BMC Palliative Care最新文献

Background: Telehealth palliative care delivery has been shown to be feasible and acceptable for patients, families and clinicians across a number of contexts. However, the rapid implementation of telehealth during the pandemic exposed both challenges and opportunities for optimising telehealth integration in palliative care. This study capitalised on clinicians' experience to better understand the complexities of telehealth and palliative care with a focus on access and equity.

Methods: We deployed a qualitative interview study exploring Australia and Aotearoa New Zealand (NZ) clinicians' perspectives of telehealth with a focus on underserved palliative care populations. The study was underpinned by applied critical realism evaluation. Data were analysed through an equity lens using Srivastava and Hopwood's framework, applying critical realist evaluation questions: what are these data telling us about what works, for whom, in which contexts and with what outcomes?

Results: We recruited a total of twenty-two participants [doctors (n = 7) nurses (n = 11) allied health (n = 4)]. Fifteen participants were based in Aotearoa NZ and seven in Australia. Analysis resulted in the following four key themes: Extending the reach of palliative care; Underserved groups - the thin line of equity and access; Patient safety and quality- the complexities of clinical work; Tele-care, connection and creativity.

Conclusions: Our findings show that although the adoption of telehealth can extend the reach of palliative care, there is, at the same time, the potential to further marginalise those for whom palliative care is already inaccessible. Support and education for clinicians are needed to ensure safe and high-quality telehealth, as well as organisational guidelines and structures to optimise the use of telehealth. There is a need for further research using ethnographic, participatory as well as other qualitative and quantitative methods to identify approaches that optimise access to palliative care and telehealth for underserved groups. This should include the perspectives of patients and families themselves.

Introduction: Ensuring a good death in cancer patients is a multifaceted phenomenon that depends on various factors from the perspective of the patient and their informal caregivers and is based on clinical, cultural and ethical conditions. The objective of the present systematic review is to investigate factors of good death from the perspective of informal caregivers of cancer patients.

Methods: An advanced English electronic search was conducted with no time limit in four online databases of PubMed, Scopus, Web of Science, ProQuest and using related keywords on April 29, 2024. The articles were evaluated based on the conventional content analysis and their quality were assessed.

Results: A total of 686 titles were determined. After removing duplicates, screening and final selection, 33 relevant articles entered the analysis phase. The study population included informal caregivers of cancer patients. Factors of a good death were extracted in two categories. Comfort factors included physical, cognitive-psychological, and social factors, and support factors included perceived support from caregivers, access to care, and advanced care planning.

Conclusion: Achieving a good death is a unique experience, and the perspective of informal caregivers of cancer patients is particularly valuable due to their ongoing involvement in patient care. These caregivers offer insights they have gained from supporting and continuously observing patients throughout the illness trajectory. A comprehensive approach including comfort and support factors can be effective in achieving a good death at the end of life in cancer patients. Planning should focus on comfort and support factors to achieve the patient's end-of-life preferences and to deliver specialized end-of-life care, taking into account the unique understanding that informal caregivers develop through their sustained caregiving role.

Background: Palliative care interventions are underutilized in infants due to a knowledge deficit among providers surrounding neonatal end-of-life care and a pervasive lack of guidelines in neonatal intensive care units (NICUs). The aim of this study was to increase end-of-life symptom management by 50% and improve staff attitude scores and awareness of end-of-life cases by 20% by August 2024.

Methods: The Model for Improvement was used to examine the baseline of mortalities and test interventions to increase analgesia administration and improve staff attitude scores and awareness during end-of-life care.

Results: Fentanyl equivalent administration in the 24 h preceding death increased by 309% between epochs. A comparison of survey responses across epochs revealed a significant increase in staff comfort, confidence, preparedness, and awareness when providing end-of-life care.

Conclusion: The creation of a multidisciplinary quality improvement (QI) team, the implementation of end-of-life guidelines, electronic health record (EHR) modifications, and staff education improved symptom management, staff attitude scores, and awareness when providing end-of-life care.

Background: Providing high quality around-the-clock care, is key to supporting families in their preferred place of care. Changing symptoms and parents' distress cannot wait for 'opening hours'. Yet in the UK, 24/7 children's end-of-life care remains a significant postcode lottery. To inform equitable service development this study explored parents' experiences accessing 24/7 paediatric palliative care, their expectations and needs.

Methods: Qualitative study using in-depth interviews, analysed using thematic analysis. Parents in one region of England, were eligible if their child had a life-limiting condition and end-of-life care was planned, or if they were bereaved parents whose child had died within the previous 3-36 months.

Results: Twenty-six parents were interviewed, 13 currently caring for their child and 13 bereaved parents. Two themes were developed: "Scaffolded for uncertainty and crisis" and "Falling through the service gaps". Most parents want seamless 24/7 end-of-life care for their child at home and to avoid hospital admissions. Despite being desperate to be home and feeling unsafe in hospital, service gaps mean, for some families, there is no option other than their child dying as an inpatient.

Conclusion: The study found marked inequity in parent's experiences. Parents are confident when supported by a trusted 24/7 team with experience delivering palliative care, that provides phone support, face-to-face nursing and access to specialist advice. Hospital staff need improved training and consistent support from specialist palliative care teams. Further research with professionals is needed to understand the local and regional barriers that are preventing this support being available to all families.

Background: Moral distress is the experience of knowing what ethically right action to take, but being unable to act accordingly, due to external factors. It is an experience common to providers working in the neonatal intensive care unit (NICU) where care for infants, often born at the edges of viability or with other life-limiting diagnoses, includes life and death medical decision-making in the context of uncertain prognoses. Palliative care, which aims to reduce suffering, can assist with staff moral distress by providing space for conversations regarding goals-of-care and end-of-life decision making.

Methods: The palliative care and NICU teams co-developed a weekly, case-based conference to discuss palliative care domains of high-risk newborns including pain and symptom management, goals of care, spiritual support, and psychosocial strengths and challenges. The Moral Distress Thermometer (MDT) and the Moral Distress Scale-Revised (MDS-R) were collected at baseline and at 6- and 12-months post-intervention implementation. Quantitative and qualitative analyses were employed as appropriate.

Results: One-hundred thirty-seven participants completed both surveys at baseline including 46 physician/advanced practice providers (MD/APPs) and 91 registered nurses/other health professionals (RN/OHPs). There were statistically significant improvements in both the mean MDT scores and the mean MDS-R for the overall cohort and specifically for the RN/OHP group from baseline to 12-months post-intervention. There was a trend towards improvement on these measures among the MD/APP cohort. Qualitative analysis of the free-text responses revealed several themes describing moral distress in the NICU. Themes common to both groups included: futile/non-beneficial care, prognostic uncertainty and prognostic communication, team conflict, institutional constraints and cultural bias. The theme, "End-of-life (EOL) care inconsistent with personal values" emerged among the RN/OHPs. RN/OHPs experiences were shaped by their proximity to the patient and their role as patient advocate. The MD/APP group reported more cognitive and decisional distress.

Conclusion: A NICU and palliative care-weekly-collaborative conference resulted in significantly decreased moral distress among NICU staff. Qualitative data revealed that both prolonging life with life-sustaining medical therapies (LSMTs) and ending it by withdrawing LSMTs in the context of prognostic uncertainty and institutional constraints creates significant moral distress among staff. Palliative care and NICU programs should consider implementing regular interdisciplinary collaborative conferences to address this distress.

Background: Mainland China's end-of-life care system remained underdeveloped marked by underutilization of hospice care services. Physicians-initiated end-of-life communication is likely to result in immediate enrollment in hospice care. However, there is a lack of empirical evidence on how physicians in China undertake end-of-life communication in advanced cancer. This qualitative study aimed to explore physicians' experiences on discussing end-of-life matters and facilitating hospice care transition within families of patients with advanced cancer.

Methods: A descriptive qualitative study was conducted. Using the purpose sampling, physicians were recruited from 8 hospitals in Shanghai, China. Physicians were eligible if they had experiences in treating patients with advanced cancer and were ineligible if they did not directly participate in end-of-life discussions with patients/families. Semi-structured interviews were conducted from August 2022 to February 2023. Qualitative data were analyzed by content analysis approach.

Results: Among 18 physicians, three major themes emerged regarding barriers to effective end-of-life communication at physician, family, and system levels: (1) Physician avoidance in disclosing terminal prognosis: Prognostic uncertainty, Skill deficiency, Emotional burden, Concerns about therapeutic hope, and Systematic avoidance; (2) Family priority in end-of-life decision-making: Complex family dynamics, Cultural stigma, and Unstructured family coping; (3) Systematic fragmentation in hospice care integration: Limited awareness and understanding, Ineffective referral mechanisms, and Insufficient leadership support.

Conclusion: End-of-life communication in Shanghai is hindered by physician challenges, cultural norms favoring family decisions, and systemic gaps. Targeted training for non-hospice physicians, balanced approaches to patient autonomy and family roles, and strengthened referral/reimbursement policies are needed to improve hospice transitions.

Background: Perinatal palliative care (PPC) provides essential support for families and healthcare providers at the end-of-life. Despite clear global need, structured PPC programs are not widely established.

Aim: To develop a PPC program that supports families confronted with a severe perinatal diagnosis for their (unborn) child, with a focus on evidence-based development of such program, ensuring care is effective, consistent, and aligned with best practices.

Methods: We systematically designed a PPC program following a 7-step method, using Bleijenberg's extended Medical Research Council framework. We conducted a qualitative interview study with 22 healthcare providers and 18 bereaved parents from six hospitals to identify care gaps alongside an integrative review study of international programs. These combined findings informed the development of a PPC prototype program, intended to be integrated in routine practice. Subsequently, we refined the program, identified barriers to implementation, and explored opportunities for contextual tailoring through six participatory workshops involving both healthcare providers and bereaved parents at three hospitals. In these sessions we reviewed the preliminary care components, identified practical challenges, and adapted the model to align with local workflows, staffing realities, and documentation systems.

Results: Five core components were developed: 1. Dedicated fixed PPC Team with care coordinators 2. Formal/Specialized 1,5 day training covering essential PPC aspects 3. Stepwise PPC Approach with a structured PPC plan including individualized care pathways and centralized resources and information sharing 4. Proactive psychological support for both families and staff 5. Structured Team Debriefings Key barriers to implementation included fragmented documentation systems, limited staffing and time resources, and challenges in cross-departmental coordination.

Discussion: We developed a PPC program based on existing international evidence and current PPC practices. This approach ensured both relevance and practical applicability. The program design is a strength, as it is grounded in evidence and shaped through active involvement of parents and healthcare providers, with attention to contextual tailoring. The program is now ready for pilot testing to assess feasibility and acceptability in clinical practice. Future implementation will require institutional support, contextual adaptation, and ongoing evaluation to ensure sustainable integration into perinatal care.

Objective: To investigate the effects of advance care planning (ACP) on patients with terminal cancer in primary hospitals.

Methods: Convenience sampling was used to select 60 patients with terminal cancer and their primary caregivers from primary hospitals. The control group received routine care, while the intervention group received routine care plus an ACP-based care intervention. Patients and their primary caregivers' anxiety and depression levels were assessed before and after the intervention. We compared several outcomes between the ACP intervention and routine care control group, including quality of life scores (EORTC QLQ-C30), frequency of intensive care unit (ICU) admissions, length of hospital stay within 30 days before death, and direct medical costs.

Results: Two weeks post-intervention, caregivers' anxiety and depression were significantly lower in the ACP group than in the control group (P < 0.05). The ACP group also showed significant improvements in quality of life, including role functioning, pain, nausea/vomiting, dyspnea, constipation, diarrhea. At 1 month post-intervention, both patients and caregivers had significantly reduced anxiety/depression in the ACP group (P < 0.05). All quality-of-life dimensions significantly improved with ACP (P < 0.05). There were also significant reductions in ICU admission frequency, length of hospital stay within 30 days before death, and direct medical costs in the ACP group relative to the control group (P < 0.05).

Conclusion: ACP intervention can be successfully implemented for patients with terminal cancer in primary hospitals when clinicians receive structured training and standardized documentation and family engagement protocols are followed. Furthermore, the findings suggest that ACP may help reduce anxiety and depression in patients and their caregivers, improve patients' quality of life, and has the potential to decrease ICU admissions, hospital stay length, and direct medical costs.