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.

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.

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.

Minimal information is available about the quality of dying and death in Uganda and Kenya, which are African leaders in palliative care. We investigated the quality of dying and death in patients with advanced cancer who had received hospice care in Uganda or Kenya.

Observational study with bereaved caregivers of decedents (Uganda: n = 202; Kenya: n = 127) with advanced cancer who had received care from participating hospices in Uganda or Kenya. Participants completed the Quality of Dying and Death questionnaire and a measure of family satisfaction with cancer care (FAMCARE).

Quality of Dying and Death Preparation and Connectedness subscales were most frequently rated as good to almost perfect for patients in both countries (45.5% to 81.9%), while Symptom Control and Transcendence subscales were most frequently rated as intermediate (42.6% to 60.4%). However, 35.4% to 67.7% of caregivers rated overall quality of dying and overall quality of death as terrible to poor. Ugandan caregivers reported lower Preparation, Connectedness, and Transcendence (p < .001). Controlling for covariates, overall quality of dying was associated with better Symptom Control in both countries (p < .001) and Transcendence in Uganda (p = .010); overall quality of death, with greater Transcendence in Uganda (p = .004); and family satisfaction with care, with better Preparation in Uganda (p = .004).

Findings indicate strengths in spiritual and social domains of the quality of dying and death in patients who received hospice care in Uganda and Kenya, but better symptom control is needed to improve this outcome in these countries.

This pilot study aimed to assess the feasibility and impact of a narrative medicine group for patients receiving palliative care.

This pilot study aimed to assess the feasibility of a six-session, physician-led narrative medicine group for patients receiving palliative care. Ten patients were recruited by their outpatient providers. Symptom severity and patient dignity scores were collected pre-intervention, at the mid-point, and post-intervention using the Patient Dignity Inventory (PDI) and Edmonton Symptom Assessment Survey (ESAS). Qualitative reports of pain, expectations, and anticipated challenges were collected before the intervention. Participant interviews were conducted after the intervention to assess overall experience in the group, challenges experienced, recommendations for future endeavors, and general feedback.

No significant changes in PDI or ESAS scores were observed at baseline, 3 weeks, and 6 weeks. Participants reported overall satisfaction, with 8 of 9 participants stating they “strongly agree” they would participate in the group again and recommend the group to others. Qualitative responses indicated benefits in the realms of relating to other patients, subjective reduction in pain, and relieving feelings of isolation.

A narrative medicine group for ambulatory patients receiving palliative care appeared to be both beneficial and feasible when delivered through a virtual format. A randomized trial with a larger sample is needed to fully assess the impacts of engaging in narrative work on symptom burden, survival, and quality of life.

Existential/spiritual questions often arise when a person suffers from a serious and/or life-threatening illness. “Existential” can be seen as a broad inclusive term for issues surrounding people’s experience and way of thinking about life. To be able to meet patients’ existential needs, knowledge is needed about what the existential dimension includes. The aim of this study was to investigate how professionals caring for people with life-threatening disease perceive the existential dimension of care.

This study is based on a mixed method design utilizing a digital survey with open- and closed-ended questions. Descriptive statistics were applied to closed-ended questions and a qualitative descriptive approach was used for the responses to the open-ended questions. Healthcare professionals at specialized palliative care units, an oncology clinic and municipal healthcare within home care and a nursing home in Sweden answered the survey.

Responses from 77 professionals expressed a broad perspective on existential questions such as thoughts about life and death. Identifying existential needs and performing existential care was considered a matter of attitude and responsiveness and thus a possible task for any professional. Existential needs centered around the opportunity to communicate, share thoughts and experiences, and be seen and heard. Existential care was connected to communication, sharing moments in the present without doing anything and was sometimes described as embedded in professionals’ ordinary care interventions. The existential dimension was considered important by the majority of respondents.

This study indicates that with the right attitude and responsiveness, all professionals can potentially contribute to existential care, and that existential care can be embedded in all care. The existential dimension of care can also be considered very important by health professionals in a country that is considered secular.

Family carers of people living with motor neurone disease (MND) face continuous changes and losses during the progression of the disease, impacting on their emotional wellbeing. Carers’ emotions might affect their engagement in everyday activities and their caring role. However, how carers manage their emotions and which strategies they identify as useful to cope with them while caring is under researched.

To identify the emotional experiences and coping strategies of MND family carers while caring the person living with MND.

We conducted 14 semi-structured interviews with family carers currently supporting people living with MND living in the UK. Interviews were audio/video recorded and professionally transcribed verbatim. We analyzed data inductively within an interpretive descriptive approach, using reflexive thematic analysis.

Three key themes were generated from the analysis. Destabilization of diagnosis reflected the devastating impact the diagnosis had on carers, characterized by initial overwhelming emotions. Adapting to new circumstances and identifying coping strategies captured how carers experienced everyday changes and losses and how they gradually adjusted to the situation by identifying coping strategies to be able to manage arising emotions. Maintaining emotional coping encompassed how carers used individual strategies they had tried before and had worked for them to cope emotionally with the continuous changes and losses while preserving their emotional wellbeing.

Our findings suggest that carers of people living with MND embark on an emotional journey from the diagnosis of the disease. As the disease progresses, carers adopt coping strategies that best work for them to manage their emotions (e.g., living day by day and seeking support). Understanding the key strategies used to support emotional coping during the caring journey and how carers re-construct their emotional life around MND could help inform future practice and research to better support carers of this population.

Although caring for dying patients and their family caregivers (FC) is integral to patient care, training in communication about approaching death is almost inexistent in medical and nursing curricula. Consequently, many health professionals have insufficient knowledge about conducting these conversations. In order to gain a broader insight into essential aspects of this communication from different perspectives, we conducted focus groups with key stakeholders.

Medical specialists, nurses, medical students, bereaved FC and patient representatives participated in five focus groups (n = 30). Following a focus group schedule, we elicited relevant aspects of communication about approaching death, associated emotions, and appropriate communication frameworks. We analyzed data thematically.

Four main themes were central to conversations about approaching death: (1) embracing care within medical expertise, (2) preparing the conversation while remaining open to the unexpected, (3) recognizing and reflecting on own emotions and reactions, and (4) establishing a meaningful connection with others.

Communicating about approaching death with dying patients and their FC can be complex and challenging at a professional and personal level. With the recognition of the dying phase, a process is initiated for which health professionals need solid clinical knowledge about but also effective communication skills, constant self-reflection and self-care strategies. Comprehensive training and supervision while dealing with the challenges of communicating approaching death to dying patients and their FC are key, particularly for trainees, less experienced physicians and nurses. The essential components identified in this study can help health professionals to master these conversations.

Planning for end-of-life (EOL) and future treatment and care through advance care planning (ACP) is being increasingly implemented in different healthcare settings, and interest in ACP is growing. Several studies have emphasized the importance of relatives participating in conversations about wishes for EOL and being included in the process. Likewise, research has highlighted how relatives can be a valuable resource in an emergency setting. Although relatives have a significant role, few studies have investigated their perspectives of ACP and EOL conversations. This study explores relatives’ experiences of the benefits and disadvantages of having conversations about wishes for EOL treatment.

Semi-structured telephone interviews were held with 29 relatives who had participated in a conversation about EOL wishes with a patient and physician 2 years prior in a variety of Danish healthcare settings. The relatives were interviewed between September 2020 and June 2022. Content analysis was performed on the qualitative data.

The interviews revealed two themes: “gives peace of mind” and “enables more openness and common understanding of EOL.” Relatives found that conversations about EOL could help assure that patients were heard and enhance their autonomy. These conversations relieved the relatives of responsibility by clarifying or confirming the patients’ wishes, and they also made the relatives reflect on their own wishes for EOL. Moreover, they helped patients and relatives address other issues regarding EOL and made wishes more visible across settings.

The results indicate that conducting conversations about wishes for EOL treatment and having relatives participate in those conversations were perceived as beneficial for both relatives and patients. Involving relatives in ACP should be prioritized by physicians and healthcare personnel when holding conversations about EOL.

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.

Individuals with advanced cancer face the challenge of living meaningfully while also preparing for end of life. The ability to sustain this duality, called “double awareness,” may reflect optimal psychological adaptation, but no psychometric scale exists to measure this construct.

The purpose of this study was to develop a novel scale to measure double awareness in patients living with advanced cancer.

Guided by best practices for scale development, this study addresses the first three of nine steps in instrument development, including domain clarification and item generation, establishment of content validity of the items, and pre-testing of the items with patients.

Instrument development resulted in a 41-item measure with two dimensions titled “life engagement” and “death contemplation.” Items retained in the measure displayed face validity and were found to be both acceptable by patients and relevant to their lived experience.

The results of this scale development study will allow for full validation of the measure and future use in clinical and research settings. This novel measure of double awareness will have clinical utility and relevance in a variety of settings where patients with advanced cancer are treated.

To develop and validate an English and Kannada version of the questionnaire to assess awareness and knowledge of advance care planning (ACP) among end-stage kidney disease (ESKD) patients, caregivers, and healthcare providers.

The questionnaire was developed from the published literature on ACP use in ESKD setting after a literature search. An expert panel consisting of nephrologists, palliative medicine physicians, ESKD patients, and their family caregivers participated in the content validity of the questionnaire using the Delphi process. The study was conducted between August 2021 and July 2022 at a tertiary care hospital in India. A validated questionnaire was administered to eligible 30 ESKD patients, 30 caregivers, and 10 health care professionals. A retest was carried out 1 week after the first administration.

The content validity ratio of patient, caregiver, and health care professions questions ranged from 0.6 to 1 and Cronbach’s α value was 0.737 to 0.925. The intraclass correlation coefficient values for the test–retest of all three sections of this questionnaire varied from 0.879 to 0.972.

The developed questionnaire is a reliable and valid method for assessing the preference and knowledge of ACP in ESKD patients, family caregivers, and kidney care providers both in English and Kannada.