Sarah Eddy, photographe, a l'idée du Carnet des derniers voeux suite à la disparition inattendue de sa mère. Pourquoi ne pas tenir, de son vivant, un journal de bord dans lequel on puisse écrire ses voeux, ses souvenirs, mais également laisser une trace de ce qui a compté pour nous, des moments forts de notre vie, des instants qui nous ont marqués, des traits de personnalité qui nous caractérisaient ? Ce journal atypique pourrait alors servir de guide à la famille, pour apporter une aide dans l'épreuve inévitable de la mort.
Les auteurs décrivent les différents aspects du processus de deuil périnatal afin de faciliter l'accompagnement des familles touchées par ce drame. Ils citent notamment les risques psychopathologiques qui peuvent découler de cet événement bouleversant l'ordre des générations, tels que la dépression, les troubles anxieux ou le stress post-traumatique.
Les trois auteures vivent chacune le deuil d'un enfant. Elles évoquent cette blessure ainsi que leur deuil. Elles expliquent comment elles ont pu avancer dans leurs vies malgré la souffrance, en découvrant que le lien créé avec leur fils dépasse les frontières de la mort.
Après le récit de la mort de son propre frère lorsqu'elle était enfant, la psychothérapeute Marie-Camille Carton de Wiart analyse divers témoignages de personnes ayant perdu un proche, recueillis au cours de sa pratique de spécialiste de l'accompagnement du deuil. Elle propose ensuite une démarche de méditation des textes bibliques destinée à accompagner ceux qui traversent cette épreuve.
Essentiellement destiné aux sages-femmes, ce guide permet de mieux accompagner la mère, mais aussi le père, dans les premiers temps d'un deuil périnatal puis, ultérieurement, pour une nouvelle grossesse. Il prend en compte la composante traumatique, longtemps négligée dans ce type de deuil.
Cet ouvrage se compose d'une cinquantaine de fiches thématiques sur les soins palliatifs afin d'accompagner de façon expérimentée la fin de vie des patients : les principes éthiques, les acteurs, le temps, les moyens, l'expérience pour le patient et pour les équipes, les dispositifs singuliers, entre autres.
Cet ouvrage est à destination des étudiants qui passeront l'ECN de 2021 à 2023. il reprend le programme de l'UE 5 ainsi que les items concernés de des UE 3, 4, 9 et 10 avec, pour chaque thème, les notions importantes, des conseils, des références bibliographiques et les pièges à éviter.
To augment learning about interprofessional palliative and end-of-life care, the University of New England College of Osteopathic Medicine immersed 2 second-year osteopathic medical students in an 18-bed acute care hospice home in Scarborough, Maine, for 48 hours. The students worked with an interprofessional staff and independently to provide patient care, family support, and postmortem care. For data collection, students wrote in journals before the immersion experience (prefieldwork), while living in the hospice home (fieldwork), and for 10 days following the immersion experience (postfieldwork). The students recorded their subjective and objective reporting of observations, experiences, feelings, and patient/family encounters. Data analyses included a review of the journals, identifying thematic categorizations, and coding through content analysis. Three themes identified in the students' journals reflected shared experiences: (1) shifting perspectives, (2) path to family acceptance, and (3) emotional journey. The students learned how to converse with patients and families about end-of-life care while ensuring attainment of patients' goals. They also learned about the importance of helping patients enjoy life's simple pleasures like taking them outside to enjoy the sunshine, and they learned to trust themselves when handling emotional and difficult situations. Each student gained confidence in her ability to help guide patients through this stage of life.
OBJECTIVE: We aimed to determine how often patients who choose voluntary stopping of eating and drinking (VSED) are accompanied by Swiss family physicians, how physicians classify this process, and physicians' attitudes and professional stance toward VSED.
METHODS: We conducted a cross-sectional study between August 2017 and July 2018 among 751 practicing family physicians in Switzerland (response rate 74%; 70.7% men; average age 58 (±9) years). We used a standardized evidence-based questionnaire for the survey.
RESULTS: VSED is well-known among family physicians (81.9%), and more than one-third (42.8%) had accompanied at least one patient during VSED. In 2017, 1.1% of all deaths that occurred in Swiss nursing homes or in a private home were owing to VSED. This phenomenon was classified as a natural dying process (59.3%), passive euthanasia (32.0%), or suicide (5.3%).
CONCLUSIONS: Although about one in three Swiss family physicians have accompanied a person during VSED, family physicians lack sufficient in-depth knowledge to address patients and their relatives in an appropriate manner during the process. Further training and development of practice recommendations are needed to achieve more standardized accompaniment of VSED.
Death doulas (DD) are working with people at the end of life in varied roles with more clarity needed around their role and place within the health and social care systems. The aim of this work is to explore the DD role in end-of-life care from the perspective of DDs. A sub-group of 20 DDs from a larger quantitative survey participated in semi-structured telephone Skype or Zoom interviews. Interview data were analysed using thematic analysis. Seven themes emerged from the qualitative analysis: what a DD offers, what a DD does, challenges and barriers, occupational preferences, family support, contract of service/fee and regulation. There is a general perception that healthcare professionals (HCP) do not understand what it is that DDs do; thus, the current study has helped to demystify the DD role and potentially reduce suspicion. The lack of a DD business model sees inconsistencies in what services each DD offers and what patients and families can expect. End of life is complex and confusing for patients and families and there is a need to further explore the DD role and how it can work when there are many inconsistencies in working practice. More research is required to look at the interplay among DDs, HCPs and palliative care volunteers in addressing the gaps in care provision and how these relationships might be more seamlessly managed.
BACKGROUND: Mothers and fathers are severely challenged when providing care for their terminally ill child at end of life. Caregiving needs have been studied predominantly in mothers. Differences in caregiving needs between mothers and fathers during their child's end of life have not, however, been explored so far. This knowledge is of importance to best meet individual parental needs in paediatric end-of-life care.
METHODS: Secondary analysis of a quantitative survey on parental needs during their child's last 4 weeks of life, collected in the Swiss multicentre "Paediatric End-of-Life Care Needs" (PELICAN) study. Caregiving needs of mothers and fathers (parental dyad) who had lost a child due to a cardiological, neurological or oncological disease or during the neonatal period in the years 2011-2012 were retrospectively assessed using a questionnaire representing six evidence-based quality domains of paediatric palliative and end-of-life care.
RESULTS: Seventy-eight parental dyads were included in this analysis. Differences between mothers and fathers were mostly found around needs to be supported as a family. In all, 28 out of 34 needs-related questionnaire items were scored higher by mothers than by fathers, indicating higher importance for that need to be met. The results indicate that these differences might relate to different caregiving roles and gender-specific coping strategies.
CONCLUSIONS: To best meet parental needs in paediatric end-of-life care, particular attention should be paid to both mothers and fathers and their specific caregiving roles, as differences in these roles might influence their needs in this exceptional situation. Therefore, healthcare professionals should identify how parental dyads mutually navigate care for their sick child to best meet their needs in support. Additionally, mothers and fathers should be supported in their individual coping strategies.
This study aims to analyse the impact that a psychological intervention programme has on the emotional state of family caregivers of patients at the end of life. The study is longitudinal with two arms (control and experimental). Data was collected from 154 primary family caregivers of patients at the end of life as well as from their respective 154 care-recipients. The intervention programme has shown its effectiveness in reducing anxiety, emotional distress and burden in the family caregivers of end-of-life patients. A reduction of anxiety of patients whose family caregivers participated in the intervention was also observed.
BACKGROUND: Despite evidence that family members' support to each other can be of importance to its members, there are limited studies of factors related to family members' sense of such support during palliative care.
AIM: Based on the family systems approach, we evaluated which factors were associated with family members' sense of support within their closest family in a palliative home care context and developed a model that predicts such sense of support.
DESIGN: A cross-sectional design was used. We interviewed 209 adult family members (69% of eligible) of adult patients with expected short survival receiving palliative home care.
METHODS: Generalised linear models were used to evaluate individual factors related to family members' sense of support within their closest family during palliative care. The Akaike Information Criterion (AIC) was applied in the model-building analyses.
RESULTS: Nineteen variables were identified that were significantly associated with the family members' sense of support within the closest family. Model building selected six variables for predicting this sense of support (decreasing Wald values): family member perceiving support from other more distant family members; feeling secure with the provided palliative home care; possibility of respite if family member needed a break; family member living alone; being a child of the patient (inverse relationship); perceiving that the patient was supported by other family members.
CONCLUSIONS: Our findings support clinical application of the Family Systems Theory in the context of palliative care. The factors identified may be of value in assisting practitioners in detecting and treating family members sensing a low level of support within the closest family.
BACKGROUND: In ageing Western societies, many older persons live with and die from cancer. Despite that present-day healthcare aims to be patient-centered, scientific literature has little knowledge to offer about how cancer and its treatment impact older persons' various outlooks on life and underlying life values. Therefore, the aims of this paper are to: 1) describe outlooks on life and life values of older people (= 70) living with incurable cancer; 2) elicit how healthcare professionals react and respond to these.
METHODS: Semi-structured qualitative interviews with 12 older persons with advanced cancer and two group interviews with healthcare professionals were held and followed by an analysis with a grounded theory approach.
RESULTS: Several themes and subthemes emerged from the patient interview study: a) handling incurable cancer (the anticipatory outlook on "a reduced life", hope and, coping with an unpredictable disease) b) being supported by others ("being there", leaving a legacy, and having reliable healthcare professionals) and; c) making end-of-life choices (anticipatory fears, and place of death). The group interviews explained how healthcare professionals respond to the abovementioned themes in palliative care practice. Some barriers for (open) communication were expressed too by the latter, e.g., lack of continuity of care and advance care planning, and patients' humble attitudes.
CONCLUSIONS: Older adults living with incurable cancer showed particular outlooks on life and life values regarding advanced cancer and the accompanying last phase of life. This paper could support healthcare professionals and patients in jointly exploring and formulating these outlooks and values in the light of treatment plans.
BACKGROUND: End-of-life care is high on policy and political agendas in the UK and internationally. Nurses are at the forefront of this, caring for dying patients, 'managing' the dead body, and dealing with the corporeal, emotional and relational dimensions of death. Little is known about nurses' prior or early professional experiences of and reactions to death, dying and the corpse and how these might influence practice.
AIMS: To appraise the international literature on nurses' early experiences of death, dying and the dead body, to better understand how these might influence subsequent practice, and how this might inform our teaching of death, dying and last offices.
METHODS: A scoping review was undertaken of peer-reviewed publications between, 2000 and 2019, which included nurses working in hospital, care homes and the community. Medline, PubMed, PsychINFO and CINAHL databases were searched and 23 papers meeting the inclusion criteria were read. Arksey and O'Malley's (2005) five-stage approach was adopted to scope the relevant international literature, using where relevant the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) statement. Selected papers were independently reviewed and subjected to thematic analysis, leading to the generation of five overarching themes.
RESULTS: The five themes were: different philosophies of care; relationships; knowledge; impact of death; and giving care. The studies came from diverse geographical locations across different settings and were primarily qualitative in design.
CONCLUSIONS: Students and registered nurses are impacted both positively and negatively by their early encounters with death and dying. Good communication with patients, families and between professionals, understanding of what constitutes a 'good' death, and high-quality mentorship and support were of particular importance.
OBJECTIVE: This qualitative study sought to obtain feedback from stakeholder cancer caregivers and bereaved family members on the implementation of bereavement risk screening in oncology.
METHODS: Semi-structured interviews were conducted with 38 family members of patients with advanced cancer (n=12) and bereaved family members (n=26) on when and how to effectively implement bereavement risk screening. Data was analyzed using thematic analysis.
RESULTS: Many participants indicated that they would be open to completing a self-report screening measure before and after the patient's death. Several suggested screening at multiple timepoints and the importance of follow-up. Participants viewed screening as an opportunity to connect to psychosocial support.
CONCLUSIONS: The findings suggest that family members appear supportive of sensitively-approached bereavement risk screening before and after a patient's death as an important component of quality psychosocial care. To optimize implementation, bereavement risk screening would involve screening at multiple timepoints and include follow-up. Findings suggest standardized risk screening using a brief, validated self-report tool would be a pragmatic approach to increasing access to bereavement care.
OBJECTIVE: Volunteers are an important resource in bridging palliative care (PC) services and communities. However, no studies have systematically mapped volunteers' actual contributions to PC provision and how well they are supported by healthcare services at the volunteer level. Such insights are important to shape and optimise supportive environments for volunteering in PC. This study aimed to describe organised volunteering practices in PC across dedicated PC services and healthcare services providing generalist PC, in terms of tasks, training, supervision and how volunteers evaluate these.
METHODS: A cross-sectional postal survey of 2273 volunteers from healthcare organisations providing care for people with serious illnesses in the Flemish healthcare system (Belgium) was conducted between June and November 2018. A two-step cluster randomised sample was used. Volunteers were recruited through their respective volunteering organisations.
RESULTS: Response was obtained for 801 (35.2%) volunteers. Volunteers were predominantly women (75.5%), retired (70.8%) and aged 60-69 years (43.4%). Almost all volunteers provided psychosocial care (96.3%). Volunteers were found to provide either (1) broad volunteer support, emphasising psychosocial and existential care and signposting tasks or (2) narrow volunteer support, emphasising nursing care tasks. Nursing home volunteers had the lowest prevalence of PC training (7.7% vs 53.7% total, p<0.001).
CONCLUSIONS: Multidimensional support was most prevalent among dedicated PC volunteers, while practical support was most prevalent among sitting service volunteers. Results indicate that volunteers can offer complementary support for patients with serious illnesses, although this requires training and consistent supervision. This is currently suboptimal for volunteers in nursing homes and community home care.
BACKGROUND: The supportive hospice aged residential exchange (SHARE) is a new model of palliative care education that has been designed for residential aged care. The goal of SHARE is to help clinical staff improve palliative care within residential aged care facilities and to improve specialist palliative care nurses' knowledge and skill to care for frail older people.
METHOD: The experiences of 18 bereaved families concerning the palliative care journey (both at the start and finish of a one-year implementation of SHARE) were explored using semi-structured interviews.
RESULTS: Three themes were important to bereaved families' experience: communication with staff, systems of care, and hospice involvement. Sub-themes indicating changes in these three components of care between the start and finish of SHARE was identified. A fourth theme highlighted challenges (relationship with GP, staff shortages, and turnover) that continued across SHARE.
CONCLUSION: Findings indicated that SHARE benefited families (improved communication and support) through the end of life journey of their relatives, but challenges remained.