Palliative Medicine最新文献

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 χ² = 29.83, p < 0.001) but husbands had higher levels of resilience than wives (Wald χ² = 35.59, p < 0.001). However, there was no interaction between time and gender (Wald χ² = 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: 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: 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: 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: 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: 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: Many patients with advanced cancer are unaware of their limited prognosis, however little is known about the change in awareness during the last year of their lives.

Aim: To investigate changes in the perception of prognosis in the last year of life of patients with advanced cancer and its associated factors.

Design: Prospective, longitudinal, multicentre, observational study in patients with advanced cancer (eQuiPe). Patients completed 3-monthly follow-up questionnaires until death.

Setting/participants: Adult patients diagnosed with advanced cancer were recruited by their treating physician or self-enrolled in one of the forty Dutch hospitals. Only deceased patients with available prognostic data were included for analysis (n = 801).

Results: Perception of prognosis changes in the last year of life with an increase in the percentage of patients who are aware of their limited prognosis (from 15% to 40%). Especially in the last 6 months of life, most of the changes were towards a more realistic perception of prognosis. Patients who did not want to know their prognosis remained relatively stable in their wish not to know (range: 14%-18%). Time to death was associated with having a perception of prognosis of < 1 year, >1 year or not knowing the prognosis, but was not associated with not wanting to know the prognosis.

Conclusion: Becoming aware of their limited prognosis may make patients with advanced cancer more receptive to start end-of-life discussions. Although some patients prefer not to know their prognosis, it remains important to respectfully explore their preferences and wishes for end-of-life care.