This study aims to examine (1) the prevalence of demoralization among family caregivers of palliative care patients (PCP) in Hong Kong, (2) the percentage of caregivers who are demoralized but not depressed, (3) the factors associated with demoralization, and (4) the differences in caregivers’ support needs between high and low levels of demoralization groups.

Ninety-four family caregivers were recruited and completed a questionnaire that included measures of demoralization, depression and caregiving strain, caregivers’ support needs, and demographic information.

The prevalence of demoralization among family caregivers of PCP was found to be 12.8% (cutoff score = 50) and 51.1% (cutoff score = 30). Although 27.7% of caregivers met the criteria of depression and demoralization, 12.8% of demoralized caregivers were not depressed. Depression and caregiving strain were identified as the predictors of demoralization. Caregivers with a poorer subjective physical status and a lower education level are more prone to demoralization. The three major caregivers’ needs for support reported were (1) knowing what to expect in the future (77.7%); (2) knowing who to contact (74.5%); and (3) understanding your relative’s illness (73.4%). Those who experienced a high level of demoralization often reported more need for support in end-of-life caregiving.

This is the first study that focused on the demoralization of family caregivers of PCP in the East Asian context. Demoralization is prevalent among these caregivers. We recommend that early assessment of demoralization among family caregivers of PCP be considered, especially for those who are more depressed and have a higher level of caregiving stress.

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.

Thiamine deficiency (TD) presents with various physical and psychiatric symptoms, but no cases with depression-like symptoms have been reported.

We report a patient with cancer who appeared to attempt suicide as a consequence of depressive mood likely related to TD.

The patient was a 58-year-old woman diagnosed with recurrent endometrial cancer, with lung metastasis and pelvic dissemination. The patient apparently attempted suicide was referred to the psycho-oncology department.

At the time of the examination, major depressive disorder was suspected based on her mental symptoms, but when thiamine was administered intravenously in response to her poor dietary intake, her palpitations, dyspnea, anorexia, and insomnia improved, and her suicidal ideation disappeared at her reexamination 1 hour later after thiamine administration.

It is likely that the observed palpitations, dyspnea, anorexia, and insomnia, as well as the severe depression and the attempted suicide, which were thought to be physical symptoms associated with depression, were actually related to TD. Suicidal ideation and attempted suicide are conspicuous as psychiatric symptoms. However, in such cases, rather than simply starting treatment for depression, it is necessary to consider reversible TD as a cause of these symptoms and perform differential diagnosis to confirm the physical illness.

Research on medical assistance in dying (MAiD) decision-making indicates that family members and close friends are often involved in making decisions with patients and their care providers. This decision-making model comprising patients, family members, and palliative care providers (PCPs) has been described as a triad. The objective of this study is to understand PCPs’ experiences engaging in MAiD-related decision-making triads with patients and their families in Canada.

Semi-structured qualitative interviews were analyzed using interpretive description.

We interviewed 48 specialist PCPs in Vancouver (26) and Toronto (22). Interviews were audio-recorded, professionally transcribed, and coded using a coding framework. PCPs take on 5 notable roles in their work with family members around MAiD. They provide emotional support and counseling, balance confidentiality between patients and families, provide education, coordinate support, and mediate family dynamics.

PCPs take on multiple roles in working with patients and families to make decisions about MAiD. As patients and families may require different forms of support throughout the MAiD pathway, PCPs can benefit from institutional and interprofessional resources to enhance their ability to support patients and families in decision-making and bereavement.

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.

General palliative care (PC) is provided more at home, leading to increased involvement of relatives. Although support for relatives is a fundamental component of PC, there are deficiencies in the support provided to relatives when general PC is provided at home. This study aimed to describe the support provided by health professionals before and after a patient’s death to relatives involved in general PC at home.

A cross-sectional register study was implemented, with data from the Swedish Register of Palliative care. The sample consisted of 160 completed surveys from relatives who had been involved in general PC at home, with 160 related surveys answered by health professionals. Only the questions about support to relatives were used from the surveys.

The findings showed that although many relatives appear to receive support in general PC at home, not all relatives receive optimal support before or after a patient’s death. The findings also indicated differences in whether relatives received some support before and after a patient’s death depending on the type of relative. There were also differences in responses between health professionals and relatives regarding if relatives received counseling from a doctor about whether the patient was dying.

There is potential for improvements regarding support for relatives, especially after a patient’s death, which has been confirmed in previous studies. The differences in whether relatives received support before and after a patient’s death depending on the type of relative highlight the need for future research on how to support different types of relatives before and after a patient’s death when general PC is provided at home.

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.

Purple urine bag syndrome (PUBS) is a condition that causes an intense purple discoloration of the urine, predominately in frail, dependent, and bedridden persons who are chronically catheterized and have urinary tract infections. Despite being considered a benign syndrome, PUBS can cause great anxiety, fear, and distress in health professionals, chronically ill persons, and caregivers or family members who provide care.

We report the case of a 98-year-old institutionalized woman with Alzheimer’s dementia with a long-term urinary catheter who developed PUBS.

Although alarming and distressing for the resident and the health-care team, PUBS was resolved by treating the underlying urinary tract infection and applying good genital hygiene and catheter replacement.

Identifying PUBS and its clinical features and management proved to be significantly helpful in ameliorating the anxiety, fear, and distress around the phenomenon.

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.

To describe levels of pain over time during disease progression in individual patients and for a total sample of patients with motor neuron disease (MND), respectively, and to examine associations between pain, disease severity, health-related quality of life (HRQOL), and depression.

A prospective cohort study was conducted on 68 patients with MND, including data collected on five occasions over a period of 2 years. Pain was assessed using the Brief Pain Inventory – Short Form. Depression was assessed using the Amyotrophic Lateral Sclerosis (ALS)-Depression-Inventory (ADI-12). Disability progression was measured using the Amyotrophic Lateral Sclerosis Functional Rating Scale – Revised Version (ALSFRS-R). HRQOL was assessed using the Amyotrophic Lateral Sclerosis Assessment Questionnaire (ALSAQ-5).

Participants reported great individual variation over time. The median level of pain was 4 (min 0 and max 10). Higher levels of pain during the last 24 h were associated with higher depression scores (ADI-12), poorer quality of life (ALSAQ-5), and lower reporting of fine and gross motor skills (ALSFRS-R). Baseline pain levels did not predict future values of depression and function. Individuals reporting average pain >3 experienced more hopelessness toward the future and reported higher depression scores compared with participants reporting average pain <3.

Great within-individual variation of pain intensity was reported. Pain intensity was associated with depression, function and HRQOL cross-sectionally, but it did not have a strong prognostic value for future depression, function, or HRQOL. Patients with MND should be offered frequent assessment of pain and depressive symptoms in person-centered care, allowing for individualization of treatment.