We identified types of interventions used by bereaved family members and examined associations with demographic and medical factors. Furthermore, we examined associations between distress and intervention use among bereaved families.

Bereaved families (n = 85) were recruited from three children's hospitals 3–12 months after their child died of cancer. One eligible sibling (ages 8–17) per family was randomly selected for participation. During home visits 1-year post-death, parents reported on their own and the sibling's intervention use, helpfulness, and dose (self-help books, support groups, therapy, medication), and distress, defined as internalizing, externalizing, and total problems (Adult Self Report, Child Behavior Checklist).

Fifty percent of mothers used medications (n = 43); utilization was low among fathers (17%, n = 9) and siblings (5%, n = 4). Individuals with more total problems were more likely to use medications (mothers: rpb = 0.27; p = 0.02; fathers: rpb = 0.32; p = 0.02; siblings: rpb = 0.26; p = 0.02). Mothers and siblings with more total problems used more services (r = 0.24; p = 0.03 and r = 0.29; p = 0.01, respectively). Among mothers, the overall regression was significant, R2 = 0.11, F(2, 80) = 4.954, p = 0.01; the deceased child's age at death was significantly associated with total services used (b = 0.052, p = 0.022). Among fathers, the overall regression was significant, R2 = 0.216, F(3, 49) = 4.492, p = 0.007; race and years of education were significantly associated with total services used (b = 0.750, p = 0.030 and b = 0.154, p = 0.010). Among siblings, the overall regression was significant R2 = 0.088, F(2, 80) = 3.867, p = 0.025; greater total problems were significantly associated with total services used (b = 0.012, p = 0.007).

Although few background factors were related to intervention use, bereaved mothers and siblings may seek services if they have more distress. Healthcare providers should be aware of the types of services that are most often utilized and helpful to bereaved families to connect them with appropriate resources. Future research should investigate other predictors of intervention use and outcomes after the death of a child.

The characterization of clinical–emotional aspects of advanced cancer patients is essential for palliative care. To date, there is scarce information regarding the socio-demographic and clinical profiles, as well as the quality of care given to hospitalized patients under this condition, particularly in South American countries. The objectives of this study were to analyze the socio-demographic profile, symptoms (including psychological well-being), and the quality of life of advanced cancer patients admitted to the oncology ward of the General Hospital of the University of Campinas, Brazil.

In this cross-sectional study, patients were invited to fill the selected questionnaires such as Edmonton Symptom Assessment Scale (ESAS) and Palliative Care Outcome Scale (POS). Descriptive analyses were performed, regarding socio-demographic profile, symptoms, level of information over treatment aims, and quality-of-life scores.

Fifty-nine patients were included, of whom 29 were male and 30 female, with a mean age of 58 years. Overall, 31.9% presented pain at the time of the interview, 52.5% depression, and 76.3% anxiety. The median individual scores for ESAS and POS (and interquartile range) were, respectively, 27 (17–41) and 14 (9–19). Patients with previous knowledge of treatment objectives reported worse depression scores in the ESAS (median 2 vs. 0, p 0.02), even when correcting for possible confounders.

In contrast to current literature, in which pain is a prevalent report, depression and anxiety were more evident in this specific population of hospitalized patients. This framework reflects the need for valuing not only physical but also emotional symptoms to achieve the integrality of care.

There is a growing consensus that patient-centered care is more effective in treating patients than a strictly biomedical model, where there are known challenges to involving the patient in assessments, treatment goals, and determining preferred outcomes.

The current study seeks to integrate patient values and perspectives by exploring how people diagnosed with a life-limiting disease define healing in their own words.

As a part of a larger study that included cognitive interviewing, we asked the question “what does the word healing mean to you?” Data were collected during face-to-face interviews with patients from three metropolitan healthcare facilities.

Thirty participants responded to the question “what does healing mean to you?” Seven themes were identified through the data analysis. These themes include acceptance, feeling better, pain, social support, process, religion/spirituality, and make whole. The feeling better, pain, and process themes have subthemes.

Probing to understand patient perspectives and how to provide a holistic approach to care is essential to patient treatment. Patients defined healing in a broader way than how it is typically defined in literature. The patients’ definitions provide greater insight into perceptions and expectations regarding the healing process.

End-of-life dreams and visions (ELDVs) have been reported throughout history. We aimed to synthesize the research literature on ELDVs to determine the proportions of patients, bereaved families, healthcare professionals, and volunteers reporting ELDVs; ELDV content, timing, and interpretation; and any evidence-based approaches to ELDV-related care.

A systematic review protocol was registered with PROSPERO (CRD4021282929). CINAHL, Medline, Embase, Emcare, and APA PsycInfo were searched for peer-reviewed English language articles reporting qualitative, quantitative, or mixed methods studies that explored reports of ELDVs by patients, bereaved families, healthcare professionals, or volunteers. Synthesis used both meta-analysis and a narrative approach.

Of 2,045 papers identified by searches, 22 were included, describing 18 studies in a variety of settings. Meta-analyses indicated that 77% (95% confidence intervals [CIs] 69–84%) of patients (n = 119) reported an ELDV compared with 32% (95% CIs 21–44%) of bereaved relatives (n = 2,444) and that 80% (95% CIs 59–94%) of healthcare professionals (n = 171) reported either witnessing or being told of an ELDV in the preceding 5 years. Studies of volunteers reported 34% (95% CIs 20–48%) (n = 45) either witnessing or being told of an ELDV over their entire period of service, with 49% of volunteers (95% CIs 33–64%) (n = 39) reporting events occurring in the preceding year. ELDVs reported by patients, bereaved families, healthcare professionals, and volunteers were perceived as being a source of comfort. Healthcare professionals and volunteers expressed a need for further education on how to support patients experiencing ELDVs and their families.

ELDVs are experienced by the majority of dying patients and need consideration in delivering holistic end-of-life care. Little if any research has been conducted in acute care facilities.

Knowledge, beliefs, and attitudes toward palliative care (PC) constitute barriers to its access. Few studies have focused on the intrinsic relationship between these variables, and none has examined the relationship between them and self-care self-efficacy.

To examine the direct and indirect effects of self-care self-efficacy, knowledge, and beliefs on attitudes toward PC.

A cross-sectional predictive study was conducted. Self-care self-efficacy, knowledge, attitudes, and beliefs about PC were analyzed using information from the Health Information National Trends Survey (HINTS 5, cycle 2, 2018). Data from 1,162 participants were considered. Structural equation modeling (SEM) was used to represent the statistical mediation model with latent and observable variables.

The structural model presents positive coefficients indicating that self-care self-efficacy significantly predicts knowledge (β = 0.127, p < 0.001) and beliefs (β = 0.078, p = 0.023). Similarly, knowledge is associated with attitudes (β = 0.179, p < 0.001) and beliefs (β = 0.213, p < 0.001). The beliefs measure is also significantly related to attitudes (β = 0.474, p < 0.001). In addition, this structural multiple mediation model shows optimal goodness-of-fit indices: χ2/df = 3.49, CFI = 0.983, TLI = 0.976, RMSEA = 0.046 [90% CI: 0.037–0.056], SRMR = 0.038.

Self-care self-efficacy is significantly associated with knowledge and beliefs about PC, which in turn are related to each other. Altogether, these variables predict positive attitudes toward PC. Understanding the relationship between these variables is relevant for targeting-specific populations and designing timely strategies to improve access to PC.

The mutual influence between end-of-life cancer patients and their family caregivers is widely endorsed. The present study aimed to explore the relationship between end-of-life cancer patients’ dignity-related distress and the distress of their caregivers.

A cross-sectional approach was used. The sample consisted of 128 patients with a Karnofsky Performance Status (KPS) below 50 and a life expectancy of a few weeks, and their family caregivers. Personal and clinical data were collected and validated rating scales were administered: Patient Dignity Inventory (PDI) to terminal cancer patients; Hospital Anxiety and Depression Scale (HADS), Demoralization Scale (DS), Herth Hope Index (HHI), Caregiver Reaction Assessment (CRA), Short Form Health Survey 36 (SF-36), and Distress Thermometer (DT) to caregivers.

Findings highlighted significant correlations between patients’ scores on the Psychological Distress PDI subscale and the PDI Total Score and caregivers’ Emotional Role. Patients’ Psychological Distress, PDI Total Score, and Loss of Purpose and Meaning were associated with caregivers’ Disrupted Schedule. Finally, patients’ Physical Symptoms and Dependency, Loss of Purpose and Meaning, and PDI Total Score were correlated with caregivers’ Disheartenment.

The results highlighted the key role of dignity as a relational dimension during the end-of-life phase. Therefore, because of caregivers’ distress could affect patients’ dignity-related distress by influencing the interpersonal aspects of patients’ autonomy, it would be important to relieve caregivers’ distress in order to promote patients’ autonomy and minimize their fear of being a burden.

Families bereaved following Medical Aid in Dying (MAID)-related death express concerns about public stigma. As access to MAID expands, research examining MAID is needed, including understanding stigma toward family members. This study examines if stigmatization exists toward bereaved individuals whose family member utilized MAID at differing ages and assess if expectations of grief differ between bereaved individuals whose family member utilized MAID compared to bereaved individuals whose family member died of an illness.

This study utilized a randomized, between-groups, vignette-based experiment to test the effects of cause of death (MAID vs. illness-related death) and age (28, 38, 70, and 80 years) of the deceased on indicators of public stigma. Participants (N = 428) were recruited from mTURK (Mage = 42.54; SDage = 16.50).

Analyses showed a statistically significant interaction between age and the mode of death (F(7, 400), p = 0.001, $\eta _{\rm p}^2$ = 0.06) and the main effect for age (F(5, 401), p = 0.004, $\eta _{\rm p}^2$ = 0.04) on expectations of grief, whereas emotional reactions and wanting social distance were not significant (p > 0.05). Participants expected more maladaptive grief among family members of 28- and 70-year-olds who died of illness compared to 28- or 38-year-olds who utilized MAID [28-year-old (M = 44.12, SD = 12.03) or 70-year-old (M = 44.32, SD = 10.29) illness-related death vs. 28-year-old (M = 39.3, SD = 11.56; p = 0.01) or 38-year-old (M = 38.71, SD = 11.56; p = 0.007) MAID-related death].

Findings suggest that direct stigma does not exist toward family members of individuals engaging in MAID. The American public may expect that family members of young individuals who utilize MAID are accepting of the death and expect them to experience fewer maladaptive grief symptoms. Future research should investigate differences in bereavement outcomes based on age of bereaved caregivers of individuals engaging in MAID.

The COVID-19 pandemic has widened the funded use of telehealth in Australia to support telehealth delivery to all patients in any setting. Increasing the use and experience of telehealth brings to light unique insights into the advantages and challenges of this new model of healthcare delivery This study aimed to qualitatively explore the experiences of both palliative care physicians and patients setting, including their views on its future role in healthcare.

This qualitative study was conducted across three metropolitan tertiary palliative care centers in Victoria, Australia between November 2020 and March 2021. Purposive sampling identified 23 participants (12 physicians and 11 patients). Semi-structured interviews focused on the last telehealth consultation, thoughts and impressions of telehealth, and the possibility of telehealth remaining in palliative care. A thematic approach was adopted to code and analyze the data.

Telehealth transformed the ways physicians and patients in this study perceived and engaged with outpatient palliative care across the entire continuum of care. Four key themes were identified: (1) access to care; (2) delivery of care; (3) engagement with care; and (4) the future.

This study provides novel data bringing together the perspective of patients and physicians, which confirms the utility of telehealth in palliative care. Its convenience enables more frequent review, enables reviews to occur in response to lower levels of concern, and adds toward enhancing the continuity of care across and between settings. Moving forward, support seemed strongest for a hybrid model of telehealth and face-to-face consultations guided by key parameters relating to the level of anticipated complexity.

It has been suggested that psychosocial factors are related to survival time of inpatients with cancer. However, there are not many studies examining the relationship between spiritual well-being (SWB) and survival time among countries. This study investigated the relationship between SWB and survival time among three East Asian countries.

This international multicenter cohort study is a secondary analysis involving newly admitted inpatients with advanced cancer in palliative care units in Japan, South Korea, and Taiwan. SWB was measured using the Integrated Palliative Outcome Scale (IPOS) at admission. We performed multivariate analysis using the Cox proportional hazards model to identify independent prognostic factors.

A total of 2,638 patients treated at 37 palliative care units from January 2017 to September 2018 were analyzed. The median survival time was 18.0 days (95% confidence interval [CI] 16.5–19.5) in Japan, 23.0 days (95% CI 19.9–26.1) in Korea, and 15.0 days (95% CI 13.0–17.0) in Taiwan. SWB was a significant factor correlated with survival in Taiwan (hazard ratio [HR] 1.27; 95% CI 1.01–1.59; p = 0.04), while it was insignificant in Japan (HR 1.10; 95% CI 1.00–1.22; p = 0.06), and Korea (HR 1.02; 95% CI 0.77–1.35; p = 0.89).

SWB on admission was associated with survival in patients with advanced cancer in Taiwan but not Japan or Korea. The findings suggest the possibility of a positive relationship between spiritual care and survival time in patients with far advanced cancer.

This systematic literature review aimed to critically appraise empirical evidence investigating palliative care (PC) nurses’ experiences of stress, anxiety, and burnout.

Six databases (PsycINFO, MEDLINE, Scopus, CINAHL, PubMed, and Web of Science) covering literature within psychology, medicine and healthcare, and social sciences were searched from inception until December 2020. Studies were eligible if they included qualitative literature reporting on experiences of nurses working in a PC setting of stress, anxiety, or burnout, and were published in English. Eighteen studies satisfied the review's inclusion criteria and were considered relevant to the review aims. Critical appraisal was undertaken using the Critical Appraisal Skills Programme Qualitative Checklist.

Thematic synthesis identified three main themes: When work becomes personal, The burden on mind and body, and Finding meaning and connection. The findings suggested that stress, anxiety, and burnout are deeply personal feelings experienced by nurses both on an emotional and physical level. Additionally, PC nurses’ experiences can differ in meaning and strength depending on their relationships with patients, patients’ families, and colleagues.

The synthesis highlighted that PC nurses' experiences are complex, encompassing clinical and organizational challenges, and the personal impact their work has on them. Having a greater understanding of the factors that contribute to PC nurses’ experiences may help in PC nurses’ core training and continuing professional education, as well as the provision of effective supervision and staff support.

In addition to physical symptom burden, psychological suffering at end of life (EOL) is quite pervasive. As such, the interdisciplinary team in our Palliative and Supportive Care Unit strives to provide quality care sensitive to the physical and psychosocial needs of patients. Involving and allowing for the presence of family members is one way in which we afford our patients some additional comfort. Unfortunately, the current pandemic has placed limitations on this rather fundamental need for both patients and their family members. Here, we present a case illustrating the effects of visitor restrictions/isolation due to COVID-19 on the suffering of a patient at the EOL.

A male in his 20s with a refractory hematologic malignancy decided to pursue a comfort-based approach to care after a rapid clinical deterioration. Due to visitor restrictions, he had to face this decision with limited support at the bedside, which caused significant distress. He was forced to choose among several immediate family members who would be at his side through his hospitalization, to be his advocate, at times his voice, his confidant, and the person to relay all information to those on the outside. He expressed a wish to be married before he died, which occurred in our palliative care unit. This life goal was one we would normally encourage those he loved to gather around him, but this was not possible. He passed peacefully two days after he was married.

Although social limitations are necessary to help provide safety to the patients and staff in a hospital, they can have a direct impact on the suffering of patients and families at the EOL. Helping to maintain dignity, reflect on their life, and resolve any conflicts in the presence of family members is a benchmark for providing quality palliative care. Being barred from visitation due to isolation, threatens this care and lays the foundation for complicated grief among family members. Further research is needed to help balance the needs of those at the EOL with public safety. One such measure to help ease distress is to allow for more virtual visitation through electronic measures.

Palliative care guidelines recommend an interdisciplinary approach to address patients’ awareness of mortality and need for end-of-life preparation. An ethical will is a nonlegal way to address mortality by communicating a lasting and intangible legacy of values to others. The aim of this scoping review is to clarify the operationalization of ethical wills across disciplines and map the purposes and outcomes of creating an ethical will.

We followed the Joanna Briggs Institute methodology for scoping reviews. We searched 14 databases in November 2019 and January 2021 without filtering publication date or type. Two reviewers independently screened 1,948 publications. We extracted frequently used terms describing content, audience, format, purpose, and outcomes identified in ethical will creation.

Fifty-one publications met inclusion criteria. Six (11.7%) were research articles. Twenty-four (47.1%) were lay literature published within law, estate, and financial planning. Collectively, our included studies defined an ethical will as a nonlegal way to express values, beliefs, life lessons and experiences, wisdom, love, history, hope for the future, blessings, apology, or forgiveness using any format (e.g., text, audio, video) that is meant to be shared with family, friends, or community. The most common purposes were to be remembered, address mortality, clarify life's meaning, and communicate what matters most. Creation provided opportunity to learn about self, served as a gift to both writer and recipient, and fostered generativity and sense of symbolic immortality.

Our findings highlight interdisciplinary utilization and a lack of research of ethical wills. This review provides supportive evidence for ethical wills as a way for patients to address mortality, renew intergenerational connections, solidify self, and promote transcendence before their final days. Ethical wills have potential to be incorporated into interdisciplinary palliative care in the future to address psychological symptoms for patients anticipating the end of life.

Management of head and neck cancer patients provides unique challenges. Palliation serves to optimise quality-of-life by alleviating suffering and maintaining dignity. Prompt recognition and management of suffering is paramount to achieving this. This study aimed to assess perceived confidence, knowledge and adequacy of palliative training among UK-based otolaryngologists.

Eight multiple-choice questions developed by five palliative care consultants via the Delphi method were distributed over five weeks. Knowledge, perceived confidence and palliative exposure among middle-grade and consultant otolaryngologists were assessed, alongside training deficits.

Overall, 145 responses were collated from middle-grade (n = 88, 60.7 per cent) and consultant (n = 57, 39.3 per cent) otolaryngologists. The mean knowledge score was 5 out of 10, with 22.1 per cent (n = 32) stating confidence in palliative management. The overwhelming majority (n = 129, 88.9 per cent) advocated further training.

A broad understanding of palliative care, alongside appropriate specialist involvement, is key in meeting the clinical needs of palliative patients. Curriculum integration of educational modalities such as simulation and online training may optimise palliative care.

To understand (1) the association of Major Depressive Disorder (MDD) and do-not-resuscitate (DNR) status among hospitalized patients and (2) the association of MDD and hospitalization outcomes among DNR patients.

This was a cross-sectional analysis of United States Healthcare Cost and Utilization Project, Nationwide Inpatient Sample data from 2009 to 2013 for patients >18 years. To address the first objective, we used multivariable logistic regression among all hospitalized patients to compute the adjusted odds ratio (aOR) of having DNR status if patients have active MDD of varying severities after controlling for age, sex, race, suicidal ideation, and Elixhauser Comorbidity Index. To address the second objective, we used multivariable regression among patients with DNR status to compute aOR of having hospitalization outcomes such as increased length of stay, higher total charges, leaving against medical advice, and mortality if patients have MDD.

Among all hospitalizations, 2.3% had DNR status. There was an inverse association between severity of MDD and having DNR status. Relative to those without MDD, patients with moderate recurrent MDD episode (aOR 0.74 (95% confidence interval (CI): 0.65–0.85) and severe recurrent MDD episode (aOR of 0.42 (95% CI: 0.37–0.48)) were significantly less likely to have DNR status. Among DNR patients, those with all severities of MDD except mild single episode MDD were >40% less likely to die during hospitalization. Among DNR patients, patients with MDD had 0.7 day longer length of stay, and >$4,500 higher total charges.

Patients are less likely to have DNR status if they have active MDD. Among patients with DNR status, those with MDD are less likely to die during hospitalization than those without MDD. With current practice, depression is not associated with increased likelihood of death due to foregoing resuscitation prematurely, though the exact mechanisms of these findings need further investigation.