Professional values reflect nurses' understanding of how to deliver professional care, which might influence nurses' attitudes and caring behaviors during end-of-life care. However, limited research has been conducted to explore nurses' experiences of professional development during end-of-life care, and theoretical explanations are scarce about how nurses enact their professional values during the caring process. This study explored the social process of professional values involved in end-of-life care in the Chinese cultural context by adopting a constructivist grounded theory approach. Twenty semi-structured in-depth interviews among 15 nurses from three hospitals in southeastern China were conducted. A theoretical framework emerged when focusing on the social process of "reframing the meaning of life and professional values" to facilitate professional care for dying patients. Three main categories were sequentially identified as "recognizing the dilemmas when caring for dying patients," "applying strategies to deal with values conflict," and "reconstructing values." This theoretical framework may be applied as a practical framework for equipping nurses with effective strategies to cultivate professional values, including the provision of adequate end-of-life knowledge, and a supportive workplace environment.
Background: The demands on healthcare professionals caring for families grappling with a life-limiting condition in an unborn or newly born child can be overwhelming. Clinicians working in emergency/trauma, hospice, and pediatric settings are already at high risk for burnout and compassion fatigue, which can leave healthcare institutions increasingly vulnerable to poor retention, absenteeism, and waning quality of care. The provision of exemplary palliative care requires a cohesive interdisciplinary team of seasoned professionals resilient to daily challenges. In September 2019, the American College of Gynecology, in a committee opinion, published standard of care guidelines for perinatal palliative care. This has created an impetus for exceptional caregiving and a greater demand for both physician and interdisciplinary healthcare provider education, training, and ongoing support that promotes truly beneficent care for pregnant patients confronted with life-limiting fetal conditions.
Methods: A scoping review of the research literature was conducted in order to distinguish the barriers and facilitators of professional resiliency in perinatal palliative care. PubMed, Medline, CINAHL, and EBSCO Psychology & Behavioral Sciences Collections were systematically reviewed. Because of the paucity of studies specific to perinatal palliative care, several interviews of nurses and physicians in that field were conducted and analyzed for content distinctly pertaining to personal practices or workplace factors that support or hinder professional resiliency.
Results: The research indicated that medical professionals often cite a lack of knowledge, inexperience using effective communication skills related to perinatal palliative care and bereavement, challenges with interdisciplinary collaboration, misconceptions about the role and function of palliative care in the perinatal or neonatal settings, moral distress, and workload challenges as encumbrances to professional satisfaction. Strategic implementation of facility-wide bereavement care training, effective communication modalities, and evidenced-based practical applications are critical components for a thriving perinatal palliative care team. Authentic formal and informal debriefing, peer mentoring, adequate caseloads, robust provider self-care practices, exceptional relational efficacy, and cultural and spiritual humility can foster personal growth and even vicarious resilience for perinatal palliative care professionals.
Conclusions: Support should be strategic and multifaceted. The onus to implement salient measures to cultivate resilience in the perinatal palliative caregiver should not be only upon the individuals themselves but also upon prevailing regulatory governing bodies and healthcare institutions.
STUDY AIMS: 1) To characterize distinct profiles of cancer caregivers' physical and mental health during the end-of-life caregiving period; 2) to identify the background and antecedent factors associated with the distinct profiles of caregivers; 3) to determine the relevance of caregiver profiles to the risk for developing prolonged grief symptoms.
DESIGN & METHODS: This study was a secondary analysis of spouses/partners (n = 198) who participated in the Cancer Caregiver Study. Latent profile mixture modeling was used to characterize caregiver health profiles from data collected prior to their spouse's death. Regression analyses were used to determine the impact of caregiver health profiles on the risk of developing prolonged grief symptoms (PG-13 scale).
RESULTS: Two health profiles were identified, one of which was comprised of a minority of caregivers (n = 49; 25%) who exhibited higher anxiety and depressive symptoms, greater health impact from caregiving, more self-reported health problems, and greater difficulty meeting physical demands of daily activities. Caregivers who were observed in this poorer health profile had significantly lower levels of active coping (p < 0.001) in adjusted models. Additionally, according to subsequent bereavement data, caregivers' preloss health profile was a significant predictor of developing prolonged grief symptoms (p = 0.018), controlling for caregivers' age (p = 0.040) and amount of active coping (p = 0.049), and there was a mediating effect of caregiver health on the relationship between active coping and prolonged grief symptoms.
CONCLUSIONS: Caregiving and bereavement should not be considered separately; caregivers adapt to bereavement with the resources and coping attained throughout the life course, culminating in the experience of providing end-of-life care. Interventions aimed at supporting caregivers and bereaved persons should focus on maintaining physical and mental health during stressful life transitions, and especially during the period in which they are providing care to a spouse at end-of-life.
Nurses play a central role in delivering palliative care, given their influence on the quality of care provided (Montgomery, Sawin, & Hendricks-Ferguson, 2016). They are professionals of choice when it comes to assessing disease symptoms or psychological distress, ensuring symptoms are managed effectively, as well as accompanying patients and families through the decision-making process regarding both adult and pediatric care (Contro, Larson, Scofield, Sourkes, & Cohen, 2004). Optimal palliative care practices can prevent or alleviate the suffering of patients of all ages at the end of life, particularly if the care includes the assessment of symptoms and provides the patient and his or her family with psychological and social support (Qaseem et al., 2008). Although the majority of patients receiving palliative care are adults, more than 4,000 children in Canada have an incurable disease for which they will require quality palliative care (Widger, Cadell, Davies, Siden, & Steele, 2012). However, a number of studies carried out with nurses have revealed that they experience anxiety with regard to the pediatric palliative care (PPC) they deliver (Mullen, Reynolds, & Larson, 2015) and difficulties communicating with families of patients (Montgomery et al., 2017), as well as managing their emotions when they attend to a child who is at the end of life (Roberts & Boyle, 2005). Based on the first hypothesis suggested by Contro et al. (2004), such behaviour can be explained by a lack of knowledge regarding PPC.
Les décès sont potentiellement fréquents à l’hôpital et notamment en gériatrie. Les internes en médecine se déclarent en difficulté pour assurer un accompagnement médical de qualité dans les situations de fin de vie. Afin de les soutenir dans leur formation clinique nous rapportons l’expérience d’ateliers d’expression mensuels, neutres, confidentiels pour leur permettre d’adapter leur pratique et prévenir les risques psychosociaux inhérents à la confrontation avec la mort.
Background: Outpatients with cancer commonly have nonmedical opioid use (NMOU) behaviors and use opioids to dull emotional and existential suffering. Buprenorphine is often used for cancer pain due to less reported euphoria when compared to other opioids.
Methods: A retrospective review was done in patients who were prescribed buprenorphine for cancer pain. Pain scores were reported on a Likert pain scale of 1 to 10. Nonmedical opioid use was defined as patients taking opioids for emotional pain at or above the maximum prescribed amount.
Results: For 16 patients, the mean pain score prior to buprenorphine (pain pre) was 8.3 (Standard deviation (Std) 1.6), and the mean pain score on follow-up post-buprenorphine (pain post) was 6.1 (Std 2.3) with a reduction in mean pain score (pain change) of -2.0 (Std 2.9, P = .059). Those patients without NMOU had a pain prescore of 9.5 (Std 1.0) and pain post of 4.3 (Std 2.5) with a mean pain change of -5.0 (Std 1.7, P = .20). The mean pain change in those with chemical coping (-1.3/Std 2.7), illicit drug use (-2.8/Std 1.0), or psychiatric comorbidity (-2.4/Std 2.7) were reduced after buprenorphine, however, not statistically significant. Outpatient rotation to buprenorphine was well tolerated.
Conclusions: The pain score in those patients without NMOU was significantly lower after rotation to buprenorphine than those with NMOU. We deduce that in those with NMOU, it is more challenging to achieve pain relief with buprenorphine. Overall, for all patients, rotation to buprenorphine resulted in a marginally significantly reduced pain score.
INTRODUCTION: End-of-life care (EOLC) is necessary for patients who are not expected to live long. Nurses have positive attitudes toward EOLC, but they encounter difficulties in practice. That situation creates conflict, which can affect burnout. It is essential to manage nurses' conflict about their ability to practice EOLC by enhancing their individual strengths. Focusing on the role of self-compassion may help to prevent burnout related to the conflict about ability to practice EOLC.
OBJECTIVE: The study aim was to assess the mediating effect of self-compassion on the association between conflict about ability to practice EOLC and burnout.
METHODS: A correlational study was conducted with emergency department nurses who practiced EOLC. Self-report measures of conflict about ability to practice EOLC, burnout, and self-compassion were obtained.
RESULTS: Negative aspects of self-compassion mediated the relationship among conflict, emotional exhaustion, and depersonalization (burnout). Self-compassion did not mediate the association between conflict and reduced personal accomplishment (burnout).
CONCLUSIONS: Negative aspects of self-compassion mediated the relationship between conflict and burnout (excluding reduced personal accomplishment). To prevent burnout, it is necessary to screen for nurses with low self-compassion and to provide opportunities to change their cognitive recognition and disclose their conflicts.
AIMS: To evaluate how nurses cope with the death of a paediatric patient, relate it to the different sociodemographic variables, and to describe personal coping strategies used by nurses in managing the process and accepting the death of the patient.
METHODOLOGY: an observational, descriptive and cross-sectional study, carried out from January to June 2018 with nurses from the palliative care area, intensive care unit, neonatology and oncohaematology area of a tertiary paediatric hospital in Barcelona city. An ad hoc questionnaire was applied, divided into three parts: socio-demographic data, the Bugen scale of coping with death and two open questions.
RESULTS: 31.37% of the respondents faced the process of death of the paediatric patient adequately, while 33.33% did not cope well. The best coping was in paediatric palliative care, followed by paediatric oncohaematology, neonatology and, finally, the intensive care unit. In addition, the variables related to this coping are the work shift, the death of a loved one in less than 3 years and previous training. On the other hand, the age of the respondents, experience in the unit and having children are not related to coping. Moreover, the professionals surveyed demand more training to improve their coping in this area, as well as interdisciplinary sessions to discuss cases of deceased patients.
The terminal stage of disease in teenagers is extremely complex to manage. In this study, we share some stories of terminally ill adolescent patients who made use of illusion as a way to overcome their anguish in their final stages of illness. These experiences show how young patients can cope better with terminal illness by resorting to a nonrational and fictional dimension that can serve them as a psychological compromise, helping them tolerate their real everyday life by suspending their critical senses for a while. Illusions can serve as a resource for young patients and a potentially useful tool for medical professionals.
Critical care nurses frequently provide end-of-life and bereavement care. This type of care is rewarding, but can put nurses at risk for moral distress, compassion fatigue, and burnout. By incorporating self-care into their routine, critical care nurses minimize this risk and maintain their own health and well-being. This article provides suggestions for promoting physical, emotional, and spiritual self-care for nurses caring for dying intensive care unit patients and their families. A case scenario illustrates the importance of this concept. Practical examples of self-care are highlighted along with discussion on how leadership can support self-care and maintain a healthy work environment.
Background: Research on what children wished they had done differently after their sibling's death has not been reported.
Objective: Examine what children wished they had/had not done, and their coping after a sibling's neonatal/pediatric intensive care unit/emergency department (NICU/PICU/ED) death.
Design: Qualitative data are part of a longitudinal mixed methods study of 6- to 18-year-olds interviewed at 2, 4, 6, and 13 months after a sibling's death.
Setting/Subjects: Ninety-five school-aged children and 37 adolescents (58% female; 30% Hispanic, 50% black, 20% white).
Measurements: Children responded to three open-ended questions: Thinking about your sibling's death, are there things you wish you (1) had done? (2) had not done? (3) What do you do to deal with your sibling's death? Conventional content analysis procedures were used.
Results: Children wished they had spent more time, talked and played more with their sibling, saved their sibling, taken care of their sibling more, and been able to see their sibling grow up. They wished they had not been mean/yelled at their sibling, complained/argued with mother about their sibling, and kept their feelings inside. Children coped by talking with family, friends, and the deceased; playing, reading, watching TV; avoiding thoughts about and remembering their sibling; crying, keeping calm, praying; living for their sibling. Resuming their usual activities, trying to be happy, and laughing also helped children cope.
Conclusions: Children commented more about what they wish they had done (n = 317) and less about what they wish they had not done (n = 107). Children talked to others and tried resuming usual activities to cope.
Background: Being next-of-kin to someone with cancer requiring palliative care involves a complex life situation. Changes in roles and relationships might occur and the next-of-kin thereby try to adapt by being involved in the ill person’s experiences and care even though they can feel unprepared for the care they are expected to provide. Therefore, the aim of this study was to develop a classic grounded theory of next-of-kin in palliative cancer care.
Method: Forty-two next-of-kin to persons with cancer in palliative phase or persons who had died from cancer were interviewed. Theoretical sampling was used during data collection. The data was analysed using classic Grounded Theory methodology to conceptualize patterns of human behaviour.
Results: Constructing stability emerged as the pattern of behaviour through which next-of-kin deal with their main concern; struggling with helplessness. This helplessness includes an involuntary waiting for the inevitable. The waiting causes sadness and frustration, which in turn increases the helplessness. The theory involves; Shielding, Acknowledging the reality, Going all in, Putting up boundaries, Asking for help, and Planning for the inescapable. These strategies can be used separately or simultaneously and they can also overlap each other. There are several conditions that may impact the theory Constructing stability, which strategies are used, and what the outcomes might be. Some conditions that emerged in this theory are time, personal finances, attitudes from extended family and friends and availability of healthcare resources.
Conclusions: The theory shows the complexities of being next-of-kin to someone receiving palliative care, while striving to construct stability. This theory can increase healthcare professionals’ awareness of how next-of-kin struggle with helplessness and thus generates insight into how to support them in this struggle.
Aim: Understanding of coping strategies that parents use before the death of their child is crucial, and will enable us to best provide support. The current study aimed to explore parents’ coping strategies, and map these onto an existing theoretical framework.
Methods: Bereaved parents and parents of a child with a life-limiting/threatening condition were interviewed to investigate coping strategies, recruited through Intensive Care Units (2 Neonatal, 2 Paediatric, 1 Paediatric Cardiac), and a children’s hospice. Analysis focused on coping strategies, and mapping these onto the framework.
Results: 24 parents of 20 children were interviewed, and identified Parents use a variety of coping strategies (n=25) such as humour, staying positive, advocating and staying strong for others, expressing emotions and preparing, while also living life to the full, supported by others. The themes were successfully mapped onto the theoretical framework, which focuses on the constructs of approach and avoidance, as well as coping for self and others.
Conclusion: The findings have provided a detailed account of the breadth and depth of coping strategies parents use, including those classed as avoidance. The strategies were successfully mapped onto the theoretical framework. Future research should investigate changes over times, and associations to negative long-term outcomes.
Background: The COVID-19 pandemic has created an environment in which existence is more fragile and existential fears or terror rises in people.
Objective: Managing existential terror calls for being mature about mortality, something with which palliative care providers are familiar and in need of greater understanding.
Methods: Using a case to illustrate, we describe existential terror, terror management, and existential maturity and go on to outline how existential maturity is important for not only the dying and the grieving but for also those facing risk of acquiring COVID-19.
Results: Next, we describe how essential components in attaining existential maturity come together. (1) Because people experience absent attachment to important people as very similar to dying, attending to those experiences of relationship is essential. (2) That entails an internal working through of important relationships, knowing their incompleteness, until able to “hold them inside,” and invest in these and other connections. (3) And what allows that is making a meaningful connection with someone around the experience of absence or death. (4) We also describe the crucial nature of a holding environment in which all of these can wobble into place.
Discussion: Finally, we consider how fostering existential maturity would help populations face up to the diverse challenges that the pandemic brings up for people everywhere.
Background: There is insufficient information on how the burden of caregiving is affected when the family caregiver is a health professional. Studies are needed to investigate this issue.
Aims: The purpose of this study was to reveal difficulties experienced by a nurse family caregiver offering care to a family member diagnosed with end-stage cancer and how she coped with these difficulties.
Methods: This was an autoethnographic study.
Findings: Findings were grouped under three headings: being both a researcher and a subject; effects of caregiving; and coping.
Conclusions: Offering care to a cancer patient has many physiological and psychological effects. If a family caregiver is a health professional, his/her caregiving burden can be even higher. Cultural values affect both life and coping ways of caregivers. It should be kept in mind that family caregivers need support from health professionals whatever their occupations are. Support to caregivers plays an important role in their coping.
Context: Patients with advanced cancer face a life-limiting condition that brings a high symptom burden that often includes pain, fatigue, and psychological distress. Psychosocial interventions have promise for managing symptoms but need additional tailoring for these patients' specific needs. Patients with advanced cancer in the community also face persistent barriers—availability of interventions in community clinics as well as financial and illness-related factors—to accessing psychosocial interventions.
Objectives: The aim of the present study was to assess the feasibility and acceptability of telephone implementation of Engage, a novel brief combined Coping Skills Training and Acceptance and Commitment Therapy protocol, for reducing symptoms and increasing quality of life in community patients with advanced cancer.
Methods: Adult patients with advanced cancer receiving care in the community received Engage, four 60-minute manualized telephone sessions delivered by a trained psychotherapist and completed pretreatment and post-treatment assessments.
Results: Engage was feasible, achieving 100% accrual (N = 24) of a heterogeneous sample of patients with advanced cancer, with good retention (88% completed). Acceptability was demonstrated via satisfaction (mean 29 of 32; SD 2), engagement (95% attendance), and use of skills. Secondary analyses pointed to reductions in pain interference, fatigue, psychological distress, and improvements in psychological acceptance and engagement in value-guided activity after treatment.
Conclusion: Engage, our brief novel combined Coping Skills and Acceptance and Commitment Therapy intervention, demonstrated initial feasibility and acceptability when delivered over the telephone and increased access for community clinic patients with advanced cancer. Future research will assess the comparative efficacy of Engage in larger randomized trials.
Elisabeth Kübler-Ross' seminal 1969 work, On Death and Dying, opened the door to understanding individuals' emotional experiences with serious illness and dying. Patient's emotions, however, are only half the story in the patient-physician relationship. In recent years physicians' emotional reactions have gotten more attention. These sometimes-unacknowledged emotions influence how we approach our work, including life and death decisions. This article reviews some of the main emotions physicians experience when caring for seriously ill and dying patients and the challenges physicians face in regulating their emotions in a professional setting. We also discuss some of the ways that physician emotion may influence medical decision-making and contribute to conflict. Attention to the emotional level of physician experience may promote better care.
Prolonged grief disorder, characterized by severe, persistent, and disabling grief, has recently been included in the International Classification of Diseases-11 (ICD-11). Emotional disturbances are central to such complicated grief responses. Accordingly, emotion regulation is assumed critical in the development, persistence and treatment of complicated grief. Yet, a comprehensive review on this topic is lacking. We conducted a systematic review (PROSPERO: CRD42017076061) searching PsychInfo, Web of Science and PubMed to identify quantitative research examining relationships between emotion regulation and complicated grief. Sixty-four studies on 7715 bereaved people were identified, focusing on a variety of emotion regulation strategies (i.e., experiential avoidance, behavioral avoidance, expressive suppression, rumination, worry, problem solving, cognitive reappraisal, positive thought, and mindfulness). Our synthesis showed strong evidence that experiential avoidance and rumination play a role in the persistence of complicated grief. More generally, surveys support positive associations between putative maladaptive emotion regulation strategies and complicated grief, and negative associations between putative adaptive emotion regulation strategies and complicated grief. Laboratory research yielded mixed results. Emotion regulation is critical in complicated grief, and in particular experiential avoidance and rumination form important targets in complicated grief treatments. We advise expanding current knowledge, by employing more advanced, intensive data collection methods and experiments across diverse samples. Increasing knowledge in this domain will improve clinical practice.
Context: Doctors caring for patients with life-limiting illness are often exposed to emotional distress.
Objectives: We aimed to explore the experiences and perceptions of junior doctors working full time in a palliative care rotation. We examined the lessons junior doctors learnt in managing their emotions as they face patients' death on a daily basis.
Methods: We conducted a qualitative study with seven focus group discussions involving 21 junior doctors (medical officers and residents). Data were analyzed using qualitative thematic analysis to identify the themes related to the perceived challenges of these junior doctors and how they managed the struggles. Interviews were conducted with junior doctors who spent at least two months in a palliative care unit in a tertiary hospital or an inpatient hospice.
Results: junior doctors caring for dying patients in a palliative care rotation faced internal conflicts. Conflicting feelings arose because of differing expectations from their preconceived notions of their roles as doctors. Two main themes of internal struggles were professional distancing and emotional detachment as well as prognostic uncertainty and when to withhold and withdraw medical treatments. Coping strategies that helped included mentoring and role modeling provided by palliative care physicians, reframing their care experiences and reflection to find meaning in their work.
Conclusion: A palliative care rotation exposes junior doctors to emotionally overwhelming experiences. With proper guidance, this exposure is useful in teaching junior doctors important coping strategies, allowing learning to occur at a deeper level.
Objective: to explore self-perception competence among Spanish nurses dealing with patient death and its relationship with work environment, evidence-based practice, and occupational stress.
Method: a cross-sectional web-based survey collected information from a convenience sample of 534 nurses from professional Spanish Colleges who answered four validated questionnaires: Coping with Death Scale, Practice Environment Scale of the Nursing Work Index, Perception of Evidence-Based Practice (EBP) and Nursing Stress Scale.
Results: a total of 79% of the participants were women, the average age was 40 years old, 38% had a postgraduate degree and 77% worked in public health settings. Many nurses evaluated their work environment as unfavorable (66%), reported high occupational stress (83.5±14.9), and had high scores on knowledge/skills in EBP (47.9±11.3). However, 61.2% of them perceived an optimal coping (>157 score). The multivariate logistic model indicated positive associations with work environment and EBP characteristics (OR: 1.30, p=0.054; OR: 1.04, p=0.007; OR: 1.13, p<0.001, respectively) but negative associations with occupational stress and short work experience (OR: 0.98, p=0.0043; OR: 0.74, p<0.002, respectively). These factors explained 23.1% of the coping variance (p<0.001).
Conclusion: although most nurses perceived optimal coping, the situation could be enhanced by modifying several contextual factors. The identification of these factors would improve the quality of end-of-life care by facilitating nursing management.