J'ai professé, en tant qu'infirmier, pendant plus de 20 ans en service d'oncologie, puis de soins palliatifs. Enseignant et psychothérapeute depuis 10 ans, j'ai la chance de continuer de travailler avec des étudiants infirmiers dans des services de soins palliatifs et de psychiatrie, ainsi que de superviser des équipes de soins. Ethicien de formation, je fais partie d'un comité d'éthique dans un hôpital neuropsychiatrique. Ces différentes casquettes me donnent le grand privilège de rencontrer à la fois des patients en fin de vie ou souffrant de troubles psychiques, des soignants et des étudiants confrontés à des situations difficiles, et de relire, en comité d'éthique, des situations cliniques de grande souffrance.
La question de l'euthanasie est très régulièrement évoquée et suscite de nombreux débats, aussi passionnels que passionnants.
Les soignants sont formés à agir et à se situer au sein d'une relation par nature asymétrique. L'auteure s'attache à montrer l'importance d'un aspect laissé dans l'ombre : la possibilité de faire vivre cette relation dans une dynamique de réciprocité. Nous avons généralement l'habitude de considérer la relation de soin dans sa structure asymétrique : d'un côté un soignant agissant, responsable, et de l'autre, un patient, passif, vulnérable.
C'est oublier de considérer toute la complexité de ce qui s'échange et se partage entre soignants et soignés. En privilégiant une mise en mot proche de son expérience d'infirmière en soins palliatifs, l'auteure formule les enjeux éthiques de la réciprocité, liés à cette façon de concevoir la relation dans l'activité du soin et de la vivre effectivement.
Findings indicate this workshop initiative is both feasible and transformative.
ABSTRACT: Background: Grief and loss are significant issues for health care providers, who may witness their patients' pain and suffering, experience feelings of grief as a result of caring for sick and dying people, and reexperience their own past losses. Unaddressed grief can lead to many issues for providers, their patients, and the health care system as a whole.
METHODS: Healing Loss: A Residential Workshop for Montefiore Associates is an experiential and educational program aimed at helping professional caregivers to identify and process grief and loss. Through retrospective analysis of program participation and feedback data, this study investigated the feasibility and effectiveness of offering an intensive bereavement support program to hospital employees in a large academic health system.
RESULTS: Between 2013 and 2017, Montefiore Health System held nine Healing Loss workshops, serving 198 employees from diverse professions. These participants described multiple benefits, including being able to grieve more effectively, accessing support, and learning new tools for healing and self-care. Participants described the workshop experience as unique, cathartic, and life changing.
CONCLUSIONS: The sustainability of the Healing Loss initiative during the four years of the study, together with strong feedback from participants, indicates that bereavement support for hospital employees is both feasible and beneficial.
Understanding the overuse and underuse of health-care services in the end-of-life (EoL) phase for patients with lung cancer (LC) and colorectal cancer (CRC) is important, but knowledge is limited. To help identify inappropriate care, we present the health-care utilization profiles for hospital care at the EoL of patients with LC (N = 25 553) and CRC (N = 14 911) in the Netherlands between 2013 and 2015. An administrative database containing all in-hospital health-care activities was analyzed to investigate the association between the number of days patients spent in the emergency department (ED) or intensive care unit (ICU) and their exposure to chemotherapy or radiotherapy. Fewer patients received hospital care as death neared, but their intensity of care increased. In the last month of life, the average numbers of hospital bed days, ICU days, and ER contacts were 9.0, 5.5, and 1.2 for patients with CRC, and 8.9, 6.2 and 1.2 for patients with LC in 2015. On the other hand, the occurrence of palliative consultations ranged from 1% to 4%. Patients receiving chemotherapy 6 months before death spent fewer days in ICU than those who did not receive this treatment (odds ratios: CRC = 0.6 [95% confidence interval: 0.4-0.8] and LC = 0.7 [0.5-0.9]), while those receiving chemotherapy 1 month before death had more ED visits (odds ratios: CRC = 17.2 [11.8-25.0] and LC = 15.8 [12.0-20.9]). Our results showed that patients who were still receiving hospital care when death was near had a high intensity of care, yet palliative consultations were low. Receiving chemotherapy or radiotherapy in the final month of life was significantly associated with more ED and ICU contacts in patients with LC.
To implement the National End of Life Care strategy and enable more people to express and achieve their preferences about care at the end of life, senior clinicians outside palliative medicine need to make it a routine part of their practice. However, it is acknowledged that recognising that people are entering the last phase of their illness is not always straightforward, and having conversations about aims of treatment and planning for future care may not be easy. In order to begin to address these challenges, funding was sought from the Yorkshire and the Humber Strategic Health Authority (SHA), and subsequently Health Education England, Yorkshire and the Humber (HEEYH), to pilot a development programme in 2 acute trusts. 2 palliative medicine consultants shared the trainer role at each site, supporting hospital consultants from a range of specialties, with a GP to give a community perspective. The programme involved individual clinicians identifying their own learning needs and specific issues for end-of-life care in their patients. The group met together monthly in action learning sets to discuss issues in a safe yet challenging environment. Following evaluation using a combination of training needs analyses, feedback questionnaires, audits and service evaluations, it was modified slightly and repiloted in 2 further trusts as 'Rethinking Priorities'. This paper describes the programme and its outcomes, especially in relation to participants' learning, service development and leadership. It also highlights the challenges, including different learning styles, the concept of action learning, obtaining funding and dedicated time, and how to evaluate the effectiveness of a programme. Overall, it suggests that an educational initiative based on clinicians identifying their own learning needs, and using an action learning approach to explore issues with other colleagues, with the addition of some targeted sessions, can result in positive change in knowledge, behaviour and clinical practice.
BACKGROUND: Economic evaluations of advance care planning (ACP) in people with chronic kidney disease are scarce. However, past studies suggest ACP may reduce healthcare costs in other settings. We aimed to examine hospital costs and outcomes of a nurse-led ACP intervention compared with usual care in the last 12 months of life for older people with end-stage kidney disease managed with haemodialysis.
METHODS: We simulated the natural history of decedents on dialysis, using hospital data, and modelled the effect of nurse-led ACP on end-of-life care. Outcomes were assessed in terms of patients' end-of-life treatment preferences being met or not, and costs included all hospital-based care. Model inputs were obtained from a prospective ACP cohort study among dialysis patients; renal registries and the published literature. Cost-effectiveness of ACP was assessed by calculating an incremental cost-effectiveness ratio (ICER), expressed in dollars per additional case of end-of-life preferences being met. Robustness of model results was tested through sensitivity analyses.
RESULTS: The mean cost of ACP was AUD$519 per patient. The mean hospital costs of care in last 12 months of life were $100,579 for those who received ACP versus $87,282 for those who did not. The proportion of patients in the model who received end-of-life care according to their preferences was higher in the ACP group compared with usual care (68% vs. 24%). The incremental cost per additional case of end-of-life preferences being met was $28,421. The greatest influence on the cost-effectiveness of ACP was the probability of dying in hospital following dialysis withdrawal, and costs of acute care.
CONCLUSION: Our model suggests nurse-led ACP leads to receipt of patient preferences for end-of-life care, but at an increased cost.
Patient safety and quality of care are increasing concerns for healthcare internationally. This paper examines the spatial achievement of safety and wellbeing by healthcare staff, patients and their carers within UK primary care and Australian palliative care contexts. Two key socio-spatial modes of safety and wellbeing were found across these healthcare contexts. The technical mode was spatially managed by staff and driven by formal approaches to safety with a limited focus on wellbeing. In contrast, the relational mode was driven by attentiveness to the wellbeing and spatial engagement of staff, patients and carers that drew on informal elements of safety. Both modes extended across public, private, biomedical and administrative spaces, with technical and relational safety-wellbeing configurations often inhabiting the same spaces. Differences also existed across primary and palliative care contexts that reflected the unique pressures present within each context, and the ability of people and places to adapt to these demands. In the context of increasing workloads in healthcare internationally, this study highlights the benefits of attending as much to the relational dimensions of safety and quality of care as to the technical ones through increased focus on the safety and wellbeing of healthcare staff, patients and carers within and beyond traditional sites of care.
Dementia is an increasingly recognised medical condition which, towards its later stages, leads to the manifestation of symptoms that often require palliation. Hospice admission for patients with dementia has been shown to increase caregiver satisfaction. Yet, admission can be harmful for the patient. This feature follows the case of one patient, Mr Smith, who was admitted to Royal Trinity Hospice (RTH) for symptom control, along with providing respite for his carers. Shortly into Mr Smith's admission, he became increasingly agitated and was ultimately discharged home. After investigating the cause of early discharge, it was concluded that the newly built, modernised private rooms were in fact very dissimilar to the homes of patients with dementia. Adapting the clinical environment to improve patient and carer satisfaction has been explored in numerous studies. Significant amendments used by hospices and care homes include bold signs and natural lighting to facilitate way-finding, in addition to vintage furnishings to create a sense of familiarity. Taking recent evidence into consideration, RTH designed a new dementia-friendly bay situated on the ground floor of its inpatient unit. Since then, many other patients with dementia have been admitted to the hospice, one being Mr Thomas. Unlike Mr Smith, Mr Thomas was much more relaxed during his admission and his wife commented on how pleased she was with his care. This feature demonstrates the importance of being receptive to feedback and identifying the need for change.
PURPOSE: This article explores experiences of the acute-care environment as a setting for end-of-life (EoL) care from the perspective of family members of a dying person.
METHOD: We used participant-produced photographs in conjunction with follow-up interviews with nine family members to persons at the EoL, cared for in two acute-care settings.
RESULTS: The interpretive description analysis process resulted in three constructed themes-Aesthetic and un-aesthetic impressions, Space for privacy and social relationships, and Need for guidance in crucial times. Aspects of importance in the physical setting related to aesthetics, particularly in regard to sensory experience, and to a need for enough privacy to facilitate the maintenance of social relationships. Interactions between the world of family members and that of professionals were described as intrinsically related to guidance about both the material and immaterial environment at crucial times.
CONCLUSION: The care environment, already recognized to have an impact in relation to patients, is concluded to also affect the participating family members in this study in a variety of ways.
Dans ce témoignage sous forme d’abécédaire, l’auteure raconte le cours qu’a pris sa vie une fois diagnostiquée d’un cancer du sang incurable. L’ouvrage rassemble plus de cent mots clefs pour comprendre comment son quotidien s’est adapté à cette maladie, que ce soit sa relation avec son fils, son entrée dans le monde de l’hôpital, son optimisme ou son engagement associatif.
La vie de Catherine, illustratrice, bascule le jour où on lui diagnostique une leucémie aiguë : une forme de cancer très grave qui s’attaque au système immunitaire. Elle qui n’avait jamais vraiment été hospitalisée se retrouve alors propulsée dans le monde des grands malades et découvre la vie en hôpital. C’est un véritable parcours du combattant qui s’annonce... Les analyses, l’attente des résultats, les séances de soin, le corps qui se transforme, la perte des cheveux, ses relations avec le corps médical, le soutien de son compagnon et de ses proches, le retour à la vie normale, le regard des autres...
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BACKGROUND: While the provision of ICU care is vital, the nature and effect of the potential lack of privacy during death and dying in ICUs has not been extensively explored.
AIM: This paper aims to explore the issues surrounding privacy during death in ICU.
DESIGN: A literature search using CINAHL and Pubmed revealed articles related to privacy, death and dying in ICU.
METHOD: Key words used in the search were 'ICU', 'Privacy', 'Death' and 'Dying'. A combination of these terms using Boolean operators 'or' or 'and' revealed a total of 23 citations. Six papers were ultimately deemed suitable for inclusion in the review and were subjected to code analysis with Atlas.ti v8 QDA software.
FINDINGS: The analysis of the studies revealed eight themes, and this paper presents the three key themes that were found to be recurring and strongly interconnected to the experience of privacy and death in ICU: 'Privacy in ICU', 'ICU environment' and 'End-of-Life Care'.
CONCLUSIONS: Research has shown that patient and family privacy during the ICU hospitalisation and the provision of the circumstances that lead to an environment of privacy during and after death remains a significant challenge for ICU nurses. Family members have little or no privacy in shared room and cramped waiting rooms, while they wish to be better informed and involved in end-of-life decisions. Hence, death and dying for many patients takes place in open and/or shared spaces which is problematic in terms of both the level of privacy and respect that death ought to afford.
RELEVANCE TO CLINICAL PRACTICE: It is best if end-of-life care in the ICU is planned and coordinated, where possible. Nurses need to become more self-reflective and aware in relation to end-of-life situations in ICU in order to develop privacy practices that are responsive to family and patient needs.
Delirium is a serious acute neurocognitive condition frequently occurring for hospitalized patients, including those receiving care in specialist palliative care units. There are many delirium evidence-practice gaps in palliative care, including that the condition is under-recognized and challenging to assess. To report the meta-synthesis of a research project investigating delirium epidemiology, systems and nursing practice in palliative care units. The Delirium in Palliative Care (DePAC) project was a two-phase sequential transformative mixed methods design with knowledge translation as the theoretical framework. The project answered five different research questions about delirium epidemiology, systems of care and nursing practice in palliative care units. Data integration and metasynthesis occurred at project conclusion. There was a moderate to high rate of delirium occurrence in palliative care unit populations; and palliative care nurses had unmet delirium knowledge needs and worked within systems and team processes that were inadequate for delirium recognition and assessment. The meta-inference of the DePAC project was that a widely-held but paradoxical view that palliative care and dying patients are different from the wider hospital population has separated them from the overall generation of delirium evidence, and contributed to the extent of practice deficiencies in palliative care units. Improving palliative care nurses' capabilities to recognize and assess delirium will require action at the patient and family, nurse, team and system levels. A broader, hospital-wide perspective would accelerate implementation of evidence-based delirium care for people receiving palliative care, both in specialist units, and the wider hospital setting.
Pendant 18 mois, le ralisateur s'est intéressé à la question de la fin de vie, du suicide assisté et de ses dérives, aux soins palliatifs. Il a filmé en France et en Suisse. Le film retrace son enquête à travers les témoignages de différentes personnes.
Quelle est la réalité de la pratique médicale ? Comment les soignants se doivent-ils d'aborder et d'accompagner ce passage éminemment intime de la fin de vie, que la société et les individus leur ont abandonné ? Comment empêcher la violence engendrée par la disparition des traditionnels rituels ? Quelle éthique pour que la mort contemporaine soit l'occasion d'une relation sociale apaisée ? La mort assistée rebat aujourd'hui les cartes pour les patients, leurs familles et l'hôpital.
C'est dans ce contexte que la médecine est devenue un instrument de régulation sociale masquée. Interrogeant la complexité, les outils, les stratégies et les tactiques d'apaisement de cette violence, Marc Grassin et Frédéric Pochard ouvrent la voie à une solidarité entre les morts et les vivants, en alliant le savoir-faire technique et la puissance du symbolique. Une plaidoirie pour de nouvelles pratiques.
Les auteures ont voulu définir des recommandations pour les services de soins palliatifs à domicile. Il ressort de leur étude que les points importants sont : une permanence 24/24 et 7/7, la formation des soignants à l'utilisation des technologies, la communication avec les familles et les liens avec l'hôpital, notamment en cas de transfert potentiel.
Les équipes de soins palliatifs hospitalières jouent un rôle pivot dans l'accompagnement des patients et de leurs familles et dans le soutien aux équipes soignantes qui ont en charge ces patients. Les auteurs ont étudié la base de données de l'activité d'une équipe de soins palliatifs pour en extraire les caractéristiques démographiques des patients qui lui sont adressés.