Rassemblant les compétences d'experts, qui dialoguent avec celles et ceux qui travaillent chaque jour dans l'accompagnement, ce recueil examine les problèmes éthiques et pratiques soulevés notamment par le surconfinement des personnes âgées et dépendantes durant la pandémie, les risques de "glissement" suscités par les mesures de protection sanitaire, la restriction ou l'interdiction du toucher lors des visites, les modifications du regard porté sur le grand âge.
A partir de son expérience et de témoignages, l'auteure explique ce qui fait la particularité de la dépendance psychique des personnes âgées atteintes de la maladie d'Alzheimer ou psychotiques qui vivent dans les Ehpad afin de réfléchir aux moyens de leur assurer le meilleur accompagnement possible.
The COVID-19 pandemic presented unique health and social challenges for hospice patients, their families, and care providers. This qualitative study explored the impact of the pandemic on this population through the experiences and perceptions of social workers in hospice care. A survey was distributed through national and local listservs to social work practitioners throughout the United States between May 15 and June 15, 2020. The study was designed to learn the following: (1) Concerns patients experienced as a result of the pandemic, (2) strengths/resilience factors for patients during the COVID-19 pandemic, and (3) the personal and professional impact of the pandemic on social workers. Themes uncovered in hospice care included isolation, barriers to communication, disruption of systems, issues related to grieving, family and community support, adaptation, and perspective. The authors provide recommendations for social work practice related to virtual communication, emergency planning, and evidence-based intervention for Persistent Complex Bereavement Disorder. Recommendations for policy include uniform essential worker status for social workers, telehealth reimbursement and expanded caregiver respite benefits.
BACKGROUND: The interprofessional approach is part of the philosophy in palliative care, and its benefits are already documented. However, there are no evidence regarding the process through which the interprofessional team faces the process of the patient's end-of-life and how this experience might be of value for the team's development itself. The aim of this study was to analyse and understand the psychosocial processes that occurs when an interprofessional team accompanies patients and their families to death in palliative care, with the ultimate aim to develop a substantive theory to describe this phenomenon.
METHODS: A Grounded Theory method, as theorized by Strauss and Corbin, was adopted for this study. Data were collected through semi-structured interviews and then independently analysed using constant comparison analysis. Fourteen healthcare professionals - belonging to different disciplines (doctor, nurse coordinator, nurse, nurse assistant, psychologist) - were interviewed in a Northern Italy palliative care facility.
FINDINGS: The core category of this study was identified to be the process of accompaniment of the dying patient as an interprofessional ecosystem. Moreover, the results showed four main factors determining the development of the core psychosocial process: from professionals' 'Hidden Amazement' to 'Onerous Happiness' where 'Weaving of Professional Resources' and 'Work Meaning' are the underlying conditions to catalyse the process itself.
CONCLUSION: Interprofessional care appears an essential value, which becomes the source of the team's strength when facing end-of-life experiences. Health policies and organisations should take the importance of the characteristics of the work environment more carefully. The meaning that professionals attribute to their work and to the team itself, indeed, it may have impact on the overall quality of care and contribute to sustain work engagement, even in stressful situations like end-of-life care.
When parents face a potentially life-limiting fetal diagnosis in pregnancy, they then have a series of decisions to make. These include confirmatory testing, termination, and additional choices if they choose to continue the pregnancy. A perinatal palliative team provides a safe, compassionate, and caring space for parents to process their emotions and discuss their values. In a shared decision-making model, the team explores how a family's faith, experiences, values, and perspectives shape the goals for care. For some families, terminating a pregnancy for any reason conflicts with their faith or values and pursuing life prolonging treatments in order to give their baby the best chances for survival is the most important. For others, having a postnatal confirmatory diagnosis of a life limiting or serious medical condition gives them the assurance they need to allow their child a natural death. Others want care to be comfort-focused in order to maximize the time they have to be together as a family. Through this journey, a perinatal palliative team can provide the support and encouragement for families to express their goals and wishes, as well as find meaning and hope.
On 2 January 2020, Singapore implemented preventive measures to minimise importation of COVID-19 cases after China reported its first case to the World Health Organisation on 31 December 2019, in what was to become a global pandemic. After confirming its first local case of COVID-19 on 23 January 2020, Singapore has adopted increasingly stringent containment measures, moving into mitigation mode when the number of cases escalated. Local hospitals have also instituted progressively stricter restrictions on visitation hours and the number of visitors. As of 28 May 2020, there were 33,249 confirmed cases of COVID-19, with 14,925 cases under observation, 18,294 cases discharged, 7 patients in critical condition and 23 deaths attributed to COVID-19.
BACKGROUND: Dyads receiving palliative care for advanced heart failure are at risk for the loss of feeling safe, experienced as a fractured sense of coherence, discontinuity in sense of self and relationships, and strained social connections and altered roles. However, few theory-based interventions have addressed feeling safe in this vulnerable population.
PURPOSE: The purpose of this article is to describe the development of the Nostalgic Remembering Intervention to strengthen feeling safe and promote adaptive physiological and psychological regulation in dyads receiving palliative care for heart failure.
CONCLUSIONS: Systematic intervention development is essential to understand what, for whom, why, and how an intervention works in producing outcomes. Program theory provided a systematic approach to the development of the Nostalgic Remembering Intervention, including conceptualization of the problem targeted by the intervention, specification of critical inputs and conditions that operationalize the intervention, and understanding the mediating processes leading to expected outcomes.
CLINICAL IMPLICATIONS: Creating a foundation for cardiovascular nursing research and practice requires continued, systematic development of theory-based interventions to best meet the needs of dyads receiving palliative care for heart failure. The development of the Nostalgic Remembering Intervention to strengthen feeling safe in dyads provides a novel and relevant approach.
BACKGROUND: Recognizing and managing existential suffering remains challenging. We present two cases demonstrating how existential suffering manifests in patients and how to manage it to alleviate suffering.
CASE DESCRIPTION: Case 1: A 69-year-old man with renal cell carcinoma receiving end-of-life care expressed fear of lying down "as he may not wake up." He also expressed concerns of not being a good Christian. Supportive psychotherapy and chaplain support were provided, with anxiolytic medications as needed. He was able to express his fear of dying and concern about his family, and Edmonton Symptom Assessment System scores improved. He died peacefully with family at bedside. Case 2: A 71-year-old woman presented with follicular lymphoma and colonic obstruction requiring nasogastric drain of fecaloid matter. Initially, she felt that focusing on comfort rather than cure symbolized giving up but eventually felt at peace. Physical symptoms were well-controlled but emotionally she became more distressed, repeatedly asking angrily, "Why is it taking so long to die?." She was supported by her family through Bible readings and prayers, but she was distressed about being a burden to them. An interdisciplinary approach involving expressive supportive counseling, spiritual care, and integrative medicine resulted in limited distress relief. Owing to increasing agitation, the patient and family agreed to titrate chlorpromazine to sedation. Her family was appreciative that she was restful until her death.
CONCLUSION: Existential suffering manifests through multiple domains in each patient. A combination of pharmacologic and non-pharmacologic techniques may be needed to relieve end-of-life suffering.
Nurses play a central role in delivering palliative care, given their influence on the quality of care provided (Montgomery, Sawin, & Hendricks-Ferguson, 2016). They are professionals of choice when it comes to assessing disease symptoms or psychological distress, ensuring symptoms are managed effectively, as well as accompanying patients and families through the decision-making process regarding both adult and pediatric care (Contro, Larson, Scofield, Sourkes, & Cohen, 2004). Optimal palliative care practices can prevent or alleviate the suffering of patients of all ages at the end of life, particularly if the care includes the assessment of symptoms and provides the patient and his or her family with psychological and social support (Qaseem et al., 2008). Although the majority of patients receiving palliative care are adults, more than 4,000 children in Canada have an incurable disease for which they will require quality palliative care (Widger, Cadell, Davies, Siden, & Steele, 2012). However, a number of studies carried out with nurses have revealed that they experience anxiety with regard to the pediatric palliative care (PPC) they deliver (Mullen, Reynolds, & Larson, 2015) and difficulties communicating with families of patients (Montgomery et al., 2017), as well as managing their emotions when they attend to a child who is at the end of life (Roberts & Boyle, 2005). Based on the first hypothesis suggested by Contro et al. (2004), such behaviour can be explained by a lack of knowledge regarding PPC.
BACKGROUND: End-of-life caregiving frequently is managed by friends and family. Studies on hastened death, including aid in dying or assisted suicide, indicate friends and family also play essential roles before, during, and after death. No studies have compared the experiences of caregivers in hastened and non-hastened death. The study aim is to compare end-of-life and hastened death caregiving experience using Hudson's modified stress-coping model for palliative caregiving.
METHOD: Narrative synthesis of qualitative studies for caregivers at end of life and in hastened death, with 9946 end-of life and 1414 hastened death qualitative, peer-reviewed research articles extracted from MEDLINE, CINAHL, Web of Science, and PsycINFO, published between January 1998 and April 2020.
RESULTS: Forty-two end-of-life caregiving and 12 hastened death caregiving articles met inclusion criteria. In both end-of-life and hastened death contexts, caregivers are motivated to ease patient suffering and may put their own needs or feelings aside to focus on that priority. Hastened death caregivers' expectation of impending death and the short duration of caregiving may result in less caregiver burden. Acceptance of the patient's condition, social support, and support from healthcare professionals all appear to improve caregiver experience. However, data on hastened death are limited.
CONCLUSION: Caregivers in both groups sought closeness with the patient and reported satisfaction at having done their best to care for the patient in a critical time. Awareness of anticipated death and support from healthcare professionals appear to reduce caregiver stress. The modified stress-coping framework is an effective lens for interpreting caregivers' experiences at end of life and in the context of hastened death.
Introduction : La plupart des Français souhaitent mourir à domicile mais peu d’entre eux y décèdent réellement. L’expression par le patient de son souhait sur le lieu de son décès en favorise le respect, mais les médecins connaissent peu ces souhaits. L’objectif de l’étude est de recueillir la façon dont les personnes en situation palliative à domicile envisagent d’aborder le lieu de décès avec leur médecin généraliste.
Méthode : Une étude qualitative a été réalisée par entretiens individuels semi-dirigés au domicile des personnes atteintes d’une pathologie incurable avec un pronostic vital entre 4 semaines et 2 ans.
Résultats : 15 entretiens ont été menés. La plupart des personnes interrogées souhaitent mourir à la maison, proche des leurs, mais le besoin d’être accompagné et de préserver leur entourage semble être plus important pour elles. Elles attendent que le médecin traitant aborde la fin de vie et le lieu de décès avec disponibilité, écoute et bienveillance, et qu’il y montre de l’intérêt. L’émergence de trois profils (paternaliste, autonomiste et intermédiaire) illustre la façon dont elles envisagent ces discussions avec leur médecin traitant.
Discussion : Les personnes en situation palliative à domicile attendent que le médecin traitant aborde la fin de vie avec une attitude adaptée au profil de chacun. Une consultation dédiée permettrait au médecin généraliste de créer des conditions favorables afin de donner au malade une opportunité d’aborder ce sujet sensible et de respecter ses souhaits.
Conclusion : Les malades souhaitent une implication du médecin généraliste dans les discussions anticipées.
Les personnes qui participent aux rencontres proposées par Jalmalv Grenoble, dans le cadre de l’atelier « Face à la mort, où en suis-je dans ma vie ? », ont pour la plupart vécu l’accompagnement d’un proche, dans le cadre familial ou amical. Cette expérience forte a laissé des traces. Elle est souvent évoquée au cours des réunions et continue à nourrir leur réflexion.
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J’ai été appelée pendant le confinement, par le personnel de l’Ehpad où j’interviens comme bénévole d’accompagnement dans le cadre de Jalmalv, pour accompagner une personne en fin d’existence. Ce même jour, lorsque je suis allée dans l’unité protégée, c’était comme si l’on entrait dans un monde complètement inconnu, un peu comme si l’on était sur la lune, ou lorsqu’on voit les visages des costumés du carnaval de Venise ou bien des clowns dans le cirque, tous avec une expression figée. Du personnel, je ne reconnaissais personne : mes amies que je connais depuis cinq ans ! Chacun·e occupé·e par sa tâche de soins… tous fidèles au poste !
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Bénévole d’accompagnement depuis 2007, j’interviens au domicile ou à l’Ehpad de Die (26) depuis 2010, après avoir accompagné des patients à l’unité de soins palliatifs. J’ai la chance d’avoir rencontré Mme A. à la demande de l’équipe mobile de soins palliatifs. Nous sommes plusieurs bénévoles auprès d’elle, depuis quelques années. Nous l’avons d’abord connue dans son appartement d’un quartier de Die, et depuis 4 ans, nous la visitons à l’Ehpad rattaché à l’hôpital. Par sa durée, cet accompagnement me rend témoin d’un lent dépouillement, fait de pertes successives soulignant sa solitude.
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Palliative care emphasizes expertise in handling difficult conversations, discussing patients' wishes and supporting the caregiver(s). Here we outline the palliative approach of hoping for the best while preparing for the worst in several "what if" scenarios for people with Parkinson disease and their families during the COVID-19 pandemic.
OBJECTIVE: Parents often feel ill-equipped to prepare their dependent children (<18 years old) for the death of a parent, necessitating support from professionals. The aim of this study is to explore health and social care professionals' (HSCPs) experiences and perceptions of providing supportive care to parents regarding their children, when a parent is dying from cancer.
METHODS: Semi-structured qualitative interviews were conducted with 32 HSCPs, including nurses, allied health professionals, social workers and doctors from specialist or generalist roles, across acute or community sectors.
RESULTS: HSCPs' perceptions of the challenges faced by many families when a parent is dying from cancer included: parental uncertainties surrounding if, when and how to tell the children that their parent was dying, the demands of managing everyday life, and preparing the children for the actual death of their parent. Many HSCPs felt ill-equipped to provide care to parents at end of life concerning their children. The results are discussed under two themes: (1) hurdles to overcome when providing psychological support to parents at end of life and (2) support needs of families for the challenging journey ahead.
CONCLUSIONS: There appears to be a disparity between HSCPs' awareness of the needs of families when a parent is dying and what is provided in practice. HSCPs can have a supportive role and help equip parents, as they prepare their children for the death of their parent. Appropriate training and guideline provision could promote this important aspect of end of life care into practice.
Limited evidence suggests carers of people with pulmonary fibrosis (PF) have a variety of information and support needs. This pilot focus group discussion, carried out in 2019, aimed to explore the needs of carers of people with pulmonary fibrosis and evaluate the impact of a UK hospice PF carers’ support group. Analysis revealed: (1) loneliness and connection, (2) negotiating with and motivating their loved-ones, and (3) the importance of the best environment for support as key themes. Participants reported a need for both practical and emotional support with the carers’ own health sometimes neglected. This evaluation concluded that peer support specifically with other PF carers was hugely valuable to the participants, as was the hospice environment itself. It is recommended that PF-specific carer support is considered when designing services for people with pulmonary fibrosis.
Background: A major goal of hospice care is to provide individually tailored emotional and spiritual support to caregivers of hospice patients.
Objectives: Examine the association between reported emotional support and caregivers' overall rating of hospice care, overall and by race/ethnicity/language.
Subjects: We analyzed survey data corresponding to 657,805 decedents/caregivers who received care from 3160 hospice programs during January 2017–December 2018.
Measurements: Linear regression models examined the association between caregiver-reported receipt of emotional and spiritual support (“too little” vs. “right amount” vs. “too much”) and overall rating of the hospice (0 vs. 100 rating). Interaction terms assessed variation in this association by race/ethnicity/language.
Results: “Too much” emotional support was less common than “too little,” except for caregivers of Hispanic decedents responding in Spanish. “Too little” support was strongly associated with lower hospice ratings for all groups (compared to “right amount” of support, p < 0.001). In contrast, the negative association between “too much” support and hospice rating was much smaller (p < 0.001) among caregivers of white and black decedents. “Too much” support was associated with more positive ratings among caregivers of Hispanic decedents (p < 0.001).
Conclusions: Receipt of “too much” support is a less common and much weaker driver of poor hospice ratings than receipt of “too little” support for all groups, and is not always viewed negatively. This suggests that for hospice evaluation, “too much” support should not be scored equivalently to “too little” support and that providing enough support should be a hospice priority.
BACKGROUND: The number of centenarians in Europe is increasing; many face health impairments. Adult children often play a key role in their care, but there is a lack of research into what it means for these caregiving relatives to be confronted for many years with their parents' end of life (EOL), dying and death as well as their own advancing age.
AIM: This study aims to analyse the challenges of caregiving adult children regarding their parents' end of life and the related burdens and barriers they report.
MATERIAL AND METHODS: Semi-structured interviews were conducted with 13 caregivers following a theory-based and tested guideline. The computer-aided coding and evaluation followed the structured content analysis approach.
RESULTS: The analysis showed three main themes: 'Confronting EOL', 'Communicating about death and dying' and 'Assisting in the terminal phase'. The respondents commented on burdensome demands and concerns about the future. Further, a strong underlying presence of intra- and interpersonal conflicts relating to EOL became apparent.
DISCUSSION: The results indicate several potential burdens for centenarians' caregiving offspring. They are confronted with a double challenge resulting from the combination of their own advanced age and experiencing the burdens of their parents' very old age. Further, some participants struggled with their own unclear perspective on the future because of the relative but unclear proximity of the parent's death. Multiple conflicts and overlapping conflict dimensions emphasise the potential of the EOL topic to influence the well-being of family caregivers and care recipients.
LIMITATIONS: The convenience sample used for the study may cause limitations, for example, the fact that persons with a formally lower educational status are not represented.
CONCLUSION: The findings suggest that interventions designed for family-related care situations should include topics like 'Finiteness and grief', 'Communicating about dying and death' and 'Decisions and dispositions at EOL'.