We aimed to elucidate the views on life as narrated by patients in palliative care (PC) to find out what patients deem to be essential in their life, whether something has changed concerning their view of life in light of the disease, and whether interviewees would like to give others something to take with them.

Data were collected from narrative audio and video interviews with 18 inpatients in a specialized PC unit. Interviews were recorded and transcribed verbatim and analyzed using qualitative content analysis applying MAXQDA software. CDs and DVDs with recorded interviews were provided to patients.

Eighteen interviews were analyzed: 11 audio and 7 video recordings. The age range was 41–80 years. Patients reported on changes in their views on life. Despite it being a complex and painful process, patients still gave examples of benefits experienced during their illness trajectory. Patients identified resources and coping strategies such as meaningful contacts with close others and mindfulness. Shifts have occurred in terms of taking more time for themselves, enjoying the moment, being more calm, and spending more time with family and friends. What patients wanted to pass on to others was to pay attention to the needs of both the self and the others, shape your life individually, confront yourself early with issues of death and dying, and care for your fellow human beings. Patients and relatives valued the opportunity to keep their interview as a CD/DVD.

Results support the idea that many people facing terminal illness continue to focus on living and remain within their biographies and the contexts of their lives, even if their functional status declines. Patients and relatives appreciated that interviews were provided as kind of a legacy. Yet, more robust research is needed to decide whether such interviews yield any therapeutic effect.

This study aimed to establish the prevalence and factors associated with depressive symptoms among family caregivers of palliative care patients at Hospice Africa Uganda.

We used a mixed method study to determine the prevalence and factors associated with depressive symptoms among family caregivers of palliative care patients at Hospice Africa Uganda. We assessed depressive symptoms using the Patient Health Questionnaire-9 (PHQ-9) and collected socio-demographic data using a tailored questionnaire. We used binary logistic regression to assess for the association between depressive symptomatology and caregiver socio-demographic and clinical characteristics.

We recruited 161 family caregivers, 64% of whom were female. The study revealed a high prevalence of depressive symptoms (46%) (n = 74) among the family caregivers. Education status and religious affiliation were significantly associated with depressive symptomatology.

Family caregivers of palliative care patients face a high burden of depressive symptoms. Efforts to care for family caregivers within palliative care should include assessment and management of depressive symptoms in this population.

Palliative care necessitates questions about the preferred place for delivering care and location of death. Place is integral to palliative care, as it can impact proximity to family, available resources/support, and patient comfort. Despite the importance of place, there is remarkably little literature exploring its role in pediatric palliative care (PPC).

To understand the importance and meaning of place in PPC.

We conducted a scoping review to understand the importance of place in PPC. Five databases were searched using keywords related to “pediatric,” “palliative,” and “place.” Two reviewers screened results, extracted data, and analyzed emergent themes pertaining to place.

From 3076 search results, we identified and reviewed 25 articles. The literature highlights hospital, home, and hospice as 3 distinct PPC places. Children and their families have place preferences for PPC and place of death, and a growing number prefer death to occur at home. Results also indicate numerous factors influence place preferences (e.g., comfort, grief, cultural/spiritual practices, and socioeconomic status).

Place influences families’ PPC decisions and experiences and thus warrants further study. Greater understanding of the importance and roles of place in PPC could enhance PPC policy and practice, as well as PPC environments.

The study aimed to explore the determinants of quality of life (QoL) among Omani family caregivers (FCGs) of adult patients with cancer pain.

A descriptive cross-sectional design, measures of caregiver reaction, knowledge about cancer pain, self-efficacy for cancer pain and other symptom management, QoL, and patient functional status were used to collect data from 165 FCGs and patients. Descriptive, correlation, and regression analyses were performed.

Most patients had intermittent (83%) and severe (50.9%) cancer pain. The FCGs had low QoL (58.44 ± 17.95), and this mostly impacted support and positive adaptation (55.2%). Low QoL was associated with low self-rated health, low confidence in the ability to control the patient’s pain, low self-efficacy, high perceived distress due to patient pain, and a high impact of caregiving on physical health. The level of caregiver distress due to the patient’s pain (p < 0.01), patient’s functional status (p < 0.01), and perceived impact of caregiving on health (p < 0.05) were significant predictors of overall QoL.

Omani FCGs of patients with cancer pain suffer a negative impact on their QoL, and this is related to the patient’s level of pain and functional status, caregiver’s health, and self-efficacy in cancer pain and symptom management. The FCGs’ QoL may be enhanced by augmenting their skills and self-efficacy in cancer pain and symptom management and by health promotion programs.

The cognitive state of the dying in the last days of life may deteriorate, resulting in a reduced ability to communicate their care needs. Distressing symptoms, physical and existential, may go unrecognized and untreated. The objectives of this integrative review were to systematically interrogate the literature to determine the changing conscious state of dying adults and to identify changes in their care needs.

An integrative review protocol was registered with PROSPERO (CRD42020160475). The World Health Organization definition of palliative care informed the review. CINAHL, MEDLINE (OVID), Scopus, PsycINFO, Cochrane Library, and PubMed were searched from inception to October 2019 using search strategies for each database. Inclusion and exclusion criteria were applied. Methodological quality was appraised using the Joanna Briggs Institute Checklist for the Case Series appraisal tool. Extracted data were synthesized using a narrative approach.

Of 5,136 papers identified, 11 quantitative case series studies were included. Six themes were identified: conscious state and change over time, awareness, pain, absence of holistic care, the voiceless patient, and signs and symptoms of dying.

In the last days of life, the physical and conscious state of the dying patient declines, resulting in an inability to express their care needs. Dignity in dying and freedom from pain and suffering are both an imperative and a human right; and unvoiced care needs can result in unnecessary suffering and distress. This review revealed that little is known about how healthcare professionals assess holistic care needs at this vulnerable time. Although much has been written about palliative and end-of-life care, the assessment of care needs when patients are no longer able to voice their own needs has largely been ignored, with little attention from clinical, educational, or research perspectives. This gap in evidence has important implications for the dying and their families.

In the early stage of dementia, persons living with dementia (PLwD) can identify their values and wishes for future care with a high degree of accuracy and reliability. However, there is a paucity of research to guide best practices on how best to incorporate advance care planning (ACP) in older adults diagnosed with mild dementia and therefore only a minority of these individuals participate in any ACP discussions. We developed an intervention called Voice Your Values (VYV) that healthcare professionals can implement to identify and document the values of PLwD and their trusted individuals such as friends or family.

This single-group pre-test and post-test design aimed to determine the feasibility, acceptability, and preliminary efficacy of the VYV intervention.

A convenience sample of 21 dyads of PLwD and their trusted individuals were recruited from five outpatient geriatric clinics. The tailored VYV intervention was delivered to the dyads over two sessions using videoconferencing.

In terms of feasibility, the recruitment rate was lower (52%) than the expected 60%; the retention rate was high at 94%, and the intervention fidelity was high based on the audit of 20% of the sessions. In terms of preliminary efficacy, PLwD demonstrated improvement in ACP engagement (p = <0.01); trusted individuals showed improvements in decision-making confidence (p = 0.01) and psychological distress (p = 0.02); whereas a minimal change was noted in their dementia knowledge (p = 0.22).

Most of the feasibility parameters were met. A larger sample along with a control group, as well as a longitudinal study, are requisite to rigorously evaluate the efficacy of the promising VYV intervention. There is emerging evidence that people living with mild dementia can effectively participate in identifying and expressing their values and wishes for future care.

The purpose of this study was to report the psychometric properties, in terms of validity and reliability, of the Unconscious Version of the Family Decision-Making Self-Efficacy Scale (FDMSE).

A convenience sample of 215 surrogate decision-makers for critically ill patients undergoing mechanical ventilation was recruited from four intensive care units at a tertiary hospital. Cross-sectional data were collected from participants between days 3 and 7 of a decisionally impaired patient's exposure to acute mechanical ventilation. Participants completed a self-report demographic form and subjective measures of family decision-making self-efficacy, preparation for decision-making, and decisional fatigue. Exploratory factor analyses, correlation coefficients, and internal consistency reliability estimates were computed to evaluate the FDMSE's validity and reliability in surrogate decision-makers of critically ill patients.

The exploratory factor analyses revealed a two-factor, 11-item version of the FDMSE was the most parsimonious in this sample. Furthermore, modified 11-item FDMSE demonstrated discriminant validity with the measures of fatigue and preparation for decision-making and demonstrated acceptable internal consistency reliability estimates.

This is the first known study to provide evidence for a two-factor structure for a modified, 11-item FDMSE. These dimensions represent treatment and palliation-related domains of family decision-making self-efficacy. The modified FDMSE is a valid and reliable instrument that can be used to measure family decision-making self-efficacy among surrogate decision-makers of the critically ill.

Malignancy-related thromboembolism, also referred to as Trousseau's syndrome, can present as acute cerebral infarction, nonbacterial thrombotic endocarditis (NBTE), and migratory thrombophlebitis. Therefore, many physical, neurological, and psychological symptoms associated with Trousseau's syndrome may occur in the clinical course.

To illustrate this, we report a case of a male patient in his 50s with carcinomatous peritonitis caused by gastric cancer, with multiple cerebral infractions that developed during disease progression. The patient was admitted to our hospital for the treatment of side effects of chemotherapy, although he strongly hoped to go home as soon as possible. In addition to making social supports plans, we were required to perform intensive total palliative care, because of his physical pain, general fatigue, anorexia, abdominal and neck pain, and psychological issues (insomnia, delirium, depression, suicidal thoughts, self-mutilation, panic attacks, agoraphobia, fear of death, and feelings of hopelessness).

To the best of our knowledge, based on the literature search, this is the first reported case of Trousseau's syndrome described in the context of total palliative care, especially psychological care.

We propose that neurological symptoms of Trousseau's syndrome cause these extensive mental disorders. Furthermore, because of the prognosis of Trousseau's syndrome, we should utilize our expertise fulfill the patient's wishes.

This study aimed to analyze the different factors that intervene in the task of caring for relatives of people with Alzheimer’s and other dementias. A first objective focused on assessing the relation between burden and anticipatory grief, considering the possibility of social support and the risk of psychopathology. A second objective aimed to examine whether caregiver burden modulates the relationships between anticipatory grief and psychopathology. A cross-sectional design was employed.

The sample consists of 129 participants who care for a family member with Alzheimer’s and other dementias. A protocol based on a battery of tests has been applied and a mediation analysis was carried out.

The results show a positive relationship between burden and anticipatory grief. Social support could have an indirect relationship with anticipatory grief, based on its effect on the level of psychopathology and caregiver burden. Finally, a modulation model reflects that the relationship between anticipatory grief and psychopathology is strong, the latter having a greater effect as a result variable than as a risk variable. However, it seems that the relationship between grief and psychopathology is better explained directly than not through the modulating effect of the caregiver burden.

The results obtained encourage us to think that an approach focused on intervening in the anticipatory grief may be an opportunity to reduce or buffer other caregiving outcomes, especially those related to the perception of caregiver burden and psychopathology.

This study aims at investigating the current status of death literacy and parent’s death quality among adult children in China. A cross-sectional survey was conducted to explore the associations between death literacy and parent’s death quality and to provide evidence for developing public policies for improving the quality of death and end-of-life care for the population in the Greater Bay Area (GBA) of China.

A cross-sectional design was adopted. Participants who experienced their father’s and/or mother’s death were recruited from 5 cities in the GBA of China in 2022. The Good Death Inventory (GDI) and the Death Literacy Index (DLI) were used to investigate the perceived quality of death of the parents of the participants and the death literacy of the participants.

A total of 511 participants were recruited. Participants with higher GDI scores were positively associated with DLI scores (p < 0.001). Adult children who had close relationships before their parents’ death also had higher levels of DLI.

This study investigated death literacy among bereaved adult children in China, filling a gap in the investigation of death literacy among Chinese residents. It found that parents’ death experience can have a significant impact on the death literacy of adult children, which may affect their understanding and preparation for their own eventual death. Promotion of family discussion on death, development of community palliative care, and improving public death literacy are urgently needed in China.

The purpose of this study was to describe disrespectful, inadequate, and abusive care to seriously ill patients who identify as transgender and their partners.

A cross-sectional mixed methods study was conducted. The sample included 865 nurses, physicians, social workers, and chaplains. Respondents were asked whether they had observed disrespectful, inadequate, or abusive care due to the patient being transgender and to describe such care.

Of the 21.3% of participants who reported observing discriminatory care to a transgender patient, 85.3% had observed disrespectful care, 35.9% inadequate care, and 10.3% abusive care. Disrespectful care included insensitivity; rudeness, ridicule, and gossip by staff; not acknowledging or accepting the patient’s gender identity or expression; privacy violations; misgendering; and using the incorrect name. Inadequate care included denying, delaying, or rushing care; ignorance of appropriate medical and other care; and marginalizing or ignoring the spouse/partner.

These findings illustrate discrimination faced by seriously ill transgender patients and their spouse/partners. Providers who are disrespectful may also deliver inadequate care to transgender patients, which may result in mistrust of providers and the health-care system. Inadequate care due to a patient’s or spouse’s/partner’s gender identity is particularly serious. Dismissing spouses/partners as decision-makers or conferring with biological family members against the patient’s wishes may result in unwanted care and constitute a Health Insurance Portability and Accountability Act of 1996 (HIPAA) violation. Institutional policies and practices should be assessed to determine the degree to which they are affirming to both patients and staff, and revised if needed. Federal and state civil rights legislation protecting the LGBTQ+ community are needed, particularly given the rampant transphobic legislation and the majority of states lacking civil rights laws protecting LGBTQ+ people. Training healthcare professionals and staff to become competent and comfortable treating transgender patients is critical to providing optimal care for these seriously ill patients and their spouse/partner.

Among African Americans, spirituality is meaning or purpose in life and a faith in God who is in control of health and there to provide support and guidance in illness situations. Using qualitative methods, we explored the use of spirituality to make sense of the end-of-life and bereavement experiences among family members of a deceased cancer patient.

Data in this report come from 19 African Americans who experienced the loss of a family member to cancer. A qualitative descriptive design was used with criterion sampling, open-ended semistructured interviews, and qualitative content analysis.

Participants made sense of the death of their loved one using the following five themes: Ready for life after death; I was there; I live to honor their memory; God's wisdom is infinite; and God prepares you and brings you through. These five themes are grounded in conceptualizations of spirituality as connectedness to God, self, and others.

Our findings support the results that even during bereavement, spirituality is important in the lives of African Americans. African American family members might struggle with issues related to life after death, their ability to be physically present during end-of-life care, and disentangling beliefs around God's control over the beginning and ending of life. The findings in this report can be used to inform healthcare providers to better support and address the needs for support of African American family members during end-of-life and bereavement experiences.

Families facing end-stage nonmalignant chronic diseases (NMCDs) are presented with similar symptom burdens and need for psycho-social–spiritual support as their counterparts with advanced cancers. However, NMCD patients tend to face more variable disease trajectories, and thus may require different anticipatory supports, delivered in familiar environments. The Life Rainbow Programme (LRP) provides holistic, transdisciplinary, community-based end-of-life care for patients with NMCDs and their caregivers. This paper reports on the 3-month outcomes using a single-group, pre–post comparison.

Patients with end-stage NMCDs were screened for eligibility by a medical team before being referred to the LRP. Patients were assessed at baseline (T0), 1 month (T1), and 3 months (T2) using the Integrated Palliative Outcome Scale (IPOS). Their hospital use in the previous month was also measured by presentations at accident and emergency services, admissions to intensive care units, and number of hospital bed-days. Caregivers were assessed at T0 and T2 using the Chinese version of the Modified Caregiver Strain Index, and self-reported health, psychological, spiritual, and overall well-being. Over-time changes in outcomes for patients, and caregivers, were tested using paired-sample t-tests, Wilcoxon-signed rank tests, and chi-square tests.

Seventy-four patients and 36 caregivers participated in this research study. Patients reported significant improvements in all IPOS domains at both 1 and 3 months [ranging from Cohen's d = 0.495 (nausea) to 1.793 (depression and information needs fulfilled)]. Average hospital bed-days in the previous month fell from 3.50 to 1.68, comparing baseline and 1 month (p < 0.05). At 3 months, caregiver strain was significantly reduced (r = 0.332), while spiritual well-being was enhanced (r = 0.333).

After receiving 3 month's LRP services, patients with end-stage NMCDs and their caregivers experienced significant improvements in the quality of life and well-being, and their hospital bed-days were reduced.

Scientific societies recommend early interaction between oncologic and supportive care, but there is still a lack of systematic evaluations regarding symptoms from the perspective of oncologists.

The aim of this prospective study was to evaluate the PERSONS score, in both “simultaneous care” and “supportive care” settings using the Edmonton Symptom Assessment Scale (ESAS) as a comparator.

From November 2017 to April 2018, 67 and 110 consecutive patients were enrolled in outpatient and home care cohorts, respectively. The final study population comprised 163 patients. There were no significant changes over time in the total PERSONS scores and total ESAS scale. The intra-interviewer reliability (ICC2,1) and inter-interviewer reliability (ICC2,k) showed good reproducibility (test-retest) in each group of patients: 0.60 (0.49–0.70) and 0.82 (0.75–0.87), respectively, for the home care patients and 0.73 (0.62–0.81) and 0.89 (0.83–0.93), respectively, for the outpatient cohort. There were high correlations between PERSONS and ESAS, both at the baseline and final assessments. The mean PERSONS and ESAS scores between the home care patients and outpatients were not different at the baseline and final assessments. Receiver operating characteristics (ROC) curve for the PERSONS total score revealed good diagnostic ability. Area under the curve (AUC) was 0.825 and 0.805 for improvement and deterioration, respectively.

The PERSONS score is an easy to apply tool for symptom assessment. Importantly, the PERSONS score showed high concordance with the established ESAS scale and, therefore, provides an alternative for everyday use in supportive care assessment.

Physical and psychological symptoms in cancer patients are frequently overlooked by medical staff. However, little is known regarding the potential impacts of concurrent physical and psychological symptoms on the overlooking of other symptoms. The aim of this study was to examine the impact of concurrent symptoms on the overlooking of other symptoms in cancer inpatients.

A total of 255 cancer inpatients in the general wards of one university hospital, who were referred to the palliative care team, were included. On the day of referral, nurses and patients were independently assessed for the presence of the following eight symptoms: pain, fatigue, nausea and vomiting, shortness of breath, lack of appetite, dry mouth, sleep problems, and distressed feelings. The presence of delirium was also separately assessed by nurses and psychiatrists on the team. A total of nine symptoms detected by nurses and those reported by patients or psychiatrists were compared, and logistic regression analysis was performed to identify the variables associated with the overlooking of these symptoms.

The most frequently reported symptom was pain (76.5%), followed by distressed feelings (49.8%), sleep problems (34.1%), and delirium (25.1%). The proportion of those overlooked was more than one quarter (25.0–63.6%) for all symptoms except pain (12.8%). Significant associations were found between the overlooking of shortness of breath and concurrent delirium (odds ratio [OR] = 110.9); the overlooking of sleep problems and concurrent lack of appetite (OR = 9.1); and the overlooking of distressed feelings and concurrent dry mouth (OR = 27.7). No patient demographic characteristic was associated with the overlooking of any other symptoms.

The presence of some specific concurrent symptoms is likely to lead to the overlooking of other symptoms in cancer inpatients by nurses. Comprehensive assessments of physical and psychological symptoms in daily clinical practice are needed.