Although palliative care is critical to managing symptoms, pain, and transitions to end-of-life care among those facing serious or chronic illness, it is often underused, which may be due to stigma associated with palliative care representing giving up fighting one's illness. The goal of the present studies was to test the theoretical framework of stigma within the context of palliative care to inform future work on intervention development that addresses potential barriers to palliative care utilization.

In study 1, participants (n = 152) had an oncologist describe two treatment options to a terminally ill cancer patient: (1) palliative care and (2) chemotherapy. Participants were then randomly assigned to read that the patient chose palliative care or chemotherapy. In study 2, these stereotypes about those receiving palliative care were examined as a potential mediator between perceived palliative care stigma and prospective palliative care use. Participants (n = 199) completed self-report measures of palliative care stigma, negative stereotypes about palliative care users, and prospective use of palliative care. Mediation analysis tested the mediational effects of stereotypes on the relationship between palliative care stigma and prospective usage of palliative care.

In study 1, those in the palliative care condition endorsed significantly higher levels of negative stereotypes about the patient, viewed the decision more negatively, and saw the patient as less afraid of death. In study 2, palliative care stigma was associated with less prospective usage of palliative care for self and for one's family member. This relationship was mediated by negative stereotypes about individuals receiving palliative care.

Results suggest that palliative care stigma exists (study 1) and that this stigma may be a barrier to the utilization of palliative care (study 2). Future research should examine stigma reduction as a potential intervention target to improve palliative care utilization.

Many cancer centers struggle to implement standardized distress screening despite the American College of Surgeons’ Commission on Cancer 2012 mandate for a distress screening program standard of care by 2015. This paper presents outcomes for the first cohort of participants (n = 36) of a Screening for Psychosocial Distress Program (SPDP), a 2-year training program designed to assist clinicians in implementing routine distress screening as mandated by the American College of Surgeons Commission on Cancer. Specifically, participants’ success with distress screening implementation, institutional barriers and facilitators to implementation, and the role of the SPDP are described.

This research followed a longitudinal pre- and posttest mixed methods design. An investigator-developed questionnaire collected qualitative (distress screening goals, institutional barriers and facilitators, facilitators associated with participation in the SPDP) and quantitative (level of goal achievement) data at 6, 12, and 24 months of participation in the SPDP. Conventional content analysis was applied to qualitative data. Mixed methods data analysis in Dedoose evaluated (1) types and number of distress screening goals, barriers, and facilitators, and (2) goal achievement at 6, 12, and 24 months of participation.

Ninety-five percent of distress screening implementation goals were completed after 2 years of participation. Most common institutional barriers to distress screening implementation were “lack of staff,” “competing demands,” and “staff turn-over.” Most common institutional facilitators were “buy-in,” “institutional support,” and “recognition of participants’ expertise.” The number of reported facilitators associated with SPDP participation was higher than the number associated with any institutional factor, and increased over time of participation.

Participating in training programs to implement distress screening may facilitate successful achievement of the Commission on Cancer's distress screening standard, and benefits seem to increase with time of participation. Training programs are needed to promote facilitators and overcome barriers to distress screening.

Spiritual care has formed an integral part of palliative care since its inception. People with advanced illnesses, however, frequently report that their spiritual needs are not attended to by their medical care team. The present study examines and describes the impact of a spiritual care training program on practice and cultural change in our Canadian hospice.

A qualitative case study approach was adopted to gather feedback from hospice staff and volunteers using purposive sampling. In-depth interviews were conducted, transcribed, and analyzed using thematic (semantic and latent) analysis.

Our data suggest that the program had a profound personal impact on attendees and contributed to a slight shift in practice patterns in our organization. Using a program not specifically tailored to our local and organizational cultural contexts resulted in some unanticipated challenges such as the range of tensions between personal and cultural boundaries. Although some people criticized parts of the program or questioned the program's value, a general agreement suggests that the program had a positive impact and meaningfully benefited our hospice. “What will happen next?” was the question most frequently voiced by interviewees.

Although the program may not have been a perfect fit for our organization, its use instigated a process of cultural change that unfolds today. The present study suggests that a systematic approach to spiritual care training that includes the concepts of workplace spirituality and sensitive practice offer useful frameworks for the development and implementation of spiritual care training in other institutions.

To determine the preliminary feasibility, acceptability, and effects of Meaning-Centered Grief Therapy (MCGT) for parents who lost a child to cancer.

Parents who lost a child to cancer and who were between six months and six years after loss and reporting elevated levels of prolonged grief were enrolled in open trials of MCGT, a manualized, one-on-one cognitive-behavioral-existential intervention that used psychoeducation, experiential exercises, and structured discussion to explore themes related to meaning, identity, purpose, and legacy. Parents completed 16 weekly sessions, 60–90 minutes in length, either in person or through videoconferencing. Parents were administered measures of prolonged grief disorder symptoms, meaning in life, and other assessments of psychological adjustment preintervention, mid-intervention, postintervention, and at three months postintervention. Descriptive data from both the in-person and videoconferencing open trial were pooled.

Eight of 11 (72%) enrolled parents started the MCGT intervention, and six of eight (75%) participants completed all 16 sessions. Participants provided positive feedback about MCGT. Results showed postintervention longitudinal improvements in prolonged grief (d = 1.70), sense of meaning (d = 2.11), depression (d = 0.84), hopelessness (d = 1.01), continuing bonds with their child (d = 1.26), posttraumatic growth (ds = 0.29–1.33), positive affect (d = 0.99), and various health-related quality of life domains (d = 0.46–0.71). Most treatment gains were either maintained or increased at the three-month follow-up assessment.

Overall, preliminary data suggest that this 16-session, manualized cognitive-behavioral-existential intervention is feasible, acceptable, and associated with transdiagnostic improvements in psychological functioning among parents who have lost a child to cancer. Future research should examine MCGT with a larger sample in a randomized controlled trial.

Palliative care training at basic, intermediate, and specialist levels, recommended by the World Health Organization (WHO), is challenging to access in resource-poor countries and regions. Providing support in this regard would seem a moral imperative for all countries with established palliative care education systems and a strong resource base. In collaboration with WHO European Office and European Association for Palliative Care, this paper looks into the educational requirements in palliative care at postgraduate level within Europe.

A survey was specifically designed to gather opinions and comments on elements of palliative care education from European experts. Participants were invited to assess the European Association for Palliative Care core competencies on a five-item scale and to define essential learning goals. Survey data were statistically analyzed using IBM SPSS Statistics Software. Qualitative data were thematically analyzed.

A total of 195 data sets were recorded; 82 were completed fully. The statistical analysis revealed a high agreement regarding the key elements of palliative care education. The thematic analysis indicated that at postgraduate level all healthcare providers need to (1) comprehend the palliative care philosophy, (2) be able to demonstrate the complex symptom assessment and management competencies, (3) be able to design care plans based on patients and families wishes integrating multiprofessional and interdisciplinary approaches, and (4) be able to listen and self-reflect.

According to the WHO, inadequate skills and capacities of healthcare workers are one of the four barriers hindering the access to palliative care. This paper contains a new and comprehensive list of learning goals essential for multidisciplinary postgraduate palliative care education. Besides highlighting the relevant competencies, the article provides best-practice toolboxes with teaching and assessment methods. The article comments on the WHO's palliative care definition and underpins the importance of the role of the education in knowledge development and skills acquisition.

Switzerland is among the few countries worldwide where a request for assisted suicide (AS) can be granted on the basis of a primary psychiatric diagnosis. Psychiatrists play an increasingly important role in this regard, especially when the request for AS arises in the context of suffering caused by severe and persistent mental illness (SPMI). The objective of the survey was to assess general attitudes among psychiatrists in Switzerland regarding AS requests from patients with SPMI.

In a cross-sectional survey of 1,311 German-speaking psychiatrists in Switzerland, participants were asked about their attitude to AS for patients with SPMI, based on three case vignettes of patients diagnosed with anorexia nervosa, treatment-refractory depression, or severe persistent schizophrenia.

From a final sample of 457 psychiatrists (a response rate of 34.9%) whose mean age was 57.8 years, 48.6% of respondents did not support access to AS for persons diagnosed with SPMI, 21.2% were neutral, and 29.3% indicated some degree of support for access. In relation to the case vignettes, a slightly higher percentage of respondents supported the patient's wish to seek AS: 35.4% for those diagnosed with anorexia nervosa, 32.1% for those diagnosed with depression, and 31.4% for those diagnosed with schizophrenia.

Although a majority of the responding psychiatrists did not support AS for SPMI patients, about one-third would have supported the wishes of patients in the case vignettes. In light of the increasing number of psychiatric patients seeking AS and the continuing liberalization of AS practices, it is important to understand and take account of psychiatrists’ perspectives.

Dignity therapy (DT) is designed to address psychological and existential challenges that terminally ill individuals face. DT guides patients in developing a written legacy project in which they record and share important memories and messages with those they will leave behind. DT has been demonstrated to ease existential concerns for adults with advanced-stage cancer; however, lack of institutional resources limits wide implementation of DT in clinical practice. This study explores qualitative outcomes of an abbreviated, less resource-intensive version of DT among participants with advanced-stage cancer and their legacy project recipients.

Qualitative methods were used to analyze postintervention interviews with 11 participants and their legacy recipients as well as the created legacy projects. Direct content analysis was used to assess feedback from the interviews about benefits, barriers, and recommendations regarding abbreviated DT. The legacy projects were coded for expression of core values.

Findings suggest that abbreviated DT effectively promotes (1) self-expression, (2) connection with loved ones, (3) sense of purpose, and (4) continuity of self. Participants observed that leading the development of their legacy projects promoted independent reflection, autonomy, and opportunities for family interaction when reviewing and discussing the projects. Consistent with traditional DT, participants expressed “family” as the most common core value in their legacy projects. Expression of “autonomy” was also a notable finding.

Abbreviated DT reduces resource barriers to conducting traditional DT while promoting similar benefits for participants and recipients, making it a promising adaptation warranting further research. The importance that patients place on family and autonomy should be honored as much as possible by those caring for adults with advanced-stage cancer.

Many bereaved siblings have still not come to terms with their grief many years after the loss, but few studies have focused on what can help. The aims of this study were to identify cancer-bereaved adolescents’ and young adults’ ways of coping with grief after loss of a sibling, and examine whether these ways of coping were related to their experience of having worked through their grief.

This nationwide survey of 174 cancer-bereaved siblings (73% participation rate) is based on one open-ended question about coping with grief (“What has helped you to cope with your grief after your sibling's death?”) and one closed-ended question about siblings’ long-term grief (“Do you think you have worked through your grief over your sibling's death?”). The open-ended question was analyzed with content analysis; descriptive statistics and Fisher's exact test were used to examine the relation between type of coping and siblings’ long-term grief.

The siblings described four ways of coping: (1) thinking of their dead brother/sister and feeling and expressing their grief; (2) distracting or occupying themselves; (3) engaging in spiritual and religious beliefs/activities; and (4) waiting for time to pass. One of these categories of coping with grief, namely, engaging in spiritual and religious beliefs and activities, was associated with siblings’ experience of having worked through their grief two to nine years after the loss (p = 0.016).

Those siblings who had used spirituality, religious beliefs, and activities to cope were more likely to have worked through their grief than those who had not.

The short-term impact of prolonged grief disorder (PGD) following bereavement is well documented. The longer term sequelae of PGD however are poorly understood, possibly unrecognized, and may be incorrectly attributed to other mental health disorders and hence undertreated.

The aims of this study were to prospectively evaluate the prevalence of PGD three years post bereavement and to examine the predictors of long-term PGD in a population-based cohort of bereaved cancer caregivers.

A cohort of primary family caregivers of patients admitted to one of three palliative care services in Melbourne, Australia, participated in the study (n = 301). Sociodemographic, mental health, and bereavement-related data were collected from the caregiver upon the patient's admission to palliative care (T1). Further data addressing circumstances around the death and psychological health were collected at six (T2, n = 167), 13 (T3, n = 143), and 37 months (T4, n = 85) after bereavement.

At T4, 5% and 14% of bereaved caregivers met criteria for PGD and subthreshold PGD, respectively. Applying the total PGD score at T4, linear regression analysis found preloss anticipatory grief measured at T1 and self-reported coping measured at T2 were highly statistically significant predictors (both p < 0.0001) of PGD in the longer term.

For almost 20% of caregivers, the symptoms of PGD appear to persist at least three years post bereavement. These findings support the importance of screening caregivers upon the patient's admission to palliative care and at six months after bereavement to ascertain their current mental health. Ideally, caregivers at risk of developing PGD can be identified and treated before PGD becomes entrenched.

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.

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.

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.

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.

In the emotionally intense field of healthcare, the ability to peacefully inhabit one's body, maintain good boundaries, and be fully present during care is essential. This study aimed to validate the recently developed Mindful Self-Care Scale (MSCS) among hospice and healthcare professionals and develop a brief version of the 33-item MSCS.

A sample of hospice and healthcare professionals from all 50 states (n = 858) was used. A confirmatory factor analysis was run using a rigorous methodology for validation and item reduction to develop a brief version of the 33-item MSCS. The brief MSCS (B-MSCS) was developed by identifying items for exclusion through examination of conceptual overlap, descriptive statistics by detecting sources of improvement model fit using confirmatory factor analysis. Model modifications were done sequentially and with regard to theoretical considerations.

The existing model, 33-item MSCS with six subscales, had good fit to the data with all indicators in acceptable ranges (chi-square/df = 3.08, df (480), p < 0.01, root mean square error of approximation = 0.059, comparative fit index = 0.915, Tucker and Lewis's index of fit = 0.907). Nine items were excluded on the basis of very low loadings and conceptual and empirical overlap with other items.

The final 24-item, B-MSCS model was consistent with the original conceptual model and had a closer fit to the data (chi-square/df = 1.85, df (215), p < 0.01, root mean square error of approximation = 0.041, comparative fit index = 0.961, Tucker and Lewis's index of fit = 0.955). In addition, the reliability, construct, and concurrent validity of the MSCS and B-MSCS were in the acceptable and good ranges, respectively. Mean and standard deviation of the MSCS and B-MSCS scores were similar; B-MSCS mean scores well approximated the MSCS scores. Informal mindful self-care, in the process of everyday life, was practiced more regularly and associated with increased wellness and reduced burnout risk than formal mind-body practices.

Understanding the way therapy works is a complex undertaking. Historically, such enquiry has been dominated by “outcomes” leading to a lack of discourse about clinical processes. In the cancer setting, identifying clinical process can be even more complex because of the added challenges of an ongoing illness. This study investigated the therapeutic processes used in a meaning-based intervention developed for the advanced cancer setting: Meaning and Purpose therapy.

Four sessions of therapy were delivered to 24 participants. Transcribed sessions (n = 96) of the intervention were analyzed by two independent researchers to describe participant themes, therapeutic processes, and patterns of change related to common points in the intervention.

Although both suffering and meaning were present in all sessions, when we tracked the focus of the content across sessions, there was a clear progressive shift toward meaning-centered content for all participants. This finding is in spite of the fact that all participants had progressive disease and were living with ongoing challenges.

Processes such as focusing on meaning, reflecting a sense of significance, joining with participants to explore their unique meaning, and directing them away from a preoccupation with suffering were identified as clear influences of a shift toward a meaning-based focus. These processes offer a fresh focus on meaning and a buffer to the distress of advanced cancer.

Family caregivers (FCs) in China provide hospice care to terminally ill cancer patients; however, few studies have been conducted in China on caregiver burden and bereavement experiences as a process that continues over time. The purpose of this study was to identify the main elements of caring and bereavement experiences for FCs caring for patients diagnosed with terminal cancer.

Twenty in-depth qualitative semistructured interviews were conducted with FCs providing care in a hospice unit in Shenzhen, Southern China. Interview transcripts were analyzed via thematic content analysis.

A framework based on the following eight principal themes was developed through content analysis of our FC interviews: symptoms of the illness, the truth-telling process, attitudes toward death, the “color” of death, social and professional support, the moment of death, and grief and loss.

The analysis showed that caregiving may positively or negatively influence the bereavement process.

Compassion fatigue (CF) is secondary traumatic distress experienced by providers from contact with patients' suffering. Burnout (BO) is job-related distress resulting from uncontrollable workplace factors that manifest in career dissatisfaction. Compassion satisfaction (CS) is emotional fulfillment derived from caring for others. The literature on BO in healthcare providers is extensive, whereas CF and CS have not been comprehensively studied. Because of ongoing exposure to patient and family distress, pediatric palliative care (PPC) providers may be at particular risk for CF. We conducted a cross-sectional pilot study of CF, BO, and CS among PPC providers across the United States.

The Compassion Fatigue and Satisfaction Self-Test for Helpers and a questionnaire of professional and personal characteristics were distributed electronically and anonymously to PPC physicians and nurses. Logistic and linear regression models for CF, BO, and CS as a function of potential risk factors were constructed.

The survey response rate was 39%, primarily consisting of female, Caucasian providers. The prevalence of CF, BO, and CS was 18%, 12%, and 25%, respectively. Distress about a “clinical situation,” physical exhaustion, and personal loss were identified as significant determinants of CF. Distress about “coworkers,” emotional depletion, social isolation, and “recent involvement in a clinical situation in which life-prolonging activities were not introduced” were significant determinants of BO. Physical exhaustion, personal history of trauma, “recent involvement in a clinical situation in which life-prolonging activities were not introduced,” and not discussing distressing issues were significant predictors of lower CS scores.

CF and BO directly influence the well-being and professional performance of PPC providers. To provide effective compassionate care to patients, PPC providers must be attentive to predictors of these phenomena. Further work is needed to explore additional causes of CF, BO, and CS in PPC providers as well as potential interventions.