Background: A better understanding of differences between the preferences of the general public and the recommendations of healthcare providers with regard to end-of-life (EOL) care may facilitate EOL discussion.
Methods: The aim of this study was to clarify differences between preferences of the general public and recommendations of healthcare providers with regard to treatment, EOL care, and life-sustaining treatment (LST) based on a hypothetical scenario involving a patient with advanced cancer. This study comprised exploratory post-hoc analyses of “The Survey of Public Attitude Towards Medical Care at the End of life”, which was a population based, cross-sectional anonymous survey in Japan to investigate public attitudes toward medical care at the end of life. Persons living in Japan over 20 years old were randomly selected nationwide. Physicians, nurses, and care staff were recruited at randomly selected facilities throughout Japan. The general public data from the original study was combined to the data of healthcare providers in order to conduct exploratory post-hoc analyses. The preferences of the general public and recommendations of healthcare providers with regard to EOL care and LST was assessed based on the hypothetical scenario of an advanced cancer patient.
Results: All returned questionnaires were analyzed: 973 from the general public, 1039 from physicians, 1854 from nurses, and 752 from care staff (response rates of 16.2, 23.1, 30.9, and 37.6%, respectively). The proportion of the general public who wanted “chemotherapy or radiation”, “ventilation”, and “cardiopulmonary resuscitation” was significantly higher than the frequency of these options being recommended by physicians, nurses, and care staff, but the general public preference for “cardiopulmonary resuscitation” was significantly lower than the frequency of its recommendation by care staff.
Conclusion: Regarding a hypothetical scenario for advanced cancer, the general public preferred more aggressive treatment and more frequent LST than that recommended by healthcare providers.
Objectives: Palliative care workers have continuous exposure to the emotionally draining effects of pain, suffering, death, grief, and mourning. Burnout syndrome is common among these individuals who accompany patients on the way to death. This study evaluated burnout, stress, anxiety, and depression among care givers.
Methods: A total of 47 individuals working in palliative care units or internal disease and neurology clinics participated in the study. The participants were divided into 2 groups: palliative care workers (Group P) and workers in internal disease and neurology clinics (Group A). All of the participants completed the Maslach Burnout Inventory, the Beck anxiety and depression scales, and the Stress Appraisal Measure.
Results: A total of 47 healthcare workers agreed to complete the scales. Emotional burnout and desensitization scores were found to be elevated, and personal success scores were low in both groups. The Beck Anxiety Inventory revealed findings of moderate anxiety in both groups, while cognitive-sensorial, physiological, and pain complaints, as well as signs of stress, were more pronounced in Group A.
Conclusion: Burnout is a significant problem among healthcare workers and signs of stress and cognitive-sensorial, physiological, and pain complaints are particularly common among those working in palliative care units. Structural arrangements aimed at addressing the causes of burnout could positively affect the well-being of healthcare workers.
Health care professionals’ (HCPs) experiences during early pediatric end-of-life care were explored using a theory-building case study approach. Multiple data collection methods including observation, electronic medical record review, and semi-structured interviews were collected with 15 interdisciplinary HCPs across four cases. Within- and across-case analyses resulted in an emerging theory. HCPs’ initial awareness of a child’s impending death is fluid, ongoing, and informed through both relational and internal dimensions. Initial cognitive awareness is followed by a deeper focus on the child through time-oriented attention to the past, present, and future. HCPs engage in a “delicate dance of figuring out” key issues. Awareness was exemplified through four themes: professional responsibility, staying connected, grounded uncertainty, and holding in. The emerging theoretical model provides a framework for HCPs to assess their ongoing awareness, identify personal assumptions, and inform gaps in understanding when facilitating early end-of-life care discussions with families.
Objective: Bereavement care is one of the major components of hospice palliative care. Previous studies revealed the barriers to the success of the system, including lack of time or support from mental health professionals. Few studies have explored the intrapersonal barriers to bereavement care by clinical staff. The aims of the study were to explore (1) the emotional and cognitive barriers of bereavement care by hospice palliative care staff and (2) the demographic and work characteristics related to these emotional and cognitive barriers.
Method: The participants were clinical staff (n = 301) who were working in hospice palliative care units, including hospice wards, home care, and hospital-based palliative care teams. Their professional backgrounds included physicians (n = 12), nurses (n = 172), social workers (n = 59), psychologists (n = 34), spiritual care specialists (n = 15), and others (n = 9). A cross-sectional design was used and a standardized questionnaire including emotional and cognitive barriers was developed. Information on demographic and work characteristics was also collected. Content validity index, an exploratory factor analysis, and multiple regression analysis were conducted.
Results: One emotional barrier, “negative emotional reactions” (13 items, Cronbach's a = 0.92), and three cognitive barriers, “lack of ability” (7 items, Cronbach's a = 0.85), “belief in avoidance” (5 items, Cronbach's a = 0.86), and “outcome expectancy” (4 items, Cronbach's a = 0.85) were identified. Clinical staff who had higher working stress, lower self-rated ability for bereavement care, and higher negative impact from major life loss tended to have higher emotional and cognitive barriers.
Significance of results: Clinical staff should be aware of intrapersonal barriers to bereavement care. Educational programs should be developed to improve the ability to engage in bereavement care.
Background: Despite the body of literature regarding the varying definition of compassion, there appears a lack of literature pertaining to the meaning of compassion from the perspective of health care professionals working in palliative care settings.
Objective: The study aimed to explore how health care professionals working in palliative care settings view and/or understand the construct of compassion.
Methods: A qualitative approach using semistructured interviews was used. Interviews were conducted with eighteen health care professionals working in pediatric, adult, and aged palliative care settings. Interviews transcripts were thematically analyzed.
Results: Thematic analysis identified four main interrelated themes and supplementary subthemes. Health care professionals working in palliative care settings identified their perception of the (1) meaning of compassion, (2) importance of providing compassionate care, (3) barriers to providing compassionate care, and (4) facilitating compassionate care.
Conclusions: This study presents a novel understanding of the components of compassion from the perspective of health care professionals working in palliative care. While there is need for future research, important areas of improvement include increased resourcing, reducing time pressures, and education within palliative care settings. This will enable the fostering of compassionate care to patients, as well as enhanced well-being both professionally and personally for health care providers delivering such care.
By 2060, almost 25% (98 million) of the population is expected to be aged 65 or older. Health care professionals who provide hospice and palliative care are overtasked and demonstrate symptoms of burnout. Narrative medicine and mindfulness interventions create meaningful connections with patients, improve the delivery of patient-centered care, and enhance the health of the caregivers. In this pilot program, health care professionals in hospice and palliative care settings were invited to participate in a study to evaluate the impact of narrative medicine or mindfulness on measures of burnout and empathy. Participants completed baseline and 12-week post-intervention surveys of burnout and empathy, as well as weekly journals of their experience. Mean overall scores for depersonalization were significantly reduced at 12-week post-intervention. There were no significant changes in emotional exhaustion or empathy compared to baseline. This brief, weekly intervention may be beneficial for both patients and health care professionals in the hospice and palliative care setting.
CONTEXT: Symptom management is essential in the end of life care of long-term care facility residents.
OBJECTIVES: To study discrepancies and possible associated factors in staff and family carers' symptom assessment scores for residents in the last week of life.
METHODS: A post mortem survey in Belgium, the Netherlands and Finland: staff and family carers completed the "End-Of-Life in Dementia - Comfort Assessment in Dying" scale (EOLD-CAD), rating 14 symptoms on a 1 to 3-point scale. Higher scores reflect better comfort. We calculated mean paired differences in symptom, subscale and total scores at a group level and interrater agreement and percentage of perfect agreement at a resident level.
RESULTS: Mean staff scores significantly reflected better comfort than those of family carers for the total End-of-Life in Dementia—Comfort Assessment in Dying (31.61 vs. 29.81; P < 0.001) and the physical distress (8.64 vs. 7.62; P < 0.001) and dying symptoms (8.95 vs. 8.25; P < 0.001) subscales. No significant differences were found for emotional distress and well-being. The largest discrepancies were found for gurgling, discomfort, restlessness, and choking for which staff answered not at all, whereas the family carer answered a lot, in respectively, 9.5%, 7.3%, 6.7%, and 6.1% of cases. Inter-rater agreement ranged from 0.106 to 0.204, the extent of perfect agreement from 40.8 for lack of serenity to 68.7% for crying.
CONCLUSION: There is a need for improved communication between staff and family and discussion about symptom burden in the dying phase in long-term care facilities.
PURPOSE: To explore the attitude of nursing professionals towards death.
DESIGN: Systematic qualitative review methods were used.
METHODS: A search was conducted in the PubMed, Web of Science, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and CUIDEN databases. This study included 17 articles.
FINDINGS: Thirteen categories emerged, which were grouped into three themes: meanings and feelings during the dying process; coping strategies in the face of death; and the importance of training, experience, and providing a dignified death. In the different accounts of the participants, it was found that death had a large negative emotional impact on them, that the participants complained about the lack of previous training in the care of dying patients, and that avoiding these complex situations was one of the strategies most commonly used by professionals to face the death of a patient.
CONCLUSIONS: The lack of training in the basic care of terminally ill patients, as well as today's preconceived negative idea about death, both cause health professionals to experience situations of great stress and frustration resulting, on many occasions, in resorting to avoidance of these situations, thus preventing dying with dignity.
CLINICAL RELEVANCE: In this article, we explore the consequences of this process for nursing professionals, common coping strategies, and possible areas for improvement, such as the need for the training of nursing professionals in the care of terminally ill patients and their families.
Background: In the United States, 45% of people enrolled in hospice have dementia. We know little about how hospice professionals facilitate preference-aligned end-of-life care for people with dementia (PWD) and their families.
Objective: To examine hospice stakeholders' perspectives on caring for PWD and their families.
Design: Multisite qualitative study using semi-structured interviews with interdisciplinary hospice clinicians, leaders, and administrators. The interdisciplinary team used the constant comparative method to identify, code, and characterize relevant themes.
Setting/participants: Four geographically distinct nonprofit U.S. hospice organizations. Fifty-one hospice employees: 61% clinical staff, 25% executive leaders, and 14% administrators.
Measurements: Interview domains included participants' practices of engaging patients/families in discussions of preferences for end-of-life care and professional opinions of changes over time. Cross-topic probes focused on delivering hospice care to PWD and their proxies/families.
Results: Four themes regarding caring for PWD in hospice. (1) Dementia prevalence in hospice is increasing and some hospices are developing programs to accommodate specific needs. (2) Setting impacts discussions of preferences and care decisions. (3) Caring for PWD on hospice poses unique challenges caused by (i) perceptions that dementia is not terminal, (ii) a lack of advance care planning discussions before hospice admission, and (iii) proxy decision-makers who were inadequately prepared for their role. (4) Hospice regulatory and policy changes disproportionately impact PWD.
Conclusions: Hospice professionals perceive increasing demand for, and multilevel challenges to, caring for PWD. Clinicians "upstream" from hospice may help by engaging patients and proxies in discussions of preferences for end-of-life care and providing anticipatory guidance.
Palliative care practice is associated with risk factors linked to end-of-life, chronicity, personal, interpersonal, and work characteristics, as well as with protective factors, but how these are perceived by the health care providers themselves is not clear. This article aims to elaborate a theoretical framework explaining the risk and protective factors for palliative care providers in their daily practice. Nineteen providers (16 nurses, 3 physicians) working in a palliative care unit of a clinical-research institute in Northern Italy were interviewed. A Grounded Theory qualitative approach guided the data collection and analysis. From the interviews, 28 codes, subsequently organized into 11 interconnected categories, emerged. They described both stressors (emotion management regarding death/dying, conflicts, communication and relationship with patients/caregivers, discrepancies between patients' and caregivers' needs, communication of poor diagnosis/prognosis, decision making about treatment, and real-life and work interference) and protective factors (social support, positive approach and value of past experience, recognized value of/passion toward professional work, work-family balance). Experiencing these elements as positive or negative depends on the professionals' point of view, as well as their past and present experience.
Understanding what dealing with life-limiting illnesses means may suggest tailored interventions to improve professionals' well-being by fostering the protective elements and combatting the risk factors.
A growing body of research has examined modalities for delivering palliative care education; however, we know little about education and training preferences of VA interdisciplinary Palliative Care Consult Teams (PCCT). In the BEACON II study, we explored training preferences of PCCTs from 46 Veterans Affairs Medical Centers (VAMCs) participating in either a multisite webinar or a small group, in-person workshop. We interviewed participants by telephone seven to eight month post-training. In all, 75.9% preferred in-person education and training, including 78.9% of workshop participants and 73.1% of webinar participants. Respondents described in-person training as fostering learning through the following processes: (1) active engagement and focus, (2) interaction and networking, (3) meaning-making and relevance, and (4) reciprocity and commitment. Although it is not possible for Web-based palliative care education programs to replicate all aspects of the in-person learning experience, building experiential, interactive, meaningful, and reciprocal components into Web-based education may help shift preferences and make interdisciplinary team-based palliative care education accessible to a larger audience.
BACKGROUND: Hospice workers are required to regularly use emotional regulation strategies in an attempt to encourage and sustain terminally ill patients and families. Daily emotional regulation in reaction to constantly watching suffering patients may be intensified among those hospice professionals who have high levels of compassion fatigue. The main object of this study was to examine the relationship between daily exposition to seeing patient suffering and daily emotional work, and to assess whether compassion fatigue (secondary traumatic stress and burnout) buffers this relationship.
METHODS: We used a diary research design for collecting daily fluctuations in seeing patients suffering and emotional work display. Participants filled in a general survey and daily survey over a period of eight consecutive workdays. A total of 39 hospice professionals from two Italian hospices participated in the study.
RESULTS: Multilevel analyses demonstrated that daily fluctuations in seeing patients suffering was positively related to daily emotional work display after controlling for daily death of patients. Moreover, considering previous levels of compassion fatigue, a buffering effect of high burnout on seeing patients suffering - daily emotional work display relationship was found.
CONCLUSIONS: A central finding of our study is that fluctuations in daily witness of patients suffering are positively related to daily use of positive emotional regulations. Further, our results show that burnout buffers this relationship such that hospice professionals with high burnout use more emotional display in days where they recurrently witness patients suffering.
CONTEXT: Assessing consciousness and pain during continuous sedation until death (CSD) by behavior-based observational scales alone has recently been put into question. Instead, the use of monitoring technology has been suggested to make more objective and reliable assessments. Insights into which factors influence attitudes towards using these monitoring devices in a context of CSD is a first step in formulating recommendations to inform future practice.
OBJECTIVES: The aim of this study was to find out what influences professional caregivers' and family members' attitudes regarding the use of monitors during CSD.
METHODS: We conducted semi-structured face-to-face interviews with 20 professional caregivers and 15 family members, who cared for a patient or had a family member respectively who took part in a study using monitoring devices. Recruitment took place in an academic hospital, a loco-regional hospital and 2 nursing homes, all located in Belgium. Two researchers independently analysed the data, using grounded theory to inductively develop a model that represents the emerging attitude towards use of monitors during CSD.
RESULTS: Our model shows that the emerging attitudes towards using monitors during CSD is determined by view on CSD, desire for peace of mind, emotional valence attached to using monitors and the realization that the sole use of behavior-based observational measures could be unreliable in a CSD context. We identified several facilitators and barriers to inform future implementation strategies.
CONCLUSION: Most participants had no objections and all participants found the use of monitoring devices during CSD feasible and acceptable. We identified a number of facilitators and barriers and suggested that being aware that care can be improved, good communication, shared decision making and continuing professional education can overcome the identified barriers. We suggest future research would focus on developing implementation strategies and guidelines for introducing objective monitoring devices in diverse palliative care settings.
BACKGROUND: The aging of populations is rapidly accelerating worldwide. Especially, Japan has maintained the highest rate of population aging worldwide. As countermeasures, the Japanese government prioritized the promotion of local comprehensive care systems and collaboration in medical care and social (long-term) care. Development of a system to connect medical and social services in the community is necessary for the increasing older people, especially for the people in the stage of end of life.
OBJECTIVE: This study aimed to assess the effect of a multidisciplinary end-of-life educational intervention program on confidence in inter-professional collaboration and job satisfaction among health and social care professionals.
DESIGN: a cluster-randomized controlled trial.
SETTING/PARTICIPANTS: Three professional groups (home care nurses, care managers, and heads of care workers) in an urban area participated in this trial.
INTERVENTION: We implemented a multidisciplinary end-of-life educational intervention program comprising two educational workshops and an educational booklet to support multidisciplinary care for end-of-life patients during the 7-month study period.
MAIN OUTCOME MEASURE: Confidence in improved interactions among professionals and job satisfaction were assessed with the Face-to-Face Cooperative Confidence Questionnaire and the Minnesota Satisfaction Questionnaire at T1 (before intervention) and T2 (7 months after the intervention).
RESULTS: In total, 291 professionals participated in this study (experimental group n = 156; control group n = 135). Multivariate regression analyses showed significant between-group increases on all of seven subscales in participants' face-to-face cooperative confidence over the study period; no effect was evident regarding job satisfaction.
CONCLUSIONS: A multidisciplinary end-of-life educational intervention program increased confidence in multidisciplinary collaboration among health and social care professionals.
Nearly 20 years ago the EURONIC study reported that French neonatologists sometimes deemed it legitimate to terminate the lives of newborn infants when the prognosis appeared extremely poor. Parents were not always informed of these decisions. Major change has occurred since then and is described herein.
MATERIAL AND METHODS: A survey was conducted in the Île-de-France region, from 1 January to 31 January 2016. Professionals from 15 neonatal intensive care units (NICUs) were invited to complete a questionnaire.
RESULTS: A total of 702 questionnaires were collected and 670 responses were analyzed. Knowledge of the law differed according to professional status, with 71% of MDs (medical staff, MS), compared with 28% of nonmedical staff (NMS) declaring that they had good knowledge of the law. Most MDs and NMS believed that withholding or withdrawing life-sustaining treatments (WWLST) could be decided and implemented after a delay. Half of them thought that WWLST would always result in death. Although required by law, a consulting MD attended the collegial meeting required before deciding on WWLST in only half of the cases. Parents were almost always informed of the decision thereafter by the physician in charge of their infant. The most frequent disagreement with parents was observed when WWLST was the option selected. In this case, most professionals suggested postponing WWLST, continuing intensive care and dialogue with parents, aiming at a final shared decision. Major differences were observed between NICUs with regard to the withdrawal of artificial nutrition and hydration. Finally, 14% of MDs declared that infant active terminations of life still occurred in their NICU. Major differences concern WWLST and active termination of life, whose meaning has been partly modified since 2001.
CONCLUSION: Several major changes were observed in this survey: (1) treatment withdrawal decisions are made today in agreement with the law; (2) parents' information and involvement in the decision process have profoundly changed; (3) active termination of life (euthanasia) very rarely occurs; only at the end of a process in accordance with ethical principles and within the law is this decision made.
INTRODUCTION: Advance healthcare directives (AHDs) in mental health offer important information regarding service users' preferences. However, whether AHDs are truly understood by providers is questionable.
AIM: To survey the knowledge and attitudes of mental health professionals towards AHDs and examine any associations with socio-demographic and occupational variables.
METHOD: We cross-sectionally surveyed the knowledge and attitudes of 113 mental health professionals by using two validated questionnaires.
RESULTS: Participants showed very positive attitudes and high levels of knowledge about the conceptual definition and application of AHDs in clinical practice but their knowledge of the legalities, procedure and registration of AHDs was poor. Working in a community, having a career specializing in mental health, or having personally signed an AHD was associated with enhanced knowledge about them. Moreover, female sex or employment as an auxiliary nursing-care technician was associated with stronger positive attitudes.
DISCUSSION: Legal and structural changes will be needed to implement AHDs in Spain and to promote competence among healthcare providers in order to include AHDs in everyday practice.
IMPLICATIONS FOR PRACTICE: The Spanish mental healthcare system requires legal and structural changes and must improve healthcare providers' competence in AHDs before they are implemented.
BACKGROUND: Advance care planning and palliative care are gaining recognition as critical care components for adults with CHD, yet these often do not occur. Study objectives were to evaluate ACHD providers' 1) comfort managing patients' physical symptoms and psychosocial needs and 2) perspectives on the decision/timing of advance care planning initiation and palliative care referral.
METHODS: Cross-sectional study of ACHD providers. Six hypothetical patients were described in case format, followed by questions regarding provider comfort managing symptoms, initiating advance care planning, and palliative care referral.
RESULTS: Fifty providers (72% physicians) completed surveys. Participants reported low levels of personal palliative care knowledge, without variation by gender, years in practice, or prior palliative care training. Providers appeared more comfortable managing physical symptoms and discussing prognosis than addressing psychosocial needs. Providers recognised advance directives as important, although the percentage who would initiate advance care planning ranged from 18 to 67% and referral to palliative care from 14 to 32%. Barriers and facilitators to discussing advance care planning with patients were identified. Over 20% indicated that advance care planning and end-of-life discussions are best initiated with the development of at least one life-threatening complication/hospitalisation.
CONCLUSIONS: Providers noted high value in advance directives yet were themselves less likely to initiate advance care planning or refer to palliative care. This raises the critical questions of when, how, and by whom discussion of these important matters should be initiated and how best to support ACHD providers in these endeavours.
This paper follows on from a brief debate about the role of conscientious objection in healthcare, where the issue arose as to whether conscientious objection is (or can) be a tool of resistance against systemic injustice. The paper contributes to this debate by highlighting that some authors generally opposed to conscientious objection in healthcare have shown some support to this idea. Perhaps if there is one area in which all can agree, it is that in healthcare conscientious objection should be allowed so as to prevent cases of systemic injustice.
OBJECTIVES: Subjective well-being has been associated with decreased work burnout and elevated work engagement. We investigated the impact of hope and meaning in life on subjective well-being among workers in a hospice care setting. Comparison was made to health-care workers in a rehabilitation unit.
METHODS: Thirty-five hospice care workers were surveyed and their responses compared with those of 36 rehabilitation workers. Survey instruments measuring hope, meaning in life, work engagement, and satisfaction with life were utilized.
RESULTS: Individuals working in a hospice care center have significantly higher levels of work engagement than their counterparts in rehabilitation. For both groups, hope was significantly related to subjective well-being. For hospice care but not rehabilitation workers, meaning in life was also related to subjective well-being. Multivariate analysis showed that hope and meaning in life were independent factors predicting subjective well-being in hospice care workers.
SIGNIFICANCE OF RESULTS: Hospice care workers are highly engaged in their work despite the challenging nature of their work. What characterizes these workers is a level of subjective well-being that is related to both meaning in life and hope. Maintaining a high level of subjective well-being may be an important factor in preventing burnout among those working in hospice care settings.
PURPOSE: To describe key stakeholders' perspectives on specialist palliative care and its integration into the management of amyotrophic lateral sclerosis (ALS).
METHODS: The study conducted was a qualitative, noninterventional, descriptive study. Data were collected via individual interviews of 42 stakeholders (n = 14 patients, n = 16 family caregivers, and n = 12 health-care providers). Transcribed interviews were analyzed using inductive thematic analysis techniques.
RESULTS: Stakeholders' general impressions of specialist palliative care were highly variable. Many expressed limited or inaccurate understandings of palliative care's definition and purpose. Perceptions of palliative care as hospice were common. Stakeholders generally supported the integration of specialist palliative care into ALS management, and many recognized the value of early integration of palliative services in both the community and the clinical setting.
CONCLUSION: Key stakeholders readily identified a meaningful role for specialist palliative care in ALS management. Integration of specialist palliative care into existing systems of support would be facilitated by a more comprehensive understanding of the service among patients, family caregivers, and health-care providers.