Motivations and experiences of patients with advanced cancer participating in Phase 1 clinical trials: A qualitative study.

BACKGROUND: Persons with advanced cancer may participate in Phase 1 clinical trials - first-in-human trials that are conducted with the main objectives of safety and dosing. The motivations for participation are not well understood and may include hope for cure. AIM: To explore the perspectives of persons with advanced cancer in order to understand the motivations for participating in Phase 1 clinical trials, experiences while being on trial and views on palliative care provision. DESIGN: Qualitative study with a constructivist stance, using thematic analysis based upon the grounded theory approach. SETTING/PARTICIPANTS: 20 persons with advanced cancer who were participating in a Phase 1 clinical trial. RESULTS: Many participants described how Phase 1 clinical trial participation was their last hope, as they were cognisant of their advanced disease. Information-seeking needs differed - some needed comprehensive information while others relied on the doctor's recommendation. Participants experienced varied negative and positive physical and psycho-emotional concerns, and needed to draw on multiple sources of support such as family, friends and healthcare professionals. Some could list potential benefits of palliative care but felt they did not require it yet. The overarching theme was hope and positive thinking as a way of coping. CONCLUSIONS: The concepts of hope as a way of coping and the supportive presence of healthcare professionals could be weaved into a future model of palliative care to improve the illness journey for patients considering Phase 1 clinical trial participation and other persons with advanced cancer.

Predictors of the final place of care of patients with advanced cancer receiving integrated home-based palliative care: a retrospective cohort study.

BACKGROUND: Meeting patients' preferences for place of care at the end-of-life is an indicator of quality palliative care. Understanding the key elements required for terminal care within an integrated model may inform policy and practice, and consequently increase the likelihood of meeting patients' preferences. Hence, this study aimed to identify factors associated with the final place of care in patients with advanced cancer receiving integrated, home-based palliative care. METHODS: This retrospective cohort study included deceased adult patients with advanced cancer who were enrolled in the home-based palliative care service between January 2016 and December 2018. Patients with < 2 weeks' enrollment in the home-based service, or ≤ 1-week duration at the final place of care, were excluded. The following information were retrieved from patients' electronic medical records: patients' and their families' characteristics, care preferences, healthcare utilization, functional status (measured by the Palliative Performance Scale (PPSv2)), and symptom severity (measured by the Edmonton Symptom Assessment System). Multivariate logistic regression was employed to identify independent predictors of the final place of care. Kappa value was calculated to estimate the concordance between actual and preferred place of death. RESULTS: A total of 359 patients were included in the study. Home was the most common (58.2%) final place of care, followed by inpatient hospice (23.7%), and hospital (16.7%). Patients who were single or divorced (OR: 5.5; 95% CI: 1.1-27.8), or had older family caregivers (OR: 3.1; 95% CI: 1.1-8.8), PPSv2 score ≥ 40% (OR: 9.1; 95% CI: 3.3-24.8), pain score ≥ 2 (OR: 3.6; 95% CI: 1.3-9.8), and non-home death preference (OR: 23.8; 95% CI: 5.4-105.1), were more likely to receive terminal care in the inpatient hospice. Patients who were male (OR: 3.2; 95% CI: 1.0-9.9), or had PPSv2 score ≥ 40% (OR: 8.6; 95% CI: 2.9-26.0), pain score ≥ 2 (OR: 3.5; 95% CI: 1.2-10.3), and non-home death preference (OR: 9.8; 95% CI: 2.1-46.3), were more likely to be hospitalized. Goal-concordance was fair (72.6%, kappa = 0.39). CONCLUSIONS: Higher functional status, greater pain intensity, and non-home death preference predicted institutionalization as the final place of care. Additionally, single or divorced patients with older family caregivers were more likely to receive terminal care in the inpatient hospice, while males were more likely to be hospitalized. Despite being part of an integrated care model, goal-concordance was sub-optimal. More comprehensive community networks and resources, enhanced pain control, and personalized care planning discussions, are recommended to better meet patients' preferences for their final place of care. Future research could similarly examine factors associated with the final place of care in patients with advanced non-cancer conditions.

Burnout and Resilience After a Decade in Palliative Care: What Survivors Have to Teach Us. A Qualitative Study of Palliative Care Clinicians With More Than 10 Years of Experience.

CONTEXT: Burnout is common among palliative care clinicians (PCCs). Resilience helps to reduce burnout, compassion fatigue, and is associated with longevity in palliative care. OBJECTIVES: We aimed to study PCCs who have remained in the field for longer than 10 years to deepen our understanding on their views on burnout and resilience. METHODS: We conducted a qualitative study using semistructured interviews and purposive sampling on 18 PCCs - five doctors, 10 nurses, and three social workers who worked in various palliative care settings (hospital palliative care team, home hospice, and inpatient hospice). The mean age of the interviewees was 52 years, and the mean number of years practicing palliative care was 15.7 years (range 10-25). The interviews were recorded verbatim, transcribed, and analyzed using a grounded theory approach. RESULTS: Four major themes emerged from our analysis - struggling, changing mindset, adapting, and resilience. Intervening conditions, such as self-awareness, reflection, and evolution, were also important factors. The core phenomenon of our study was that of transformational growth - a process that PCCs have to go through before they achieve resilience. We also further classified resilience into both personal and collective resilience. CONCLUSION: Our findings highlight the evolving process of transformational growth that PCCs must repeatedly undergo as they strive toward sustained resilience and longevity. It also stresses the importance of taking individual and collective responsibility toward building a culture of personal and team resilience.

A novel Family Dignity Intervention (FDI) for enhancing and informing holistic palliative care in Asia: study protocol for a randomized controlled trial.

BACKGROUND: The lack of a holistic approach to palliative care can lead to a fractured sense of dignity at the end of life, resulting in depression, hopelessness, feelings of being a burden to others, and the loss of the will to live among terminally ill patients. Building on the clinical foundation of Dignity Therapy, together with the empirical understanding of dignity-related concerns of Asian families facing terminal illness, a novel Family Dignity Intervention (FDI) has been developed for Asian palliative care. FDI comprises a recorded interview with a patient and their primary family caregiver, which is transcribed, edited into a legacy document, and returned to the dyads for sharing with the rest of the patient's family. The aims of this study are to assess the feasibility, acceptability and potential effectiveness of FDI in reducing psychosocial, emotional, spiritual, and psychophysiological distress in community-dwelling and in-patient, Asian, older terminally ill patients and their families living in Singapore. METHODS/DESIGN: An open-label randomized controlled trial. One hundred and twenty-six patient-family dyads are randomly allocated to one of two groups: (1) an intervention group (FDI offered in addition to standard psychological care) and (2) a control group (standard psychological care). Both quantitative and qualitative outcomes are assessed in face-to-face interviews at baseline, 3 days and 2 weeks after intervention, as well as during an exit interview with family caregivers at 2 months post bereavement. Primary outcome measures include sense of dignity for patients and psychological distress for caregivers. Secondary outcomes include meaning in life, quality of life, spirituality, hopefulness, perceived support, and psychophysiological wellbeing, as well as bereavement outcomes for caregivers. Qualitative data are analyzed using the Framework method. DISCUSSION: To date, there is no available palliative care intervention for dignity enhancement in Asia. This first-of-its-kind study develops and tests an evidence-based, family driven, psycho-socio-spiritual intervention for enhancing dignity and wellbeing among Asian patients and families facing mortality. It addresses a critical gap in the provision of holistic palliative care. The expected outcomes will contribute to advancements in both theories and practices of palliative care for Singapore and its neighboring regions while serving to inform similar developments in other Asian communities. TRIAL REGISTRATION: ClinicalTrials.gov, ID: NCT03200730 . Registered on 26 June 2017.

Burnout, psychological morbidity and use of coping mechanisms among palliative care practitioners: A multi-centre cross-sectional study.

BACKGROUND: The prevalence of burnout, psychological morbidity and the use of coping mechanisms among palliative care practitioners in Singapore have not been studied. AIM: We aimed to study the prevalence of burnout and psychological morbidity among palliative care practitioners in Singapore and its associations with demographic and workplace factors as well as the use of coping mechanisms. DESIGN: This was a multi-centre, cross-sectional study of all the palliative care providers within the public healthcare sector in Singapore. SETTING/PARTICIPANTS: The study was conducted in hospital palliative care services, home hospice and inpatient hospices in Singapore. The participants were doctors, nurses and social workers. RESULTS: The prevalence of burnout among respondents in our study was 91 of 273 (33.3%) and psychological morbidity was 77 (28.2%). Working >60 h per week was significantly associated with burnout (odds ratio: 9.02, 95% confidence interval: 2.3-35.8, p = 0.002) and psychological morbidity (odds ratio: 7.21, 95% confidence interval: 1.8-28.8, p = 0.005). Home hospice care practitioners (41.5%) were more at risk of developing psychological morbidity compared to hospital-based palliative care (17.5%) or hospice inpatient care (26.0%) (p = 0.007). Coping mechanisms like physical well-being, clinical variety, setting boundaries, transcendental (meditation and quiet reflection), passion for one's work, realistic expectations, remembering patients and organisational activities were associated with less burnout. CONCLUSION: Our results reveal that burnout and psychological morbidity are significant in the palliative care community and demonstrate a need to look at managing long working hours and promoting the use of coping mechanisms to reduce burnout and psychological morbidity.

The disparity between patient and nurse symptom rating in a hospice population.

BACKGROUND: Meticulous assessment, monitoring, and treatment of symptoms are key components of palliative care. The Symptom Assessment Scale (SAS) is a 0-10 numerical rating scale (NRS) used for self-report of sleep, appetite, nausea, bowels, breathing, fatigue, and pain. Ideally, symptom rating should be by self-report; however, the ratings are often completed by nurses. The aim of this study was to examine the relationship between simultaneous symptom ratings of patients and nurses in an Australian inpatient palliative care unit. METHODS: All inpatients and their treating nurse (blinded to the patient's report) scored the SAS weekly. Nurse symptom rating was considered accurate if the score for an individual symptom differed by ≤1. The relationship for each dyad was examined by comparing absolute values, mean differences, and Pearson correlations. RESULTS: Sixty-four pairs of symptom ratings were obtained from 29 patients (mean 65 years, male 55%, malignancy 90%, mean Karnofsky 50). The absolute differences were closest for nausea, bowels, and breathing domains, and worst for appetite. Mean differences and Pearson correlations did not adequately reflect the disparity between patient and nurse symptom rating, and nurses systematically underreported symptoms. The total difference for the seven items ranged from nurses overreporting the patients' symptoms by 39 points to underreporting by 31 out of a possible 70 points. DISCUSSION: Proxy symptom assessment only modestly correlates with patient symptom rating, can significantly misrepresent the patient's actual symptom burden, and should only be used when the patient is absolutely unable to contribute his or her own view.