Despite the potential benefits of open communication about possible desires to die for patients receiving palliative care, health professionals tend to avoid such conversations and often interpret desires to die as requests for medical aid in dying. After implementing trainings to foster an open, proactive approach toward desire to die, we requested trained health professionals to lead and document desire to die-conversations with their patients. In this article, we explore how trained health professionals experience an open (proactive) approach to desire to die-conversations with their patients.

Between April 2018 and March 2020, health professionals recorded their conversation-experiences on documentation sheets by answering seven open questions. A subsample was invited to offer deeper insights through semi-structured qualitative interviews. Interviews and documentation sheets were transcribed verbatim and analyzed thematically, then findings from both sources were compared and synthesized.

Overall, N = 29 trained health professionals documented N = 81 open desire to die-conversations. A subsample of n = 13 health professionals participated in qualitative interviews. Desire to die-conversations after the training were reported as a complex but overall enriching experience, illustrated in seven themes: (1) beneficial (e.g., establishing good rapport) and (2) hindering aspects (e.g., patients’ emotional barriers) of desire to die-conversations, (3) follow-up measures, (4) ways of addressing desire to die, as well as (5) patient reactions to it. The interviews offered space for health professionals to talk about (6) content of desire to die-conversation and (7) (self-)reflection (e.g., on patients’ biographies or own performance).

As part of an open (proactive) approach, desire to die-conversations hold potential for health professionals’ (self-)reflection and a deeper understanding of patient background and needs. They may lead to a strengthened health professional–patient relationship and potentially prevent suicide.

Family caregivers often feel insufficiently prepared for a caregiving role, experiencing challenges and demands related to care at home that may negatively affect their own quality of life. Supportive interventions have been shown to influence negative effects, but more studies are needed. Therefore, this study aims to explore potential effects of the Carer Support Needs Assessment Tool Intervention on preparedness, caregiver burden, and quality of life among Swedish family caregivers in specialized home care.

The study had a pre–post intervention design and was conducted at 6 specialized home care services in Sweden. Family caregivers who received the intervention completed a questionnaire, including the Preparedness for caregiving scale, Caregiver Burden Scale, and Quality of Life in Life-Threatening Illness – Family carer version, at 2 time points, baseline and follow up, about 5 weeks later. Data were analyzed using descriptive statistics and Wilcoxon signed-rank test.

Altogether, 33 family caregivers completed the baseline and follow-up assessment. A majority were retired (n = 26, 81%) and women (n = 19, 58%) and two-fifths had a university degree (n = 13, 41%). The family caregivers had significantly increased their preparedness for caregiving between the baseline and follow-up assessment (Mdn = 18 vs. 20, p = 0.002). No significant changes were found on caregiver burden or quality of life.

The results add to knowledge regarding the Carer Support Needs Assessment Tool Intervention’s potential to improve family caregiver outcomes. Findings suggest that the intervention may be used to improve the preparedness for caregiving and support among family caregivers in specialized home care.

Sexual self-concept has an influence on the sexual behaviors of women with breast cancer. Supportive programs for these women have demonstrable empirical efficacy; however, their effectiveness has not been examined. The aim of this study was to investigate the effect of a supportive program based on social networks on the sexual self-concept of women with breast cancer.

In this randomized controlled single-blind trial, 60 women were assigned to the intervention (n = 30) and control (n = 30) groups using permuted block randomization. Overall, eight 45-min intervention sessions were held (twice a week). The primary outcome was sexual self-concept, and the secondary outcomes were women's sexual quality of life and participants’ satisfaction. The questionnaires were completed by patients before the intervention and immediately and 1 month after the intervention.

The generalized equation estimation test showed that the positive sexual self-concept score of the intervention group versus the control group had increased by 15.67 points (P < 0.001, effect size = 2.00) 1 month after the intervention. The negative sexual self-concept score had decreased by 2.65 points (P < 0.001, effect size = 0.74), and the situational sexual self-concept score had upturned by 6.82 points (P < 0.001, effect size = 2.08) in the intervention group at the same period. Also, the sexual quality of life score in the intervention group compared to the control group generally increased by 13.82 points (P < 0.001, Effect size = 2.08) 1 month following the intervention.

A social networking support program can be a promising approach to improve the sexual self-concept of women with breast cancer.

Iranian Clinical Trial Register, IRCT20150608022609N8. Registered on 2 July 2020.

Millions of Americans may face hard decisions when it comes to providing nutrition for their loved ones with advanced dementia. This study aimed to ascertain whether there is a difference in feeding tube placement between White and Black patients with advanced dementia and whether this potential difference varied by patient's other demographic and clinical characteristics.

This is a retrospective, observational study conducted at Novant Health, a 15-hospital system in the southeastern United States. Data were obtained from Epic systems and included all hospital admissions with a diagnosis of advanced dementia, a total of 21,939, between July 1, 2015, and December 31, 2018. Descriptive statistics and logistics analyses were conducted to assess the relationship between receiving percutaneous endoscopic gastrostomy (PEG) and race, controlling for demographic and clinical characteristics.

Among patients admitted with advanced dementia, the multivariable logistic regression, controlled for age, gender, LOS, palliative care, and vascular etiology showed that Blacks had higher odds of having PEG tubes inserted than White patients (OR 1.97; CI 1.51–2.55; P < 0.001). Patients with longer stays had higher odds of PEG tube insertion. Females had lower odds of PEG tube insertion than males. There was no statistical significance in PEG insertion based on age, etiology, and palliative care consult.

The reasons for the observed higher odds of receiving PEG tubes among Black patients than White patients are likely multifactorial and embedded in a different approach to end-of-life care conversations by providers and caregivers of Black and White patients. Providers may need to be more aware of potential unconscious biases when talking to caregivers, especially in race-discordant relationships, have courageous conversations with caregivers, and be more aware of the importance of keeping in mind families’ and caregivers’ culture, including spirituality, when making end-of-life decisions.

This paper aims to explore the extent to which the “revivalist” discourse of a good death, which promotes an awareness of dying shapes the lived realities of palliative care patients and their families in Portugal.

An ethnographic approach was developed. Participant observation was carried out in 2 palliative care units, and this was complemented by in-depth interviews. Ten terminally ill patients, 20 family members, and 20 palliative care professionals were interviewed.

The “revivalist” good death script might not be suitable for all dying people, as they might not want an open awareness of dying and, thereby, the acknowledgment of imminent potential death. This might be related to cultural factors and personal circumstances. The “social embeddedness narrative” offers an alternative to the “revivalist” good death script.

The “revivalist” discourse, which calls for an open awareness of dying, is not a cultural preference in a palliative care context in Portugal, as it is not in accord with its familial nature.

The importance of spirituality in the dying process is well documented. However, what spirituality means in these situations is hard to discern because few people (patients, families, researchers, or caregivers) will view spirituality in the same way. The present research supports the use of a spiritual framework consisting of five common attributes (meaning, beliefs, connections, self-transcendence, and value) as a mechanism for viewing spirituality for people nearing the end of life. Using qualitative interviews from two related studies, our study aims to describe the prevalence of spirituality and its nature according to these five spiritual attributes.

Data from two previous studies were analyzed. The first employed the methods of grounded theory to understand the strategies adolescents used to manage the impending death of a parent. Some 61 participants from 26 families were interviewed, including ill parents/patients, well parents/caregivers, and adolescents. The second study consisted of 15 interviews with the surviving parent and adolescents from 6 of these families after the death of the parent.

The original research from which these data were drawn did not seek to describe spirituality. However, spiritual themes were prevalent in the stories of many participants and included each of the five spiritual attributes.

Our findings demonstrate the prevalence of spirituality in the everyday lives of these families and supports the use of the spiritual framework according to the five common attributes to describe spirituality.

Delirium is a neuropsychiatric condition characterized by acute change in cognition and disturbance of consciousness. A similar state during the final days of life is termed “terminal delirium.”

We present three cases with end-stage chronic medical problems without any significant psychiatric history who were admitted to an inpatient psychiatric unit or a locked dementia unit for management of “depression,” “dementia,” or “psychosis.”

Early diagnosis of terminal delirium helps prevent patients, family members, and staff from undergoing severe emotional distress and facilitates appropriate end-of-life care.

The stigma associated with cancer has negative impacts on cancer patients as well as the general public, who have a potential risk of cancer. To the best of our knowledge, a validated measure to assess cancer stigma among the general Japanese population does not exist.

We translated the Cancer Stigma Scale (CASS) — a 25-item self-administered scale to evaluate stigma related to cancer — into Japanese and examined its psychometric properties. The Japanese version of CASS (J-CASS) was validated among a sample of the general Japanese population through an online survey to validate its test–retest reliability, internal consistency, and concurrent validity.

A total of 319 responses were included in the analysis. An exploratory factor analysis eliminated two original items but showed a six-factor model (Awkwardness, Severity, Avoidance, Policy Opposition, Personal Responsibility, and Financial Discrimination), which was similar to the original scale. Cronbach's alpha for each factor was satisfactory, ranging from 0.81 to 0.91. The internal correlation coefficients were above 0.70, except for Policy Opposition. The total and subtotal scores of each factor of the J-CASS were significantly associated with respondents’ age, gender, familiarity with cancer patients, and social desirability, demonstrating the scales’ good concurrent validity. A substantial proportion of the participants selected “unsure” for some items of the scale, suggesting a further need for refining the scale.

This study demonstrated that J-CASS is a reliable and valid measure for evaluating misconceptions and stigma toward cancer in the general Japanese population.

It can be assumed that patients' participation in a phase I study will have an important impact on their partners' life. However, evaluation of partners' experiences while patients are undergoing experimental treatment and of their well-being after the patient's death is lacking. We aimed to explore partners' experience of patients' participation in phase I studies and to investigate their well-being after a patient's death.

This was an observational study conducted after the patient's death. Partners of deceased patients who had participated in a phase I study completed a questionnaire designed by us for experience evaluation and the Beck Depression Inventory for Primary Care, the Hospital Anxiety and Depression Scale, the Inventory of Traumatic Grief, and the RAND-36 Health Survey.

The median age of the 58 participating partners was 58 years (range: 51–65), and 67% was female. Partners reported negative effects on patients' quality of life, but only 5% of partners regretted patients' participation. Approximately two years after the patients' death, 19% of partners scored for depression, 36% for psychological distress, and 46% for complicated grief, and partners generally scored significantly lower on social and mental functioning compared to normative comparators.

Although partners reported negative consequences on patients' quality of life, most did not regret patients' participation in the phase I studies. Prevalence of depression, psychological distress, and complicated grief seemed important problems after a patient's death, and these must be considered when shaping further support for partners of patients participating in phase I trials.

Palliative care (PC) is patient and family-centered supportive care intended to improve symptom management, reduce caregiver burden, coordinate care, and improve quality of life for patients diagnosed with serious illness. Optimally, PC is begun close to initial diagnosis and delivered in synchrony with disease-specific treatment until symptom relief or patient death. The purpose of this study was to examine cancer survivors’ knowledge and perceptions of PC using a nationally representative sample of US adults from the Health Information National Trends Survey (HINTS).

A total of 593 HINTS respondents reported a personal history of cancer and were included in the sample (55.56% female; mean age of 65.88 years, SD = 18.21; mean time from diagnosis 13.83 years, SD = 18.21). Weighted logistic regression models were conducted to identify correlates of PC knowledge.

Of the 593 cancer survivors in the sample, 66% (N = 378) reported that they had never heard of PC, 18% (N = 112) reported knowing a little bit about PC, and 17% (N = 95) reported knowing what PC is and could explain it to someone else. In multivariable analysis, survivors of color (Hispanic/Latino, Black, Asian, American Indian, and Pacific Islander), males, and those less educated were significantly less likely to report knowledge of PC. Among survivors who did report knowledge of PC, a lack of distinction between differing modes of supportive care exists.

These findings suggest a need to increase PC knowledge among cancer survivors with the ultimate goal of addressing disparities in PC acceptance and utilization.

With the ongoing expansion of palliative care services throughout the United States, meeting the needs of socioeconomically marginalized populations, as in all domains of healthcare, continues to be a challenge. Our specific aim here was to help meet some of these needs through expanding delivery of pain and palliative care services by establishing a new clinic for underserved patients and collecting descriptive data about its operation.

In November of 2014, the National Institutes of Health Clinical Center's Pain and Palliative Care Service (PPCS) launched a bimonthly offsite pain and palliative care outpatient clinic in collaboration with Mobile Medical Care Inc. (MobileMed), a private not-for-profit primary care provider in Montgomery County, Maryland, serving underserved area residents since 1968. Staffed by NIH hospice and palliative medicine clinical fellows and faculty, the clinic provides specialty pain and palliative care consultation services to patients referred by their primary care healthcare providers. A patient log was maintained, charts reviewed, and referring providers surveyed on their satisfaction with the service.

The clinic had 27 patient encounters with 10 patients (6 males, 4 females, aged 23–67) during its first 7 months of operation. The reason for referral for all but one patient was chronic pain of multiple etiologies. Patients had numerous psychosocial stressors and comorbidities. All primary care providers who returned surveys (n = 4) rated their level of satisfaction with the consultation service as “very satisfied” or “extremely satisfied.”

This brief descriptive report outlines the steps taken and logistical issues addressed to launch and continue the clinic, the characteristics of patients treated, and the results of quality-improvement projects. Lessons learned are highlighted and future directions suggested for the clinic and others that may come along like it.

Insomnia is a common, distressing, and impairing psychological outcome experienced by informal caregivers (ICs) of patients with cancer. Cognitive behavioral therapy for insomnia (CBT-I) and acupuncture both have known benefits for patients with cancer, but such benefits have yet to be evaluated among ICs. The purpose of the present study was to evaluate the feasibility, acceptability and preliminary effects of CBT-I and acupuncture among ICs with moderate or greater levels of insomnia.

Participants were randomized to eight sessions of CBT-I or ten sessions of acupuncture.

Results highlighted challenges of identifying interested and eligible ICs and the impact of perception of intervention on retention and likely ultimately outcome.

Findings suggest preliminary support for non-pharmacological interventions to treat insomnia in ICs and emphasize the importance of matching treatment modality to the preferences and needs of ICs.

Nursing students often encounter real-life trauma situations during their clinical experience and similar workplace environment and climate as professional nurses. This research was carried out to determine the reflections of the compassion fatigue levels of nursing final year students on their psychological resilience levels.

This research was conducted as descriptive and cross-sectional. The sample of the study consists of 250 final year nursing students. Data were collected using Personal Information Form, Compassion Fatigue Scale, and Resilience Scale. It was determined that the compassion fatigue and psychological resilience levels of nursing final year students were moderate.

It was determined that as the levels of compassion fatigue increased, psychological resilience decreased. A highly negative and significant correlation was found between the total and sub-dimension mean scores of compassion fatigue and psychological resilience (p = 0.001).

It was found that there was a negative and high level relationship between nursing students’ compassion fatigue levels and all its sub-dimensions and psychological resilience. Resilience can improve psychosocial functioning and professional performance, including for nursing students facing stressful clinical experiences. It is important to determine the compassion fatigue and psychological resilience levels of nursing students, to determine the existing problems, and to take initiatives for this.

Death literacy is a recent conceptualization representing both individual and community competence, for example, a set of knowledge and skills for engaging in end-of-life-related situations. Little is yet known about which factors are associated with death literacy. A cross-sectional survey using the Swedish version of the Death Literacy Index, the DLI-S, was therefore conducted to explore associations between death literacy and sociodemographic, health, and experience variables.

A quota sample of 503 adults (mean age 49.95 ± 17.92), recruited from an online Swedish survey panel, completed a survey comprising the DLI-S and background questions.

A hierarchical regression model with 3 blocks explained 40.5% of the variance in death literacy, F(22, 477) = 14.75. The sociodemographic factors age, gender, education, widowhood, and religious/spiritual belief accounted for 13.7% of the variance. Adding professional care factors contributed to an additional 15.8% of variance, with working in health care being significantly associated with death literacy. Including experiential factors explained another 11.0% of the variance, of which experiences of caring for and supporting dying and grieving people, both in a work, volunteer, or personal context, were positively associated with death literacy.

This study contributes a tentative explanatory model of the influence of different factors on death literacy, outlining both direct and indirect associations. Our findings also support the hypothesized experiential basis for death literacy development in the Swedish context. The moderate degree of overall variance explained suggests there may be additional factors to consider to better understand the death literacy construct and how its development may be supported.

The significance of spiritual care needs among chronic diseases patients has been emphasized across countries and cultures in many studies. However, there were few studies on spiritual care needs among elderly patients with moderate-to-severe chronic heart failure (CHF) in China.

To investigate spiritual care needs and associated influencing factors among elderly patients with moderate-to-severe CHF, and to examine the relationships among spiritual care needs, self-perceived burden, symptom management self-efficacy, and perceived social support.

A cross-sectional design was implemented, and the STROBE Checklist was used to report the study. A convenience sample of 474 elderly patients with moderate-to-severe CHF were selected from seven hospitals in Tianjin, China. The sociodemographic characteristics questionnaire, the Spiritual Needs Questionnaire Scale, the Self-Perceived Burden Scale, the Self-efficacy for Symptom Management Scale, and the Perceived Social Support Scale were used. Descriptive statistics, univariate, multiple linear regression, and Pearson's correlation analysis were used to analyze data.

The total score of spiritual care needs among 474 elderly patients with moderate-to-severe CHF was 37.95 ± 14.71, which was moderate. Religious belief, educational background, self-perceived burden, symptom management self-efficacy, and perceived social support were the main factors affecting spiritual care needs, and spiritual care needs were negatively correlated with self-perceived burden (r = −0.637, p < 0.01) and positively correlated with symptom management self-efficacy (r = 0.802, p < 0.01) and social support (r = 0.717, p < 0.01).

The spiritual care needs of elderly patients with moderate-to-severe CHF were moderate, which were influenced by five factors. It is suggested that clinical nurses, families, and society should take targeted spiritual care measures to improve patients’ symptom management self-efficacy and perceived social support from many aspects, and reduce self-perceived burden to meet their spiritual care needs and improve the quality and satisfaction of spiritual care in nursing practice.

Desire for death (DfD) is a complex and multifactorial dimension of end-of-life experience. We aimed to evaluate the prevalence of DfD and its associations, arising within the setting of a tertiary home-based palliative care (PC) unit.

Retrospective analysis of all DfD entries registered in our anonymized database from October 2018 to April 2020.

Of the 163 patients anonymously registered in our database, 122 met entry criteria; 52% were male, the average age was 69 years old; 85% had malignancies, with a mean performance status (PPS) of 56%. The prevalence of DfD was 20%. No statistical differences were observed between patients with and without DfD regarding sex, age, marital status, religion, social support, prior PC or psychological follow-up, type of diagnosis, presence of advanced directives/living will, time since diagnosis and PC team's follow-up time. Statistically significant associations were found between higher PPS scores and DfD (OR = 0.96; 95% confidence interval (CI) [0.93–0.99]); Edmonton Symptom Assessment Scale scores for drowsiness (OR = 4.05; 95% CI [1.42–11.57]), shortness of breath (OR = 3.35; 95% CI [1.09–10.31]), well-being (OR = 7.64; 95% CI [1.63–35.81]). DfD was associated with being depressed (OR = 19.24; 95% CI [3.09–+inf]); feeling anxious (OR = 11.11; 95% CI [2.51–49.29]); HADS anxiety subscale ≥11 (OR = 25.0; 95% CI [2.10–298.29]); will-to-live (OR = 39.53; 95% CI [4.85–321.96]). Patients feeling a burden were more likely to desire death (OR = 14.67; 95% CI [1.85–116.17]), as well as those who were not adapted to the disease (OR = 4.08; 95% CI [1.30–12.84]). In multivariate regression analyses predicting DfD, three independent factors emerged: higher PPS scores were associated with no DfD (aOR = 0.95; 95% CI [0.91–0.99]), while the sense of being a burden (aOR = 12.82; 95% CI [1.31–125.16]) and worse well-being (aOR = 7.72; 95% CI [1.26–47.38]) predicted DfD.

Prevalence of DfD was 20% and consistent with previous Portuguese evidence on DfD in PC inpatients. Both physical and psychosocial factors contribute to a stronger DfD.

This study examines the ability of the distress thermometer to accurately identify patients with higher symptoms, unmet needs and psychological morbidity.

Baseline data collected as part of a randomized controlled trial evaluating a nurse-led supportive care intervention for men with prostate cancer commencing radiotherapy at a specialist cancer hospital in Melbourne, Australia. Measures assessed global distress (DT), anxious and depressive symptomatology (HADS), prostate-cancer specific quality of life (EPIC-26), unmet supportive care needs (SCNS-SF34R) and cancer treatment-related concerns (CATS). Following descriptive and correlational analysis, hierarchical multiple regression was employed to examine the contribution of variable sets to explaining variance in DT scores.

Less than 20% of men reported DT scores of 4 or higher, indicating overall low distress. The DT accurately identified almost all men reporting HADS score indicative of anxious or depressive symptomatology, suggesting it accurately identifies psychological morbidity. Importantly, the DT identified a further group of distressed men, not identified by HADS, whose distress related to unmet needs and prostate cancer-specific issues, indicating the DT is superior in identifying other forms of distress. While the hierarchical multiple regression confirmed anxious and depressive symptomatology as the best predictor of distress score, many other scales are also good predictors of DT scores, supporting the argument that distress is multi-determined.

Nurses can be confident that the DT accurately identifies patients with psychological morbidity and importantly identifies other patients with distress who may require intervention. A distress score of 4 or higher identified participants with higher physical symptomatology, higher unmet needs, more concerns about treatment and poorer quality of life. The low prevalence of distress reaching cut off scores suggests nurses would not be overwhelmed by the outcomes of screening and could use the score to prioritise the patients who need greater attention at entry to radiotherapy services.

This study aimed to evaluate the methodological quality of systematic reviews and meta-analyses of mind–body interventions (MBIs) for the management of cancer-related fatigue.

A comprehensive search on multiple databases was conducted to identify relevant systematic reviews and meta-analyses published from January 2008 to December 2019. Two authors independently selected reviews, extracted data, and evaluated the methodological quality of included reviews using Assessing the Methodological Quality of Systematic Reviews (AMSTAR).

Sixteen reviews published between 2010 and 2018 were eligible for inclusion. The methodological quality of the 16 included systematic reviews was moderate (score 4–7) to high (score ≥ 8) on the 11-point AMSTAR scale. The most common methodological weaknesses were the lack of a list of excluded studies (n = 15, 93.8%) and a priori protocol (n = 2,87.5%). Furthermore, most of the systematic reviews did not search the gray literature for eligible studies (n = 13, 81.3%).

This study has revealed the need for high methodological quality systematic reviews on the MBIs for the management of cancer-related fatigue. Thus, further research should focus on methodologically strong systematic reviews by providing a priori design, not limiting the publication type, and providing an excluded primary studies list. Additionally, the researchers should conduct systematic reviews according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guideline.