Palliative Medicine最新文献

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: 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: 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: 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: 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: 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: 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.