The growing demand for palliative care has been accelerated due to the COVID-19 pandemic. However, providing community-based palliative care was also more difficult to do safely and faced several challenges. The goal of this integrative review was to identify, describe, and synthesize previous studies on the challenges for health professionals delivering palliative care in the community during the COVID-19 pandemic.

Searches were carried out on the Ovid MEDLINE, CINAHL, PsycINFO, Social Care Online, PubMed, Embase, and Expanded Academic databases. Journals typically reporting palliative care and community health studies were also searched (Palliative Medicine, Journal of Pain and Symptom Management, and Health & Social Care in the Community). All articles were peer-reviewed and published in English between December 2019 and September 2022.

Database and hand searches identified 1231 articles. After duplicates were removed and the exclusion criteria applied, 27 articles were included in the final review. Themes in the research findings centered on 6 interconnected categories. The challenges imposed by the pandemic (lack of resources, communication difficulties, access to education and training, and interprofessional coordination), as well as the varying levels of success of the health-care responses, impacted the well-being of health professionals and, in turn, the well-being and care of patients and families.

The pandemic has provided the impetus for rethinking flexible and innovative approaches to overcome the challenges of delivering community palliative care. However, existing governmental and organizational policies require revision to improve communication and effective interprofessional collaboration, and additional resources are needed. A blended model of virtual and in-person palliative care delivery may provide the best solution to community palliative care delivery moving forward.

Undergraduate nursing education prepares student for entry into the profession. Palliative care is an essential component of nursing education; however, a focus on the management of symptom burden fails to prepare the undergraduate in communication skills required for palliative or end-of-life care (EoLC). Simulation to teach acute care is well researched; however, limited studies explore simulation for palliative care or EoLC. Fewer studies combine communication with palliative care simulation.

The overarching aim is to explore the influence of a palliative care communication simulation on undergraduate nursing students.

Participants were students recruited from two campuses at a major Australian university in 2021. Students attended a compulsory simulation for all nursing or nursing and midwifery students. Pre- and post-simulation questionnaires collected qualitative and quantitative responses from participants. This paper reports that the quantitative data captured included demographic information, and the Frommelt Attitude Toward Care of the Dying (FATCOD-B) tool, to assess the attitudes. The qualitative component of the research will be reported as a separate paper.

A statistically significant increase in FATCOD-B scores was observed between pre- and post-simulation questionnaires, as well as a statistically significant difference related to the gender of participants. Age and previous experience with death also impacted FATCOD-B results.

The increase in FATCOD-B scores demonstrate that the positive impact of simulation suggests the importance of educational interventions such as the one conducted in this study. Education to improve the attitude toward caring for the dying and communication skills for difficult conversations are relevant and valuable. Further research is indicated.

This systematic review considers interventions designed to improve the psychological well-being (PWB) of carers of people with motor neuron disease (MND) using quantitative, qualitative, or mixed-methods studies, and aimed to (1) summarize current research, (2) assess the quality of evidence, and (3) evaluate the effectiveness of interventions.

Mixed-methods systematic review (MMSR) was conducted based on Joanna Briggs Institute methodology for quantitative, qualitative, and mixed-methods reviews and Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.

Thirteen papers met the inclusion criteria, including 12 studies (six mixed-methods, four quantitative, and two qualitative). Four studies described randomized controlled trials, seven detailed uncontrolled longitudinal studies with a single treatment group and a pre-post design, and one was an observational survey. Critical appraisal of the studies revealed a wide range of weaknesses in the quantitative and/or qualitative methodologies. Due to the heterogeneity of interventions, outcomes, and measurements, a narrative and convergent approach to data synthesis was employed. While a minority of studies demonstrated some benefits to hedonic and eudaimonic aspects of PWB, the interpretability of these data was limited by methodological problems.

This MMSR highlighted a paucity of quality research regarding interventions for the PWB of MND carers. Although some benefits to PWB were demonstrated, most studies suffered from substantial methodological problems, rendering the overall evidence base low. High-quality and carefully designed studies are a priority to enable effective development and testing of much-needed interventions targeting the PWB for MND carers.

While patients’ symptom experiences have been widely investigated, there is a lack of contextualized studies investigating how symptoms circulate in the medical consultation, how patients present them, what they convey, how physicians respond, and how patients and physicians negotiate with each other to find ways to address them. The aim of this study is to explore patients and physicians handling of symptoms throughout oncological consultations with a multiple case study approach.

Five consultations, purposively selected from an existing dataset of audiotaped consultations with patients with advanced cancer, were analyzed by means of an inductive analytical approach based on a sensitive framework from the literature.

Patients’ symptoms showed multiple dimensions such as medical, cognitive, emotional, psychological, interactional, symbolic, experiential, and existential.

Different symptom dimensions remained unnoticed and unaddressed in the consultations. The physician-centered symptom approach that was observed leads to consumed time and missed opportunities for relationship building with the patient. Physicians showed a lack of sensitivity regarding the multiple dimensions of symptoms. Based on the findings, strategies for a more comprehensive symptom approach can be conceived.

It is well known that the burden on the families of cancer patient extends across many aspects, but there have been no reports of family members developing delirium due to the burden of caring for a cancer patient.

We reported a caregiver who developed Wernicke encephalopathy (WE) while caring for a family member with advanced cancer.

The subject was a 71-year-old woman who had been caring for her husband, diagnosed with gastric cancer and liver metastases, for 5 months. She visited the “caregivers’ clinic” after referral by an oncologist who was worried about a deterioration in her mental condition that had appeared several weeks previously. The woman had a history of diabetes mellitus. Some giddiness was observed and, based on her inability to answer questions, her level of consciousness was checked and some disorientation was observed. She was diagnosed with delirium. A blood sample was collected to investigate the cause of the delirium, but the test data showed no hypoglycemia. Her appetite had declined since her husband was diagnosed with cancer. Thiamine deficiency was suspected as thiamine stores in the body are depleted within about 18 days and her loss of appetite had continued for 5 months. On intravenous injection of 100 mg of thiamine, her consciousness level was returned to normal in 1 h. A diagnosis of WE was supported by the patient's abnormally low serum thiamine level.

The family members of cancer patients may develop a loss of appetite due to the burden of caring, resulting in WE. When providing care for signs of distress in family members, it is necessary to pay attention not only to the psychological aspects but also to their level of consciousness and physical aspects, particularly the possibility of serious illness resulting from reduced nutritional status.

Clinicians report training deficits in advance care planning (ACP), including limits to their understanding of cultural/spiritual influences on patient decision-making and skills in interdisciplinary teamwork. This study describes Advance Directives-Live Action Simulation Training (AD-LAST), an interdisciplinary experiential and didactic training program for discussing ACP and end-of-life (EOL) care. AD-LAST highlights cultural/spiritual variations in medical decision-making.

Prospective educational cohort study with pre-post intervention survey. AD-LAST incorporated standard curricular tools for didactic and experiential training in ACP/EOL communication. Study conducted in an urban community teaching hospital in Queens, NY, one of the most diverse counties in the USA. Participants included physicians, house staff, nurses, therapists, and other disciplines. AD-LAST format was a one-day workshop. The morning focused on didactic teaching using widely available curricular tools. The afternoon involved experiential practice with standardized patient-actors. Pre-post intervention questionnaires assessed ACP operational knowledge and self-efficacy (i.e., self-confidence in skills) in ACP and EOL communication. Repeated measure ANOVAs evaluated changes from pretest to posttest in knowledge and self-efficacy.

A total of 163 clinical staff participated in 21 AD-LAST training sessions between August 2015 and January 2019. Participants displayed a significant increase from pretest to posttest in total knowledge (p < 0.001), ACP procedural knowledge (p < 0.001), ACP communication/relationships knowledge (p < 0.001), and self-efficacy (p < 0.001). Knowledge and self-efficacy were not correlated and represented independent outcomes. Postprogram evaluations showed greater than 96% of participants were highly satisfied with AD-LAST, especially the opportunity to practice skills in real-time and receive feedback from members of other professional groups.

AD-LAST, a multifaceted training program deployed in an interdisciplinary setting, is effective for increasing ACP knowledge and self-efficacy, including the capacity to address cultural/spiritual concerns. The use of standard tools facilitates dissemination. The use of case simulations reinforces learning.

Although “fatigue” and “depression” are well-accepted clinical terms in the English language, they are ill defined in many other languages, including Portuguese. We aimed to investigate the most appropriate words to describe cancer-related fatigue (CRF) and depression in Brazilian cancer patients.

The interviewers read to patients two clinical vignettes describing fatigued patients and two others describing depressed patients. Participants were asked to choose from among “fatigue,” “tiredness,” “weakness,” “depression,” and “sadness” the best and worst terms to explain the vignettes. In addition, they were administered an instrument containing numeric rating scales (NRSs), addressing common symptoms, including the aforementioned terms. Pearson correlation analysis and accuracy diagnostic tests were conducted using the Hospital Anxiety and Depression Scale (HADS) and the Functional Assessment of Cancer Treatment–Fatigue (FACIT–F) as references.

Among the 80 participants, 40% reported that the best term to explain the concept of CRF was “tiredness,” and 59% chose “sadness” as the best descriptor of depression. Regarding diagnostic accuracy, the areas under the curve (AUCs) for “fatigue,” “weakness,” and “tiredness” were 0.71, 0.81, and 0.76, respectively; the AUCs for “depression” and “sadness” ranged from 0.81 to 0.91 and 0.73 to 0.83, respectively. Negative correlations were found among FACIT–F fatigue subscale scores and NRS scores for “fatigue” (r = –0.58), “tiredness” (r = –0.67), and “weakness” (r = –0.62). Regarding depression, there were positive correlations between HADS–D scores and both NRS for “depression” (r = 0.61) and “sadness” (r = 0.54).

“Tiredness” was considered the best descriptor of CRF. Taking into consideration the clinical correlation with depression scores, the term “depression” was accepted as the best term to explain the concept of depression.

Recent findings narrate profiteering detrimentally impacting hospice care quality. However, no study has examined the caregiver experience of emotional and spiritual support expressed online. The purpose was to evaluate the hospice caregiver’s experience of emotional, spiritual, and bereavement support and whether the care was respectful and compassionate to the care unit.

Retrospective mixed methods of sentiment and quantitative analysis. Sources were online caregiver reviews (n = 4,279), Consumer Assessment of Healthcare Providers and Systems (CAHPS) data on the 50 largest US hospices.

Caring and compassionate professionals were lauded in nonprofit (+.57) and for-profit settings (+.46). The nonprofit experience was in the excellent range (+42) for emotional, spiritual, and bereavement support but fell to dissatisfying (–.15) among for-profits. A respectful experience (16%) was much less commonly expressed than a compassionate one (38%). Distribution of CAHPS “Treating patient with respect” (M = 89.62, SD = 2.63) and “Emotional and spiritual support” (M = 89.80, SD = 2.04) limited inter-hospice comparisons.

Compassionate professionals were thanked and praised regardless of profit status. Sadly, anger was expressed toward large, for-profits more fixated on census than emotional, spiritual, and bereavement support; thankfully nonprofits were more supportive. CAHPS items for “Treating patient with respect” and “Emotional, spiritual support” offer limited discriminating value since low CAHPS performers always had relatively high scores on these 2, yet otherwise low scores on the remaining 6. Online reviews on the same topics provide a more substantive and realistic appraisal – distinguishing high from low performers. A higher bar than mere respect is needed for the tender experience of death, dying, and grieving. Compassion is an especially relevant addition to CAHPS since caregivers named compassionate staff as a distinguishing factor. Parity for mental health at end of life is a vital research topic. Future research should also explore the caregiver expectations set on admission.