Family involvement in the lives of people who have dementia and live in long-term care is important, but family members may face challenges communicating and connecting with their loved one as dementia progresses. A type of therapeutic humor (Laughter Care) delivered by trained specialists aims to engage people with dementia who reside in long-term care through creative play and laughter. This study aimed to explore the perceptions of Laughter Care Specialists (LCSs) regarding families’ engagement with the program.

Semi-structured interviews were conducted with LCSs (n = 8) and analyzed inductively using thematic analysis.

Family members were reported to initially have varied degrees of openness toward Laughter Care, but often become more accepting after observing positive engagement with the person with dementia. Family members were perceived to benefit from the program through witnessing the person with dementia enjoy joyous and light interactions, learn new ways of communicating and connecting with the person with dementia, and engage in positive interactions at end of life.

Laughter Care may provide family members with novel ways of communicating and connecting with people who have dementia at end of life as well as comfort into bereavement.

Olanzapine is an atypical neuroleptic indicated for treatment of various psychiatric disorders, but it has also several indications in palliative care (PC) patients: opioids misuse, nausea not related to chemotherapy, anorexia-cachexia syndrome, and sleep and mood disorders. Peripheral and facial edema are a rare side effect of the treatment with olanzapine. I report a case of an advanced cancer patient cared receiving PC who developed moderate tongue edema on day 1 of a low dose of olanzapine.

A patient with advance and metastatic colon cancer presented moderate tongue edema on day 1 of a low dose (2.5 mg) of olanzapine for the treatment of his nausea, anorexia-cachexia syndrome, and mood disorder (mainly anxiety).

The patient discontinued the drug with resolution of the edema. The day after he called our outpatients’ service, a prompt physical examination, together with blood tests, excluded other differential diagnosis.

To the best of our knowledge, this is the second case reporting head and neck localized edema due to olanzapine treatment in a patient with advanced cancer receiving PC. Considering the increasing use of olanzapine as off-label treatment in these patients (often for cluster symptoms), our report could help clinicians in daily practice and researchers on put a deeper focus on indications for olanzapine in PC.

We aimed to investigate effects of prognostic communication strategies on emotions, coping, and appreciation of consultations in advanced cancer.

For this experimental study, we created 8 videos of a scripted oncological consultation, only varying in prognostic communication strategies. Disease-naive individuals (n = 1036) completed surveys before and after watching 1 video, while imagining being the depicted cancer patient. We investigated effects of the type of disclosure (prognostic disclosure vs. communication of unpredictability vs. non-disclosure) and content of disclosure (standard vs. standard and best-case vs. standard, best- and worst-case survival scenarios; numerical vs. word-based estimates) on emotions, coping, and appreciation of consultations. Moderating effects of individual characteristics were tested.

Participants generally reported more satisfaction (p < .001) after prognostic disclosure versus communication of unpredictability and less uncertainty (p = .042), more satisfaction (p = .005), and more desirability (p = .016) regarding prognostic information after numerical versus word-based estimates. Effects of different survival scenarios were absent. Prognostic communication strategies lacked effects on emotions and coping. Significant moderators included prognostic information preference and uncertainty tolerance.

In an experimental setting, prognostic disclosure does not cause more negative emotions than non-disclosure and numerical estimates are more strongly appreciated than words. Oncologists’ worries about harming patients should not preclude disclosing (precise) prognostic information, yet sensitivity to individual preferences and characteristics remains pivotal.

According to the “Last Year of Life in Cologne” study, 68% of patients with a serious and terminal illness wanted to die at home, but 42% died in hospital. Only 1 in 5 died at home. Most people want to spend their last days and hours at home, but the reality is that this is not always possible. Recommendations are needed on how best to support families to enable people to die at home – if this is their preferred place of death. Our aim was to identify the factors that make it possible for people to die at home and to analyze factors of dying at home.

Germany-wide quantitative cross-sectional online survey of bereaved adult relatives.

The needs of 320 relatives of patients who wished to die at home were explored. Of these, 198 patients died at home and 122 did not. In the last 3 months of life, caregivers needed support in managing out-of-hours care (p < 0.001), financing (p = 0.012), preparing and organizing home care (both p < 0.001), communicating with the patient and medical staff (p = 0.012 and p = 0.009, respectively), and pain management (p < 0.001). Relatives whose next of kin did not die at home had higher needs, suggesting that these factors are key to home care of the dying.

The process of dying at home begins long before the actual dying phase. To minimize caregiver burden and improve symptom management, advanced home care plans are needed, with ongoing reassessment of family preferences and abilities.

We determined the validity and reliability of the Spanish translation Sheffield Profile for Assessment and Referral for Care (SPARC-Sp) questionnaire to identify the palliative care (PC) needs of patients with chronic noncommunicable diseases (NCDs) in Colombia.

We developed a cross-sectional observational study of scale assessment in adults with the aim of determining the validity and reliability of the SPARC-Sp questionnaire to identify the PC needs of patients with NCDs receiving outpatient or inpatient care at the Hospital Universitario San Jose of Popayan – ESE, Colombia, from 2021 to 2022.

We applied a questionnaire consisting of demographic, clinical data, and SPARC-Sp to 507 participants. The constructed model explained 75% of the variance with an adequate fit according to the root mean square residual (0.03), the comparative fit index (0.98), and acceptable reliability (McDonald’s total omega 0.4–0.9). Opportunities for improvement are the reformulation and inclusion of particular words to improve the representativeness and clarity of the domains of communication and information, religious, and spiritual issues.

This research represents the first validation of SPARC in Spanish. SPARC-Sp is an instrument that allows initiating a conversation of the patient’s main needs through a systematic assessment of the patients’ main needs. Its psychometric validation demonstrated good fit and acceptable reliability.

High levels of caregiver burden (CB) are experienced by informal caregivers of pediatric patients with cancer. There is increasing evidence highlighting the extent of CB across sub-Saharan African countries, although there remains lack of interventions that target improvements in their experience. This study aimed to determine the impact of a structured psychoeducation program on caregivers’ outcomes relating to preparedness to provide care, burden of caregiving, and quality of life (QoL).

This quasi-experimental (pre-and-posttest) design, involved family caregivers of children on admission for cancer treatment in 4 Nigerian tertiary hospitals. Eligible participants received 2 structured, psychoeducational training sessions delivered by a multidisciplinary oncology team, focusing on the management of patients’ condition, spiritual care, self-care, and support.

Subjects were mainly female (79.5%) and mostly mothers to children undergoing cancer treatment (74.7%). Commonest cancer type was acute lymphoblastic leukemia (23.9%) with evidence of metastatic disease found in 9.6% of children. Significant improvements were observed between pre- and posttest for unmet needs (z = −9.3; p < 0.001), preparedness for caregiving in palliative care (PCPC) (z = −7.0; p < 0.001), and overall QoL (z = −7.3; p < 0.001). A significant reduction in CB was also reported (z = −8.7; p < 0.001).

This psychoeducational intervention (PEI) resulted in significant improvements in unmet needs, CB and significant improvements in PCPC. However, a reduction in QoL of the family caregivers was also observed. Findings from this study should encourage the use of well-crafted PEIs, delivered within hospital settings to promote improvements in outcomes for informal caregivers of hospitalized children suffering from cancer, in an African context. Further intervention development is required to better understand intervention components influencing changes in outcomes, while exploring feasibility testing and adaptation to similar settings in Nigeria and within Africa.

The main objective was to pilot the culturally adapted “Educate, Nurture, Advise, Before Life Ends” for Singapore (ENABLE-SG) model to evaluate its feasibility and potential effectiveness.

A single-arm pilot trial of ENABLE-SG among patients with advanced solid tumors and caregivers of these patients was conducted in the outpatient oncology clinic setting. Enrolled participants participated in individual ENABLE-SG psychoeducational sessions weekly. Patients had 6 sessions on the topics of maintaining positivity, self-care, coping with stress, managing symptoms, exploring what matters most and life review. Caregivers had 4 sessions on the topics of maintaining positivity, self-care, coping with stress and managing symptoms. At baseline, 4, 8, and 12 months after enrolment, patient’s quality of life was measured using the Functional Assessment of Chronic Illness Therapy – Palliative Care, patient’s mood was measured using the Center for Epidemiologic Studies – Depression scale, and caregiver quality of life was measured using the Singapore Caregiver Quality of Life Scale.

We enrolled 43 patients and 15 caregivers over a 10-month period from August 2021 to June 2022. Although there was a low approach-to-participation rate, most of those who enrolled completed all ENABLE-SG sessions – 72% for patients and 94% for caregivers. Caregivers had better quality of life over time, specifically in the subscales of mental well-being and experience-meaning.

Based on findings from this study, we are planning a randomized waitlist-controlled trial of ENABLE-SG for patients with advanced cancer and their caregivers.

Substance use disorders (SUDs) are frequently encountered in hospice palliative care (HPC) and pose substantial quality-of-life issues for patients. However, most HPC physicians do not directly treat their patients’ SUDs due to several institutional and personal barriers. This review will expand upon arguments for the integration of SUD treatment into HPC, will elucidate challenges for HPC providers, and will provide recommendations that address these challenges.

A thorough review of the literature was conducted. Arguments for the treatment of SUDs and recommendations for physicians have been synthesized and expanded upon.

Treating SUD in HPC has the potential to improve adherence to care, access to social support, and outcomes for pain, mental health, and physical health. Barriers to SUD treatment in HPC include difficulties with accurate assessment, insufficient training, attitudes and stigma, and compromised pain management regimens. Recommendations for physicians and training environments to address these challenges include developing familiarity with standardized SUD assessment tools and pain management practice guidelines, creating and disseminating visual campaigns to combat stigma, including SUD assessment and intervention as fellowship competencies, and obtaining additional training in psychosocial interventions.

By following these recommendations, HPC physicians can improve their competence and confidence in working with individuals with SUDs, which will help meet the pressing needs of this population.

This umbrella review will summarize palliative and end-of-life care practices in peri-intensive care settings by reviewing systematic reviews in intensive care unit (ICU) settings. Evidence suggests that integrating palliative care into ICU management, initiating conversations about care goals, and providing psychological and emotional support can significantly enhance patient and family outcomes.

The Joanna Briggs Institute (JBI) methodology for umbrella reviews will be followed. The search will be carried out from inception until 30 September 2023 in the following databases: Cochrane Library, SCOPUS, Web of Science, CINAHL Complete, Medline, EMBASE, and PsycINFO. Two reviewers will independently conduct screening, data extraction, and quality assessment, and to resolve conflicts, adding a third reviewer will facilitate the consensus-building process. The quality assessment will be carried out using the JBI Critical Appraisal Checklist. The review findings will be reported per the guidelines outlined in the Preferred Reporting Items for Overviews of Reviews statement.

This umbrella review seeks to inform future research and practice in critical care medicine, helping to ensure that end-of-life care interventions are optimized to meet the needs of critically ill patients and their families.

With targeted therapies, people are surviving longer with advanced lung cancer and engaging in online lung cancer support communities. While these groups provide a sense of community, witnessing the death of peers can lead to emotional distress. This qualitative study aims to (1) explore the experience of witnessing death in online cancer support groups; (2) identify factors that contribute to the emotional struggles of witnessing the death of peers; and (3) identify strategies/options for dealing with losses in the cancer community.

We conducted a cross-sectional analysis of qualitative interviews exploring existential concerns with participants (n = 25) from oncogene-specific online lung cancer support groups. The principal investigator conducted study interviews between August 2018 and March 2019 where participants were asked about their cancer experiences and existential concerns. We used thematic analysis and NVIVO 11 software to examine and store the de-identified interview data.

Participants indicated that they had often witnessed their peers die and felt the pain of the loss. Factors that played a part in their struggle with witnessing others’ death included the closeness of the relationship with the person, the age of the person who died, seeing oneself in the experience of the other dying, disparities in care, and losing touch in the final stages. Participants used varied coping strategies such as celebrating the life of the individual who died, engaging in advocacy efforts, not focusing on the loss, participating in therapy, and bringing self-preserving thoughts.

Our study highlights the importance of addressing existential fears in online lung cancer support groups and incorporating conversations about death in spaces that deal with cancer.

There is concern that hydroxyzine exacerbates delirium, but a recent preliminary study suggested that the combination of haloperidol and hydroxyzine was effective against delirium. This study examined whether the concomitant use of hydroxyzine and haloperidol worsened delirium in patients with cancer.

This retrospective, observational study was conducted at 2 general hospitals in Japan. The medical records of patients with cancer who received haloperidol for delirium from July to December 2020 were reviewed. The treatments for delirium included haloperidol alone or haloperidol combined with hydroxyzine. The primary outcome was the duration from the first day of haloperidol administration to the resolution of delirium, defined as its absence for 2 consecutive days. The time to delirium resolution was analyzed to compare the haloperidol group and hydroxyzine combination group using the log-rank test with the Kaplan–Meier method. Secondary outcomes were (1) the total dose of antipsychotic medications, including those other than haloperidol (measured in chlorpromazine-equivalent doses), and (2) the frequencies of detrimental incidents during delirium, specifically falls and self-removal of drip infusion lines. The unpaired t-test and Fisher’s exact test were used to analyze secondary outcomes.

Of 497 patients who received haloperidol, 118 (23.7%) also received hydroxyzine. No significant difference in time to delirium resolution was found between the haloperidol group and the hydroxyzine combination group (log-rank test, P = 0.631). No significant difference between groups was found in either chlorpromazine-equivalent doses or the frequency of detrimental incidents.

This study showed that the concomitant use of hydroxyzine and haloperidol did not worsen delirium in patients with cancer.

This study aimed to develop the conversation tool “I-HARP for COPD” for timely identification of palliative care needs in Dutch patients with chronic obstructive pulmonary disease (COPD).

An iterative and participatory research design was used to develop “I-HARP for COPD”. There were 2 phases to the development of “I-HARP for COPD”: content development and testing. A review of current literature, parallel focus groups, and a questionnaire among experts were used to develop the content of “I-HARP for COPD”. “I-HARP for COPD” was then assessed by health-care professionals (HCPs) in clinical practice for understanding, difficulty, and relevance.

A total of 46 HCPs, 6 patients, 1 informal caregiver, and 1 bereaved informal caregiver participated in this study. “I-HARP for COPD” included 14 screening questions, additional in-depth questions, and recommendations to address identified needs. The content of “I-HARP for COPD” was accepted by 86.2% of the HCPs.

“I-HARP for COPD” was successfully developed for providing guidance in the palliative care of Dutch patients with COPD and their informal caregivers. By supporting HCPs with “I-HARP for COPD”, they are better able to timely identify and direct palliative care needs.

Specialist-provided end-of-life scenarios (SP-EOLS) may improve advance care planning (ACP) implementation in primary care by helping overcome barriers such as uncertain prognosis and poor interprofessional collaboration. We aimed to explore the current use and potential impact of SP-EOLS on ACP in Dutch primary care.

We performed a mixed-methods study. From patients discussed in a hospital-based academic palliative care multidisciplinary team meeting between 2016 and 2019 and died, we collected primary care electronic medical records data on SP-EOLS, actual EOLS, and ACP initiation and applied descriptive and comparative analyses. Subsequently, we interviewed general practitioners (GPs) and thematically analyzed the transcripts.

In 69.7% of 66 reviewed patient files, SP-EOLS were found. In patients whose GP had received SP-EOLS, ACP conversations were more often reported (92.0 vs. 61.0%, p = 0.006). From 11 GP interviews, we identified 4 themes: (1) SP-EOLS guide GPs, patients, and relatives when dealing with an uncertain future perspective; (2) SP-EOLS provide continuity of care between primary and secondary/tertiary care; (3) SP-EOLS should be tailored to the individual patient; and (4) SP-EOLS need to be personalized and uniformly transferred to GPs.

SP-EOLS may facilitate ACP conversations by GPs. They have the potential to help overcome existing barriers to ACP implementation by providing guidance and supporting interprofessional collaboration. Future research should focus on improving SP-EOLS and tailor them to the needs of all end users, focusing on improving their effect on ACP conversations.

Adolescents with cancer often experience significant symptom burden and aggressive treatment near end-of-life. Increased adolescent involvement in care and decision-making may benefit health outcomes. Limited research has examined factors associated with adolescents’ involvement in care in the context of advanced disease. Thus, we examined the impact of background factors and decision-making perceptions on both adolescents’ involvement in care and their desired change in involvement.

Adolescents with advanced cancer (<60% survival or refractory/relapsed disease), ages 10–23 (n = 41; Mage = 15.37), were recruited approximately 1 month after diagnosis to complete measures of decision-making perceptions and their family role. Hierarchical regressions examined the contributions of background factors and decision-making perceptions to adolescents’ frequency and desired involvement in their care. Qualitative interviews regarding decision-making were analyzed using deductive analysis.

The model examining frequency of involvement in care was significant, F(5,34) = 3.12, p = .02, R2 = .31. Older age was the only significant predictor (β = .13, p = .003). The model examining desired involvement was non-significant, F(5,34) = 2.22, p = .075. Qualitative analysis indicated that (1) older adolescents have more involvement in decision-making, (2) collaborative decision-making occurred between the adolescent and extended family, and (3) adolescents trusted others to make decisions. Integration of qualitative and quantitative data revealed congruence in findings.

Adolescents with advanced cancer, who consider how decisions directly impact them and prefer greater autonomy, may be more involved in their medical care. Research is needed to identify other longitudinal predictors of decision-making and involvement in care. Providers should consider encouraging families to communicate their preferences and engage in shared decision-making.

We aimed to translate and linguistically and cross-culturally validate Sheffield Profile for Assessment and Referral for Care (SPARC) in Spanish for Colombia (SPARC-Sp).

The linguistic validation of SPARC followed a standard methodology. We conducted focus groups to assess the comprehensibility and feasibility. The acceptability was assessed using a survey study with potential users.

The comprehensibility assessment showed that additional adjustments to those made during the translation-back-translation process were required to apply SPARC-Sp in rural and low-schooled populations. It also identified the need for alternative administration mechanisms for illiterate people. The acceptability survey showed that potential users found SPARC-Sp as not only acceptable but also highly desirable. However, they desired to expand the number of items in all domains.

Beyond the semantic and conceptual validity attained through the back-translation process, actual cultural validity could be acquired thanks to the comprehensibility tests. Although extending the instrument is something potential users would like to do, it would make it less feasible to utilize the SPARC-Sp in clinical settings. Nonetheless, the instrument might benefit from the inclusion of a domain that evaluates challenges encountered when accessing the health-care system. For communities lacking literacy, alternate administration methods must also be considered.

Patients with terminal cancer receiving home palliative care present differential healthcare utilization trajectories before death. It remains unclear which situational elements influence these trajectories among disparate patient groups. The aim of this study was to compare situational influences on “persistently high” and “low stable” trajectories of healthcare utilization in patients who received palliative care support at home.

Bereaved family caregivers were recruited from our prior quantitative study investigating healthcare utilization trajectories in oncology patients on home-based palliative care. In-depth interviews were conducted with 30 family caregivers. Data were analyzed using thematic analysis.

Analysis of data uncovered how the 2 utilization trajectories were influenced by the interplay of 1 or more of 4 situational elements. Perceived symptom control in patients, influenced by their determination to die at home, shapes the susceptibility to situational contingencies, resulting in differential utilization trajectories. Caregivers’ mental readiness in dealing with unexpected circumstances has a significant impact on the overall manageability of care, ultimately affecting decisions related to healthcare utilization. The concordance between symptom needs and scope of homecare services in a given situation proves to be an important determinant. Lastly, perceived accessibility to informal support in times of need acts as a contextual reinforcement, either preventing or precipitating decisions regarding healthcare utilizations.

Our findings hold important implications for the provision of homecare services, in particular, the need for comprehensive assessment of end-of-life wishes during homecare enrolment and strengthening psychological preparedness of caregivers. Expansion of home-based clinical interventions tailored to high utilizers, and funding for temporary in-home respite should be considered to optimally manage potentially preventable acute healthcare utilization.

In Chochinov’s dignity model, living in the here and now (mindful living) is explicitly stated as a dignity-conserving practice. However, what facilitates mindful living remain unclear. This study aims to investigate the mechanisms of mindful living among Asian terminally ill patients.

This interpretative phenomenological analysis comprised patients aged 50 and above with a prognosis of less than 12 months. Fifty interview transcripts from a larger Family Dignity Intervention study conducted in Singapore were used for the analysis.

Findings revealed 12 themes that were organized into 3 axioms of mindful living for dignified dying: (a) purposive self-awareness, (b) family-centered attention, and (c) attitudes of mortality acceptance. Through purposive self-awareness, patients introspected their lived experience with illness and anticipated death to find resilience and contentment. Patients’ conscious family-centered attention revolved around their relationships, achievements, and legacy within the family, leading to a deepened sense of interconnectedness with self and beloved others at life’s end. Lastly, patients adopted nonjudgmental attitudes of mortality acceptance as they made necessary arrangements in preparation for their death, allowing them to treasure every living moment and obtain a closure in life. An empirical model of mindful living for dignified dying was developed based on these emerging themes, illustrating the interweaving of intention, attention, and attitude for facilitating meaningful living in the face of mortality.

Mindful living is a dignity-preserving practice, which helps terminally ill patients to find tranquility in each present moment despite their impending death. The identified mechanisms of mindful living lay important groundwork for a new understanding and possible directions for culture-specific, mindfulness-based, family-centered interventions suited to terminally ill patients in the Asian context.

Gastric cancer patients undergoing total gastrectomy face nutrition-related complications and worsening quality of life after surgery. In this context, gastrectomized cancer patients are required to cope with new conditions. Little is known about their accommodating feeding to the new life condition as a negotiated process among stakeholders in real contexts. This study aimed to investigate the shaping of this process as influenced by the perspectives of patients, health-care professionals (HPs), and caregivers (CGs).

A constructivist grounded theory study, through semi-structured interviews and interpretative coding, was designed to answer the following research question: “what is the process of returning to eating and feeding after a gastrectomy?”

The final sample included 18 participants. “Defining a balance by compromising with fear” is the core category explaining returning to eating as a process negotiated by all actors involved, with patients trying to find a feeding balance through a multi-layer compromise: with the information received by HPs, the proprioception drastically altered by gastric resection, new dietary habits to accept, and complex and often minimized conviviality. This process involves 4 main conceptual phases: relying on the doctors’ advice, perceptive realignment, rearranging food intake, and food-regulated social interaction. Those categories are also shaped by the fear of being unwell from eating and the constant fear of tumor relapse.

Multiple actors can meet patients’ and their CGs’ nutritional, care, and psychosocial needs. A multidisciplinary approach involving nutritionists, psychologists, occupational therapists, social workers, and anthropologists can be key to effectively managing these patients’ survivorship care. We suggest training all the professionals on the first level of nutritional counseling.

The COVID-19 pandemic presented many challenges for patients with palliative care needs and their care providers. During the early days of the pandemic, visitors were restricted on our palliative care units. These restrictions separated patients from their families and caregivers and led to considerable suffering for patients, families, and health-care providers. Using clinical vignettes that illustrate the suffering caused by visiting restrictions during the pandemic, the introduction of a new concept to help predict when health-care providers might be moved to advocate for their patients is introduced.

We report 3 cases of patients admitted to a palliative care unit during the COVID-19 pandemic and discuss the visiting restrictions placed on their families. In reviewing the cases, we coined a new concept, the “Suffering Quotient” (SQ), to help understand why clinical staff might be motivated to advocate for an exemption to the visiting restrictions in one situation and not another.

This paper uses 3 cases to illustrate a new concept that we have coined the Suffering Quotient. The Suffering Quotient (SQ) = Perceived Individual (or small group) Suffering/Perceived Population Suffering. This paper also explores factors that influence perceived individual suffering (the numerator) and perceived population suffering (the denominator) from the perspective of the health-care provider.

The SQ provides a means of weighing perceived patient and family suffering against perceived contextual population suffering. It reflects the threshold beyond which health-care providers, or other outside observers, are moved to advocate for the patient and ultimately how far they might be prepared to go. The SQ offers a potential means of predicting observer responses when they are exposed to multiple suffering scenarios, such as those that occurred during the COVID-19 pandemic.