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: 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.
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.
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.
Objective: To examine the views and experiences of patients and their health care providers on developing advance care planning (ACP) and advance care directives (ACD); and determine barriers and facilitators to ACD development, storage, and use, including implications for people with communication disability.
Method: An integrative review of 93 studies, analysed according to their content themes.
Results: Content themes encapsulated the initiation, documentation, and implementation stages of ACP/ACD. Lack of guidance for initiating and supporting ACP/ACD impedes discussions, and both patients and healthcare providers avoid discussions owing to fear of dying and reluctance to think about end-of-life.
Conclusions: There are several barriers and facilitators to the initiation of ACP discussions, documentation and implementation of ACD, and little research exploring the views of legal professionals on the development, storage, or use of ACP documents. Further research is needed to explore the timing and responsibility of both legal and health professionals in initiating and supporting ACP discussions.
Practice Implications: It is important for healthcare providers to raise ACP discussions regularly so that patients have time to make informed advance care decisions. Storage of the document in an electronic health record might facilitate better access to and implementation of patients’ end-of-life care decisions.
Au sommaire de ce dossier sur le ressenti et les émotions des soignants dans leur activité professionnelle : "Les soignants et leurs émotions au quotidien" : les soignants doivent, devant leurs émotions, adoptés des stratégies afin d'empêcher les débordements sans, pour autant, être dans l'évitement. "Fatigue compassionnelle et traumatisme vicariant chez les soignants" : le traumatisme vicariant évoque un état de stress post-traumatique chez le soignant confronté au récit traumatique d'un patient. La fatigue compassionnelle se manifeste par une érosion graduelle de l'empathie, de l'optimisme et de la compassion. Ces troubles nécessitent une prise en compte immédiate et adaptée. "Figures de la souffrance et du deuil des soignants" : le travail de verbalisation et de symbolisation est essentiel dans ce contexte. "L'impact des situations difficiles sur les soignants" : il est important de prendre en compte ces émotions et d'identifier les ressources qui peuvent être proposées aux soignants. La solidarité entre soignants et la cohésion d'équipe sont également essentielles. "Des ressources pour soutenir les soignants" : ces ressources sont les temps d'échanges, formels ou non, les réunions d'équipe, les retours d'expérience et l'analyse des pratiques. "A l'écoute de la souffrance du corps soignant". "Les soignants face aux événements douloureux, témoignages". "Rester soignant malgré l'inconcevable.".
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Les questions sur la fin de vie soulèvent des enjeux médicaux, éthiques, juridiques et sociétaux très complexes qui alimentent mes craintes. Le professeur Didier Sicard a raison d'insister sur notre "esquive de la mort en tant que terme ultime et inéluctable de notre existence - notre mort et la mort de nos proches" ; et pourtant - et ce n'est pas le moindre des paradoxes - que de débats sur les conditions de la fin de vie depuis quarante ans, et surtout depuis une quinzaine d'années !
Être soignant en périnatalité demande de travailler avec lâ€™intime de lâ€™autre et le sien propre. Les enjeux de vie et de mort se côtoient en salle de naissance, ramenant chacun au sens de la vie et des origines. Quand le deuil périnatal sâ€™invite dans le tableau idéalisé de la naissance, le soignant devient le port dâ€™attache auquel les parents sâ€™accrochent pour ne pas sombrer.
BACKGROUND: The Advanced Lung Disease Service is a unique, new model of integrated respiratory and palliative care, which aims to address the unmet needs of patients with advanced, non-malignant, respiratory diseases. This study aimed to explore patients' and carers' experiences of integrated palliative care and identify valued aspects of care.
METHODS: All current patients of the integrated service and their carers were invited to complete a confidential questionnaire by post or with an independent researcher.
RESULTS: Eighty-eight responses were received from 64 (80.0%) eligible patients and from 24 (60%) eligible carers. Most participants (84, 95.5%) believed the integrated service helped them to manage breathlessness and nearly all participants (87, 98.9%) reported increased confidence managing symptoms. One third of patients (34.4%) had received a nurse-led domiciliary visit, with nearly all regarding this as helpful. Most participants believed the integrated respiratory and palliative care team listened to them carefully (87, 98.9%) with opportunities to express their views (88, 100%). Highly valued aspects of the service were continuity of care (82, 93.2%) and long-term care (77, 87.5%). Three quarters of participants (66, 75.0%) rated their care as excellent, with 20.5% rating it as very good. Nearly all (87, 98.9%) participants reported that they would recommend the service to others.
CONCLUSIONS: Patients and carers expressed high levels of satisfaction with this model of integrated respiratory and palliative care. Continuity of care, high quality communication and feeling cared for were greatly valued and highlight simple but important aspects of care for all patients.
The current study explored the perceptions of health care providers' use of electronic advance directive (AD) forms in the electronic health record (EHR). The Technology Acceptance Model (TAM) was used to guide the study. Of 165 surveys distributed, 151 participants (92%) responded. A moderately strong positive correlation was noted between perceived usefulness and actual system usage (r = 0.70, p < 0.0001). Perceived ease of use and actual system usage also had a moderately strong positive correlation (r = 0.70, p < 0.0001). In contrast, the strength of the relationship between behavioral intention to use and actual system usage was more modest (r = 0.22, p < 0.004). There was a statistically significant difference in actual system usage of electronic ADs across six departments ( 2 = 79.325, p < 0.001). The relationships among primary TAM constructs found in this research are largely consistent with previous TAM studies, with the exception of behavioral intention to use, which is slightly lower. These data suggest that health care providers' perceptions have great influence on the use of electronic ADs. [
Introduction: The goal of palliative care is to improve the quality of life when recovery isn't possible anymore. The objective is to widen our vision of potential (unspoken) needs at the end of life with patients, close relatives, nurses and general practitioners. This is to aim at a more versatile, but personal care at the end of life. The research question is: â€œHow important do patients, close relatives and healthcare providers consider the 11 core themes in defining a good death as described in the article of Meier â€˜Defining a Good Deathâ€™ in 2016?â€
Method: Specific questionnaires for general practitioners, nurses, patients and family members were distributed in the working area of the Palliative Care Network in the region Aalst-Dendermonde-Ninove with the cooperation of 5 Local Quality Groups (LOK's), 2 nursing homes and 2 groups of homecare nurses. The data was analyzed with Microsoft Excel 2016 (Microsoft Corp., Redmond, WA, USA) and the statistical program SAS (SAS Institute Inc., Cary, NC, USA).
Results: The questionnaire was completed by 67 nurses, 57 general practitioners, 16 patients and 8 family members. Although, the 34 subthemes were generally considered important to be able to speak of a good death, there were still significant differences determined with healthcare providers, between general practitioners and nurses, men and women, and depending on their age. Nurses found the following themes significantly more important than general practitioners: dying during sleep, the patient isn't a burden to their close relatives, life well lived, faith, all available treatments were used, the patient's last phase of life can be lived in a usual and meaningful manner, he/she can talk to their healthcare provider about spiritual beliefs or fears in relation to dying, the presence of pets and the cost of healthcare. All groups considered unanimously that a pain-free death was the most important. General practitioners, nurses, patients and close relatives found the following themes as important: support of family, respect for the patient as an individual, being able to say goodbye and euthanasia in case of unbearable suffering.
Discussion and conclusion: In agreement with the patient, medical care should focus on a pain-free situation during the last phase of life and not on the exhaustion of possible treatments which prolongs life unnecessarily. Appropriate care at the end of life can be broader and all 34 subtheme's can be important in early healthcare planning. Significant differences between general practitioners and nurses deserve attention, because patients and family members expect that healthcare providers will work together as a team.
OBJECTIVE: A high incidence of burnout has been reported in health professionals working in palliative care units. Our present study aims to determine whether there are differences in the secretion of salivary cortisol between palliative care unit health professionals with and without burnout, and to elucidate whether there is a relationship between burnout syndrome and perceived stress and psychopathological status in this population.
METHOD: A total of 69 health professionals who met the inclusion criteria participated in our study, including physicians, nurses, and nursing assistants. Some 58 were women (M = 29.65 years, SD = 8.64) and 11 men (M = 35.67 years, SD = 11.90). The level of daily cortisol was registered in six measurements taken over the course of a workday. Burnout syndrome was evaluated with the Maslach Burnout Inventory-Human Services Survey (MBI-HSS), the level of perceived stress was measured using the Perceived Stress Scale, and psychopathological status was gauged using the SCL-90-R Symptoms Inventory.
RESULTS: There were statistically significant differences in secretion of cortisol in professionals with high scores on a single subscale of the MBI-HSS [F(3.5) = 2.48, p < 0.03]. This effect was observed 15-30 minutes after waking up (p < 0.01) and at bedtime (p < 0.06). Moreover, the professionals with burnout showed higher scores on the psychopathology and stress subscales than professionals without it.
SIGNIFICANCE OF RESULTS: A higher score in any dimension of the burnout syndrome in palliative care unit health professionals seems to be related to several physiological and psychological parameters. These findings may be relevant for further development of our understanding of the relationship between levels of burnout and cortisol secretion in the health workers in these units.
OBJECTIVE: Compassion fatigue, burnout, and vicarious traumatization are prominent topics in the current literature on the impact of the rewarding but challenging work of healthcare professionals who care for patients with life-limiting illnesses. The positive effects of caregiving constitute a newly emerging outcome that has been relatively unexplored in the pediatric literature, and yet they may play an important role in contributing to the satisfaction and well-being of the healthcare professionals who care for children who have a life-limiting illness.
METHOD: This paper reports the results of a secondary analysis of qualitative interview transcripts that explored the experiences of hospital-based pediatric healthcare providers caring for children with varied life-limiting illnesses. In-depth qualitative interviews were conducted with 25 healthcare professionals (9 social workers, 8 nurses, and 8 physicians). The majority of participants were women (80%), with an age range between 20 and 60 years, and most (84%) had the experience of caring for more than 15 dying children. Thematic analysis was conducted using interpretive description and constant comparison.
RESULTS: Every healthcare professional interviewed experienced personal growth as a result of their providing care for dying children. Three dimensions of personal growth were most consistently reported: (1) new or altered life perspectives, (2) enhanced personal resources, and (3) benevolence.
SIGNIFICANCE OF RESULTS: A deeper understanding of the phenomenon of personal growth could help healthcare organizations to implement innovative approaches that would counterbalance compassion fatigue, and thereby enhance both healthcare provider well-being and child and family outcomes.