Huit membres du personnel soignant belge échangent leurs point de vue sur la fin de vie, les soins palliatifs et la pratique de l'euthanasie. Ils évoquent leur expérience quotidienne et rendent compte de la complexité de certaines situations.
OBJECTIVES: Several barriers have been identified as preventing or delaying access to children's palliative care services. The aim of this study is to further explore such barriers from palliative care professionals' perspective from two London boroughs.
METHODS: Qualitative-five children's palliative care professionals' perceptions were obtained from semi-structured interviews.
RESULTS: Three themes emerged: availability and adequacy of child palliative care (e.g., unreliability of services), obstacles to accessing palliative care (e.g., logistical challenges), and cultural values and family priorities.
CONCLUSION: These findings contribute to the equal opportunities dialogue in this sector and the need for future research to address the challenges identified.
PURPOSE: Though provider and patient perceptions of death are characterized in the adult population literature, there is limited information related to providers' perceptions in pediatric and neonatal patients. The purpose of this study was to better understand how interprofessional care team members perceive and experience neonatal and pediatric end-of-life situations.
DESIGN AND METHODS: This survey questionnaire was administered to interprofessional providers following their participation in an institutional workshop, as part of an ongoing institutional effort to improve end-of-life experiences for patients/family and providers. Interprofessional care providers completed an electronic survey consisting of closed-ended and one open-ended question to elicit their perceptions of their participation in end of life care for a recent neonatal/pediatric patient in the period before the child's death.
RESULTS: The qualitative analysis of 306 free-text responses commenting on the deaths of 138 patients, contained within 880 completed mixed-method surveys, is described. Thematic analysis of the free text discovered three primary themes from the data: favorable aspects of the death experience, unfavorable aspects of the experience, and combined favorable and unfavorable aspects. Four subthemes contributed to the themes; namely, language, parental presence, trust/rapport in provider relationships and inclusion in decision-making, communication, and culture.
CONCLUSIONS: Multiple factors contribute to how interprofessional care providers perceive end-of-life care experiences for neonatal/pediatric patients. The same death may be perceived differently by different providers.
PRACTICE IMPLICATIONS: Understanding favorable and unfavorable aspects of providing end-of-life care will support strategies to provide resources, education and support to facilitate coping and resiliency in care providers.
Perinatal death has an enduring effect on parents which is altered by their experience of care. However, professionals frequently report feeling underprepared to care for bereaved parents. This study evaluated parents’ and professionals’ experiences of using an audio archive of experiences of perinatal deaths (www.stillbirthstories.org) using a self-reported questionnaire. Eighty-three percent of parents and the public (n = 33) found listening to the archive helpful, with no negative responses. Fifty-four percent stated that it changed how they felt about having a perinatal death, increasing the proportion of respondents who felt supported (12 to 27%) and decreasing the proportion who felt alone and anxious (27 to 15%). All professionals accessing the archive found it helpful, stating it increased empathy and understanding of parents’ emotions which improved confidence that parents’ needs could be met. Archives of real experiences may help parents and professionals after perinatal death. Further research is needed whether such an archive has a wider reach and accessibility than traditional support networks.
PURPOSE: The purpose of this study was to explore compassionate leadership with those involved in leading system-wide end-of-life care. Its purpose was to: define compassionate leadership in the context of palliative and end-of-life care; collect accounts of compassionate leadership activity from key stakeholders in end-of-life and palliative care; and identify examples of compassionate leadership in practice.
DESIGN/METHODOLOGY/APPROACH: Four focus groups involving staff from a range of healthcare organisations including hospitals, hospices and community teams were conducted to access the accounts of staff leading palliative and end-of-life care. The data were analysed thematically.
FINDINGS: The themes that emerged from the data included: the importance of leadership as role modelling and nurturing; how stories were used to explain approaches to leading end-of-life care; the nature of leadership as challenging existing practice; and a requirement for leaders to manage boundaries effectively. Rich and detailed examples of leadership in action were shared.
RESEARCH LIMITATIONS/IMPLICATIONS: The findings indicate that a relational approach to leadership was enacted in a range of palliative and end-of-life care settings.
PRACTICAL IMPLICATIONS: Context-specific action learning may be a means of further developing compassionate leadership capability in palliative and end-of-life care and more widely in healthcare settings.
ORIGINALITY/VALUE: This paper presents data indicating how compassionate leadership, as a form of activity, is envisaged and enacted by staff in healthcare.
It is not easy to characterize a problem patient or bereaved relatives because identifying a patient or his bereaved family as a problem; is not considered quite ethical. The approached emergency medical service employees and coroner service physicians were asked to complete a specific targeted anonymous survey. 100 % of survey questionnaires were returned. The questionnaire with a request for filling and returning was submitted to forty employees working full-time, twenty of whom were physicians, ten paramedics and ten lower-level healthcare professionals. The questionnaire comprised ten questions aimed at obtaining clear answers to questions about personal experience with problem patients, specifically aggressive patients, and more specifically whether the health care professionals (HCP) has ever felt immediately threatened by a patient in their work, whether they were exposed to verbal or even physical attack in the context of the patients basic diagnosis established during pre-hospital care. Seventy-five percent of respondents answered Yes to Question No. 5: Have you ever felt threatened by a patient or bereaved relative in your work? ; Eighty percent of respondents answered Yes to Question No. 6: Have you ever been exposed to a verbal attack by a patient or bereaved relative? Seventy-five percent of them answered Yes to Question No. 7: Have you ever been exposed to a physical attack by a patient? The rate of cases in which emergency medical service employees are exposed to verbal or physical attacks is high. The primary experience hypothesis that this happens has been proven as well as the fact that it is a highly topical and therefore unresolved issue that threatens the whole society with its social implications.
Sous-couvert de principe d'autonomie, où nous nous devons d'informer le malade, de suivre ses directives, ne sommes-nous pas en train d'induire une angoisse supplémentaire au patient en fin de vie ? Qu'en est-il de nos possibilités d'accompagner ? Quelle place pour les professionnels de santé; en soins palliatifs, dans ce contexte ? L'influence du corps médical à rédiger les directives anticipées peut avoir l'effet inverse d'empêcher le singulier et d'être dans des conduites prédéterminées. Il semble important de se questionner sur nos intentions quand nous demandons à un patient en fin de vie de rédiger ses directives anticipées.
OBJECTIVE: In Indonesia, palliative care has not been uniformly implemented at all levels of healthcare facilities. Healthcare personnel play an important role in providing that care. This study aimed to explore the current conditions and expectations regarding palliative care from the perspective of healthcare personnel.
RESULTS: A qualitative study was conducted with 12 physicians and five nurses from December 2017 to June 2018. In-depth interviews of these professionals were conducted. The responses were subjected to inductive thematic analysis, generating five themes and 24 subthemes. The themes were (1) family and environment, including barriers and contributions to palliative care; (2) numbers and competence of healthcare providers; (3) accessibility of palliative care; (4) case management of patient's and family's problems by healthcare personnel; and (5) barriers or enabling factors from the healthcare system. Patients, family members, and healthcare personnel contribute to case management. Attention must be paid to improving access and the healthcare system for thorough implementation of palliative care.
BACKGROUND: Person-centred palliative care poses high demands on professionals and patients regarding appropriate and effective communication and informed decision-making. This is even more so for patients with limited health literacy, as they lack the necessary skills to find, understand and apply information about their health and healthcare. Recognizing patients with limited health literacy and adapting the communication, information provision and decision-making process to their skills and needs is essential to achieve desired person-centred palliative care. The aim of this study is to summarize available strategies and tools for healthcare providers towards successful communication, information provision and/or shared decision-making in supporting patients with limited health literacy in hospital-based palliative care in Western countries.
METHODS: A scoping review was conducted. First, databases PubMed, Embase, CINAHL, and PsycINFO were searched. Next, grey literature was examined using several online databases and by contacting national experts. In addition, all references of included studies were checked.
RESULTS: Five studies were included that showed that there are face-to-face, written as well as online strategies available for healthcare providers to support communication, information provision and, to a lesser extent, (shared) decision-making in palliative care for patients with limited health literacy. Strategies that were mentioned several times were: teach-back method, jargon-free communication and developing and testing materials with patients with limited health literacy, among others. Two supporting tools were found: patient decision aids and question prompt lists.
CONCLUSIONS: To guarantee high quality person-centred palliative care, the role of health literacy should be considered. Although there are several strategies available for healthcare providers to facilitate such communication, only few tools are offered. Moreover, the strategies and tools appear not specific for the setting of palliative care, but seem helpful for providers to support the communication, information provision and decision making with patients with limited health literacy in general. Future research should focus on which strategies or tools are (most) effective in supporting patients with limited health literacy in palliative care, and the implementation of these strategies and tools in practice.
BACKGROUND: Chronic lung diseases, such as COPD, are a growing health concern within the veteran population. Palliative care programs have mainly focused on the needs of people with malignant disease in the past, however the majority of those worldwide needing palliative care have a non-malignant diagnosis. Additionally, palliative care provision can often be fragmented and varied dependent upon a patient's geographical location. This study aimed to explore palliative care provision for veterans with non-malignant respiratory disease, and their family carers, living in a rural area of America.
METHODS: Qualitative study involving a convenience sample of 16 healthcare professionals from a large veteran hospital in Boise, Idaho. Data collection consisted of 5 focus groups which were transcribed verbatim and analysed using thematic analysis.
RESULTS: Healthcare professionals perceived that a lack of education regarding disease progression enhanced feelings of anxiety amongst veterans with NMRD, and their family carers. Additionally, the uncertain disease trajectory impeded referral to palliative and hospice services due to healthcare professionals own ambiguity regarding the veteran's prognosis. A particular barrier also related to this particular patient population, was a perceived lack of ability to afford relevant services and a lack of local palliative service provision. Healthcare professionals expressed that a compounding factor to palliative care uptake was the perceptions held by the veteran population. Healthcare professionals expressed that alongside aligning palliative care with dying, veterans also viewed accepting palliative care as 'surrendering' to their disease. Findings indicated that telemedicine may be a beneficial platform to which palliative care can be provided to veterans with NMRD, and their family carers, in rural areas using a digital platform.
CONCLUSION: Non-malignant respiratory disease is a life limiting condition commonly experienced within the veteran population. A new model of palliative care utilising a dynamic digital platform for this particular veteran population may provide an optimal way of providing efficient holistic care to areas with limited palliative services.
Objective: Healthcare professionals who work in palliative care units face stressful life events on a daily basis, most notably death. For this reason, these professionals must be equipped with the necessary protective resources to help them cope with professional and personal burnout. Despite the well-recognized importance of the construct "meaning of work," the role of this construct and its relationship with other variables is not well-understood. Our objective is to develop and evaluate a model that examines the mediating role of the meaning of work in a multidisciplinary group of palliative care professionals. Using this model, we sought to assess the relationships between meaning of work, perceived stress, personal protective factors (optimism, self-esteem, life satisfaction, personal growth, subjective vitality), and sociodemographic variables.
Method: Professionals (n = 189) from a wide range of disciplines (physicians, psychologists, nurses, social workers, nursing assistants, physical therapists, and chaplains) working in palliative care units at hospitals in Madrid and the Balearic Islands were recruited. Sociodemographic variables were collected and recorded. The following questionnaires were administered: Meaning of Work Questionnaire, Perceived Stress Questionnaire, Life Orientation Test-Revised, Satisfaction with Life Scale, Subjective Vitality Scale, Rosenberg Self-Esteem Scale, and the Personal Growth Scale.
Result: The explanatory value of the model was high, explaining 49.5% of the variance of life satisfaction, 43% of subjective vitality, and 36% of personal growth. The main findings of this study were as follow: (1) meaning of work and perceived stress were negatively correlated; (2) optimism and self-esteem mediated the effect of stress on the meaning attached to work among palliative care professionals; (3) the meaning of work mediated the effect of stress on subjective vitality, personal growth, and life satisfaction; and (4) vitality and personal growth directly influenced life satisfaction.
Significance of results: The proposed model showed a high explanatory value for the meaning professionals give to their work and also for perceived stress, personal protective factors, and sociodemographic variables. Our findings could have highly relevant practical implications for designing programs to promote the psychological well-being of healthcare professionals.
OBJECTIVE: A major barrier to the adoption of an approach that integrates spirituality into palliative care is the lack of preparation/education of healthcare professionals on the topic. This study aimed to evaluate the effectiveness of a continuing education activity for healthcare professionals addressing spirituality and spiritual care provision to patients and families within palliative care.
METHOD: We conducted an intervention study using a quantitative pre- and posttest design in a convenience sample of 52 healthcare professionals. Participants completed the Brazilian version of the Spiritual Care Competence Scale before and after attending a four-hour continuing education activity.
Result: Significant differences were observed between pre- and postintervention scores in the following dimensions: assessment and implementation of spiritual care, professionalization and improving the quality of spiritual care, personal support, and patient counseling (p < 0.001), and referral (p = 0.003).
Significance of results: The results of this study provide preliminary evidence of a positive effect of this educational intervention on the development of the competences needed by healthcare professionals to deliver a comprehensive approach centered on the patient/family, which includes attention to spirituality and spiritual care in the decision-making process.
BACKGROUND: Advance care planning (ACP) is a process where patients express their wishes regarding their future healthcare. Its importance has been increasingly recognised in the past decade. As increasing numbers of elderly people are living in care homes, the aim of this review was to identify the most effective ACP interventions to train/educate all levels of healthcare professionals working in care homes.
DESIGN: A systematic review. Two independent reviewers undertook screening, data extraction and quality assessment.
DATA SOURCES: Searched from inception to June 2018: Ovid Medline, Ovid Medline in process, Ovid Embase, Cochrane Central Register of Controlled Trials, EBSCO Cinahl and Ovid PsycINFO.
RESULTS: Six studies were included: three before and after studies, one cluster randomised controlled trial (RCT), one non-blinded RCT and one qualitative study. Five studies reported on ACP documentation, three on impact on ACP practice and three studies on healthcare-related outcomes. All quantitative studies reported an improvement in outcomes. In the three studies reporting on health-related outcomes, one showed significant reductions in hospitalisation rate, days and healthcare costs; one reported significant reductions in hospital deaths; and the third showed reductions in hospital days and deaths. A meta-analysis could not be performed due to the heterogeneity of the outcome measures. The included qualitative study highlighted perceived challenges to implementing an educational programme in the care home setting.
CONCLUSION: There is limited evidence for the effectiveness of ACP training for care home workers. More well-designed studies are needed.
BACKGROUND: The current debate regarding decision-making at the End-of-Life (EoL) is increasing remarkably and has spread all over the world. However, literature has paid little attention to describe choice's differences in EoL care between healthcare professionals and general public.
OBJECTIVES: The aim of this study was to explore the difference between choices in EoL care made by healthcare professionals and those of the general public within the Italian context.
SETTING AND PARTICIPANTS: In 2017, an Italian widespread survey was conducted using a snowball sampling. A total of 2038 participants completed the survey, 55.64% of which were the general public.
RESULTS: The main differences related to specific EoL choices made by healthcare professionals and the general public. In particular, healthcare professionals were more likely to avoid cardiopulmonary resuscitation and mechanical forms of breathing in terminal-stage conditions, and they were also more likely to be favorable towards the use of opioids to avoid suffering. Overall, healthcare professionals were also more likely to make a choice rather than express a 'not sure' answer.
CONCLUSION: The higher percentage of participants in the general public group that chose 'not sure' highlighted the importance of addressing and enhancing people's self-awareness. More cross-national investigation should help to frame the understanding of the choice's differences in EoL care between healthcare professionals and general public.
Objective: To explore generalist palliative care providers’ experiences of emotional labour when undertaking conversations around palliative and end-of-life care with patients and families, to inform supportive strategies.
Methods: Semi-structured interviews conducted with generalist staff (those providing ‘primary’ or ‘general’ palliative care, not palliative care specialists) who had attended a communication workshop. Sampling was purposive (by gender, profession, experience). Data were analysed using a framework approach; a sample of transcripts were double-coded for rigour. Data collection and analysis were informed by theories of emotional labour, coping, and communication.
Results: Four ambulance staff, three nurses, two speech and language therapists, and one therapy assistant were interviewed. Five themes emerged: emotions experienced; emotion ‘display rules’; emotion management; support needs; and perceived impact of emotional labour. Participants reported balancing ‘human’ and ‘professional’ expressions of emotion. Support needs included time for emotion management, workplace cultures that normalise emotional experiences, formal emotional support, and palliative and end-of-life care skills training.
Conclusion: Diverse strategies to support the emotional needs of generalist staff are crucial to ensure high-quality end-of-life care and communication, and to support staff well-being.
Practice implications: Both formal and informal support is required, alongside skills training, to enable a supportive workplace culture and individual development.
Background: Persons of South Asian origin (SAs) are the fastest growing minority group in the United States. Culturally competent care for patients and families of SA origin necessitates an understanding of the cultural factors that affect decision-making for palliative and end-of-life care.
Objective: To better understand health-care providers' perspectives on decision-making among seriously ill persons of SA origin.
Method: Data were collected in a US Midwestern city, predominantly in 2 hospital-based health-care systems along with a few interviews of private practitioners. Researchers conducted a thematic analysis of data. Transcripts were coded individually, coding disagreements resolved through discussion and themes arrived upon by consensus.
Results: Health-care providers reported that numerous factors interact to influence decision-making among SAs. Patient-based factors include education, time spent in the United States, expectations of physician-directed care, and spiritual beliefs. Family-based factors include a norm of family-based decision-making and a complex distribution of decision-making responsibilities among family members. Provider-based factors include challenges reconciling SA and American approaches to decision-making. Community-based factors include negative attitudes and a lack of education regarding palliative care and the potential role of community support in health-care decision-making.
Conclusions: A rich cultural context influences health-care decision-making among seriously ill SAs. An understanding of this context will enhance providers' cultural competence and likely improve services to this growing population.
There is no doubt that the organization of healthcare is currently shifting, partly in response to changing macrolevel policies. Studies of healthcare policies often do not consider healthcare workers' experiences of policy change, thus limiting our understanding of when and how policies work. This article uses longitudinal qualitative data, including participant observation and semistructured interviews with workers within hospice care as their organizations shifted in response to a Medicare policy change. Prior to the policy change, I find that the main innovation of hospice-the interdisciplinary team-is able to resist logics from the larger medical institution. However, when organizational pressures increase, managers and workers adjust in ways that reinforce medical logics and undermine the interdisciplinary team. These practices illustrate processes by which rationalization of healthcare affects workers' experiences and the type of care available to patients.
Physician aid-in-dying (PAD) is now legalized in more than half a dozen states across the United States yet remains controversial among health care providers and the general public. Previous studies have described physicians' and nurses' experiences with and attitudes about PAD; however, there is no data about PAD in the context of genetic counseling. This study explores genetic counselors' experiences, understanding, training, and perspectives about PAD. Fifteen participants were recruited to complete semistructured telephone interviews. Five participants had received patient inquiries about PAD. Most participants (n = 10) did not feel prepared to discuss PAD with patients and felt that they did not have adequate knowledge to answer patient questions about the practice. Participants described how the unique training, skills, and experiences of genetic counselors could be beneficial for discussing PAD with patients, in comparison to other providers. All participants supported training for genetic counselors about PAD, with many suggesting integration with education about palliative care and end-of-life planning. This is the first study to investigate PAD in the context of genetic counseling. Genetic counselors have had patients ask questions about PAD, want education and access to resources about PAD, and believe they can provide important support and guidance to patients considering PAD in some genetic counseling contexts.
"The Pause" was first practiced by a nurse at a Level 1 trauma center to honor the death of a deceased patient. This practice has spread internationally and is used in emergency departments, intensive care, transplant, and oncology units, in addition to pre-hospital settings. There is a paucity of research published on the effects of The Pause for health care workers. We used a three-staged Delphi methodology to understand the barriers, benefits, and language used in The Pause. Analyses of email communication and interview transcripts suggest that The Pause poses minimal risk and has considerable benefits. Benefits include increased perceived team cohesion, a moment for reflection, and a method by which to honor a deceased patient. The Pause allows nurses to feel more present to meet the needs of the next patient they care for during a shift. Further research is merited.
Arguably, deciding the timing and manner of one's death is the biggest decision of all. With the Victorian Voluntary Assisted Dying Act commencing in 2019, assessing capacity to choose Voluntary Assisted Dying (VAD) becomes a critical issue for clinicians in Victoria, and elsewhere with ongoing efforts to change the law across Australia and in New Zealand. We consider how capacity assessment and undue influence screening can be approached for VAD, the role and risks of supported decision-making, and argue for the importance of training to ensure health care professionals are educated about their role.