Palliative Medicine

Background The importance of palliative care and advance care planning in dementia is increasingly recognized. However, little is known about the distinct needs and preferences of people with young-onset dementia. Aim To explore how people with young-onset dementia and their family caregivers experience quality of life, and how these experiences shape their views on the future, palliative care needs, and advance care planning. Design A qualitative interview study, using inductive thematic analysis. Setting/participants Ten community-dwelling people with young-onset dementia and their family caregivers from the Netherlands. Results Four themes were found: sense of self, connection to others, acceptance versus resistance in the face of adversity, and orientation toward the future versus focus on the present. The first two themes represent the main aspects of quality of life. The third theme covers acceptance versus resistance in coping with the disease, support, and the future. The expectations of a decrease in quality of life could adversely affect the attitude toward the future and thus reduce the willingness to engage in advance care planning, which relates to the final theme. Quality of life explicitly influenced treatment decisions for those who engaged in advance care planning. Conclusions The perception of young-onset dementia and its impact on quality of life varies among people with young-onset dementia and their family caregivers, but common values include a sense of self and connection to others. Advance care planning should be introduced as a way to protect these values and align them with palliative care goals.

Background Off-label use of drugs is an integral part of everyday clinical practice in palliative medicine. However, it is associated with many uncertainties, that is, drug therapy safety or legal issues including cost coverage. Healthcare professionals often lack time and resources for comprehensive literature search and patient-specific risk-benefit analyses. Aim The aim of this project is to develop, evaluate and rate agreement/disagreement on treatment recommendations for off-label use in adult palliative medicine. Design Online Delphi study with two rounds each to rate agreement/disagreement with treatment recommendations for off-label use in adult palliative medicine. An international expert panel consisting of physicians, pharmacists and nurses working in palliative care evaluated previously developed recommendations based on the best available evidence. Setting:/participants Professionals (physicians, pharmacists, nursing staff) working in inpatient and home palliative care involved in the medication process were recruited as experts to participate. Between 64 and 75 experts participated in the first two Delphi studies. Results A total of 64/68 recommendations on 21 drugs and 14 applications were agreed upon. Topics related to routes of administration as well as indications for sialorrhea, bronchorrhea, xerostomia, pruritus, singultus, fistula, gastroparesis and hot flashes. Recommendations that reached consensus are available to health care professionals via a free of charge database. Conclusion For many off-label use applications, it is likely that there will be no registration studies and therefore no drug approvals in the future. The consensus-based recommendations are intended to facilitate individual treatment planning for prescribers and to enable a more reflected handling of off-label use.

Background Constipation is common in people with advanced cancer and is associated with significant morbidity and health economic burden, but it is often sub-optimally managed. Despite international consensus diagnostic criteria for functional and opioid-induced constipation (Rome IV diagnostic criteria), the term ‘constipation’ means different things to different people, impacting assessment, diagnosis and management. Aim To investigate the association between persons with advanced cancer self-reporting of constipation, response to the Rome IV diagnostic criteria statements for opioid-induced constipation and differences according to personal demographics. Design Multicentre prospective observational study. Setting/participants Twenty-four community, hospice and hospital research sites in 10 European countries recruited 1200 adults with cancer taking opioids for cancer/cancer-treatment related pain. Results In response to the simple question ‘Are you constipated?’ , 549 (45.5%) participants replied ‘yes’, 588 (49%) replied ‘no’ and 59 (5%) were ‘unsure’, but 713 (59.5%) participants met the Rome IV diagnostic criteria. Only 439 (61.5%) participants that met these criteria answered the simple question positively, whilst 230 (39%) answered negatively, although there was a statistically significant association between responses to the simple question and the criteria (χ ² (1, N = 1136) = 149.945, p = 0.00001). There were certain significant differences in self-reporting according to age and country of origin. Conclusions There is disparity between patients’ self-reporting of constipation and the Rome IV diagnostic criteria. People with advanced cancer, especially those receiving opioid analgesics, need to be regularly assessed for constipation, but the use of a single question ( ‘Are you constipated?’ ) is inadequate. Registry: European Study of Opioid Induced Constipation (E-StOIC), NCT05149833, https://clinicaltrials.gov/study/NCT05149833 , 08/12/2021.

Background Hope plays a pivotal role in enhancing the quality of life and coping strategies of individuals living with advanced diseases. The nature of the relationship between hope and prognostic awareness is unclear. Aim To explore the experiences and meanings of hope and their association with prognostic awareness among people with advanced incurable diseases. Design Qualitative phenomenological study using reflexive thematic analysis of semi-structured interviews. Setting/participants Interviews with 24 participants aged 30–99 years with advanced incurable disease were conducted in hospices and hospitals in the Czech Republic. Results We generated four distinct approaches to hope and prognostic awareness: Technical, Spiritual, Minimalist and Pragmatic. Each approach exhibited unique cognitive, emotional and behavioural dimensions of hope and prognostic awareness. The Technical and Minimalist approaches showed fluctuating hope influenced by medical updates, while the Spiritual and Pragmatic approaches demonstrated stable hope resilient to prognostic information. Conclusions Recognizing these diverse hope approaches can guide tailored interventions in palliative care. Healthcare providers should adapt their communication strategies based on people’s predominant hope orientations to support effective coping and enhance end-of-life care outcomes. This study sheds light on how different individuals navigate hope amidst terminal illnesses, providing insights into the nuanced psychological and emotional dynamics that influence their coping mechanisms.

Background Resilience as a dynamic process plays a significant role in caregivers’ mental health. Little is known about gender differences in the resilience process and predictors of resilience in spousal caregivers. Aim To investigate changes in resilience among wives and husbands of patients with advanced cancer over a 6-month posttreatment period, and identify different predictors of resilience between females and males. Design This longitudinal, observational study was conducted from January to December 2022. Setting/Participants Spousal caregivers of patients with newly diagnosed advanced cancer were recruited from five regional tertiary hospitals in China. There were three assessment points at 1, 3, and 6 months post-initial treatment. The dependent variable was resilience, and five independent repeated variables were investigated. Results Totally, 179 wife caregivers and 133 husband caregivers were included. Resilience in both wife caregivers and husband caregivers increased over time (Wald χ ² = 29.83, p < 0.001) but husbands had higher levels of resilience than wives (Wald χ ² = 35.59, p < 0.001). However, there was no interaction between time and gender (Wald χ ² = 5.25, p > 0.05). Patient functional status, caregiver burden, social support, coping self-efficacy, and mutuality were predictors of resilience for wife caregivers. Meanwhile, patient functional status, caregiver burden and coping self-efficacy could predict resilience for husband caregivers. Conclusions Healthcare providers may develop gender-specific interventions to promote resilience in spousal caregivers of patients with advanced cancer. This would improve mental health for caregivers in the process of palliative care.

Background The Utrecht Symptom Diary—4 Dimensional (USD-4D) is a multidimensional Patient-Reported Outcome Measure to monitor symptoms and needs and increase patients’ self-efficacy. Assessing the content and construct validity of the USD-4D ensures it accurately measures the intended construct and is contextually relevant. Aims This study aimed to assess the content and construct validity of the socio-spiritual items of the USD-4D in a population of Dutch patients in the palliative phase of their illness. Design A multiple method study was performed consisting of a cross-sectional survey and an observational cohort study. Participants The study population consisted of (a) healthcare providers working with patients in the palliative phase and (b) a cohort of patients with a life limiting illness in all settings supplemented by a cohort of hospice patients. Results At least 80% of participants positively assessed the items comprehensibility and relevance. About half of the respondents indicated that certain items are missing from the USD-4D. A qualitative analysis of missing topics revealed either topics for monitoring over time or topics underlying the constructs included. For every item, at least 75% of hypotheses were confirmed. One hypothesis for the item “I can let my loved ones go” was rejected. Conclusions This study confirmed the content and construct validity on the socio-spiritual items of the USD-4D. Hence, the USD-4D is a validated PROM suitable to be structurally used in clinical palliative care to signal, monitor and to go into dialogue about social and spiritual aspects of patients’ values, wishes, and needs.

Background Telemedicine in palliative care is advancing to conquer challenges like staff shortages and limited access. Though feasibility and acceptance are proven, the clinical effects of teleconsultations (a nurse on-site consulting with a remote physician) have yet to be studied. The impact on physicians’ workload or which patients it suits best, remain unclear. Aim This study analyses the effect of teleconsultations on physician quota (number of physician-attended home visits divided by total number of home visits) and hospitalizations in specialized outpatient palliative care (SOPC) after 3 years of use in Aachen, Germany. Design In a single-center, retrospective cohort study (September 2019–March 2023), clinical data was retrieved from a palliative care provider. Setting/Participants 1756 patients with diseases from all medical disciplines received care during the observation period. By clinicians’ choice 384 received teleconsultations, while 1372 did not. Results 833 teleconsultations were conducted. Telemedicine patients were younger (72.8 ± 12.5 years vs. non-telemedicine 74.4 ± 12.8 years, p = 0.011), presented more diagnoses ( p < 0.001), while scope of symptoms and diagnoses was equivalent. Telemedicine patients had a longer duration of stay within the SOPC and more home visits. Physician quota in the telemedicine group was lower ( p < 0.001). A matched pairs analysis ( n = 726) showed no significant difference in hospitalizations. Conclusions Telemedicine can reduce physician quota, alleviating personnel shortages while providing time for care-intensive patients and creating capacity for more patients. Telemedicine seems suited for multimorbid, long-term patients. A matched pairs analysis showed no difference in hospitalizations in telemedicine patients.

Background There persist disparities in access to quality palliative and end-of-life care, often based on avoidable injustice. Research and theory to explain this health inequity focuses on structural or individual-based factors, overlooking important relational factors between health professionals, patients and families. Aim To apply Cognitive Authority Theory in palliative and end-of-life care to explain neglected relational drivers of inequity in access and experience. Methods Cognitive Authority Theory, a middle-range theory of power relations between individuals and authority over knowledge, was developed from empirical and review data. This paper demonstrates its utility in explaining an overlooked component of inequity in palliative care: interactions between health professionals and patients/caregivers. Results Using examples from the palliative care literature, we characterise how people who are socially disadvantaged have fewer resources to exploit during consultations with health professionals which makes it difficult for them to have their voices heard, their choices prioritised by others, and to express their expertise. We examine the implications of health professionals’ judgements of expertise for care access, experience, involvement and appropriateness. We offer a fresh perspective on the mechanisms by which stereotypes, bias and power imbalances between health professionals and patients reinforce existing health inequities, drawing on the role of social privilege in shaping inequity in palliative care. Conclusion This paper provides a new language to articulate relational drivers of inequity in palliative care. It explains how to use Cognitive Authority Theory to design and interpret research to determine how healthcare interactions reinforce both social privilege and social disadvantage at end-of-life.

Background Family members play a pivotal role in advance care planning for patients with life-limiting illnesses, particularly in Asia, where cultural values stress family-centeredness and paternalism. Aim To synthesize the evidence pertaining to the extent of Asian family members’ involvement in advance care planning. Design An integrative review was conducted. Data sources Data sources included MEDLINE, EMBASE, CINAHL, Web of Science, PubMed, Wan Fang, China National Knowledge Infrastructure databases, Google Scholar, and Open Gray. Results 21 studies were included. The willingness of Asian family members to participate in advance care planning is high, while their actual engagement remains low. Based on the barriers, facilitators, and Asian family members’ roles influencing participation identified in our study, a six-dimensional conceptual model was developed: Asian family members’ roles, problem-solving skills, communication, affective responsiveness, affective participation, and controlling behavior in advance care planning. Barriers to effective participation were identified: inadequate advance care planning legislation, insufficient public education, and influences from Confucianism or traditional beliefs. Additionally, filial piety was shown to have a paradoxical effect on Asian family members’ participation in advance care planning in Asian countries. Conclusions This study proposes a culturally sensitive model to illustrate family members’ participation in advance care planning in Asia. This lays a foundation to develop culturally specific interventions to enhance family participation in advance care planning in the future. We recommend that Asian governments should enact legislations, enhance public education, and incorporate cultural characteristics into relevant policy frameworks to foster greater family involvement in advance care planning.

Background Paediatric end-of-life care is an important part of palliative care, and provides care and support for children in the last days, weeks, months or year of life. However, there is currently a picture of inconsistent and disjointed provision. Despite differences in delivery models across countries and cultures, healthcare professionals need to be able to support families through this difficult time. However, there is limited evidence to base high quality end-of-life care. Aim To explore healthcare professionals’ experiences of delivering end-of-life care to infants, children and young people, their needs and the factors affecting access and implementation. Design Qualitative study employing online focus groups, analysed using framework analysis. Setting/participants Healthcare professionals who provided end-of-life care to infants, children and young people, across cancer centres and neonatal and paediatric intensive care units. Results A total of 168 professionals from 13 tertiary hospitals participated in 23 focus groups. Three themes highlighted many barriers to delivering optimal care: (1) Professional perceptions of end-of-life care; (2) What we want to provide versus what we can and (3) Workforce and sustainability: Healthcare professional support. These illustrate professionals’ awareness and desire to deliver high-quality care, yet are constrained by a number of factors, suggesting the current system is not suitable. Conclusions This study provides an in-depth exploration of paediatric end-of-life care, from those professionals working across the settings accounting for the majority of end-of-life care delivery. Many of these issues could be resolved by investment in: funding, time, education and support to enable delivery of increasingly complex end-of-life care.

Background Professionals’ personal perceptions of sedated patients in the context of palliative care may influence their opinion on sedation as treatment option. However, little is known of palliative care professionals’ perception of patients dying under sedation. Aim To explore German specialist palliative care team members’ views on and perception of the dying process under sedation. Design Qualitative phenomenological study using semi-structured interviews ( n = 59). Interviews took place in-person after recruitment via a contact person and were transcribed verbatim. Framework Analysis was used for analysis. Setting/participants Physicians, nurses, psychologists, physical therapists, chaplains, and social workers from 10 palliative care units and 7 specialist palliative homecare teams across 12 German cities. Results Participants’ views on patients dying under sedation can be grouped into: (i) those who perceived an influence of sedation on the dying process with and without positive and/or negative connotations and (ii) those who saw no difference between dying with or without sedation. Positive connotations referred to the perception of sedation providing an easier path. Concerns were mainly related to the deprivation of patients regarding a conscious dying. The metaphorical description of sedation as “sleep” was common among participants. Conclusions The wide range of perceptions of patients dying under sedation may be rooted in different judgements regarding aspects of a good death. Clarifying ideals of a good death with professionals, patients, and relatives before sedation may support transparent decision-making and help avoid conflicts or moral distress.

Background Spiritual care is important for palliative care, but the evidence base for spiritual care provision is low. Aim To investigate the course over time of clients’ spiritual wellbeing who participated in the spiritual care intervention “In dialogue with your life story.” Design The intervention consisted of six individual sessions between client and chaplain of various faiths. A longitudinal study was conducted pre- and post-intervention, and a follow-up approximately 10 weeks after post-intervention. Spiritual wellbeing was measured using the EORTC QLQ-SWB32 and NEIS, and symptoms of anxiety and depression as secondary outcome measure using the HADS. Latent growth modeling was used to investigate changes in outcome measures over time. Setting/Participants Adult clients receiving home-based, palliative care were eligible to participate in this study. Results A total of 75 clients and 33 chaplains participated. On the four EORTC QLQ-SWQ32-subscales, a significant increase was found over time on “relationship with self,” “relationship with others,” and ‘“existential wellbeing” (linear trends). “Relationship with someone or something greater” significantly increased over time but decreased 10 weeks post-intervention (quadratic trend). On the two NEIS-subscales, ego-integrity significantly increased over time (linear trend), while despair significantly decreased (quadratic trend). On the two HADS-subscales, symptoms of anxiety significantly decreased over time (linear trend). No significant change was found for depressive symptoms. Conclusions We provided first empirical evidence for an increase in clients’ spiritual wellbeing after enrollment in the spiritual care intervention “In dialogue with your life story.” Future research using control conditions is needed to investigate its causal effect.

Background Advance care planning discussions exploring future care and support needs can be beneficial to people with advanced illness. While research has focussed on barriers, outcomes, and completion, little is known about how discussions influence thoughts, feelings, and behaviours. Aim To explore experiences of advance care planning for people with incurable life-limiting illnesses, to understand the impact of discussions on individuals, and factors influencing psychological responses. Design Semi-structured qualitative interviews were conducted. Data were analysed using framework analysis. Reflexive journalling and discussion of coding framework and themes supported rigour. Setting/participants Twenty purposively sampled adults receiving hospice care, aged 30–93 with cancer ( n = 15) and non-cancer ( n = 5) diagnoses were interviewed. Results Advance care planning elicits multiple complex thoughts, emotions, and behaviours, with responses ranging from the procedural to the profound. Discussions empowered and instilled confidence, promoted openness with relatives, encouraged people to make the most of their time remaining, and sometimes contributed to coming to terms with their mortality. Factors influencing experiences of discussions reflected the complexity and diversity in participants’ lives, personalities, and life experiences, with discussions exposing the realities of living with terminal illness. Conclusion Individuals’ unique lives and experiences shape their responses to, and the impact of advance care planning on how they think, feel and behave. Advance care planning is not simply a means to document end-of-life care preferences, but can empower and instil confidence in patients, and may form part of the process of coming to terms with mortality, allowing clinicians to shift focus from process-related outcomes.

Background Global health systems are currently socially and economically burdened. Public health palliative care is an approach to caring toward end of life that can create the innovative change needed to address this inequity. Guided by the Ottawa Charter for Health Promotion (1986), public health palliative care promotes collaboration among palliative care services, civic institutions, and communities to build capacity in all aspects of death, dying, caregiving, and bereavement. Despite growing evidence for the public health approach to palliative care, little is known about how acute hospitals and communities can work together to provide care toward end of life. Aim To explore how acute hospitals and communities work together to provide care toward end of life. Design Scoping review guided by Arskey and O’Malley framework. Data Sources Scopus, Pubmed, CINAHL, and Informit as well as gray literature were searched. Citations were independently assessed against inclusion and exclusion criteria. Results Of the six included studies and reports, a priori themes of creating supportive environments; strengthening community action; reorienting health services; developing personal skills and building healthy public policy from the Charter were well represented. Additional themes of communication and language, culture and risk were also identified. Educational, arts health, community engagement initiatives were explored as well as clinical tools, psychosocial interventions, and the No One Dies Alone (NODA) program. Conclusions This review offers policymakers, hospitals, and practitioners a framework for implementing hospital-community partnerships toward end-of-life. Despite challenges in acute settings, these initiatives can enhance end-of-life experiences for patients and families.

Background Death preparations can benefit families both before and during bereavement. While these preparations are culturally influenced, evidence from non-Western cultures, like Eastern Asia, is limited. Aim To explore how family caregivers prepare for a relative’s death in Taiwan. Design A qualitative interview study analysed with reflexive thematic analysis. Setting/participants Twenty-two primary family caregivers following a death involving specialist palliative care were interviewed. Results An overarching theme was ‘getting everything right to have no regrets between the dead and the living’. Within this, two themes focussed upon improving the dying relative’s outcomes and the families’ subsequent bereavement: (1) ‘making the right end-of-life decisions is crucial but complex’, exploring preparations to involve (or not) the dying relative in making choices to minimise regrets. Participants often felt they understood the dying relative’s wishes so respected their preferences while maintaining family harmony through consensus-building and professional guidance. (2) ‘becoming a competent caregiver is the priority’, addressing preparations for fulfilling responsibilities, making sacrifices and developing caregiving competence to ensure the dying relative’s comfort. This would help reduce feelings of regret about not having done enough. Conclusion Preparing for end-of-life decisions and caregiving is important for participants to reduce regret, benefiting subsequent bereavement. Of particular importance is family involvement and consensus-building in end-of-life decisions, reflecting Taiwan’s family-led culture. These findings can inform clinical practices in family-centric decision-making cultures where healthcare workers should be aware of the need to build consensus, sometimes without involving the dying person. Future research should include patients’ and healthcare professionals’ perspectives.

Background People affected by serious illness face several threats to their well-being: physical symptoms, psychological distress, disrupted social relations, and spiritual/existential crises. Relationships with clinicians provide a form of structured support that promotes shared decision-making and adaptive stress coping. Measuring relationship quality may improve quality assessment and patient care outcomes. However, researchers and those promoting quality improvement lack clear guidance on measuring this. Aim To identify and assess items from valid measures of patient-provider relationship quality in serious illness settings for guiding quality assessment. Design Scoping review. Data sources We identified peer-reviewed, English-language articles published from 1990 to 2023 in CINAHL, Embase, and PubMed. Eligible articles described the validation of measures assessing healthcare experiences of patient populations characterized by serious illness. We used Clarke et al.’s theory of relationship quality to assess relationship-focused items. Results From 3868 screened articles, we identified 101 publications describing 47 valid measures used in serious illness settings. Measures assessed patients and other caregivers. We determined that 597 of 2238 items (26.7%) related to relationships. Most measures ( n = 46) included items related to engaging the patient as a whole person. Measures evaluated how providers promote information exchange ( n = 35), foster therapeutic alliance ( n = 35), recognize and respond to emotion ( n = 27), and include patients in care-related decisions ( n = 23). Few instruments ( n = 9) assessed patient self-management and navigation. Conclusions Measures include items that assess patient-provider relationship quality in serious illness settings. Researchers may consider these for evaluating and improving relationship quality, a patient-centered care and research outcome.

Background Effective communication has potential benefits for children, their families, and healthcare professionals. Although communication skills training programs are essential for healthcare professionals, their effects remain unclear. Aim This review summarized existing communication skills training programs and evaluated their impact on healthcare professionals’ behavior and the health outcomes of children with life-threatening conditions and their families. Design This systematic review was performed in accordance with the Cochrane Handbook version 6.4. Data sources On January 21, 2024, we searched the following databases: Cochrane Central Register of Controlled Trials, PubMed, MEDLINE, Embase, PsycINFO, and CINAHL. The included studies’ risk of bias was assessed using a revised Cochrane risk-of-bias tool for randomized controlled trials 2. Owing to insufficient data and high heterogeneity, we could not perform a meta-analysis, so the findings were described narratively. Results We identified nine studies, which included various diseases, training programs, and outcome measurement tools and timings. Among the nine studies, five of the six studies that assessed healthcare professionals’ behaviors reported that the interventions had improved them (low certainty of evidence). Only two studies reported on the quality of life and anxiety experienced by children and their families, with no clear difference between intervention and control groups. Conclusions Communication skills training for healthcare professionals may improve their behaviors toward children with life-threatening conditions and their families. Measurement tools and timings must be standardized. Future research should develop training programs and assess their impact on children and their families, incorporating the perspective of children.

Background To provide patient-centered healthcare for people with serious illness, healthcare teams must elicit needs, goals, preferences, and values from patients and care partners. Aim Describe feasibility and acceptability of an electronic pre-visit agenda-setting questionnaire for patients and care partners to identify these topics before ambulatory palliative care visits. Design Concurrent mixed-methods formative evaluation of questionnaire feasibility and acceptability. We extracted questionnaire responses and patient characteristics from electronic health records and sent anonymous post-visit patient experience surveys. Researchers conducted thematic analysis on semi-structured interviews with participants. Setting/participants Patient participants had an active patient portal account and ambulatory visit at a free-standing palliative care clinic in a tertiary academic medical center in rural Northeastern United States between June 2021 and March 2023. Clinic staff included physicians, nurse practitioner, social worker, nurses, and scheduling secretary. Most visits were conducted via video or telephone. Results Completion rate was 50% for pre-visit questionnaires (2107 of 4204 visits). Patients completing post-visit surveys (following 859 visits) reported the pre-visit questionnaire was easy to complete (75%) and helped their conversations with clinicians (79%). Patients who believed their clinician reviewed their responses rated shared decision-making higher (82%) than those who did not (59%). Semi-structured interviews with five patients, two care partners, and seven clinicians identified four themes: the questionnaire engages patients in pre-visit planning, incorporates care partners into the care team, facilitates care for the care partner, and improves perceived efficiency and care quality. Conclusions An electronic pre-visit questionnaire was feasible and acceptable in ambulatory palliative care visits.

Background Delirium is common and distressing for hospice in-patients. Hospital-based research shows delirium may be prevented by targeting its risk factors. Many preventative strategies address patients’ fundamental care needs. However, there is little research regarding how interventions need to be tailored to the in-patient hospice setting. Aim To explore the behaviours of hospice in-patient staff in relation to delirium prevention, and the influences that shape these behaviours. Design Focused ethnography supported by behaviour change theory. Observation, semi-structured interviews and document review were conducted. Setting/participants A total of 89 participants (multidisciplinary staff, volunteers, patients and relatives) at two UK in-patient hospice units. Results Hospice clinicians engaged in many behaviours associated with prevention of delirium as part of person-centred fundamental care, without delirium prevention as an explicit aim. Carrying out essential care tasks was highly valued and supported by adequate staffing levels, multidisciplinary team engagement and role clarity. Patients’ reduced physical capability limited some delirium prevention behaviours, as did clinicians’ behavioural norms related to prioritising patient comfort. Delirium prevention was not embedded into routine assessment and care decision-making, despite its potential to reduce patient distress. Conclusions The value placed on fundamental care in hospices supports delirium prevention behaviours but these require adaptation as patients become closer to death. There is a need to increase clinicians’ understanding of the potential for delirium prevention to reduce patient distress during illness progression; to support inclusion of delirium prevention in making decisions about care; and to embed routine review of delirium risk factors in practice.

Background People with Stage IV cancer face physical and emotional challenges impacting quality of life. Conventional quality of life measures do not capture daily fluctuations in patient well-being. Aim This pilot study used daily diaries to explore the concept of a “good day” living with advanced cancer and to identify activities associated with “good days” as well as associations between daily “goodness” and conventional quality of life measures. Design Twenty participants with Stage IV cancer completed daily diaries on a mobile app over a 14-day period. Participants rated each day’s “goodness” and documented daily activities. Statistical analyses examined associations between daily “goodness” ratings, activities, and baseline quality of life measures from the Patient-Reported Outcomes Measurement Information System (PROMIS). Setting/participants Participants were recruited from oncology clinics and online research registries. Inclusion criteria included age over 18 years old, having Stage IV cancer, and owning a smartphone. Results Analysis of 178 completed surveys from 18 participants revealed overall average “goodness” ratings exhibited more within-person than between-person variability. Average goodness was positively related to the PROMIS domain of Ability to Participate in Social Roles/Activities and negatively related to PROMIS domains of Anxiety and Depression. Participants reported better days when they engaged in leisure activities and worse days when they spent time managing physical symptoms. Conclusions This study highlights the importance of understanding day-to-day quality of life in individuals with advanced cancer. Further research is needed to assess quality of life longitudinally and to develop personalized supportive and palliative care interventions in this population.

Background Xerostomia is a common and difficult symptom experienced by patients with cancer. Pilocarpine is a cholinergic agent that stimulates salivation. Aim To assess the feasibility of conducting a N-of-1 trial to determine the efficacy of pilocarpine orally dissolving tablets in patients with xerostomia. Design Double-blind, crossover, placebo-controlled N-of-1 trials of 5 mg pilocarpine tablets vs placebo. Each trial consisted of three 6-day cycles containing pilocarpine (3 days) and placebo (3 days) in random order. Setting/participants Participants with advanced cancer and xerostomia (scoring >3 on an 11-point numerical rating scale) from any cause, were recruited from an inpatient and outpatient palliative care unit in Brisbane, Australia. Results Eighteen people were recruited in 17 months. Nine withdrew, seven before or during the first 4 days. Three withdrew due to unacceptable side effects. Two participants met the definition of response (⩾2 point reduction in mean scores active vs placebo cycles). When assessing individual cycles, 15 out of 27 cycles (56%) met the definition of response. More people reported at least one mild episode during pilocarpine than placebo of nausea (6 vs 3), vomiting (3 vs 0) and sweating (3 vs 2). About 48% of adverse event classifications were reported in placebo cycles only. Conclusion Recruitment to an N-of-1 trial for xerostomia is feasible but attrition was high (50%). Early dropout may have been due to the trial length, complexity, appropriateness or number of questionnaires. Adverse events were generally mild. Two of 10 participants were considered to have benefited from pilocarpine warranting ongoing treatment.