Proposer de l'art-thérapie en soins palliatifs, c'est amener le malade à vivre une aventure créative qui le place dans un autre rapport à la vie. Cette "aventure" permet de changer son rapport au temps qui reste, d'un temps subi vers un temps choisi. On observe une modification du rapport à soi, en passant de la personne malade vers la personne en création. Enfin, une transformation du rapport aux soignants et aux proches peut s'esquisser.
L'épreuve de la maladie grave transforme la dynamique du couple. Les professionnels témoignent des ressources et des difficultés des couples à maintenir un espace intime et sécurisant. Il est important pour les accompagnants de réfléchir à leurs représentations du couple et à leur positionnement, à veiller à ne pas violenter davantage ces unions déjà fortement éprouvées.
Scenario: Mrs. Murphy, a 78-year-old woman has a history of heartdisease. In the last 2 years, she has been hospitalized 3 times for a series of small heart attacks. Last night, she was rushed to the intensive care unit with a massive heart attack, disoriented, weak and confused. She had no advance directives (ADs) in her possession and there were none in her medical record. The admitting intensivist, worried that her heart may stop due to the extensive damage over the years, wrote an order for full resuscitation.
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BACKGROUND: Paediatric palliative care (PPC) is an active, total approach to the holistic care of the child and family. Close, long-lasting relationships between healthcare professionals and parents in paediatric palliative care enhance quality, provide emotional support and can influence how parents manage their role in the face of uncertainty.
AIM: To present a narrative literature review of long-term relationships between children's nurses and parents in PPC settings.
METHODS: Six databases (CINAHL, PsycINFO, ASSIA, Scopus, Medline and BNI) were searched, identifying 35 articles. A grey literature search produced seven additional relevant items.
FINDINGS: Four themes were identified: bonds; attachments and trust; sharing the journey; going the extra mile; and boundaries and integrity. All themes revealed an element of tension between closeness and professionalism.
CONCLUSION: Gaining a greater understanding of how closeness and professionalism are successfully managed by children's palliative care nurses could positively influence pre- and post-registration nurse education.
Context: Families are known to be involved in assisted dying and their involvement can be influenced by many factors.
Objectives: To explore how Swiss families interact with health care professionals and right-to-die associations regarding assisted suicide and their choices around disclosure.
Methods: A secondary data analysis on a cross-sectional qualitative interview study conducted in the Italian- and French-speaking parts of Switzerland was conducted. Interviews with 28 bereaved family members were analyzed using framework analysis.
Results: Two main themes were identified: (1) Interactions with physicians and right-to-die associations. (2) Choices about disclosing their experiences. In general, families believed that assisted suicide is a private matter, to be pursued mainly outside the medical field and involved physicians only when necessary. Families appeared to deliberately limit interaction with physicians and to be more comfortable interacting with the right-to-die associations. Some participants presumed a clear choice between assisted suicide or palliative care. Disclosing to others the decision, and preparation of assisted suicide emerged to be an important emotional burden for families. Some family members preferred to restrict disclosure before and after assisted suicide, by sometimes not informing other family members until the final days.
Conclusions : In Switzerland, there is limited interaction between families and health care professionals concerning assisted suicide decisions, whereas families reported more open interactions with right-to-die associations. It is recommended that the needs of families should be reflected in health policies, taking into consideration the different contexts where assisted dying is permitted.
INTRODUCTION: Family caregiver-provider communication is essential to making an effective hospice care transition for patients. Despite the importance of this topic, there is little information about how caregivers in rural US-Mexico border regions navigate hospice care transition and their needs. This study explores the family caregivers' experience relating to their end-of-life (EOL) communication and needs for hospice care transition.
METHODS: In-depth interviews using qualitative methods were conducted with 28 informal caregivers of patients who are enrolled in home hospice care in a rural US-Mexico border region. Thematic analysis was applied to analyze the data.
RESULTS: Qualitative themes that emerged include (1) lack of/insufficient EOL communication and (2) informational needs, including (a) signs of symptom changes, (b) EOL treatment options and goals of care, and (c) hospice care and its benefits. Limited caregiver-provider EOL communication was observed, in which the majority of the caregivers (n = 22, 78.6%) were informed of the patient's terminal condition, but only half (n = 15, 53.6%) had a discussion with the providers about hospice care.
CONCLUSION: Timely EOL communication between caregivers and the providers is key to the patient's optimal transition to hospice care. Providers need to be aware of the caregivers' informational needs relating to patient symptoms and health condition as well as hospice care. It is important to be aware of the impact of cultural values on hospice care placement. A clear explanation about the purpose and functions of hospice care and its benefit can better guide the family caregivers in making hospice care decisions.
Ce livre regroupe l'ensemble des informations nécessaires à la pratique des soins palliatifs pédiatriques : cadre réglementaire, concepts théoriques et projet de soin. Ayant pour fil conducteur les questions auxquelles le praticien et les équipes sont confrontés au quotidien, l'ouvrage prend en compte les interactions pluridisciplinaires.
Les émotions, un concept vaste, complexe, et surtout affectant tout être humain...
Nous avons décidé par ce mémoire de travailler sur les émotions des soignants dans le cadre des soins palliatifs car ce sujet nous semble délicat, subjectif mais omniprésent dans notre profession.
Nous avons tenté de définir ce concept, d'amener une réflexion sur ce sujet et sur les difficultés potentielles rencontrées par les soignants, ainsi que l'impact sur la relation de soin.
Nous avons défini également le concept de l'intelligence émotionnelle en réfléchissant sur le fait, que cette dernière pourrait être un atout de soin.
Puis, nous avons tenté de démontrer que l'dentification de ses propres émotions par les soignants permettait une présence authentique auprès de la personne en fin de vie, et que, la présence authentique du soignant permettait à la personne soignée d'exprimer son ressenti...
The aim of this article is to explore the concept of medical futility and the withdrawal of care for children in intensive care units. There have been several recent cases where medical staff have considered that there was no possibility of recovery for a child, yet their clinical judgments were challenged by the parents. The private anguish of these families became public, social media heightened emotions and this was followed by political and religious intrusion. Innovations in medical treatment and technological advances raise issues for all those involved in the care of children and young people especially when decisions need to be made about end of life care. Healthcare professionals have a moral and legal obligation to determine when treatment should cease in cases where it is determined to be futile. The aim should be to work collaboratively with parents but all decisions must be made in the best interests of the child. However, medical staff and parents may have differing opinions about care decisions. In part, this may be as a result of their unique relationships with the child and different understanding of the extent to which the child is in discomfort or can endure pain.
Dans cet article, l’auteur présente les bases théoriques et techniques du dispositif de médiation transculturelle mis à la disposition des équipes de soins palliatifs. Accompagner une famille dans cette épreuve est un défi pour toutes les équipes soignantes. Ce défi peut se révéler plus complexe encore lorsque soignants et parents ne partagent pas les mêmes références culturelles. Dans des situations d’impasse thérapeutique, la prise en compte du fait culturel – considéré non plus comme un frein, mais au contraire comme un catalyseur formidablement actif – peut non seulement enrichir l’interprétation médicale, mais aussi rendre possible une réelle rencontre entre le patient et son médecin.
Families of dying children are profoundly impacted by numerous interactions with health-care providers before, during, and after their child’s death. However, there is a dearth of research on these families’ direct, qualitative experiences with health-care providers. This study presents findings from interviews with 18 family members, predominantly parents, regarding their experiences with health-care providers during a child’s terminal illness, from diagnosis to death. The importance of compassion emerged as a salient theme, manifested in myriad ways, and connected to participants’ perception of caregiver presence in multiple domains. Families were likewise negatively affected by a wide variety of situations and behaviors that represented individual or institutional abandonment or nonpresence, and thus compounded the experience of loss. Specifics and implications for practice are explored.
"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...
La relation entre les personnes soignées à domicile, leur entourage et les professionnels est ponctuée d'inconnu, d'inédit, de surprise. Nous vous soumettons quelques éléments de réflexion, en nous appuyant sur des situations concrètes, afin de décrypter "les comportements", identifier les enjeux possibles.
OBJECTIVES: To explore the expressions of gratitude (EoG) received from patients and relatives and their influence on palliative care professionals (PCPs).
METHODS: A national online survey was sent to a representative of PCPs of each service listed in the national directory of palliative care (PC) services (n=272) (ie, hospital PC support team, hospice, paediatrics, etc). The questionnaire was pilot tested with experts. It comprised three sections: the overall perspective of receiving gratitude in the service, the personal experience of its influence and sociodemographic questions. A mailing schedule was designed to enhance the response rate.
RESULTS: 186 representatives from all over Spain completed the questionnaire (68% response rate). 79% of service representatives reported that they almost always received EoG. These came mainly from families (93%). These EoG were very often put on display (84%) and shared with other health professionals (HPs) involved in care (45%). EoG evoked positive feelings in the team members. Based on their experience, respondents attributed different functions to these EoG: increased professional satisfaction (89%), a source of support in difficult times (89%), mood improvement, encouragement to continue and rewards for effort (88%). Services, where gratitude was more frequently received, were associated with PCPs who more frequently reported being proud of their work (p=0.039, Pearson's correlation test).
CONCLUSIONS: Gratitude from patients and relatives was frequent and significant to those who work in PC. HPs considered that EoG offer multiple beneficial effects and also a protective role in their practice against distress and an increase in resilience skills.
Although palliative care nurses are identified as key players in supporting couples during advanced illness, there is a lack of evidence about their knowledge and experiences with this particular role. The aim of the study was to explore palliative care nurses' attitudes, roles, and experiences in addressing relationship functioning of couples in daily practice. A qualitative study was conducted using in-depth interviews, observational research, and peer debriefing groups with palliative care nurses in Flanders, Belgium. Nurses support relationship functioning by creating a couple-positive care environment, by being present/acknowledging feelings, and by rectifying imbalances between couples. They do so in a proactive way, backed up by team support. Nurses hesitate toward explicitly unraveling and intervening in relationship problems, in favor of providing comfort or offering a strengths-based approach. The findings offer an urgent call to enhance the educational programs for palliative care nurses by integrating the theories and practice frameworks that guide relational assessment and intervention, which are being used in family nursing.
BACKGROUND: Health care professionals should prevent and relieve suffering in carers of patients with advanced cancer. Despite known positive effects of systematic carer support, carers still do not receive sufficient support. Carers have reported to be less satisfied with coordination of care and involvement of the family in treatment and care decisions than patients. In a rural district of Mid-Norway, cancer palliative care services across specialist and community care were developed. Participants' experiences and opinions were investigated as part of this development process.
METHODS: The aim of this qualitative study was to explore and describe health care professionals' experiences with carer support from their own perspective. Data were collected in focus groups. Purposeful sampling guided the inclusion. Six groups were formed with 21 professionals. The discussions were audio-recorded, transcribed, and analyzed using systematic text condensation.
RESULTS: In the analyzis of the focus group discussions, ten categories emerged from the exploration of health care professionals' carer support, assessment of needs, and factors hampering carer support: 1) dependent on profession, role, and context, 2) personal relationship, 3) personal skills and competence, 4) adjusted to the stage of the disease, 5) informal assessment of carers' needs, 6) lack of education 7) lack of systems for carer consultations, 8) lack of systems for documentation, 9) lack of systems for involving GPs, and 10) lack of systematic spiritual care.
CONCLUSIONS: Health care professionals built a personal relationship with the carers as early as possible, to facilitate carer support throughout the disease trajectory. Systematic carer support was hampered by lack of education and system insufficiencies. Organizational changes were needed, including 1) education in carer support, communication, and spiritual care, 2) use of standardized care pathways, including systematic carer needs assessment, 3) systematic involvement of general practitioners, and 4) a system for documentation of clinical work with carers.
OBJECTIVES: To evaluate: (1) to what extent family carers of people supported by specialised palliative care services felt they had been provided with information, support and aftercare and (2) how this varied by type of palliative care service, length of enrolment and characteristics of deceased.
METHODS: A cross-sectional postal survey was conducted using a structured questionnaire with nine items on information, support and aftercare provided by specialised palliative care services to family carers. Flemish family carers of people who had made use of specialised palliative care services at home or in hospital were contacted.
RESULTS: Of all primary family carers (response rate of 53.5% resulting in n=1504), 77.7% indicated they were asked frequently by professionals how they were feeling. Around 75% indicated they had been informed about specific end-of-life topics and around 90% felt sufficiently supported before and immediately after the death. Family carers of people who had died in a palliative care unit, compared with other types of specialised palliative care services, indicated having received more information, support and aftercare.
CONCLUSIONS: Family carers evaluate the professional assistance provided more positively when death occurred in a palliative care unit. Policy changes might be needed to reach the same level of care across all specialised palliative care services.
Cet ouvrage présente le rôle d'accompagnant de malades en fin de vie. Il explore tous les aspects de la relation complexe et bienveillante qui s'instaure entre le malade et son entourage médical et familial.
Background: This study examines communication profiles and associated attitudes toward health care professionals in interviews with family caregivers of hospitalized patients with confirmed multidrug-resistant organisms (e.g., methicillin-resistant Staphylococcus aureus or multiresistant gram-negative bacteria) diagnosis at the end of life.
Objectives: This study aims to replicate and complement findings from a previous investigation using a different methodological framework. The benefits of linguistic research in medical contexts are highlighted.
Design: Fifty interviews with family caregivers were analyzed linguistically. The considered parameters include lexical choices such as evaluative wording, metaphors, and specialized terminology, as well as higher level categories-turn-taking, sentence-length, and personal deixis. These characteristics serve to assess attitudes toward medical staff, hygiene measures, knowledge, and its transfer and general emotional states.
Conclusions: Linguistic expertise adds benefits to the classical analysis of language data as used in social sciences. Family caregivers' linguistic and attitudinal profiles vary depending on whether their involvement in the overall situation is active or passive, and whether their relationship toward staff and hospital is cooperative or confrontative. Depending on the four possible combinations of those characteristics, different recommendations for communication strategies on the staff's side can be given. In all cases, clear and patient/family centeredness are considered beneficial.