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 aims of this study are to identify the challenges faced by non-palliative care professionals (NPCPs) in caring for end-of-life patients; determine how these challenges interact with and influence each other systemically; and advance the theories and practices for supporting NPCPs in the provision of quality end-of-life care beyond the boundaries of palliative medicine.

A constructivist phenomenological research design with an Interpretive-Systemic Framework of inquiry was adopted. Thirty-five physicians, 35 nurses, and 35 Medical Social Workers who play critical roles in caring for end-of-life patients and belonging to the 9 major medical disciplines of Cardiology, Geriatric, Intensive Care Medicine, Internal Medicine, Nephrology, Neurology, Oncology, Respiratory Medicine, and Surgery were recruited through purposive snowball sampling from 3 major public hospitals.

Framework analysis revealed 5 themes and 17 subthemes that illuminate the individual, relational, cultural, institutional, and structural challenges that NPCPs faced in rendering end-of-life care. These challenges influence each other within the health-care ecosystem, serving to perpetuate or heighten care obstacles.

This is the first known study exploring the systemic challenges of NPCPs spanning 9 major medical disciplines and encompassing 3 professional stakeholders responsible for the care for end-of-life patients, thus ensuring perspective inclusivity across the health-care system. Recommendations that consider the complexity of the interactions between these systemic challenges are presented in detail.

To investigate the prevalence and current approaches to clinical management of chronic nonmalignant pain in patients referred to palliative care services.

A systematic review was performed using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and registered with PROSPERO (CRD42021205432). Six databases were searched on 25 August 2020 and again on 11 July 2022: PubMed and Ovid MEDLINE, Elsevier Scopus, PsychINFO, the Cochrane Library, and CINAHL. Search included prevalence or intervention studies with patients who had chronic nonmalignant pain and were referred to palliative care services. Screening was undertaken independently by 2 reviewers.

The searches returned 417 titles; subsequent screening identified 5 eligible studies, 4 from the USA and 1 from Hong Kong, including 2 cohort and 3 cross-sectional studies. Sample sizes ranged from 137 to 323, with a total of 1,056 patients. The prevalence of chronic nonmalignant pain ranged from 14% to 34% across different palliative care settings. There was significant crossover of pain types; 54% of patients with chronic no-malignant pain had additional cancer-related pain or cancer treatment–related pain. Opioids were used to manage stand-alone chronic nonmalignant pain for 39% of patients compared to 58% with mixed chronic nonmalignant pain and other pain diagnoses.

Five studies have documented the prevalence of chronic nonmalignant pain of 14–34% in palliative care. Further research including prevalence and treatment studies would provide clearer evidence for best practice management of chronic nonmalignant pain in the palliative care setting.

Palliative care can improve the quality of life of adolescents and young adults (AYA) with cancer. However, little is known about the utilization of palliative care among AYA cancer patients. Identifying factors associated with the utilization of palliative care could inform efforts to improve palliative care access among AYA patients living with cancer.

Using data from the National Inpatient Sample 2016–2019, a representative sample of US hospitalizations, we examined palliative care encounters and associated characteristics among hospitalizations of AYA with cancer and high inpatient mortality risk. Survey design–adjusted bivariate and multivariable logistic regression models were used to examine associations of patient- and hospital-level characteristics with palliative care.

Of 10,979 hospitalizations by AYA cancer patients with high mortality risk, 19.9% received palliative care services between 2016 and 2019. After adjusting for all characteristics, independent predictors of palliative care use were as follows: older age (25–39 years old vs. 25–39 years; odds ratio [OR] 1.31, 95% confidence interval [CI] 1.15–1.49), Hispanic/Latinx (vs. non-Hispanic White; OR 1.16, 95% CI 1.01–1.34), female (vs. male; OR 1.27, 95% CI 1.14–1.41), public insurance (vs. private insurance; OR 1.23, 95% CI 1.10–1.38), hospital location in the US South (vs. Northeast; OR 0.78, 95% CI 0.66–0.94), and a large hospital (vs. small; OR 0.83, 95% CI 0.72–0.96).

Less than 20% of AYAs with cancer and high risk of mortality received inpatient palliative care services. Further research is needed to explore the reasons for lower palliative care utilization in the younger age groups.

To assess the barriers that health-care professionals (HCPs) face in having advance care planning (ACP) conversations with patients suffering from advanced serious illnesses and to provide care consistent with patients’ documented preferences.

We conducted a national survey of HCPs trained in facilitating ACP conversations in Singapore between June and July 2021. HCPs responded to hypothetical vignettes about a patient with an advanced serious illness and rated the importance of barriers (HCP-, patient-, and caregiver-related) in (i) conducting and documenting ACP conversations and (ii) providing care consistent with documented preferences.

Nine hundred eleven HCPs trained in facilitating ACP conversations responded to the survey; 57% of them had not facilitated any in the last 1 year. HCP factors were reported as the topmost barriers to facilitating ACP. These included lack of allocated time to have ACP conversations and ACP facilitation being time-consuming. Patient’s refusal to engage in ACP conversations and family experiencing difficulty in accepting patient’s poor prognosis were the topmost patient- and caregiver-related factors. Non-physician HCPs were more likely than physicians to report being fearful of upsetting the patient/family and lack of confidence in facilitating ACP conversations. About 70% of the physicians perceived caregiver factors (surrogate wanting a different course of treatment and family caregivers being conflicted about patients’ care) as barriers to providing care consistent with preferences.

Study findings suggest that ACP conversations be simplified, ACP training framework be improved, awareness regarding ACP among patients, caregivers, and general public be increased, and ACP be made widely accessible.

Body image adjustment is a crucial issue for patients with facial cancer, but body image–specific interventions are scarce. We report results of a novel psychotherapeutic intervention to address body image concerns during acute postoperative recovery following facial reconstructive surgery. Our primary aims were to evaluate the intervention’s feasibility, acceptability, and efficacy on body image concerns, psychological distress, and quality of life (QOL).

Adults with facial cancers who endorsed body image concerns were recruited to participate in a randomized controlled trial. The intervention group participated in 4 in-person counseling sessions. The control group received an educational booklet and a brief phone call. Participants completed measures of body image, distress, and QOL at baseline and at the 4-week follow-up to assess the impact of the intervention. Intervention outcomes were assessed with 2 sample t-tests or Mann–Whitney U tests as appropriate.

Twenty-nine participants completed both the baseline and follow-up assessments. The intervention demonstrated good feasibility with a high retention rate (79%), visit completion rate (81%), and high satisfaction scores (75% reported mean satisfaction score of >3). Intervention did not result in an observed statistically significant difference in reduction in body image dissatisfaction and disturbance, psychological distress, or improvement in QOL compared with the control group. However, intervention resulted in statistically significant difference in perceived social impact (−1 vs. −8.3, p = 0.033) compared to control group.

Our study highlights the potential clinical benefits of a novel psychotherapeutic intervention that targets body image concerns and suggests the need for further evaluation.

Computer-mediated and telephone communication connecting professionals and patients (eHealth) is well established. Yet there is little information about psychosocial interventions delivered by trained practitioners for a palliative care population. The aim is to describe digitally enabled psychosocial interventions offered to adults with life-shortening or terminal illnesses and carers/families receiving palliative care, and how these are delivered and evaluated.

Using Joanna Briggs Institute scoping review methodology, 4 databases (MEDLINE, CINAHL, PsycINFO, and Academic Search Ultimate) were searched (January 2011–April 2021). Inclusion criteria: (a) any design reporting and (b) psychosocial interventions delivered digitally by palliative care health and social care practitioners to (c) adults with life-shortening illnesses.

Included papers (n=16) were from Europe ((n=8), Asia (n=2), and the USA (n=6). Research designs encompassed pre- and post-studies, randomized control trials, feasibility, and pilot studies. Tools evaluated psychological, somatic, functional, and psychosocial outcomes. Underpinning approaches included cognitive behavioral therapy, Erikson’s life review, coping skills training, psychoeducation, problem-solving therapy, counseling, emotional support and advice, and art therapy. Delivery tools used were telephones, text messages and emails, websites, videos, workbooks, and compact discs. Practitioners included counselors, psychotherapists, psychologists, art therapists, social workers, registered nurses, and trainees. Patients had Alzheimer’s disease and related dementias, advanced cancers, chronic obstructive pulmonary disease, and heart failure.

COVID-19 has accelerated the usages of digitally enabled psychosocial interventions. Evidence indicates a growing interest in hybrid, novel, synchronous, and asynchronous digital psychosocial interventions for adults with life-shortening illnesses and their caregivers receiving palliative care.

Caregivers of adult phase 1 oncology trial patients experience high levels of distress and face barriers to in-person supportive care. The Phase 1 Caregiver LifeLine (P1CaLL) pilot study assessed the feasibility, acceptability, and general impact of an individual telephone-based cognitive behavioral stress-management (CBSM) intervention for caregivers of phase I oncology trial patients.

The pilot study involved 4 weekly adapted CBSM sessions followed by participant randomization to 4 weekly cognitive behavioral therapy sessions or metta-meditation sessions. A mixed-methods design used quantitative data from 23 caregivers and qualitative data from 5 caregivers to examine the feasibility and acceptability outcomes. Feasibility was determined using recruitment, retention, and assessment completion rates. Acceptability was assessed with self-reported satisfaction with program content and participation barriers. Baseline to post-intervention changes in caregiver distress and other psychosocial outcomes were assessed for the 8-session intervention.

The enrollment rate was 45.3%, which demonstrated limited feasibility based on an a priori criterion enrollment rate of 50%. Participants completed an average of 4.9 sessions, with 9/25 (36%) completing all sessions and an 84% assessment completion rate. Intervention acceptability was high, and participants found the sessions helpful in managing stress related to the phase 1 oncology trial patient experience. Participants showed reductions in worry and isolation and stress.

The P1CaLL study demonstrated adequate acceptability and limited feasibility and provided data on the general impact of the intervention on caregiver distress and other psychosocial outcomes. Caregivers of phase 1 oncology trial patients would benefit from supportive care services; a telephone-based intervention may have more utilization and thus make a larger impact.

To describe nurses’ experiences of caring for individuals who have attempted suicide in specialized palliative care and to describe if the care of these individuals changed after the suicide attempt.

A qualitative, descriptive study was conducted. Nine nurses working in specialized palliative care units were interviewed following a semi-structured interview guide. Conventional content analysis was used in the analysis process.

The results are presented in 3 categories: “A suicide attempt evokes strong emotions,” “Health-care efforts changed after the suicide attempt,” and “Experiences for the rest of working life.” Suicide attempts aroused emotions in nurses such as frustration, compassion, and feelings of being manipulated. The relationship between the nurse and the individual was strengthened after the suicide attempt, and their conversations became deeper and changed in nature. Health-care efforts relating to the individual increased after the suicide attempt.

The results of the study can create an awareness that the palliative process also includes the risk of suicide and can be used to create conditions for nurses to be able to handle questions about suicide without fear. The results of the study can be used as an “eye opener” to the fact that suicidality occurs in palliative care. In summary, there is a critical need for nursing education in suicide risk assessment and continued follow-up care for patients at risk of suicide within palliative care.

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.

This study aims to explore seriously ill patients’ experiences during goals-of-care discussions and perspectives of end-of-life (EOL) decision-making in the Middle Eastern country of Jordan.

This is a qualitative descriptive study with semi-structured, one-on-one interviews. Settings were 2 large hospitals in Jordan. Patients were a purposeful sample of 14 Arabic-speaking adults who were seriously ill and hospitalized with palliative care needs.

Conventional content analysis identified 4 main themes: perceived suffering during serious illness, attitudes toward discussing EOL decision-making, goals of care and preferences for EOL, and actions to enhance EOL decision-making. Disease and treatment burdens and concerns about life, family, and death were sources of suffering during serious illness. What matters most to patients at EOL were alleviating suffering and getting support from family, friends, and care providers. Although patients expressed reluctance and inaction toward EOL decision-making due to uncertainties, lacking awareness, and assumptions of fear, their potential goals of care were to live longer, be with their families, and die with dignity.

Jordanians and culturally similar Arabs could benefit from goals-of-care discussions. The proper, culturally sensitive implementation of goals-of-care discussions in Arab populations with similar cultural norms requires raising public awareness and clarifying the legitimacy of goals-of-care discussions, preparing patients and their families for the discussions, and considering individual variations in handling the discussions.

Our research aims to compare the perception that children in the pediatric palliative care setting have of their emotional well-being, or that expressed by the parents, with the perception held by the professionals involved in their care.

In this cross-sectional study, the emotional well-being of 30 children with a mean age of 10.8 years (standard deviation [SD] = 6.1) is evaluated. Children, or parents where necessary, evaluate their situation with a question about emotional well-being on a 0–10 visual analog scale. For each child, a health professional also rates the child’s emotional status using the same scale.

The average child’s emotional well-being score provided by children or parents was 7.1 (SD = 1.6), while the average score given by health professionals was 5.6 (SD = 1.2). Children or parents graded the children’s emotional well-being significantly higher than professionals (t-test = 4.6, p-value < .001). Health professionals rated the children’s emotional well-being significantly lower when the disease status was progressive than when the disease was not (t-test = 2.2, p-value = .037).

Children themselves, or their parents, report more positive evaluations of emotional well-being than health professionals. Sociodemographic and disease variables do not seem to have a direct influence on this perception, rather it is more likely that children, parents, and professionals focus on different aspects and that children or parents need to hold on to a more optimistic vision. We must emphasize that when this difference is more pronounced, it can be a warning sign that further analysis is required of the situation.

Since 2015, the Harvard Workshop on Research Methods in Supportive Oncology has trained early-career investigators in skills to develop rigorous studies in supportive oncology. This study examines workshop evaluations over time in the context of two factors: longitudinal participant feedback and a switch from in-person to virtual format during the COVID pandemic.

We examined post-workshop evaluations for participants who attended the workshop from 2015 to 2021. We qualitatively analyzed evaluation free text responses on ways in which the workshop could be improved and “other comments.” Potential areas of improvement were categorized and frequencies were compiled longitudinally. Differences in participants' ratings of the workshop and demographics between in-person and virtual formats were investigated with t-tests and Chi-square tests, respectively.

286 participants attended the workshop over 8 years. Participant ratings of the workshop remained consistently high without substantial variation across all years. Three main themes emerged from the “other comments” item: (1) sense of community; (2) passion and empowerment; and (3) value of protected time. Participants appeared to identify fewer areas for improvement over time. There were no significant differences in participant ratings or demographics between the in-person and virtual formats.

While the workshop has experienced changes over time, participant evaluations varied little. The core content and structure might have the greatest influence on participants’ experiences.

Given the rising burden of palliative care and the limited human resources for its facilitation in China, volunteers are becoming increasingly indispensable. In particular, there is a high demand for volunteers who can serve as spiritual caregivers. However, a volunteer’s ability to provide good spiritual care in a palliative setting may be influenced by their attitude toward palliative care. To uncover the current state of spiritual caregiving in palliative settings in China and insights into best practices for its improvement, this study measured spiritual care competence and identified its influencing factors and explored its relationship with attitudes toward palliative care among volunteers. Notably, this study is the first to consider spiritual care competence alongside attitudes toward palliative care.

A descriptive cross-sectional study using online survey methods was conducted with 385 volunteers in Shanghai, China. Data were collected using a structured questionnaire.

Volunteers demonstrated relatively low levels of spiritual care competence (58.50 ± 10.92). Statistically significant correlations were found between spiritual care competence and the following variables: age, educational background, marital status, religious beliefs, occupational status, and relevant training and practical experience. Attitude toward palliative care significantly correlated with spiritual care competence (r = 0.49, p < 0.001).

To continually improve volunteers’ spiritual care competence, diversified education and training programs about spiritual care should be designed for different kinds of volunteers; moreover, because attitude toward palliative care significantly impacted spiritual care competence, such programs should encourage positive attitudes toward palliative care.

Psychological consequences of grief among relatives are insufficiently known. We reported incidence of prolonged grief among relatives of deceased patients with cancer.

Prospective cohort study of 611 relatives of 531 patients with cancer hospitalized for more than 72 hours and who died in 26 palliative care units was conducted. The primary outcome was prolonged grief in relatives 6 months after patient death, measured with the Inventory Complicated Grief (ICG > 25, range 0–76, a higher score indicates more severe symptoms) score. Secondary outcomes in relatives 6 months after patient death were anxiety and depression symptoms based on Hospital Anxiety and Depression Scale (HADS) score (range 0 [best]–42 [worst]), higher scores indicate more severe symptoms, minimally important difference 2.5. Post-traumatic stress disorder symptoms were defined by an Impact Event Scale-Revised score >22 (range 0–88, a higher score indicates more severe symptoms).

Among 611 included relatives, 608 (99.5%) completed the trial. At 6 months, significant ICG scores were reported by 32.7% relatives (199/608, 95% CI, 29.0–36.4). The median (interquartile range ICG score) was 20.0 (11.5–29.0). The incidence of HADS symptoms was 87.5% (95% CI, 84.8–90.2%) at Days 3–5 and 68.7% (95% CI, 65.0–72.4) 6 months after patient’s death, with a median (interquartile range) difference of −4 (–10 to 0) between these 2 time points. Improvement in HADS anxiety and depression scores were reported by 62.5% (362/579) relatives.

These findings support the importance of screening relatives having risk factors of developing prolonged grief in the palliative unit and 6 months after patient’s death.

To evaluate an enrichment training program targeted at home palliative care professionals in terms of its effects and participants’ satisfaction. The program had 2 main aims: give voice to professionals’ emotional fatigue and promote their personal resources.

One hundred twenty-three home palliative care professionals participated in 12 parallel training courses; each course consisted of four 3-hour meetings led by 2 trainers and involved about 10–15 participants. The program adopted the method and tools typical of the enrichment approach, with the insertion of an art therapy exercise in the central meetings. The topics addressed were the following: emotional awareness in care relationship; the recognition of the needs of the patient, the family, and the professional himself; the inevitability of the death of the patient; and the challenges and resources of the multidisciplinary care team. At the first (T1) and last (T2) meetings, participants filled in a self-report questionnaire assessing work emotional fatigue, empowerment, generativity, and satisfaction with the course.

Participants were highly satisfied with the course. They reported a higher level of work emotional fatigue and a higher perception of personal resources, in terms of empowerment (both individual-oriented and relationship-oriented) and generativity at the end of the program than before.

Results confirm the need to provide home palliative care professionals with trainings in which they can express, share, and deal with personal and professional needs. This course gave voice to professionals’ work emotional fatigue and promoted their personal resources, while enhancing collaboration in the multidisciplinary team.

Family caregivers’ (FCs) caregiving in nursing home (NH) moves across 3 main phases: transitioning relatives to long-term care, worsening of a relative’s conditions, and end of life; each phase brings specific challenges that FCs must confront. Moreover, during the COVID-19 pandemic, strict mandatory visitor restrictions affected communication modalities. This study explored FCs’ experience of communication with NH staff during the COVID-19 pandemic from admission to end of life.

A descriptive qualitative study with inductive content analysis was performed in 7 Italian NHs from May to June 2021. NH managers purposively identified 25 FCs at different phases of their caregiving trajectory: transitional (i.e., admission in the previous 8 weeks, n = 8), deterioration-in-condition (i.e., acknowledged changes in care needs of their relative after trigger events, n = 10), and end-of-life phase (i.e., death expected in the next weeks or a few months, n = 7), who were interviewed.

Regardless the phase of caregiving trajectory, what mattered most to FCs was the opportunity to have regular and sensitive discussions with health-care professionals. The need of in-person communication increased nearing death. The COVID-19 pandemic enhanced FCs’ need to interact with health-care professionals they trusted. Knowledge of residents’ preferences mitigated FCs’ turbulent emotions throughout the overall caregiving trajectory.

Findings suggest that in-person contacts should be prioritized and facilitated when possible, particularly at the end of life; nonetheless, meaningful communication can occur also through remote modalities. Investments in training health-care professionals about effective long-distance communication and supportive skills can help trusting relationships to be established. Open discussions about residents’ care preferences should be encouraged.

Complicated grief can affect a large number of individuals who have lost a relative due to cancer.

To assess the efficacy of a cognitive–behavioral grief therapy (CBGT) group for complicated grief (CG) in those who have lost a relative due to cancer in comparison with a psychoeducational and emotional expression intervention group (PSDEEI).

A randomized clinical trial was used, in which 249 relatives of deceased cancer patients with CG were randomly assigned to CBGT or PSDEEI. Complicated grief (Inventory of Complicated Grief [ICG]), depression (Beck Depression Inventory [BDI-II]), hopelessness (Beck Hopelessness Scale [BHS]), anxiety (Beck Anxiety Inventory [BAI]) symptoms, and general health (Goldberg’s General Health Questionnaire [GHQ28]) were assessed at pretreatment, posttreatment, and follow-up at 6 and 12 months.

The CBGT group improved significantly (p < 0.001), with the scores in ICG, BDI-II, BAI, BHS, and GHQ28 (p < 0.001) being higher than those for the PSDEEI group in each of the assessed moments, with high effect sizes: ICG (η2 = 0.16), BDI (η2 = 0.10), BAI (η2 = 0.06), BHS (η2 = 0.21), and GHQ28 (η2 = 0.21). At the 12-month follow-up, the number of cases of CG decreased by 81.1% for the CBGT group vs. 31.7% in the PSDEEI group.

The CBGT treatment was effective for CG, depression, anxiety, and hopelessness symptoms and for mental health and was superior to the PSDEEI treatment.

The early introduction of palliative care can have a positive impact on the quality of life of patients suffering from life-limiting diseases. However, the palliative care needs of older, frail, housebound patients are still mostly unknown, as is the impact of frailty on the importance of these needs.

To identify the palliative care needs of frail, older, housebound patients in the community.

We conducted a cross-sectional observational study. This study took place in a single primary care center and included patients who were ≥65 years old, housebound, followed by the Geriatric Community Unit of the Geneva University Hospitals.

Seventy-one patients completed the study. Most patients were female (56.9%), and mean age (SD) was 81.1 (±7.9). The Edmonton Symptom Assessment Scale mean (SD) score was higher in frail patients as opposed to vulnerable patients for tiredness (p = 0.016), drowsiness (p = 0.0196), loss of appetite (p = 0.0124), and impaired feeling of well-being (p = 0.0132). There was no difference in spiritual well-being, measured by the spiritual scale subgroup of the Functional Assessment of the Chronic Illness Therapy–Spiritual Well-Being scale (FACIT-sp) between frail and vulnerable participants, although scores in both groups were low. Caregivers were mainly spouses (45%) and daughters (27.5%) with a mean (SD) age of 70.7 (±13.6). The overall carer–burden measured by the Mini-Zarit was low.

Older, frail, housebound patients have specific needs that differ from non-frail patients and should guide future palliative care provision. How and when palliative care should be provided to this population remains to be determined.

Older adults with severe dementia experience multiple symptoms at the end of life. This study aimed to delineate distinct symptom profiles of older adults with severe dementia and to assess their association with older adults’ and caregiver characteristics and 1-year mortality among older adults.

We used baseline data from a cohort of 215 primary informal caregivers of older adults with severe dementia in Singapore. We identified 10 indicators representing physical, emotional, and functional symptoms, and responsive behaviors, and conducted latent class analysis. We assessed the association between delineated older adults’ symptom profiles and their use of potentially burdensome health-care interventions in the past 4 months; older adults’ 1-year mortality; and caregiver outcomes.

We delineated 3 profiles of older adults – primarily responsive behaviors (Class 1; 33%); physical and emotional symptoms with responsive behaviors (Class 2; 20%); and high functional deficits with loss of speech and eye contact (Class 3; 47%). Classes 2 and 3 older adults were more likely to have received a potentially burdensome intervention for symptoms in the past 4 months and have a greater hazard for 1-year mortality. Compared to Class 1, caregivers of Class 2 older adults were more likely to experience adverse caregiver outcomes, that is, higher distress, impact on schedule and health, anticipatory grief, and coping and lower satisfaction with care received (p<0.01 for all).

The 3 delineated profiles of older adults can be used to plan or optimize care plans to effectively manage symptoms of older adults and improve their caregivers’ outcomes.