"On s'était pourtant mis d'accord avec les enfants : pas d'acharnement". L''acharnement, un sujet on ne peut plus brûlant d'actualité médicale et sociétale.
Dans un service de réanimation où se mêlent technicité, souffrance, guérison, vulnérabilité, espoir et fin de vie, moi infirmière, ne peux plus me défausser face à cette famille qui par ces mots s'exclut, choque, dérange et déstabilise mon équipe.
En cours de formation continue de Soins Palliatifs et d'Accompagnement, il me faut y aller, me risquer, à la rencontre de ces parents qui ne demandent qu'à exister, être entendus, accompagnés.
Qu'a développé en moi, soignante, ce DIU si singulier pour me sentir prête à tenir une présence, tout entendre, et remettre en question ma pratique, mes positions dans des situations toujours plus complexes, humaines et éthiques telles que celles-ci ?
Les concepts d'altérité, transdisciplinarité et pratique réflexive vont m'aider à y répondre...
The United States military began to experience a steady increase in suicide rates across all service branches at the inception of the wars in Afghanistan (2001) and Iraq (2003). As the number of suicide deaths increased, so did the number of affected survivors who seek postvention support. Unique issues that accompany suicide death may expose survivors to a more distressing and complicated grief process. Peer support has clinically been observed to be widely utilized by suicide loss survivors. This article explores unique issues accompanying military suicide loss, potential benefits of postvention peer-based support, clinical considerations, and future directions.
Pathfinders is a 10-session program developed in a community setting to creatively address the diverse needs of bereaved children and families, prevent complications of grief and trauma, and promote healthy adaptation. It is an accessible, grief-focused and trauma-informed family systems model that is theory-driven, research-informed, and grounded in practice-based evidence. Pathfinders incorporates principles central to narrative approaches, with a focus on restorative processes for helping children and families stay on track developmentally. This article outlines the structure, process, and content of Pathfinders, including examples of creative interventions used within the program.
The purpose of this qualitative study was to explore the characteristics of posttraumatic growth arising from losing an immediate family member to suicide in Korea. We used interpretative phenomenological analysis for data collection and analysis and conducted in-depth interviews with 11 participants in Korea to evaluate the positive changes subsequent to the suicide. Participants revealed positive outcomes in response to losing an immediate family member to suicide after suffering the “most unimaginable pain” including (a) “Now I know what the most important thing in life is,” (b) “Warm and intimate relationships matter,” and (c) “Survivors of suicide’s search for meaning.” The implications of these findings and avenues for future research are discussed.
Les services de réanimation sont pourvoyeurs de nombreuses sources de détresse morale et émotionnelle. La mort y est omniprésente, et son accompagnement, bien encadré par les lois, permet au patient de partir avec dignité, et entouré de ses proches. L'accompagnement des familles est un élément de satisfaction et de diminution de l'incidence des complications psychologiques. Pour les soignants il reste encore du travail, notamment dans la prévention du burn-out.
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.
The purpose of this review was to evaluate end-of-life care (EOLC) in the intensive care unit (ICU) from the perspective of family members. Sandelowski's segregated approach from Joanna Briggs Institute (JBI) Mixed-Methods Systematic Reviews guided this review. A search was conducted in PubMed, CINAHL, PsycINFO, EMBASE, and ProQuest databases and identified 50 papers (33 quantitative, 15 qualitative, and 2 mixed-methodology studies). Five synthesized themes (distressing emotions, shared decision-making, proactive communication, personalized end-of- life care, and valuing of nursing care) were identified. For quantitative results, study methodologies and interventions were heterogeneous and did not always improve family members' perceived quality of care and family members' psychological distress. Configuration of qualitative and quantitative data revealed ICU end-of-life interventions were ineffective because they were not guided by family members' reported needs and perceptions. To fulfill the family members' needs for the patients' EOLC in the ICU, researchers should develop a theory to explicitly explain how the family members experience ICU EOLC and implement a theory-based intervention to improve family psychological outcomes.
Palliative care may be an opportunity to discuss cancer family history and familial cancer risks with patients' relatives. It may also represent the last opportunity to collect, from dying patients, clinical data and biospecimens that will inform cancer risk assessment and prevention in their surviving relatives. This study aims to explore the perspectives of cancer patients' relatives about cancer heritability, addressing cancer family history, and performing genetic testing in palliative care settings. Thirteen first-degree relatives of cancer patients who died in palliative care participated in the study. Two focus groups were conducted and transcribed verbatim. Two independent coders conducted a thematic content analysis. The themes included: (1) Knowledge of cancer heritability; (2) Experiences and expectations regarding cancer family history discussions, and (3) Views on genetic testing in palliative care patients and DNA biobanking. Participants seemed aware that cancer family history is a potential risk factor for developing the disease. They considered the palliative care period an inappropriate moment to discuss cancer heritability. They also did not consider palliative care providers as appropriate resources to consult for such matters as they are not specialized in this field. Participants welcomed DNA biobanking and genetic testing conducted at the palliative care patients' request. Cancer occurrence within families raises concerns among relatives about cancer heritability, but the palliative care period is not considered the most appropriate moment to address this issue. However, discussions about the risk to cancer patients' relatives might need to be considered on a case-by-case basis.
OBJECTIVES: For patients' entire families, it can be challenging to live with cancer during the palliative stage. However, a sense of coherence buffers stress and could help health professionals identify families that require support. Therefore, the short version of the Family Sense of Coherence Scale (FSOC-S) was translated, culturally adapted, and validated in a Swedish sample.
METHODS: Translation and cross-cultural adaptation of the FSOC-S into Swedish was conducted in accordance with the World Health Organization's Process for Translation and Adaptation of Research Instruments guidelines. Participants were recruited from two oncology clinics and two palliative centers in Sweden.
RESULTS: Content validity was supported by experts (n = 7), persons with cancer (n = 179), and family members (n = 165). Homogeneity among items was satisfactory for persons with cancer and family members (item-total correlations were 0.45 0.70 and 0.55 0.72, respectively) as well as internal consistency (ordinal alpha = 0.91 and 0.91, respectively). Factor analyses supported unidimensionality. FSOC-S correlated (rs > 0.3) with hope, anxiety, and symptoms of depression, which supported convergent validity. The test-retest reliability for items ranged between fair and good (kw = 0.37 0.61).
SIGNIFICANCE OF RESULTS: The FSOC-S has satisfactory measurement properties to assess family sense of coherence in persons with cancer and their family members. FSOC-S could be used to identify family members who experience low levels of perceived family sense of coherence which provides health care professionals with insight into families' needs and ability to live with cancer in the palliative stage.
OBJECTIVES: The experience of caregiving may affect carers' well-being into bereavement. We explored associations between mental well-being and previous experience of bereavement of, and caring for, someone close at the end-of-life.
METHODS: An end-of-life set of questions was included in population-based household survey administered to adults (age 16 years and above). We used univariable regression to explore the cross-sectional relationship between our primary outcome (Warwick-Edinburgh Mental Well-being Scale (WEMWBS)) and possible explanatory variables: sociodemographic; death and bereavement including ability to continue with their life; disease and carer characteristics; service use and caregiving experience.
RESULTS: The analysis dataset included 7606 of whom 5849 (77%) were not bereaved, 1174 (15%) were bereaved but provided no care and 583 (8%) were bereaved carers. WEMWBS was lower in the oldest age class (85 years and above) in both bereaved groups compared with not bereaved (p<0.001). The worst WEMWBS scores were seen in the 'bereaved but no care' group who had bad/very bad health self-assessed general health (39.8 (10.1)) vs 41.6 (9.5)) in those not bereaved and 46.4 (10.7) in bereaved carers. Among the bereaved groups, those who would not be willing to care again had lower WEMWBS scores than those who would (48.3 (8.3) vs 51.4 (8.4), p=0.024).
CONCLUSION: Mental well-being in bereavement was worse in people with self-reported poor/very poor general health and those with a worse caregiving experience. Although causality cannot be assumed, interventions to help people with worse mental and physical health to care, so that their experience is as positive as possible, should be explored prospectively.
PURPOSE: Patients make treatment decisions based not only on what they want, but what they think their families want. Discordance in such perceived preferences may therefore pose challenges for advance care planning. This study examines discordance in preference for life-extending care versus comfort-focused care and its association with do-not-resuscitate (DNR) order placement.
METHODS: One hundred eighty-nine patients with advanced cancers refractory to at least one chemotherapy regimen were enrolled in a multisite observational study. In structured interviews, patients reported their preference for treatment maximizing either life extension or comfort; patients also indicated their perception of their families' preference. DNR placement was reported by patients and verified using medical records.
RESULTS: Approximately 23% of patients (n = 43) perceived discordance between their preference and their families’ preference. Patients who perceived discordance were less likely to have completed a DNR compared with those who perceived concordance, even after controlling for relevant confounds (odds ratio = .35; P = .02). Subgroups of discordance and concordance showed varying DNR placement rates ( 2, 19.95; P < .001). DNR placement rate was lowest among discordant subgroups, where there was either a personal (26.7%; four of 15) or family preference for comfort care (28.6%; eight of 28), followed by patients who perceived concordance for wanting life-extending care (34.5%; 29 of 84) and by patients who perceived concordance in wanting comfort-focused care (66.1%; 41 of 62).
CONCLUSION: Many patients may perceive discordance between personal and family treatment preferences, posing impediments to advance care planning. Such patients may benefit from additional decision support.
BACKGROUND AND OBJECTIVES: Little is known about the quality of end-of-life care for patients with advanced CKD. We describe the relationship between patterns of end-of-life care and dialysis treatment with family-reported quality of end-of-life care in this population.
DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We designed a retrospective observational study among a national cohort of 9993 veterans with advanced CKD who died in Department of Veterans Affairs facilities between 2009 and 2015. We used logistic regression to evaluate associations between patterns of end-of-life care and receipt of dialysis (no dialysis, acute dialysis, maintenance dialysis) with family-reported quality of end-of-life care.
RESULTS: Overall, 52% of cohort members spent = 2 weeks in the hospital in the last 90 days of life, 34% received an intensive procedure, and 47% were admitted to the intensive care unit, in the last 30 days, 31% died in the intensive care unit, 38% received a palliative care consultation in the last 90 days, and 36% were receiving hospice services at the time of death. Most (55%) did not receive dialysis, 12% received acute dialysis, and 34% received maintenance dialysis. Patients treated with acute or maintenance dialysis had more intensive patterns of end-of-life care than those not treated with dialysis. After adjustment for patient and facility characteristics, receipt of maintenance (but not acute) dialysis and more intensive patterns of end-of-life care were associated with lower overall family ratings of end-of-life care, whereas receipt of palliative care and hospice services were associated with higher overall ratings. The association between maintenance dialysis and overall quality of care was attenuated after additional adjustment for end-of-life treatment patterns.
CONCLUSIONS: Among patients with advanced CKD, care focused on life extension rather than comfort was associated with lower family ratings of end-of-life care regardless of whether patients had received dialysis.
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.