L'entrée en institution d'un sujet exige de ce dernier ainsi que sa famille et ses proches d'accorder un peu de confiance pour se laisser accompagner dans les soins par les soignants. Accorder sa confiance ne se fait pas sans heurts, maladresses, malentendus, conflits qui donnent cependant aux soignants et aux résidents la possibilité de trouver des points d'aménagements, des stratégies à mettre en oeuvre où chacun trouverait sa place. Passer par le conflit permet de dialectiser et d'envisager une issue, une résolution. Cependant nous sommes au coeur d'une époque où le conflit n'est parfois qu'apparence, un bruit sourd, réduit à des positions univoques, des certitudes exprimées qui empêchent la dialectique, même inconfortable, de s'installer.
Nous ne sommes pas épargnés par la rencontre de ce phénomène dans nos EHPAD et au travers de ces deux exemples cliniques, il s'agit de rendre compte du barrage fait au conflit.
Background: We aimed to explore the shared decision-making context at the limit of viability (weeks 22-25 of gestation) through analyzing neonatologist's communication strategies with parents and their possible impact on survival and neurodevelopmental impairment (NDI) outcomes.
Methods: A mixed methods approach was applied where a systematic literature search and in-depth semi-structured interviews with five heads of neonatology departments and one clinical ethicist from the Austrian context were integrated into a literature review. The aim was to identify decision practice models and the choice context specific to Austria.
Results: Professional biases, parental understanding, and the process of information giving were identified as aspects possibly influencing survival and NDI outcomes. Institutions create self-fulfilling prophecies by recommending intensive/palliative care based upon their institutional statistics, yet those vary considerably among high-income countries. Labelling an extremely preterm (EP) infant by the gestational week was shown to skew the estimates for survival while the process of information giving was shown to be subject to framing effect and other cognitive biases.
Conclusion: Communication strategies of choice options to parents may have an impact on the way parents decide and hence also on the outcomes of EP infants.
Backgroud: The 6S Dialogue Tool was elaborated to provide knowledge to nurses about patients' preferences in congruence with the 6S person-centered palliative care model, which includes the S-concepts of self-image, symptom relief, self-determination, social relationships, synthesis and strategies. The tool needs to be scrutinized for appropriateness.
Aims: To develop and psychometrically test the 6S Dialogue Tool.
Design: A qualitative study investigating construct validity of the 6S Dialogue Tool.
Methods: Forty-six patients in palliative care services in Sweden responded to 15 questions from May 2015 to August 2016. Responses were analyzed with qualitative content analysis.
Results: Six categories, capturing the meaning of the 6S-concepts, were formulated: Maintaining everyday life; Challenges in everyday life; Maintaining control; Maintaining selected relationships; Appraisal of life; and Appraisal of the future.
Conclusion: The responses to the 6S Dialogue Tool questions reflect the intent of the 6S-concepts. Nurses should integrate the 6S-concepts and the questions in their approach to facilitate to co-create meaningful palliative care in dialogue with the patient.
Impact: Patients' preferences must be explored to co-create palliative care in accordance with their own needs and beliefs. The 6S Dialogue Tool questions are suitable for obtaining patients' preferences and could be used as an approach in palliative care. Patients, families and nurses will have the potential to co-create palliative care and to improve possibilities for patients to have an appropriate death.
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.
The authors conducted an integrative review to determine evidence-based and most efficient strategies for improving the palliative care of patients at the end-of-life stage. Thirteen articles that met the overall inclusion criteria were evaluated. The Preferred Reporting Items for Systematic Reviews and Meta-Analyses flowchart approach was used for the screening process. The Critical Appraisal Skill Program and the Mixed-Methods Appraisal Tool were also used for the critical appraisal of the data. Full reports of relevant articles were retrieved, and data were extracted by 2 reviewers independently. The quality of studies was appraised in reference to Consolidated Criteria for Reporting Qualitative Research guidelines. Key aspects included communication and coordination among the team members-patient-centered approach. The major theme was the application of a holistic approach to palliative care consisting of providing comfort to the dying patient. It was identified that relationships, which were identified as spiritual needs, are also crucial to the improvement of palliative care. Improving nursing education in this area, undertaking appropriate curriculum development, and providing coordination among training programs will help knowledgeable health care providers deliver compassionate, affordable, sustainable, and high-quality care to a growing population of aging patients facing the end of their lives.
Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. Due to technical and medical improvements, children are living longer and are increasingly cared for at home. To align healthcare professionals’ support with the needs of parents, a clear understanding of prominent experiences and main coping strategies of parents caring for a child in need of palliative care is needed. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with malignant or non-malignant diseases receiving palliative care. Prominent reported parental experiences were daily anxiety of child loss, confrontation with loss and related grief, ambiguity towards uncertainty, preservation of a meaningful relationship with their child, tension regarding end-of-life decisions and engagement with professionals. Four closely related coping strategies were identified: suppressing emotions by keeping the loss of their child at bay, seeking support, taking control to arrange optimal childcare and adapting to and accepting the ongoing change(s).
Conclusion: Parents need healthcare professionals who understand and carefully handle their worries, losses, parent-child relationship and coping strategies.
BACKGROUND: Nurses have an important role in maintaining a patient's nutrition near the end of life.
AIMS: To define nursing nutrition strategies with the person near the end of life and their families; systematise the elements to be considered in artificial nutrition decision-making and evaluate the nursing interventions' influence on therapeutic obstinacy risk.
METHODS: A sample of 11 articles were selected and the results considered strategies to promote oral feeding before artificial nutrition; the follow-up of the health-disease process by nurses and described the nurse's role as a privileged patient advocate in the defence of the ethical principles of decision-making. These principles consider symptomatology, prognosis, psychology and the emotional significance of nutrition.
CONCLUSION: Nurses are qualified professionals with a critical role in the patient's care due to the proximity they have with the patient; the evidence seems to show a relationship between nursing interventions and the reduction of the risk of therapeutic obstinacy; however, there are no studies in this specific area.
Effective communication between clinicians, patients, and families at end of life is associated with better clinical outcomes. A large body of literature describes the key skills needed for effective communication. We believe that clinicians could also benefit from communication skills more commonly associated with business or law negotiations. We will demonstrate via analogy (i.e. buying a house) how four key business/law negotiation techniques – 1. Determine your Reservation and Aspiration Value; 2. Separate People from their Positions; 3. Separate Positions from Interests; and 4. Logrolling of Interests – can be applied to a difficult family meeting in a home hospice patient.
Coping affects somatic and psychological outcomes. This article explores narratives in a book, Kamikaze Diaries: Reflections of Japanese Student Soldiers, which report on the ways of coping used by each kamikaze participant before and during military service. The purpose of this study is to observe the possibility of a trend in coping strategies and consider how these trends inform us about other populations facing imminent death. This study analyzed data and extracted meaning from the narratives in the book (thematic content analysis). Within the thematic content analysis, the Ways of Coping scale was used, which describes the coping strategies people use when facing problems. The most frequently used coping strategies before they entered the military were "Accept Responsibility," "Endurance/Obedience/Effort," and "Self-Control," while once in the military, they were "Accept Responsibility" and "Endurance/Obedience/Effort." All the coping strategies used by kamikaze pilots appeared to focus on the passive self, which may be the type of coping in other populations facing death.
Nonmotor symptoms likely affect overall quality of life in Parkinson's disease (PD) as much as motor symptoms. Fast Fact #361 discussed the natural trajectory of PD. This Fast Fact will focus on management stratégies of common nonmotor symptoms in PD patients.
[Début de l'article]
Kidney palliative care is a growing discipline within nephrology. Kidney palliative care specifically addresses the stress and burden of advanced kidney disease through the provision of expert symptom management, caregiver support, and advance care planning with the goal of optimizing quality of life for patients and families. The integration of palliative care principles is necessary to address the multidimensional impact of advanced kidney disease on patients. In particular, patients with advanced kidney disease have a high symptom burden and experience greater intensity of care at the end of life compared with other chronic serious illnesses. Currently, access to kidney palliative care is lacking, whether delivered by trained kidney care professionals or by palliative care clinicians. These barriers include a gap in training and workforce, policies limiting access to hospice and outpatient palliative care services for patients with ESKD, resistance to integrating palliative care within the nephrology community, and the misconception that palliative care is synonymous with end-of-life care. As such, addressing kidney palliative care needs on a population level will require not only access to specialized kidney palliative care initiatives, but also equipping kidney care professionals with the skills to address basic kidney palliative care needs. This article will address the role of kidney palliative care for patients with advanced kidney disease, describe models of care including primary and specialty kidney palliative care, and outline strategies to improve kidney palliative care on a provider and system level.
BACKGROUND: There is little scholarship on culturally safe approaches to palliative care, especially for rural Indigenous clients. Thus, it is important to articulate how cultural safety can be enacted to support rural Indigenous Peoples and communities at end of life. We sought to identify strategies described in existing literature that have potential to deepen our understanding of culturally safe approaches to palliative care within rural and small-town settings in Canada.
METHODS: We searched for peer-reviewed and grey literature about Indigenous palliative care in rural and small-town settings in Canada, United States, New Zealand, and Australia. Medline, CINAHL, and Embase were searched. We thematically analyzed 22 resulting articles to address our interest in culturally safe approaches to palliative care in rural/small-town and on-reserve contexts.
RESULTS: The following themes were extracted from the literature: symbolic or small gestures; anticipating barriers to care; defer to client, family and community; shared decision-Making; active patient and family involvement; respectful, clear, and culturally appropriate communication; community ownership of services; empower cultural identity, knowledge, and traditions; and, policy.
DISCUSSION: Culturally competent practices can improve Indigenous palliative care services; however, they do not result in decolonized care. Strategies include: symbolic or small gestures; anticipating barriers to access; deferring to the client, family, and community members; and, collective decision making and family involvement. Culturally safe approaches contribute to institutional or organizational change and decolonized care. Strategies include: involvement of patient and family in service planning; reflection about individual and systemic racism; community ownership of services and; recognizing distinct Worldviews that shape care.
CONCLUSIONS: Culturally safe strategies invite decolonization of care through awareness of colonialism, racism, and discrimination. They invite commitment to building partnerships, power sharing, and decision-making in the delivery of care. Culturally competent activities may catalyze the adoption of a cultural safety framework; however, mislabeling of cultural competency as cultural safety may contribute to organizational inaction and a watering down of the spirit of cultural safety.
End-of-life caregiving is a highly stressful experience often fraught with conflict and tension. However, little is known about the ways family conflict manifests for informal caregivers of home hospice patients (IHCs). Framed by relational dialectics theory, the purpose of this study was to provide nurses and other health care professionals with an empirical understanding of how IHCs experience family conflict and tensions associated with caregiving. A second aim was to determine what strategies IHCs use to manage these family conflicts. Data used in this qualitative secondary analysis were originally collected as part of a randomized clinical trial of an IHC support intervention. Based on thematic analysis of data from 25 IHCs who reported family conflict, a conceptual model of caregiver resilience was developed from the themes and categories that emerged during the coding stage. Autonomy was identified as a central tension. IHCs used several strategies to address family conflict including communication, formal support, and emotional self-care.
Dyspnea in cancer patients can lead to significant deleterious effects. There are multiple conditions that can cause dyspnea. It is important to determine which of these causes are potentially reversible and treatable, so that they can be promptly addressed. Both pharmacologic and nonpharmacologic approaches should be used to treat this difficult condition. As patients advance in their illness, palliative treatments can be considered, such as low-dose opioids, oxygen therapy, and treatments directed at anxiety relief. Physicians should also discuss goals of care with their patients.
Advance directives emerged in the 1960s with the goal of empowering people to exert control over their future medical decisions. However, it has become apparent, over recent years, that advance directives do not sufficiently capture the temporal and relational aspects of planning treatment and care.
Advance care planning (ACP) has been suggested as a way to emphasise communication between the patient, their surrogate decision maker and healthcare professional(s) in order to anticipate healthcare decisions in the event that the patient loses decision-making capacity, either temporarily or permanently. In more and more countries, ACP has become common practice in planning the treatment of terminal diseases such as cancer or amyotrophic lateral sclerosis. However, even though neurodegenerative dementia results in the gradual loss of decision-making capacity, ACP is still extremely rare. There are several reasons for this. Firstly, some people have difficulties talking about illness and death, especially when this involves anticipation. Secondly, lay people and professionals alike struggle to consider Alzheimerâ€™s disease and similar forms of dementia as terminal diseases. Thirdly, although patient decision-making capacity gradually decreases with the progression of dementia, the patient retains the ability to communicate and interact with surrogates and professionals until the later stages of the disease. Therefore, surrogates and professionals may feel unsure or even ambivalent when enforcing advance directives, in particular when those decisions may shorten a patientâ€™s life expectancy. Finally, to be effective, existing ACP interventions should be adapted to patientâ€™s cognitive impairments and lay out dementia-specific scenarios.
Current WHO estimates indicate that by 2050 one out of four people will potentially have to take care of a relative with cognitive and communication impairments for several years. In Switzerland, the Federal Office of Public Health and the regional states have established national strategies on dementia and palliative care. These strategies emphasise the need for ACP as a means to prepare patients and their relatives for future decisions, as soon as someone is diagnosed with dementia. This moment is thus especially conducive to develop appropriate processes to prompt the elderly and people diagnosed with dementia to engage in ACP. Therefore, the aim of the present paper is to identify the benefits and challenges of ACP in dementia care, outline strategies to design appropriate procedures and tools, and provide professionals, patients and their relatives with opportunities to engage in ACP.
In their everyday work, health professionals find themselves in situations that they perceive to be abusive to patients. Such situations can trigger feelings of shame and guilt, making efforts to address the problem among colleagues a challenge. This article analyzes how health professionals conceptualize abusive situations, and how they develop collective learning and explore preventive strategies. It is based on an interactive research collaboration with a hospice and palliative care clinic in Sweden during 2016-2017. The empirical material consists of group discussions and participant observations collected during interactive drama workshops for all clinic staff. Based on three types of challenges in the material, identified through thematic analysis, we establish the concept of navigation work to show how health professionals prevent or find ways out of challenging and potentially abusive situations. First, the navigation of care landscapes shows how staff navigate the different territories of the home and the ward, reflecting how spatial settings construct the scope of care and what professionals consider to be potentially abusive situations. Second, the negotiation of collective navigations addresses the professionals' shared efforts to protect patients through the use of physical and relational boundaries, or mediating disrupted relationships. Third, the navigation of tensions in care highlights professionals' strategies in the confined action space between coercing and neglecting patients who oppose necessary care procedures. Theoretically, the concept of navigation work draws upon work on care in practice, and sheds light on the particular kind of work care professionals do, and reflect on doing, in order to navigate the challenges of potentially abusive situations. By providing a perspective and shared vocabulary, the concept may also elicit ways in which this work can be verbalized, shared, and developed in clinical practice.
BACKGROUND: Health care is a high-risk environment for clinicians and patients. The risk of burnout increases with increased patient acuity and workload demands. The Pause is a contemplative intervention that has been deployed to foster honor and self-care.
OBJECTIVE: We aimed to reveal how clinicians and educators use The Pause and how it changes systems of thinking or practice.
METHODS: Using a modified Delphi method, we interviewed 11 participants who had used The Pause or intend on using it.
RESULTS: The Pause is being used in 4 continents and many countries. It is most widely learned about by the bedside in practice settings. Participants believe it is malleable and has a powerful systemic effect in fostering a culture of support and honor.
CONCLUSION: The Pause should continue to be taught in clinical scenarios to foster a broader humanistic ethos in health care.
The death of a child in the Paediatric Intensive Care Unit (PICU) is difficult, the loss generates feelings of sadness and pain; this study highlights the different coping strategies used by nurses to manage this situation and find the strength to provide care at the end of life.
OBJECTIVE: Explore the strategies used by nurses in the PICU in coping with death.
METHODS: Study conducted in the city of Manizales, Colombia, during the months of October, November and December. A qualitative, hermeneutical phenomenological approach was used. The method of intentional sampling for the selection of participating nurses (n=10) working in PICU, in-depth interviews were conducted for the construction of the information and the data were analyzed according to the procedures proposed by Cohen, Kahn and Steeves.
RESULTS: Nurses use coping strategies focused on emotions: they inhibit their feelings towards the patient and their family; they use communication and prayer with the patient, as well as accompaniment to alleviate the suffering of the family.
CONCLUSION: UCIP nurses develop coping strategies for end-of-life care using spiritual resources and communication with the family who require ongoing support, reflecting on death and accompanying the child in its transcendence.
Purpose: Around 170 multidisciplinary staff of the Oncology Services Group at Queensland Children's Hospital, Brisbane, care for children with oncology, hematology, and palliative care needs from throughout Queensland and northern New South Wales. A series of challenges impacted staff resilience and retention, and strategies were needed to improve staff well-being and enable them to flourish despite the inherent work stressors.
Methods: A needs analysis was conducted using themes from Discovery Interviews with 51 staff, surveys related to "The Work Stressors Scale - Pediatric Oncology" and "The Work Rewards Scale - Pediatric Oncology" completed by 59 staff, and an organizational staff survey responded to by 51 staff.
Results: The needs analysis informed the development of a customized Oncology Staff Well-being Program with a range of strategies aligned to a PERMA framework for flourishing (positive emotion, engagement, relationships, meaning, and accomplishment). Positive emotion areas included education on topics such as well-being, resilience, responding to escalating behaviors, grief and loss, and self-care. Staff attended the available mindfulness sessions, debriefing and counselors on site, developed self-care plans, and followed a well-being Facebook Group. Engagement was supported through exploring character strengths, improving communication, supporting innovation, and addressing frustrations and safety concerns. Relationships within the team were addressed through team building and social events. Meaning of the work was emphasized through sharing family updates and end of treatment celebrations. Accomplishments of staff were acknowledged in newsletters and meetings.
Conclusion: The needs analysis drove a multifaceted approach to staff well-being with the development of strategies which aligned to a framework that would empower staff to flourish at work. Implementation and evaluation are ongoing and will be reported in a subsequent paper.
Initiating end-of-life (EoL) discussions with patients is often delayed or avoided altogether by healthcare practitioners even in light of imminent death. This continues despite the availability of guidelines and conceptual frameworks on how to communicate prognoses at EoL. We surveyed healthcare practitioners to elicit their exposure to and confidence in EoL discussions and to better understand factors that enable or challenge the initiation of discussions in Australian healthcare settings. Thematic analysis identified that EoL discussions could be emotionally burdensome for healthcare practitioners but were regarded as valuable. Effective communications were challenged by conflict with families and between healthcare practitioners as to appropriate care goal transition, and by prognostic uncertainty. Communication skills appeared to be developed more from experience, and beneficial strategies such as role play and mentoring particularly for younger nurses and doctors were identified. Specific training in EoL communications should target undergraduates and new healthcare practitioners.