Lorsqu’on accompagne une personne arrivant en fin de vie, qui souffre d’un Alzheimer, ou se retrouve en soins palliatifs, comment anticiper le deuil tout en respectant la personne ? Comment accompagner le mourant en lui apportant le soutien qu’il attend ? Comment accompagner un proche en fin de vie ? Comment traverser un deuil ? Comment accepter la séparation ?
Autant de questions auxquelles cet ouvrage tente de répondre.
La vie de Fabienne bascule une nuit de novembre 2015 lorsque son fils Giani se fait poignarder. Laissé pour mort, le jeune homme s’en sort miraculeusement, mais avec de terribles séquelles : handicapé à 95 %, il souffre également d’un « locked in syndrom ». Enfermé dans son propre corps, Giani est désormais incapable de marcher, de manger et même de respirer seul. Il ne communique plus qu’en bougeant les paupières et en soulevant un doigt. En permanence, sa mère est à son chevet, témoin impuissant de sa souffrance mais prête à se battre pour que justice soit faite. Dans ce témoignage, Fabienne raconte la lutte quotidienne de son fils. Un calvaire qui durera trois longues années. Jusqu’au moment où Giani exprime sa volonté d’en finir et de mourir dignement. Un droit élémentaire dont cette mère-courage a fait aujourd’hui son combat.
BACKGROUND: Being terminally ill affects not only the life of patients but also that of their loved ones. Dyads of adult children and their parents at the end of life may face specific challenges with regard to their relationship and interactions that need to be further examined.
AIM: The aim was to identify, describe and summarise available evidence on adult child-parent interaction and psychosocial support needs at the end of life. Research gaps in the existing literature are disclosed and recommendations for future research are presented.
DESIGN: A type 4 scoping review according to Arksey and O'Malley's (2005) methodological framework was conducted. The review includes studies regardless of study design and provides a descriptive account of foci of available research.
DATA SOURCES: The PubMed, PsycINFO, CINAHL, Google Scholar and Web of Science databases were searched from inception to 16 August 2018. An additional hand search was conducted. A highly sensitive search strategy was employed to cover all potentially relevant results.
RESULTS: The authors screened 1832 records by title and abstract, retrieved 216 full-text articles and included 15 studies from the database search. One study was identified by way of hand search. The review identified six major themes: (1) adult child-parent relationship, (2) adult child-parent communication, (3) involvement in caregiving, (4) benefit and burden of caregiving, (5) coping strategies and (6) support and information for caregivers.
CONCLUSIONS: The scoping review accentuates the paucity of studies that address both patients' and their parent/adult child caregivers' relationship, interaction and psychosocial support needs.
This article studies forgiveness and reconciliation (F/R) in patients with cancer. It focuses on the end of life, when family conflicts resurface and unfinished business challenges patients and causes spiritual distress. Forgiveness and reconciliation may intensify patient-family relationships and facilitate peace of mind and peaceful death. Existing forgiveness models and interventions focus on coping in life, yet no study has examined F/R processes until death. Our mixed-method exploratory study hypothesized that F/R processes occur in phases, repeatedly, and are spurred by approaching death. Three interdisciplinary units at a major Swiss hospital observed 50 dying patients with cancer experiencing severe conflicts with relatives, themselves, and/or with fate/God. Participant observation was combined with interpretative phenomenological analysis and descriptive statistical analysis. A semi-structured observation protocol was developed based on a 5-phase model. The protocol included space for notes (emotions, interventions, effects on dying processes). It was assessed by 20 professionals for 1 year. Analysis was supported by international interdisciplinary experts. We found that conflicts were complex and involved relational, biographical, and spiritual layers. In 62% of patients, F/R processes occurred repeatedly. Many patients died after finding F/R (22 within 48 hours). Patients indicated that imminent death, a mediating third party, acceptance, and experiences of hope motivated them to seek F/R. Although deep relationships may support F/R processes, our limited data on near-death experience/spiritual experiences restrict interpretation. Forgiveness and reconciliation processes oscillate between 5 phases: denial, crisis, experience of hope, decision, and finding F/R. Understanding F/R processes, empathy, hope, and a neutral third party may support patients in seeking forgiveness.
In this Australian, constructivist grounded theory study, we undertook in-depth interviews with 11 dying people and 8 caregivers to examine their perspectives on role relations at end-of-life. We found that situations of role alignment between dying people and their family and friends support positive relational and practical outcomes, whereas role mismatch can cause considerable distress. Factors contributing to role mismatch at end-of-life were: dying people and their caregivers’ efforts to shield each other from emotional harm; fear of social exclusion; and unwanted focus on the dying identity. Our findings highlight a need for flexibility and adaptability in end-of-life role relations.
Despite high rates of drug-related deaths (DRDs), drug-related bereavement has been sparsely investigated. A systematic literature search for qualitative and quantitative studies was conducted. Studies on bereaved DRD family members and systems influencing bereavement were eligible for inclusion. Eight studies were included. Three themes emerged from the thematic analysis (Emotional Roller Coaster, Lack of Understanding by the Social World, and Meaning Making) describing an emotional and existential overload, stigmatization and lack of understanding and help from support systems. The results also shed light on life after the loss. Directions for further research were subsequently outlined.
Hospice patients die in various settings, including at home with family caregivers. Hospice offers a time-of-death visit to provide support and confirm death, a requirement in some states but not all. Few studies have been conducted among home hospice families exploring their experiences without a time-of-death visit. To better understand the family’s experience regarding the time of death of their loved one, we conducted an exploratory study using a hermeneutic phenomenological approach. Home hospice families who had experienced a death within the last 6 to 13 months and had not received a time-of-death visit were recruited. Seven interviews were conducted, and data were analyzed using an emergent thematic approach. Major themes included caregiver’s previous experience with death, caregiver support, final hours, and reasons for not selecting a time-of-death visit. Results showed families did well without a time-of-death visit when strong social support was present and conveyed the importance of allowing personal choice. Further research is needed to identify families in need of time-of-death visits and targeted support needs and to inform practice and policy guidelines.
While end-of-life care (EoLC) priorities for patients dying in the hospital are well-documented, few data characterize needs and experiences of their family members. We conducted thematic analysis of audio recorded interviews of 18 bereaved family members to elucidate these experiences. Participants’ memories were organized into two parent themes: those related to satisfaction with the care received and effective communication; those identifying shortcomings in patient care, hospital-family communication, hospital environment, and care burden on the part of family members. These findings provide insight to enhance services to patients and their families at end-of-life and improve postmortem and bereavement services.
Objective: Home-based palliative care has been suggested to be a beneficial model of care. Whether it is a desirable option of the family and patients is arguable. This study, therefore, aimed to explore the experience of the family the palliative cancer patients in their decision-making process of taking care of the patients at home.
Methods: This study was a qualitative study using descriptive phenomenology approach. Data were obtained through in-depth interviews with 10 family member of the palliative cancer patients.
Results: three themes emerged in this study: (1) family's limited knowledge and skill to take care of the palliative cancer patients at home, (2) family wish the patients to stay being treated in the hospitals, (3) family depends on the hospital for palliative cancer patients.
Conclusions: Nurses should evaluate family preference, readiness, and capabilities in taking care of palliative cancer patients at home. Nurses should collaborate with the health care providers in assisting the family in their decision making to keep the palliative care patients at the hospital or take them home.
BACKGROUND: There is evidence indicating that family sense of coherence predicts quality of family life and promotes family well-being. In families living with the palliative phase of cancer, low hope, anxiety and symptoms of depression are common in both persons with cancer and their family members.
AIM: To determine whether family sense of coherence was associated with hope, anxiety and symptoms of depression, respectively, in persons with cancer in the palliative phase and their family members.
DESIGN: An observational, cross-sectional, multicentre study was conducted. Nested linear regression analyses were performed in two blocks to determine whether family sense of coherence was associated with hope, anxiety and symptoms of depression.
SETTING/PARTICIPANTS: Persons with cancer (n = 179) and their family members (n = 165) were recruited from two oncology clinics and two palliative centres in three regions in Sweden.
RESULTS: The main findings showed that family sense of coherence was significantly and independently associated with hope, anxiety and symptoms of depression. Stronger family sense of coherence was associated with higher hope and lower anxiety and symptoms of depression levels in both persons with cancer and their family members.
CONCLUSION: Health care providers should strive to identify families with weak family sense of coherence, because of its associations with hope, anxiety and symptoms of depression, in order to offer them professional support and thereby achieve increased well-being during the palliative phase of cancer. Future studies should expand our knowledge of family sense of coherence and how to identify families at risk of lower levels of well-being.
Background: Spirituality is important for many family members of patients in the intensive care unit (ICU). Clinicians without training in spiritual care experience difficulty identifying when family members are experiencing distress of a spiritual nature.
Objective: The purpose of this study was to develop a guide to help clinicians working in the ICU identify family members who may benefit from specialized spiritual support.
Design: ross-sectional study.
Setting/Subjects: A national sample of spiritual health practitioners, family members, and ICU clinicians.
Subjects: A panel of 21 spiritual health practitioners participated in a modified Delphi process to achieve consensus on items that suggest spiritual distress among family members of patients in the ICU through three rounds of remote review followed by an in-person conference and a final round of panelist feedback. Feedback on the final set of items was obtained from an end-user group of four family members and six ICU clinicians.
Measurements: A total of 220 items were iteratively reviewed and rated by panelists. Forty-six items were identified as essential for inclusion and developed into a clinical guide, including an introduction (n = 1), definitions (n = 2), risk factors (n = 10), expressed concerns (n = 12), emotions (n = 7) and behaviors (n = 7) that may suggest spiritual distress, questions to identify spiritual needs (n = 6), and introducing spiritual support (n = 1).
Conclusions: We have developed an evidence-informed clinical guide that may help clinicians in the ICU identify family members experiencing spiritual distress.
BACKGROUND: Good communication with the family is a clinical imperative for high quality end-of-life (EOL) care in intensive care unit (ICU). Many interventions aim to improve EOL communication, and the choice of an outcome instrument has important implications for evaluating interventions. The purpose of this project is to search and review available instruments' psychometric properties and determine which best measures family-clinician communication in the ICU.
METHOD: A stepwise method was used by searching 2 databases (PsycInfo and Web of Science) to identify instruments and articles that provide information about scale psychometric properties.
INSTRUMENTS: Three instruments were identified, including Family Inpatient Communication Survey, Family Perception of Physician-Family Caregiver Communication, and Quality of Communication (QOC).
RESULTS: Reliability estimates were high (= 0.79) in all 3 instruments. The QOC’s convergent validity estimates exceed its discriminant validity values, and the QOC is an intervention-sensitive measure used to examine families’ treatment response in randomized control trials.
CONCLUSION: Quality of Communication is the most suitable instrument to measure family's perceptions of EOL communication in the ICU. Quality of Communication scores provide a deeper understanding of family-clinician communication and data about how to improve EOL care in ICUs.
PURPOSE: The purpose of this study was to evaluate whether an educational palliative care intervention improved the quality of life for next of kin to older persons in nursing homes.
METHODS: Altogether, 90 next of kin in the intervention group and 105 next of kin in the control group were included. Data were collected using the WHOQOL-BREF questionnaire, answered before and 3 months after the intervention was completed. Descriptive and comparative analyses were performed.
RESULTS: This study found a statistically significant increase in the Physical health subscale in the intervention group but not in the control group. In contrast, the General health score decreased in the control group but not in the implementation group. Furthermore, we found an increase in the item able to perform activities of daily living in the intervention group and a decrease in the item energy and fatigue in the control group.
CONCLUSION: The results indicated small statistical changes regarding next of kins' QoL in favour of the intervention. Lessons learned from the study for future research are to include next of kin as participants at meetings about next of kin and to include more meetings about the theme next of kin. Both approaches would bring a stronger focus on the family-centred care aspect of the intervention into the education component, which this study indicates the need for.
TRIAL REGISTRY: Trial registration NCT02708498. Date of registration 26 February 2016.
Background: Spiritual distress among family members of patients in the intensive care unit (ICU) has not been well characterized. This limits clinicians' understanding of how to best offer support.
Objective: To explore how family members experience spiritual distress, and how it is recognized and support offered within the ICU context.
Design: A qualitative study involving interviews and focus groups between May 2016 and April 2017.
Setting/Subjects: Family members of ICU patients (n = 18), spiritual health practitioners (n = 10), and an interprofessional group of clinicians who work in the ICU (n = 32).
Measurements: Transcribed data were analyzed using interpretive description.
Results: The experience of spiritual distress was variably described by all three groups through concepts, modulators, expressions and manifestations, and ways in which spiritual distress was addressed. Concepts included loss of meaning, purpose and connection, tension in beliefs, and interconnected distress. Modulators were related to the patient and family context, the ICU context, and the relational context. Expressions and manifestations were unique and individual, involving verbal expressions of thoughts and emotions, as well as behavioral manifestations of coping. Clinical strategies for addressing spiritual distress were described through general principles, specific strategies for discussing spiritual distress, and ways in which spiritual support can be offered.
Conclusions: Our study provides a rich description of how spiritual distress is experienced by family members of ICU patients, and how spiritual health practitioners and clinicians recognize spiritual distress and offer support. These findings will help inform clinician education and initiatives to better support families of critically ill patients.
Introduction: End of life and organ donation discussions come at a time of acute emotional unrest for grieving relatives. Their attitudes and eventual decisions regarding consent to organ donation are shaped by multiple factors during these stressful periods. At our tertiary centre intensive care unit, we anecdotally observed that the mode of organ donation affects family behaviour as to whether families stay until transfer to theatre for organ recovery, or leave after consenting for donation. We sought to ascertain if this observation was true and then to hypothesise reasons for why this may be the case.
Methods: Records of patients consented for deceased organ donation between 1 January 2015 and 31 December 2017 at the Nottingham University Hospitals NHS Trust were reviewed and analysed.
Results: After exclusion criteria were applied, 91 patient cases were included in the final analysis (donation after brainstem death (DBD), 36; donation after circulatory death (DCD), 55). Thirty-six per cent of DBD families stayed until the point of organ recovery compared to 80% of DCD families (p < 0.00001).
Discussion: We hypothesise that this family behaviour may be indicative of an acceptance in DBD of the patient's death, and therefore that the patient has moved beyond further harm. For this reason, the family may feel able to leave after consent for donation. A greater understanding of how family behaviours differ depending on the mode of organ donation may aid how these families are best cared for in the intensive care unit.
BACKGROUND: We sought to increase intensive care unit-family meeting (ICU-FM) documentation in the electronic health record in Veterans Affairs (VA) hospitals.
MEASURES: Primary outcomes were proportion of VA decedents with ICU-FM and Bereaved Family Survey-Performance Measure (BFS-PM) scores of "excellent".
INTERVENTION: Quality Improvement (QI) project, clinical champion and ICU-FM templates, were implemented in nine participating VA facilities. ICU-FMs and BFS-PM were determined in decedents between 2011-2018.
OUTCOMES: ICU-FM increased from 3% to 28% in participating vs. 5% to 6% in non-participating facilities over time. Participating facilities were 5-fold more likely to have ICU-FMs among ICU decedents (OR=5.69, [4.45-7.28]). Facility-wide excellent BFS-PM scores increased by 19% in participating vs. non-participating facilities at the end of the observation period (OR=1.19, [1.10-1.30] but no difference between groups was observed in patients who died in the ICU.
CONCLUSIONS: Increasing ICU-FMs is necessary but not sufficient to improve family-reported satisfaction following an ICU death.
Cet article a pour objectif de présenter un livret d’information destiné aux patients d’une maladie lysosomale, à leurs familles et aux professionnels prenant soin d’eux. Ce livret tend à sensibiliser sur l’impact de la douleur chronique sur la qualité de vie et sur la démarche palliative. Les auteurs présentent le contexte de la construction de ce livret, son contenu et sa diffusion.
Le système de santé privilégie aujourd'hui la prise en charge de malades au domicile. Au-delà des interrogations d'ordre financier et structurel que cela implique, cela ne va pas sans questionner la notion de vulnérabilité du malade. Mais également la vulnérabilité de chacune des personnes agissant autour du malade au domicile.
[Début de l'article]
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…
The involvement of families, friends and others important to the patient has always been central in person-centred, individualised care. Following fragility fracture, many patients wish for their family and significant others to be involved in their care, both during the hospital stay and following discharge, and it is often expected that families will provide, or lead, continuing care once they are discharged.