decisional disempowerment (lacking medical transparency and disappointment with clinical disinterest).
LIMITATIONS: Only English-speaking patients/caregivers participated in the interview.
CONCLUSIONS: ACP provides patients with ESRD and their caregivers a conduit for accepting and planning for impending death and to express treatment preferences based on self-dignity and value of living. However, ACP can be considered taboo, may require caregivers to overcome personal and decisional conflict, and may be complex if patients and caregivers are unable to accept the reality of the patient's illness. We suggest that ACP facilitators and clinicians make ACP more acceptable and less confrontational to patients and caregivers and that strategies be put in place to support caregivers who may be experiencing overwhelming grief or who have conflicting goals, particularly when they are called on to make end-of-life decisions.
The question of withdrawing artificial nutrition and hydration from people in a permanent vegetative state sparks considerable ethical and legal debate. Therefore, understanding the elements that influence such a decision is crucial. However, exploring perceptions of artificial nutrition and hydration is methodologically challenging for several reasons. First, because of the emotional state of the professionals and family members, who are facing an extremely distressing situation; second, because this question mirrors representations linked to a deep-rooted fear of dying of hunger and thirst; and third, because of taboos surrounding death. We sought to determine the best method to explore such complex situations in depth. This article aims to assess the relevance of the photo-elicitation interview method to analyze the perceptions and attitudes of health professionals and families of people in a permanent vegetative state regarding artificial nutrition and hydration. The photo-elicitation interview method consists in inserting one or more photographs into a research interview. An original set of 60 photos was built using Google Images and participants were asked to choose photos (10 maximum) and talk about them. The situations of 32 patients were explored in 23 dedicated centers for people in permanent vegetative state across France. In total, 138 interviews were conducted with health professionals and family members. We found that the photo-elicitation interview method 1) was well accepted by the participants and allowed them to express their emotions constructively, 2) fostered narration, reflexivity and introspection, 3) offered a sufficient "unusual angle" to allow participants to go beyond stereotypes and habits of thinking, and 4) can be replicated in other research areas. The use of visual methods currently constitutes an expanding area of research and this study stressed that this is of special interest to enhance research among populations facing end-of-life and ethical issues.
As the United States experiences an epidemic of prescription drug abuse, and guidelines on safe practices in prescribing opioids in chronic pain have subsequently emerged from professional organizations and governmental agencies, limited guidance exists for prescribers of opioids to treat pain in patients with cancer or terminal illness. Patients with active cancer or terminal illness often have pain and are frequently prescribed opioids and other controlled substances. Current studies suggest that patients with cancer have similar rates of risk for misuse, abuse, and addiction as the general public. Moreover, palliative care and hospice programs appear poorly prepared for assessing or managing patients with aberrant behaviors or evidence of drug abuse. Further research and professional consensus are needed to help address the challenges associated with misuse, abuse, and addiction in patients with cancer and terminal illness.