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…
L'ouvrage évoque l'accompagnement des personnes atteintes de la maladie d'Alzheimer. A partir de son expérience d'infirmière, l'auteure partage les témoignages des familles venues dans le centre d'accueil de jour qu'elle a ouvert. Des points de vue de neurologues et de neuropsychologues sont également présentés.
Background: Despite technological innovations and continuous improvement in evidence-based treatments, mortality in the intensive care unit (ICU) remains high. Consequently, a large group of family members may be in need of, and could benefit from, bereavement follow-up support.
Aims and Objectives: To explore the elements, organization, and evaluation of ICU bereavement services in European countries. Specific objectives were to investigate: (a) the model of bereavement follow-up services (elements of support), (b) the workforce model (organization of staff), and (c) the evaluation model (evaluation strategies).
Design: This was a cross-sectional survey of conference delegates.
Methods: A paper-and-pen questionnaire, including a cover letter assuring the respondents of anonymity and confidentiality, was distributed to 250 delegates during the opening ceremony of the 2017 European federation of Critical Care Nurses associations Congress in Belfast. The questionnaire was developed from a previously validated tool describing bereavement care practices in ICUs, including questions about the content and organization of bereavement follow-up services. Frequencies were calculated using yes/no questions, and content analysis was applied in additional free-text comments.
Results: We received 85 responses from publicly employed nurses, mainly in mixed adult ICUs. Respondents were 48 (56.5%) bedside nurses, and the remaining respondents represented clinical nurse specialists, researchers, managers, or academic nurses. Bereavement follow up had existed for about 1 to 15 years. Important follow-up elements were: viewing the deceased in the unit, 77 (90.6%); providing follow-up information, 67 (79.8%); sending a letter of sympathy, 17 (20%); and calling the family to arrange a meeting, 27 (31%).
Conclusions: Bereavement follow up is common but variable in European ICUs. We recommend the development, implementation, and evaluation of evidence-based, but culture-specific, bereavement follow-up guidelines for European ICUs.
Relevance to clinical practice: More critical care nurses are realizing the need for bereavement follow-up guidelines. This paper provides an overview of common elements that might be considered.
Adaptive regulation of positive and negative affect after the loss of a loved one may foster recovery. In two studies, using similar methods but different samples, we explored the association between positive (i.e., dampening and enhancing) and negative (i.e., rumination) affect regulation strategies and symptoms levels of postloss psychopathology. Study 1 used data from 187 people confronted with the death of a loved one. In study 2, the sample consisted of 134 relatives of long-term missing persons. Participants completed self-reports tapping prolonged grief, depression, posttraumatic stress symptoms, and affect regulation strategies. Hierarchical regression analyses showed that both negative and positive affect regulation strategies explained significant amounts of variance symptom levels in both samples. In line with previous work, our results suggest that negative and positive affect regulation strategies relate to postloss psychopathology. Future research should explore how both affect regulation strategies may adequately be addressed in treatment.
Pediatric cancer has experienced significant improvement in overall survival rates over the past several decades. Despite this progress, however, it remains the leading cause of death from disease beyond infancy in children. Among the children and adolescents that survive their cancer diagnosis, significant symptom burden and toxicities of therapy are often experienced. The evidence presented affords great insight in to the current empirical support for pediatric palliative care involvement, current utilization of palliative care services in the care of children with cancer and their families, and barriers that have been identified to date. Positive trends toward increased, appropriate integration of palliative care services in the care of children with cancer and their families have been observed. Continued research, advocacy, and education are necessary to optimize the care of this vulnerable population of patients and their families.
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.
Purpose: This study aimed to clarify the experiences of caregivers desiring to refuse life-prolonging treatment for their elderly parents at the end of life.
Methods: A semi-structured interview was performed for four family caregivers who wanted to refuse life-prolonging treatment suggested by the physicians.
Results: In this study, four caregivers who refused life-prolonging treatment suggested by the physicians for their elderly parents completed semi-structured interviews. The obtained data were analyzed in relation to the theme "Experiences of caregivers who desire to refuse life-prolonging treatment for their elderly parents at the end of life." As a result, 38 subcategories and 12 categories were extracted.
Conclusions: Participants in this study initially had a negative view of life-prolonging treatment. However, they agonized over the decision when they received conflicting advice from the physicians. The participants indicated that physicians' advice and attitudes complicated their decisions to reject life-prolonging treatment for their elderly parents.
Background: Critical care consensus groups recommend providing bereavement support; however, little is known about what cardiac intensive care patients' families would find useful and beneficial in their grieving process.
Aim and objectives: To describe cardiac intensive care unit (ICU) patients' families' opinions on six common components of a bereavement programme.
Design: Qualitative, exploratory and descriptive.
Methods: Families were recruited from a cardiac ICU 13-15 months after their loved one's death. Families were interviewed using a semi-structured questionnaire. The research team analysed interview transcripts to assess and categorize families' opinions on six bereavement components.
RESULTS: Twelve family members were interviewed. Most were female (n = 8, 67%), spouses (n = 10, 83%) and white (n = 10, 83%), with a mean age (SD) of 58.4 years (16.7). Families' overall opinions of the bereavement brochure were positive, stating it was helpful in providing information about the grieving process. Families described the sympathy card as "meaningful" and "touching," although they rated it neutral in providing comfort. Most participants felt that a follow-up telephone call was unnecessary except to answer lingering questions they had. Many participants favoured the unit offering counselling services because they found therapy helpful in their grieving process. Participants had mixed feelings about a memory box; they believed it was an individual preference and should be handled in a sensitive manner. Most would not have attended a memorial service if offered because of traffic, distance, concerns about stressful feelings on returning to the hospital or because they already honoured their loved ones through a personalized memorial service.
Conclusions: Participants varied in their opinions about what bereavement services may be useful; however, this study provides insight about services that cardiac critical care units may consider when adding bereavement support.
Relevance to clinical practice: Family perspectives about bereavement needs can help structure services offered by critical care units.
Background and Objectives: Advance care planning (ACP) is a critical component of health care affecting the quality of later life. Responding to the increase in the older immigrant population in the United States, this empirical study explored the racial/ethnic gaps in ACP behaviors among older immigrants and examined the end-of-life (EOL) care planning and preferences of foreign-born immigrant older adults focusing on race/ethnicity, acculturation, health need factors, and enabling social factors (financial capability, public assistance, and informal supports) after controlling predisposing factors (sociodemographic characteristics).
Research Design and Methods: Using a subsample from the National Health and Aging Trends Study 2011 and 2012, hierarchical logistic regression models of the EOL plan and preferences were examined with 50 multiple imputation data sets (n = 232).
Results: Descriptive statistics reveal lower ACP engagement of immigrants from racial/ethnic minority groups. In logistic models, however, only Black immigrants were less likely than Whites to have EOL conversations. Among acculturation factors, age at immigration was only negatively associated with having a durable power of attorney for health, but not significantly associated with other ACP behaviors. Instead, health and social factors, primarily need in health and informal support (i.e., number of coresidents and receiving financial help from family members), were associated with different types of ACP components. Receiving public assistance (i.e., receiving Medicaid and SSI) were positively associated with EOL treatment preferences.
Discussion and Implications: Older foreign-born immigrants, in general, showed lower ACP engagement than the overall older population. Moreover, minority immigrants were lower on ACP engagement than both White immigrants. This study highlights the need for formal and informal assistance for enhancing EOL planning for older immigrants. Adding to the culturally competent approach, policy efforts should address social and health factors that accrued throughout individuals' life spans and affect older immigrants' EOL preparation and care.
Studies of terrorism-related deaths are few and mostly focus on short-term effects. To characterize long-term bereavement outcomes, including resilience/recovery and patterns of comorbidity, following the September 11, 2001 (9/11), terrorist attacks, we report mental health conditions and grief-related impairment in 454 9/11 bereaved family members. In addition, the contribution of non-9/11 lifetime traumas, pre-9/11 mental health conditions, post-9/11 interim life events, grief services, income adequacy, and social support were examined. Latent class analyses yielded three groups: healthy, comorbid without PTSD (comorbid/noPTSD), and comorbid with PTSD and impaired (comorbid/PTSD+I). Participants in the healthy group (66.1%) were least likely to meet thresholds for mental conditions, whereas those in the comorbid/noPTSD (21.3%) and comorbid/PTSD+I (12.6%) groups had higher probabilities of meeting depression, grief, and anxiety thresholds. These groups also endorsed more negatively valenced post-9/11 interim life events than the healthy group: comorbid/noPTSD vs. healthy, odds ratio (OR) = 0.84, 95% CI [0.76, 0.94]; comorbid/PTSD+I vs. healthy, OR = 0.85, 95% CI [0.76, 0.96]. Comorbid/PTSD+I was the only group with elevated probabilities of meeting clinical thresholds for PTSD (.64) and grief-related impairment (.94). This group was also more likely to include bereaved parents: comorbid/PTSD+I vs. healthy, OR = 12.96, 95% CI [1.97, 85.41]; comorbid/PTSD+I vs. comorbid/noPTSD, OR = 15.55, 95% CI [1.63, 148.41]); and to experience more non-9/11 lifetime traumas: comorbid/PTSD+I vs. healthy, OR = 4.34, 95% CI [1.28, 14.70]; comorbid/PTSD+I vs. comorbid/noPTSD, OR = 6.54, 95% CI [1.53, 27.95]. Clinical and community programs should target this high-risk group to identify individuals in need of services.
Families are struggling with many challenges in the final stages of patient life. It is important to understand what actions nurses do for the family of the end-of-life (EOL) patients. This study aimed to explain the main strategy of nurses’ dealing with the family of the EOL patients. Data were analyzed using conventional content analysis. Semistructured interviews were conducted on 32 nurses from hospitals in Tehran. Nurses used six measures of explaining the bitter reality, effective communication, management of violence, referral, consolation, and reinforcement. “Contingency help” was conceptualized as the main strategy. Nurses through “contingency help” were involved in solving the emotional, physical, financial, and spiritual needs of the family. Nurses will be able to apply the results of this study to the development of care policies for the family of the EOL patients.
This article presents qualitative data to explore the experience of farming family members faced with accidental or suicide death and understand how this is experienced within the farming context. Individual semistructured interviews were conducted with 25 members of Australian farming families bereaved by suicide or accidental death. Qualitative data was thematically analyzed. Three interconnected themes were identified: acceptance of risk, normalization of death, pragmatic behavior patterns and connection to place. Bereavement and reconstruction of meaning following suicide or accidental death for farming families is influenced by the cultural, social, geographical, and psychological contexts of farming families. This article challenges traditional conceptions of suicide and accidental death as necessarily experienced as “violent” or “traumatic,” bereavement as experienced similarly across western cultures, and the reaction to suicide or accidental death as one that challenges people’s understanding of their world and leaves them struggling to find a reason why the death occurred.
Family carers play a central role in community-based palliative care. However, caring for a terminally ill person puts the carer at increased risk of physical and mental morbidity. The Carer Support Needs Assessment Tool (CSNAT) enables comprehensive assessment of carer support needs. The present study aimed to identify barriers and facilitators to implementing the CSNAT in a community specialist palliative care service. Semi-structured interviews with 12 palliative care nurse specialists from two community nursing teams in Lothian, Scotland, June 2017. Data was audio-recorded, transcribed and analysed. Palliative care nurse specialists acknowledge the importance of carers in palliative care and encourage carer support practices. Nurses perceived the CSNAT as useful, but used it as an 'add-on' to current practice, rather than as a new approach to carer-led assessment. Further training is recommended to ensure community palliative care nurses are familiar with the broader CSNAT approach.
AIMS: To evaluate the effectiveness of a two-session multicomponent family strengths- oriented therapeutic conversation intervention among family caregivers of an individual with advanced/final stage cancer during ongoing palliative home-care.
BACKGROUND: Family caregivers of patients in the advanced/final phases of cancer, experience multifaceted psychological distress and morbidity. Psychosocial interventions improve the well-being of family members who are caring for their close relative.
DESIGN: A pre-experimental design with a one-group pre-test/posttests measurements.
METHODS: Forty-eight family caregivers were assigned to receive two 60-90 min sessions of the intervention. The primary outcome was perceived emotional and cognitive support and psychological well-being, measured at baseline (T1). Then the participants were offered the first session of the intervention. About one week later, the second session was administered. The participants answered the same questionnaires again (T2) and then 2-4 weeks later (T3). The guideline; Criteria for Reporting Development and Evaluation of Complex Interventions 2, guided the reporting of the study.
RESULTS: Family caregivers reported significantly higher emotional and cognitive support post-intervention (T2) and (T3). They also reported significantly reduced stress symptoms at (T3) and reduced caregiver burden post-intervention (T2) and at (T3).
CONCLUSION: The provision of the intervention contributed to extending knowledge about the usefulness of family conversations in the context of advanced/final stage cancer care.
IMPACT: There is a lack of knowledge regarding the benefit of therapeutic conversations interventions for family caregivers. The therapeutic conversation intervention offered, resulted in perceived support, decreased stress and decreased caregiving demands among caregivers in palliative home-care. This article is protected by copyright. All rights reserved.
Experiencing the end of life of a family member in the intensive care unit is clearly difficult. An important role of critical care nurses is to help family members through this challenging period. This article highlights a few clinically significant barriers and facilitators related to improving family experiences at the patient's end of life that have received less attention in the literature thus far. Facilitators include specific aspects of communication, the nurse's role as the coordinator of care, bereavement care, promoting a "good death," and caring for health care providers. Barriers include medical uncertainty and differences in values and culture.
Alors qu'elle s'apprêtait à profiter d'un week-end romantique pour célébrer le troisième anniversaire de sa guérison, Daisy reçoit une terrible nouvelle : elle est atteinte d'un nouveau cancer en phase terminale. La mort est une perspective effrayante ; abandonner Jack, son mari brillant mais adorablement démuni face à la vie, l'est encore plus. Daisy se lance donc avec acharnement dans la quête de la femme idéale pour qu'après son départ, Jack ne se retrouve pas seul.
Mais lorsque l'image de son mari avec une autre ne devient que trop réelle, Daisy devra choisir ce qui compte le plus pour elle dans les quelques mois qu'il lui reste : son propre bonheur ou celui de Jack...
For patients at the end of life, the oncologist's care continues beyond the cessation of disease-directed therapy. When cure or even prolongation of life is no longer possible, oncologists have one last task remaining: to provide expert care to patients at the end of life and support for their families. Physical comfort, clear communication, emotional support, helping patients maintain a sense of purpose, clarifying wishes about attempts at resuscitation, working on legacies, addressing patient distress, and helping families as they struggle with their loss are all the work of a team of clinicians, led by the oncologist, who the patient and family continue to look to as their guide, even when no further antineoplastic therapies or immunotherapies can be offered. The team often includes the rest of the oncology team of clinicians, as well as social workers, chaplains, a palliative care clinician, and, when appropriate, a hospice team. Families with young children need specialized counseling and support. Ongoing losses (in identity or function or of roles in the family, community, or workplace) contribute to spiritual and existential distress. The palliative care and hospice teams can help with life reviews and reconnection with sources of spiritual support, including religious rituals, to help reaffirm identity and roles. The oncologist's final responsibility is ongoing communication with the survivors after the patient's death. Survivors appreciate ongoing communication, cards, and phone calls to answer any remaining questions and quell any lingering doubts. These communications also bring closure to the oncologist and oncology team, allowing them to reflect on and grieve their loss and to remember the work they did with the patient and his or her family.