Libre et éclairé : voilà comment devrait être un consentement viable, valable et authentique, tant dans le monde de la santé que dans celui des affaires. Mieux même, et plus conforme à l’actualité, est qu’il soit « libre et informé » : cela met en avant la personne concernée plutôt que le message et sa source lumineuse forcément en surplomb. Telles sont en tout cas les conditions qui lui donnent son label aux plans de la loi et de la déontologie, si ce n’est à celui de l’éthique. Pour autant, liberté et information se situent-elles exactement au même niveau fondateur ? Jouent-elles des rôles symétriques dans le processus qui conduit au oui ?
Le maintien à domicile des personnes gravement malades et en fin de vie ainsi que des personnes âgées fragilisées va augmenter considérablement ces prochaines années. Cette évolution est liée à des causes démographiques, à l’organisation des soins, aux politiques de santé ainsi qu’à des désirs individuels. Mais finir sa vie à domicile reste un choix qui engage une solidarité intergénérationnelle, familiale et sociétale, qui relève à la fois d’un bénévolat naturel, celui des proches, et d’un bénévolat organisé, celui des associations. Cet accompagnement représente un défi pour JALMALV car le cadre et les conditions d’accompagnement ne sont pas les mêmes qu’en institution. Ce bénévolat nécessite donc une réflexion et une formation pour pouvoir identifier les spécificités d’un accompagnement à domicile.
Le domicile est le lieu de vie habituel de la personne malade. C’est là qu’elle a vécu, souvent depuis de longues années, parfois presque toute sa vie. Ce lieu évoque une partie de son histoire, il est rempli de souvenirs personnels. C’est aussi un lieu qui lui assure sécurité et intimité. D’une certaine façon, c’est pour lui un cocon protecteur. Quand il accueille chez lui un bénévole d’accompagnement, celui-ci est en quelque sorte son « invité ». Il sera plus à l’aise pour parler de lui-même, de son vécu, de ses expériences, de ses émotions. Il sera plus enclin à faire des confidences.
Certes, les institutions, et en particulier les EHPAD, insistent sur le caractère privé de la chambre du résident et sur la nécessité de lui garantir une certaine intimité…
Cet ouvrage présente dix-neuf récits amusants, cruels ou tendres autour de la thématique de la fin de vie. La relation à la mort des divers personnages, enfant, personnes âgées, citadin, campagnard ou aventurier révèle leur manière d'envisager la vie, sereinement ou avec désespoir.
Cet ouvrage présente le rôle d'accompagnant de malades en fin de vie. Il explore tous les aspects de la relation complexe et bienveillante qui s'instaure entre le malade et son entourage médical et familial.
Les contributeurs proposent leurs réflexions autour de l'accompagnement en fin de vie ainsi que des citations. Ils abordent notamment l'aspect religieux de cet accompagnement, le soutien aux familles ou encore la réaction des pensionnaires d'une unité de vie lorsque l'un d'eux décède.
Un témoignage de résilience et de courage d'un homme atteint de la maladie de Charcot, syndrome neurodégénératif également appelé sclérose latérale amyotrophique (SLA). Lorsque lui est annoncé qu'il n'a plus que trois ans à vivre, l'auteur, déployant des ressources inespérées, décide de se battre et de continuer à vivre pour ses proches et pour lui-même malgré sa tétraplégie.
La pratique de l'assistance spirituelle en milieu hospitalier consiste, selon les textes législatifs, à répondre aux besoins spirituels du patient. Mais l'attente qu'éprouve un patient en fin de vie ne peut se réduire ni à un pur besoin, ni à un pur désir. A partir d'un travail anthropologique, philosophique et d'analyse des dialogues d'accompagnement, les notions d'hospitalité, de silence, de soin, de désir et d'éveil éclairent cette recherche. La présence siliencieuse répond en premier lieu à un appel exprimé par le patient. Cette hospitalité est un espace ouvert à une reconnaissance mutuelle de la vulnérabilité présente dans l'altérité. Le soin spirituel met en jeu le courage d'un travail intérieur. Il représente un secours capable de faire basculer la souffrance en clarté même en fin de vie ; il est une invitation au repos, à la confiance. Seul le silence peut signifier au patient, la nature de ce souffle qui l'habite et le transcende. Dans son accueil de l'impuissance, la présence silencieuse, comme soin spirituel, révèle la capacité d'éveil de la vie du patient jusqu'au dernier souffle comme un don.
Background: Few studies have specifically assessed the scope, nature and challenges of palliative and end-of-life care in rural general practice. These knowledge gaps limit the development of evidence-based policies and services for patients in the last months of life. This study aimed to explore the perspectives of general practitioners (GPs) and other stakeholders on rural GPs' involvement and challenges in providing palliative and end-of-life care in regional Australia.
Methods: A qualitative study involving five focus groups with 26 GPs based in rural/regional Western Australia together with 15 individual telephone interviews with four GPs and 11 other stakeholders involved in end-of-life care across Australia.
Results: The rural GPs' central role in end-of-life care was recognized by the majority of participants but multiple challenges were also identified. Some challenges were comparable to those found in urban settings but others were more pronounced, including resource limitations and lack of training. Inappropriate payment models discouraged GPs' involvement in some aspects of end-of-life care, such as case conferences and home visits. Compared to GPs in urban settings, those in rural/regional communities often reported closer doctor-patient relationships and better care integration and collaboration. These positive aspects of care could be further developed to enhance service provision. Our study highlighted the importance of regular interactions with other professionals and patients in providing end-of-life care, but many GPs and other stakeholders found such interactions more challenging than the more "technical" aspects of care.
Conclusions: Rural/regional GPs appear to be disproportionately affected by inappropriate payment models and limited resources, but may benefit from closer doctor-patient relationships and better care integration and collaboration relative to urban GPs. Systematic collection of empirical data on GP management at end-of-life is required to build on these strengths and address the challenges.
OBJECTIVES: Older patients with end-stage renal disease are willing participants in advance care planning but just over 10% are engaged in this process. Nephrologists fear such conversations may upset patients and so tend to avoid these discussions. This approach denies patients the opportunity to discuss their end-of-life care preferences. Many patients endure medically intensive end-of-life scenarios as a result. This study aims to explore the rationale underpinning nephrologists' clinical decision-making in the management of older patients with end-stage renal disease and to make recommendations that inform policymakers and enhance advance care planning for this patient group.
METHODS: A qualitative interview study of 20 nephrologists was undertaken. Nephrologists were asked about their management of end-stage renal disease in older patients, conservative management, dialysis withdrawal and end-of-life care. Eligible participants were nephrologists working in Ireland. Five nephrologists participated in a recorded focus group and 15 nephrologists participated in individual digitally recorded telephone interviews. Semistructured interviews were conducted; thematic analysis was used to distil the results.
RESULTS: Three key themes emerged: barriers to advance care planning; barriers to shared decision-making; and avoidance of end-of-life care discussion.
CONCLUSIONS: Advance care planning is not an integral part of the routine care of older patients with end-stage renal disease. Absence of formal training of nephrologists in how to communicate with patients contributes to poor advance care planning. Nephrologists lack clinical experience of conservatively managing end-stage renal disease and end-of-life care in older patients. Key policy recommendations include formal communication skills training for nephrologists and development of the conservative management service.
Background: Advance care planning (ACP) is a process in which professionals, patients and their relatives discuss wishes and options for future care. ACP in the palliative phase reduces the chance that decisions have to be taken suddenly and can therefore improve the quality of life and death. The primary aim of this study is to explore how ACP takes place in cases of people with intellectual disabilities (ID).
Method: Medical files were analysed, and interviews were held in six care organisations for people with mild to severe ID. The data concerned people with ID (n = 30), 15 in the palliative phase, identified using the 'surprise question', and 15 who had died after an identifiable period of illness. Additional pre-structured telephone interviews were conducted with their relatives (n = 30) and professionals (n = 33).
Results: For half of the people with ID who had died, the first report in their file about palliative care (needs) was less than 1 month before their death. Professionals stated that ACP was started in response to the person's deteriorating health situation. A do-not-attempt-resuscitation order was recorded for nearly all people with ID (93%). A smaller group also had other agreements between professionals and relatives documented in their files, mainly about potentially life-sustaining treatments (43%) and/or hospitalisation admissions (47%). Relatives and professionals are satisfied with the mutual cooperation in ACP in the palliative phase. Cognitive and communication disabilities were most frequently mentioned by relatives and professionals as reasons for not involving people with ID in ACP.
Conclusions: Advance care planning in the palliative phase of people with ID focuses mainly on medical issues at the end of life. Specific challenges concern a proactive identification of changing needs, fear to initiate ACP discussions, documentation of ACP in medical files and the involvement of people with ID in ACP. It is recommended that relatives and professionals should be informed about the content of ACP and professionals should be trained in communicating in advance about wishes for future care.
Background: Palliative care (PC) is an essential component of comprehensive care of patients with intracerebral hemorrhage (ICH). In the present study, we sought to characterize the variability of PC use after ICH among US hospitals.
Methods: ICH admissions from hospitals with at least 12 annual ICH cases were identified in the Nationwide Inpatient Sample between 2008 and 2011. We used multilevel logistic regression modeling to estimate between-hospital variance in PC use. We calculated the intraclass correlation coefficient (ICC), proportional variance change, and median OR after accounting for individual-level and hospital-level covariates.
Results: Among 26,791 ICH admissions, 12.5% received PC (95% CI 11.5-13.5). Among the 629 included hospitals, the median rate of PC use was 9.1 (interquartile range 1.5-19.3) per 100 ICH admissions, and 150 (23.9%) hospitals had no recorded PC use. The ICC of the random intercept (null) model was 0.274, suggesting that 27.4% of the overall variability in PC use was due to between-hospital variability. Adding hospital-level covariates to the model accounted for 25.8% of the between-hospital variance observed in the null model, with 74.2% of between-hospital variance remaining unexplained. The median OR of the fully adjusted model was 2.62 (95% CI 2.41-2.89), indicating that a patient moving from 1 hospital to another with a higher intrinsic propensity of PC use had a 2.63-fold median increase in the odds of receiving PC, independent of patient and hospital factors.
Conclusions: Substantial variation in PC use after ICH exists among US hospitals. A substantial proportion of this between-hospital variability remains unexplained even after accounting for patient and hospital characteristics.
Objective: To improve understandings of the enablers and barriers to maintaining good quality of life for people dying, caring and grieving in rural areas.
Design and setting: In-depth interviews designed on participatory research principles were held with bereaved carers living in a small community in rural Tasmania. Participants had cared for someone until their death within the 3-year period prior.
Participants: Nineteen participants comprising 18 bereaved former carers and one person with a life-limiting illness, and all but four were over retirement age.
Study aim: To explore experiences of end-of-life care in a rural community.
Results: Participants discussed the challenges they experienced during end-of-life caring, including transport into the city for treatment, and access to basic and specialised services. However, they also reported positive aspects of formal and informal palliative care, and described experiences of personable, expert, flexible and innovative caregiving.
Conclusions: The rural location enabled personalised and innovative expressions of care. This research adds new insight into rural end-of-life palliation, as a complex intersection of supererogation, innovation and place-driven care.
Background: With growing expense in chronic illness and end-of-life (EOL) care, population-based interventions are needed to reduce the health care cost and improve patients' quality of life. The authors believe that promotion of palliative medicine is one such intervention and this promotion depends on the acceptance of palliative medicine concepts by health care professionals.
Aims of the studies: Perception of palliative medicine in chronic illness and in EOL care by health care professionals was learned in two studies carried out at a teaching community hospital 14 years apart.
Participants and methods: Voluntary and anonymous surveys were randomly distributed among physicians, nurses, and social workers/case managers. Participants in the two studies presented two different groups of health care providers.
Results of the studies: Results of the two studies were essentially similar. On most of the issues, respondents' perceptions were consistent with palliative medicine concepts and confidence in palliation grew over the 14-year period. The authors call this approach a "palliative attitude." Physicians with greater experience performed better in care planning. Younger physicians were more perceptive to withdrawal of care in futile cases. Participants' religion had no influence on perception of palliative medicine. Attendance of educational activities did not influence attitudes of health care professionals. Health care providers who favored involvement of palliative care teams in patients' management were better in care planning, interpretation of the DNR consent, use of opioids at the EOL, use of intensive care, and evaluation of the disease trajectory.
Conclusion: The authors conclude that direct interaction between palliative and interdisciplinary teams in clinical practice is the key factor in the education of health care professionals, in the development of a "palliative attitude," and in the promotion of palliative medicine.
Cultural competence, a clinical skill to recognise patients' cultural and religious beliefs, is an integral element in patient-centred medical practice. In the area of death and dying, physicians' understanding of patients' and families' values is essential for the delivery of culturally appropriate care. Dementia is a neurodegenerative condition marked by the decline of cognitive functions. When the condition progresses and deteriorates, patients with advanced dementia often have eating and swallowing problems and are at high risk of developing malnutrition. Enteral tube feeding is a conventional means of providing artificial nutrition and hydration to meet nutritional needs, but its benefits to the frail population are limitedly shown in the clinical evidence. Forgoing tube feeding is ethically challenging when patients are mentally incompetent and in the absence of an advance directive. Unlike some developed countries, like the United States of America, death and dying is a sensitive issue or even a taboo in some cultures in developing countries that forgoing enteral tube feeding is clinically and ethically challenging, such as China and Malaysia. This article in three parts 1) discusses the clinical and ethical issues related to forgoing tube feeding among patients with advanced dementia, 2) describes how Hong Kong Chinese, North American, and Malaysian Islamic cultures respond differently in the decision-making patterns of forgoing tube feeding for patients with advanced dementia, and 3) reiterates the clinical implications of cultural competence in end-of-life care.
La conflictualité présente au sein de toute relation humaine et donc dans toute relation de soin occupe nécessairement une place aussi prépondérante dans la recherche en sciences humaines et sociales. La psychologie clinique, qui vise à donner du sens à ces divers conflits, afin non pas de les faire taire à tout prix mais bien de permettre leur expressivité, se doit aussi de s'interroger sur les conflits qu'elle porte en elle-même.
Plus que le conflit, ce qui peut être problématique, voire destructeur, c'est son mode de résolution et surtout le cadre dans lequel celui-ci se déroule. Si l'environnement est dédié à la défiance, le conflit peut être problématique. En revanche, si c'est la confiance qui prédomine alors les différents interactants savent qu'il se situe dans un cadre bienveillant et, dès lors, si les arguments échangés sont bien à discuter, ils ne portent pas en eux de charge délétère.
Sexuality and intimacy are poorly researched in both people living with Parkinson's and in older people. Triggers for discussion usually centre on sexual dysfunction and hypersexuality in relation to Parkinson's. However, there are many more factors that impact on physical and emotional connectedness. Despite highlighting this unmet need there are limited tools or comprehensive assessments available to help improve quality of life. Further research is required within this field, with emphasis on health professionals' education and on highlighting to patients that they have permission for this topic to be discussed and actioned.
Context: Although access to subspecialty pediatric palliative care (PPC) is increasing, little is known about the role of PPC for children with advanced heart disease (AHD).
Objectives: The objective of this study was to examine features of subspecialty PPC involvement for children with AHD.
Methods: This is a retrospective single-institution medical record review of patients with a primary diagnosis of AHD for whom the PPC team was initially consulted between 2011 and 2016.
Results: Among 201 patients, 87% had congenital/structural heart disease, the remainder having acquired/nonstructural heart disease. Median age at initial PPC consultation was 7.7 months (range 1 day-28.8 years). Of the 92 patients who were alive at data collection, 73% had received initial consultation over one year before. Most common indications for consultation were goals of care (80%) and psychosocial support (54%). At initial consultation, most families (67%) expressed that their primary goal was for their child to live as long and as comfortably as possible. Among deceased patients (n = 109), median time from initial consultation to death was 33 days (range 1 day-3.6 years), and children whose families expressed that their primary goal was for their child to live as comfortably as possible were less likely to die in the intensive care unit (P = 0.03) and more likely to die in the setting of comfort care or withdrawal of life-sustaining interventions (P = 0.008).
Conclusion: PPC involvement for children with AHD focuses on goals of care and psychosocial support. Findings suggest that PPC involvement at end of life supports goal-concordant care. Further research is needed to clarify the impact of PPC on patient outcomes.
The convergence of medical treatment that can extend life with written medical orders that make it possible to refuse such treatment brings the differential dynamics of contemporary end-of-life decision making into sharp focus. Communication between families and clinicians can be confusing, uncertain, and pressured when death is imminent. These situations create distress that ultimately influences the end-of-life experience for people who are dying and those who care for them. This article presents the analysis of the decisional dynamics that emerge from the intersection of the patient-family-provider awareness that death is near with the presence or absence of documentation of expressed wishes for end-of-life care. A heuristic analysis was conducted with data from three studies about urgent decision making at the end of life. Original study data included 395 surveys, in-depth interviews with 91 prehospital (paramedics and emergency medical technicians), and content analysis of 100 Medical Orders for Life Sustaining Treatment forms that led to the development of an overarching conceptual model of decision making. Four decisional contexts emerged from the intersection of awareness of dying and documentation of wishes: 1) Aware Documented, 2) Aware Undocumented, 3) Unaware Documented, and 4) Unaware Undocumented. This generalizable model, which is agnostic of setting, can help clinicians more astutely recognize the clinical situation when death is imminent, assess patients and caregivers, and intervene to help focus conversation and direct decision making. The model can also inform research, education, and care for people in some of the most vulnerable moments of life.
This study examined racial, ethnic, and other factors associated with whether older adults discussed their end-of-life (EOL) care wishes with family. A sample of 223 White, 95 African American, and 46 Hispanic adults aged 50 and older from a five-county area of Florida answered questions about sociodemographics, health, and preferences for involving family/friends in health-care decision-making. Analyses describe associations between whether discussions occurred and race/ethnicity and other factors, including preferences for family/friend involvement in health care. In descriptive analyses, one third (n = 113) had not discussed EOL care. No differences were evident between African Americans and non-Hispanic Whites. In multivariate analyses, EOL care discussions were less likely for Hispanics. Further analysis showed this lower likelihood existed among Hispanics with lesser family/friend involvement. Ethnicity influences EOL care discussion, moderated by family/friend involvement, though results are considered preliminary. Knowing the involvement of patients' family/friends could help providers initiate EOL care discussions.