This qualitative study examined how families share information and feelings about advanced pediatric cancer from the perspective of both parents and children, as well as how these perspectives vary by child developmental stage.

Participants (24 mothers, 20 fathers, 23 youth [children and adolescents]) were from a larger longitudinal study at an academic pediatric hospital. Eligible youth had advanced cancer (physician-estimated prognosis of <60%, relapse, or refractory disease), were aged 5–19 years (>8 years old to participate independently), had an English-speaking parent, and lived within 140 miles of the hospital. Interviews were completed at enrollment and asked how families share information and emotions about the child’s cancer as a family.

Saturation was reached at 20 interviews for mothers, fathers, and youth. Analyses revealed 4 major themes: (A) parents managing cancer-related information based on child age/developmental stage and processing styles of family members; (B) parents withholding poor prognosis information and emotions to maintain positivity; (C) lack of personal and familial emotion sharing; and (D) emotion sharing among their family and externally. Both parents and youth endorsed themes A, C, and D, but only parents endorsed theme B. Adolescents endorsed more themes than children. Parents of children (as opposed to adolescents) endorsed theme A more.

Although both parents and youth with advanced cancer were generally willing to talk about treatment, emotions were not consistently shared. Perspectives varied depending on the child’s developmental stage. Clinicians should assess parent and child information and emotion-sharing needs and provide individualized support to families regarding communication about advanced cancer.

This study aims to provide an in-depth understanding of the content and process of decision-making about palliative sedation for existential suffering (PS-ES) as perceived by Belgian palliative care physicians.

This Belgian nationwide qualitative study follows a grounded theory approach. We conducted semistructured interviews with 25 palliative care physicians working in 19 Belgian hospital-based palliative care units and 4 stand-alone hospices. We analyzed the data using the Qualitative Analysis Guide of Leuven, and we followed the Consolidated Criteria for Reporting Qualitative Research Guidelines (COREQ).

Analysis of the data identified several criteria that physicians apply in their decision-making about PS-ES, namely, the importance of the patient’s demand, PS-ES as a last resort option after all alternatives have been applied, the condition of unbearable suffering combined with other kinds of suffering, and the condition of being in a terminal stage. Regarding the process of decision-making itself, physicians refer to the need for multidisciplinary perspectives supported by an interpretative dialogue with the patient and all other stakeholders. The decision-making process involves a specific temporality and physicians’ inner conviction about the need of PS-ES.

Belgian palliative care physicians are not sure about the criteria regarding decision-making in PS-ES. To deal with complex existential suffering in end-of-life situations, they stress the importance of participation by all stakeholders (patient, relatives, palliative care team, other physicians, nurses, social workers, physiotherapists, occupational therapists, chaplains, etc.) in the decision-making process to prevent inadequate decisions being made.

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.

Adherence plays a vital role in the effectiveness of non-pharmacological interventions. The disappearance of interventions’ effects at follow-up was caused by inadequate self-practice beyond intervention period. The purpose of this study is to examine the factors associated with adherence to aerobic exercise and Tai Chi and the impact of adherence on the short- and long-term effectiveness in improving sleep in patients with advanced lung cancer.

This study analyzed data collected in a clinical trial that evaluated the effects of aerobic exercise and Tai Chi in patients with advanced lung cancer. Two types of exercises were maintained at the same intensity but with different dosage. A total of 99 patients with advanced lung cancer who were recruited between 2018 and 2020 were included. Data were collected using self-report questionnaires.

Fifty participants were randomly assigned to aerobic exercise and 49 to Tai Chi intervention. Higher levels of satisfaction and lower levels of depression were significantly associated with higher attendance and compliance in both groups. Low fatigue levels contributed to higher attendance in Tai Chi. Both attendance and compliance were significantly associated with long-term sleep improvement.

Higher levels of satisfaction and lower levels of depression were important characteristics of attendance and compliance with home-based practice in both groups, whereas lower levels of fatigue uniquely contributed to higher attendance in Tai Chi. Better exercise adherence improves long-term effectiveness of sleep in patients with advanced lung cancer. Adopting strategies is imperative to promote exercise adherence in patients with greater levels of depression and fatigue.

The authors describe the concept of hospice formulary as is utilized at the hospice service of a university medical center.

A periodic review of hospice formulary, focusing on psychotropic medications and delirium prevention, was accomplished in 2006. This effort represents a multidisciplinary effort among hospice nursing, internal medicine, and psychiatry.

An updated formulary adopting contemporary psychopharmacologic best practices was produced and implemented along with targeted in-service training to nurse clinicians.

The modern hospice formulary offers opportunities to offer state-of-the-art psychopharmacological care and minimization of delirium through judicious use of psychopharmacological treatments for the psychiatric comorbidities common in terminally ill patients.

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.

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.

To investigate the influence of care place and diagnosis on care communication during the last 3 months of life for people with advanced illness, from the bereaved family members’ perspective.

A retrospective survey design using the VOICES(SF) questionnaire with a sample of 485 bereaved family members (aged: 20−90 years old, 70% women) of people who died in hospital was employed to meet the study aim.

Of the deceased people, 79.2% had at some point received care at home, provided by general practitioners (GPs) (52%), district nurses (36.7%), or specialized palliative home care (17.9%), 27.4% were cared for in a nursing home and 15.7% in a specialized palliative care unit. The likelihood of bereaved family members reporting that the deceased person was treated with dignity and respect by the staff was lowest in nursing homes (OR: 0.21) and for GPs (OR: 0.37). A cancer diagnosis (OR: 2.36) or if cared for at home (OR: 2.17) increased the likelihood of bereaved family members reporting that the deceased person had been involved in decision making regarding care and less likely if cared for in a specialized palliative care unit (OR: 0.41). The likelihood of reports of unwanted decisions about the care was higher if cared for in a nursing home (OR: 1.85) or if the deceased person had a higher education (OR: 2.40).

This study confirms previous research about potential inequalities in care at the end of life. The place of care and diagnosis influenced the bereaved family members’ reports on whether the deceased person was treated with respect and dignity and how involved the deceased person was in decision making regarding care.

Burdensome transitions are typically defined as having a transition in the last three days or multiple hospitalizations in the last three months of life, which is seldom verified with qualitative accounts from persons concerned. This study analyses types and frequencies of transitions in the last year of life and indicators of burdensome transitions from the perspective of bereaved relatives.

Cross-sectional explanatory mixed-methods study with 351 surveyed and 41 interviewed bereaved relatives in a German urban area. Frequencies, t-tests, and Spearman correlations were computed for quantitative data. Qualitative data were analyzed using content analysis with provisional and descriptive coding/subcoding.

Transitions rise sharply during the last year of life. 8.2% of patients experience a transition in the last three days and 7.8% three or more hospitalizations in the last three months of life. An empathetic way of telling patients about the prospect of death is associated with fewer transitions in the last month of life (r = 0.185, p = 0.046). Professionals being aware of the preferred place of death corresponds to fewer hospitalizations in the last three months of life (1.28 vs. 0.97, p = 0.021). Qualitative data do not confirm that burden in transitions is linked to having transitions in the last three days or multiple hospitalizations in the last three months of life. Burden is associated with (1) late and non-empathetic communication about the prospect of death, (2) not coordinating care across settings, and (3) not considering patients’ preferences.

Time of occurrence and frequency appear to be imperfect proxies for burdensome transitions. The subjective burden seems to be associated rather with insufficient information, preparation, and management of transitions.

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.