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.
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.
BACKGROUND: Effective communication between healthcare professionals and relatives of patients approaching the end-of-life is vital to ensure patients have a 'good death'. To improve communication, it is important to first identify how this is currently being accomplished.
AIM: To review qualitative evidence concerning characteristics of communication about prognosis and end-of-life care between healthcare professionals and relatives of patients approaching the end-of-life.
DESIGN: Qualitative systematic review (PROSPERO registration CRD42017065560) using thematic synthesis. Peer-reviewed, English language articles exploring the content of conversations and how participants communicated were included. No date restrictions were applied. Quality of included studies was appraised using the Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research.
DATA SOURCES: An electronic database search of CINAHL, MEDLINE, PsycINFO and EMBASE was performed.
RESULTS: Thirty-one papers were included. Seven themes were identified: highlighting deterioration; involvement in decision-making, post-decision interactional work, tailoring, honesty and clarity, specific techniques for information delivery and roles of different healthcare professionals. Varied levels of family involvement in decision-making were reported. Healthcare professionals used strategies to aid understanding and collaborative decision-making, such as highlighting the patient's deterioration, referring to patient wishes and tailoring information delivery. Doctors were regarded as responsible for discussing prognosis and decision-making, and nurses for providing individualized care.
CONCLUSION: Findings suggest training could provide healthcare professionals with these strategies to improve communication. Interventions such as question prompt lists could help relatives overcome barriers to involvement in decision-making. Further research is needed to understand communication with relatives in different settings and with different healthcare professionals.
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.
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.
Although most individuals prefer to die at home, approximately 60% of Americans die in the hospital setting. Nurses are inadequately prepared to provide end-of-life (EOL) care because of cure-focused education. Friends and family of dying patients report poor quality of death largely as a result of inadequate communication from health care professionals about the dying process. The purpose of this project was to improve nursing knowledge and comfort related to EOL care through use of the CARES tool and to improve the EOL experience of families of dying patients in the hospital setting through use of Final Journey. These acronym organized tools were developed based upon the common symptom management needs of the dying including Comfort, Airway, Restlessness and delirium, Emotional and spiritual support, and Self-care. The CARES tool for nurses improved nursing knowledge and comfort related to EOL care and common symptom management needs of the dying and also enhanced nurses' confidence in communicating about the dying process with friends and family. Final Journey, the friends and family version of the CARES tool, reinforced EOL information for friends and family, helped nurses answer difficult questions, and promoted and enhanced communication between health care professionals and friends and family of the dying.
Background: Providers often use birth plans to document parents' wishes for their fetus with a life-limiting condition.
Objective: The objective of the study was to (1) discover important components of a birth plan for parents and providers who carry them out, and (2) understand the experience of parents and providers with birth plans.
Methods: The study design involves mixed-methods, descriptive, exploratory survey. This involves parents (n = 20) of a pregnancy complicated by a life-limiting diagnosis and providers who care for them (n = 116). The approach involves descriptive and univariate analyses for quantitative data and thematic analysis for qualitative data.
Results: Consistent components for families and physicians were diagnosis and medical management of the infant. Families gave greater emphasis on memory-making preferences. Parents feel birth plans give them a sense of control. Themes emerged from parents' experience of creating a birth plan are as follows: sense of control, therapeutic, memory making, effective communication, feeling prepared, and unexpected events. Most physicians feel comfortable discussing goals of care with families but report insufficient time. The importance of components of birth plans and perception of the parents' understanding of the prognosis varied by specialty.
Discussion: Birth plans are beneficial and provide a greater sense of control for parents. Most physicians feel comfortable utilizing them. More than one-third of the physicians do not feel that they have time to complete a birth plan with parents. Communication between physicians and families about limitations of the plan and the potential trajectories could be improved. Communication between maternal and neonatal care providers regarding parent expectations and understanding could also be improved.
Les personnes en état végétatif permanent posent des questions éthiques, sociétales notamment sur la poursuite ou non de la nutrition et de l'hydratation artificielles. Dans cet article, l'auteur explore les processus décisionnels à l'oeuvre dans ces situations.
L’approche des soins palliatifs centrée sur la personne malade oblige à établir des partenariats entre cette dernière, les soignants, la famille, les professionnels sociaux et les bénévoles d’accompagnement. La communication qui se décline dans le dialogue, l’écoute, l’instauration d’une relation de confiance, l’observation des comportements et du langage corporel est essentielle face à l’incertitude et à un questionnement existentiel du malade et de ses proches. À domicile, comme en témoigne cette infirmière expérimentée, ces questionnements convoquent les soignants dans leur professionnalisme et leur humanité.
Objectifs: L’implication des proches dans les soins palliatifs est considérée comme un élément essentiel de la qualité de la prise en charge du patient. Leur intégration est tributaire de leurs attentes vis à vis de l’unité de soins palliatifs et de leurs représentations des soins palliatifs. Dans un contexte où la population se dit peu informée, cette étude pilote visait à interroger la dynamique des attentes et des représentations des proches en unité de soins palliatifs dans le but d’améliorer la qualité de vie des patients et de leur famille.
Matériel et méthodes : L’approche compréhensive par une méthodologie qualitative a été privilégiée. Des entretiens semi-directifs auprès des proches ont été menés au sein d’une unité de soins palliatifs, à l’entrée puis quelques jours après.
Résultats : Huit proches de patients en soins palliatifs ont été inclus dans l’étude et deux d’entre eux ont pu participer au second entretien. Les proches témoignaient à leur entrée dans l’unité une attente commune, celle d’une prise en charge différente de celle vécue pendant les précédentes hospitalisations. Le besoin de sécurité apparaît en lien avec la crainte de l’abandon du patient et de ses proches et révèle un manque de connaissance sur le rôle de l’unité de soins palliatifs. La qualité des échanges instaurés d’emblée, grâce au premier entretien d’accueil avec le médecin, semble initier une réponse appropriée.
Conclusion: La dimension relationnelle apparaît comme un levier pour soutenir les proches dans leur besoin de sécurisation et d’informations. Une étude à plus grande échelle permettrait de comprendre davantage et plus précisément comment les proches traitent une période qui demeure insupportable et de proposer aux équipes soignantes des éléments d’une réponse mieux adaptée aux besoins et aux attentes.
Being diagnosed with and having a life-limiting illness is a stressful experience which is compounded when the patient has dependent children. An important aspect of the patient's psychosocial care should include recognition that their children are also likely to experience severe stress because of the illness. However, children's needs are often overlooked during the illness. These needs include information about the illness. Health care professionals have a significant role in supporting patients to communicate with their children. This study aims to increase our understanding of children's experiences when a parent has a life-limiting illness by exploring bereaved children's experiences of the support they received when their parent had a life-limiting illness, and professionals' perspectives of the support offered to children. 7 children (aged between 9 and 24), and 16 health care professionals were interviewed about communication during parental illness. Children report needing open, clear and age appropriate conversations with parents and health care professionals to help them begin to obtain some meaning from the situation. The importance of communication is discussed, with particular reference to the role health care professionals have in supporting these conversations.