Stenting of the Patent Ductus Arteriosus.

Since PDA stenting was first attempted in the early 1990s, significant technical advancements have improved outcomes and some centers have even transitioned to exclusive PDA stenting for all infants with duct-dependent pulmonary circulation. In addition to its use in infants with duct-dependent pulmonary circulation, PDA stenting has also been adapted as a percutaneous palliative option for suprasystemic pulmonary arterial hypertension and as a component of the hybrid procedure. In this article, the authors aim to review indications and outcomes for PDA stenting, describe the procedure, and discuss future directions.

Palliative single-level selective dorsal rhizotomy for children with spastic cerebral palsy Gross Motor Function Classification System level IV and V: a case series and systematic review of the literature.

OBJECTIVE: Single-level selective dorsal rhizotomy (SDR), typically indicated for ambulatory patients, is a controversial topic for severe spastic cerebral palsy (CP) with Gross Motor Function Classification System (GMFCS) level IV or V. The objective of this case series and systematic literature review was to outline the indication and outcome of palliative SDR for nonambulatory patients with CP and GMFCS level IV and V, focusing on improvement of spasticity and of patient and caregiver reported quality of life assessment. METHODS: A retrospective case series of patients with CP and GMFCS level IV or V who underwent single-level SDR at the authors' institution is presented. Furthermore, two databases (PubMed and Embase) were searched and a systematic review with a search string based on the terms "selective dorsal rhizotomy," "cerebral palsy," and "outcome" was conducted. The primary outcome was the reduction of spasticity based on the modified Ashworth scale (MAS). Secondary outcomes were change on the Gross Motor Function Measure-66 (GMFM-66), evaluation of patient-reported outcome measures (PROMs), surgical morbidity, and mortality. RESULTS: Eleven consecutive children under the age of 25 years undergoing palliative single-level SDR were included. All patients showed a reduction in MAS score (mean 1.09 ± 0.66 points) and no surgical morbidity and mortality occurred. For the systematic review results from our case series, in addition to 4 reports, 274 total patients were included. Reduction of spasticity based on MAS score was noted in all studies (mean range 1.09-3.2 points). Furthermore, in 2 studies spasticity of the upper extremities showed a MAS score reduction as well (range 1.7-2.8 points). The GMFM-66 score improved in 72% of the patients, while bladder function improved in 78% of the patients. Based on the PROMs, 92% of the patients/caregivers were satisfied with the outcome and their quality of life after the procedure. Two wound infections (2.7%) and one CSF leak (1.3%) occurred, while no surgery-related deaths were described. CONCLUSIONS: This analysis showed an improvement in spasticity, daily care, and comfort for patients with CP and GMFCS levels IV and V. Larger cohorts analyzing the outcome of palliative single-level SDR, based on the MAS, GMFM-66, and PROMs, are still needed and should be the focus of future studies. Systematic review registration no.: CRD42024495762 (https://www.crd.york.ac.uk/prospero/).

A survey of cancer patients' interest in undertaking exercise to promote relaxation during radiotherapy for breast cancer and metastatic cancer.

BACKGROUND: Approximately 25-50% of patients undergoing radiotherapy (RT) experience psychological distress and anxiety, which can detrimentally affect both their quality of life and treatment outcomes. While previous research has demonstrated that relaxation exercises can enhance the tolerability of RT and alleviate associated stress and anxiety, the specific needs for such therapies in radiation oncology remain under-explored. This study aims to investigate the demand for and preferences toward relaxation exercises among radiotherapy patients, addressing a critical gap in patient-centered care. METHODS: A prospective pseudonymized survey study using a one-time paper-based questionnaire was conducted from 2022 to 2023 among patients undergoing curative-intent RT for breast cancer or patients undergoing palliative RT for bone metastases. Patients were asked in a 11-item questionnaire about their anxiety, pre-existing practice of relaxation exercises/interventions, their interest in relaxation exercises, and preferences on the type and format of instruction. Data were analyzed descriptively. RESULTS: 100 patients (74 female and 26 male) responded, of whom 68 received curative-intent adjuvant RT and 32 palliative RT. Median age was 62 years. 78% of patients indicated a desire to be actively involved in their radiotherapy, but only 27% had used relaxation exercises prior to RT. 44.8% of both curatively and palliatively treated patients who wanted to be actively involved in their therapy desired to learn how to best relax. 56.4% of respondents were willing to spend extra time learning offered exercises. CONCLUSION: The survey indicates that patients undergoing RT, both for curative or palliative intent, desire relaxation exercises to relieve stress and anxiety from RT. It is therefore important to assess the need for relaxation interventions in individual patients and to develop suitable programs or collaborate with other healthcare professionals to meet these needs.

Audit of an in-patient palliative care quality improvement process for patients with pancreatic ductal adenocarcinoma in a South African teaching hospital.

BACKGROUND: Pancreatic ductal adenocarcinoma (PDAC) is an aggressive malignancy with poor survival rates. Timeously introduced palliative care (PC) improves the quality of life (QoL) for patients with terminal diseases. In 2020, an in-patient PC-quality improvement (QI) programme was implemented for PDAC patients. This study compared PC outcomes before and after the introduction of the PC-QI programme. METHODS: A focus group identified five critical intervention areas that could improve care. These were in-patient PC referral, pain and symptom control, shared decision-making, interdisciplinary collaborative care, and continuity of care. A hospital record audit of PDAC patients was conducted in pre- and post-implementation cohorts, and the results were compared. RESULTS: A total of 68 (2017 pre-PC-QI) and 39 (2022 post-PC-QI) patient records were audited. Demography, symptom duration, referral delay, and clinical findings were similar in both cohorts. In-patient PC referrals improved significantly from 54.4% in 2017 to 82.1% in 2022 (p = 0.0059). Significant improvements were also recorded in shared decisionmaking, collaboration, and continuity of care, while the reassessment of pain and symptoms after treatment improved. Fewer invasive procedures were done in the 2022 cohort (p = 0.0056). The delay from admission to an invasive diagnostic procedure decreased from a mean of 8.7 to 1.5 days (p = 0.0001). The duration of hospital admission, overall survival (OS), and readmissions during the final 30 days of life were similar. CONCLUSION: The QI programme resulted in improved use of the in-hospital PC service and made better use of scarce resources. Increasing patient and family participation and feedback will further inform the development of the quality of PC services.

Effectiveness of early palliative care in patients with head and neck cancer in Taiwan.

BACKGROUND: Early palliative care (EPC) benefits some cancers, but its clinical outcomes differ depending on patients' racial and ethnic disparities, and customs. To determine whether EPC improves symptoms, emotional distress, and quality of life among Taiwanese patients with early or advanced-stage head and neck cancer (HNC). METHODS: Based on participants' pathological stages, they were categorized as having early and advanced-stage HNC. Those willing and unwilling to undergo EPC were assigned to the EPC and standard groups, respectively. Their daily cancer-related symptoms were assessed using the Distress Thermometer (DT) and MD Anderson Symptom Inventory (MDASI), whose scores' concurrent validity was evaluated using the European Organization for Research and Treatment of Core Quality of Life (EORTC-QLQ-C30) and Head and Neck 35 (EORTC-QLQ-H&N35) questionnaires. RESULTS: Patients (n = 93) diagnosed with HNC at Taiwan's Chia-Yi Christian Hospital from November 2020 to October 2022 were recruited. The patients voluntarily split into two groups: EPC groups and standard groups (23 and 11 in early-stage; 46 and 13 in advanced-stage, respectively). DT assessment showed significant emotional distress improvements for all patients with HNC who received EPC. The EORTC-QLQ-C30 questionnaire indicated that, compared to standard interventions, EPC groups significantly improved the quality of life and some symptoms for both early and advanced-stage HNC patients. However, the EORTC-QLQ-H&N35 questionnaire found no significant difference between the two groups. Furthermore, advanced-stage patients' anticancer treatment completion rates with EPC and standard interventions were 95.35% and 75%, respectively. CONCLUSION: EPC improves symptoms, emotional distress, quality of life, and treatment completion rates in Taiwanese patients with early or advanced-stage HNC. Nonetheless, further extensive clinical studies are required for validation.

[Management of Malignant Pleural Effusion]. / Management des malignen Pleuraergusses.

Malignant pleural effusion is a common diagnosis in metastasized cancers. It is always of palliative character. Main symptoms are dyspnoea and reduced quality of life. Diagnosis is made by ultrasound-guided puncture of the pleural effusion (cytology) and often video-assisted thoracic surgery with biopsy of the pleural surface (histology). The goal of treatment is a fast, sustainable, minimally invasive, patient-centred therapy that increases quality of life. Besides systemic therapy and best supportive care the patient can be treated with local therapy including either pleurodesis (via drainage or VATS) or an indwelling-pleural catheter (IPC). Decision for one of these procedures is made upon performance index (ECOG), expandability of the lung, prognosis and the patient's wish. For the first technique, the lung must be expandable. The latter one (IPC) can be implanted both with expandable and trapped lung. Both are similarly effective in symptom control.

Minimally invasive palliative treatment of malignant tracheoesophageal fistula using cardiac septal occluder.

INTRODUCTION: Tracheoesophageal fistula (TEF) especially malignant TEF (mTEF) is an uncommon yet critical medical condition necessitating immediate intervention. This life-threatening condition frequently manifests in critically ill patients who are dependent on prolonged mechanical ventilation and are unsuitable candidates for thoracotomy due to their compromised health status. The Management of these mTEF patients remain a significant challenge.This study aimed to evaluate the safety and efficacy of using a cardiac septal occluder for the closure of mTEF. METHODS: 8 patients with mTEF underwent closure surgery using atrial/ventricular septal defect (ASD/VSD) septal occluders at the Respiratory Department of HuBei Yichang Central People's Hospital from 2021 to 2023. The procedure involved percutaneous placement of the occluder through the fistula to achieve closure. RESULTS: The placement of the cardiac septal occluder was successfully achieved with ease and efficiency in all patients. The study demonstrated that the use of cardiac septal occluder therapy in patients with mTEF can alleviate symptoms, improve quality of life, and enhance survival rates, with no significant complications observed. Furthermore, the study provided comprehensive details on surgical indications, preoperative evaluation and diagnosis, selection of occluder, methods of occlusion, and postoperative care. CONCLUSIONS: The application of cardiac septal occluder in the treatment of mTEF is a safe and effective palliative treatment. This approach may be particularly beneficial for patients with a high risk of complications and mortality associated with traditional surgical interventions.

[The oncologist, death and the pharmakon]. / L'oncologue, la mort et le pharmakon.

THE ONCOLOGIST, DEATH AND THE PHARMAKON. Stopping chemotherapy for patients treated in oncology is a difficult moment, feared by oncologists because it is often associated with abandonment or even failure in front of a resistant or aggressive disease. End-of-life chemotherapy is still common in oncology departments. However, it will be harmful if it causes side effects which alter the quality of life of patients or even hasten their death. But above all, this chemotherapy delays the implementation of appropriate palliative care support. Questioning the risk of hubris (excess) in some treatment, asking the relationship between the patient and his death, and prioritizing the quality of last moments is essential to best support patients on the path to the end o f life.

L'ONCOLOGUE, LA MORT ET LE PHARMAKON. L'arrêt des chimiothérapies des malades traités en oncologie est un moment difficile, redouté par les oncologues car souvent associé à un abandon, voire à un échec, face à une maladie résistante devenue trop agressive. La chimio thérapie de la fin de vie est encore fréquente dans les services d'oncologie. Elle est pourtant délétère si elle entraîne des effets indésirables qui altèrent la qualité de vie des malades, voire précipitent leur décès. Mais, surtout, cette chimiothérapie "de trop" retarde la mise en place d'un accompagnement adapté en soins palliatifs. Interroger le risque d'hubris de certains traitements, questionner le rapport à la mort du malade et privilégier la qualité du temps qui reste est pourtant essentiel pour accompagner au mieux les malades sur le chemin de la fin de vie.

"Let's put it this way: you can't really live without it" - digital technologies in routine palliative care delivery: an explorative qualitative study with patients and their family caregivers in Germany.

BACKGROUND: Despite ongoing efforts to integrate palliative care into the German healthcare system, challenges persist, particularly in areas where infrastructure does not fully support digital technologies (DT). The increasing importance of digital technology (DT) in palliative care delivery presents both opportunities and challenges. OBJECTIVE: This study aimed to explore the perspectives and preferences of palliative care patients and their family caregivers regarding the use of DT in care delivery. METHODS: An exploratory qualitative study was conducted using semi-structured interviews with palliative care patients and their family caregivers across various settings. Participants were selected through gatekeeper-supported purposive sampling. Interviews were analysed using structured qualitative content analysis. RESULTS: Nineteen interviews were conducted.Three themes emerged: (1) Application of DTs in palliative care; (2) Potential of DTs; (3) Barriers to the use of DTs. Key findings highlighted the preference for real-time communication using DTs that participants are familiar with. Participants reported limited perceived value for digital transformation in the presence of in-person care. The study identified requirements for DT development and use in palliative care, including the need for direct and immediate functionality, efficiency in healthcare professional (HCP) work, and continuous access to services. CONCLUSION: The findings highlight a demonstrate the importance of familiarity with DTs and real-time access for patients and their families. While DT can enhance palliative care efficiency and accessibility, its integration must complement, not replace, in-person interaction in palliative care. As DTs continue to grow in scope and use in palliative care, maintaining continued user engagement is essential to optimise their adoption and ensure they benefit patients and their caregivers.

Improving person-centred care for older persons with serious multimorbidity in LMICs.

BACKGROUND:  Few interventions are documented to meet person-centred needs of older people with serious multimorbidity in low- and middle-income countries where access to palliative care is limited. Most of the care in these settings is delivered by primary care health workers. AIM:  This study reports the development and acceptability testing of a communication skills training and mentorship intervention for primary health care workers in Malawi. SETTING:  This study was conducted at Mangochi District Hospital in the south-eastern region of Malawi. METHODS:  Twelve primary health care workers (four clinical officers and eight nurses) working in the primary care clinics received the intervention. The intervention was designed using modified nominal group technique, informed by stakeholder interviews and a theory of change workshop. Acceptability is reported from thematic analysis of a focus group discussion with primary health care workers who received the intervention using NVivo version 14. RESULTS:  Older persons with serious multi-morbidity and their caregivers identified a need for enhanced communication with their healthcare providers. This helped to inform the development of a communication training skills and mentorship intervention package based on the local best practice six-step Ask-Ask-Tell-Ask-Ask-Plan framework. Primary health care workers reported that the intervention supported person-centred communication and improved the quality of holistic assessments, although space, workload and availability of medication limited the implementation of person-centred communication. CONCLUSION:  The Ask-Ask-Tell-Ask-Ask-Plan framework, supported person-centered communication and improved the quality of holistic assessment.Contribution: This intervention offers an affordable, local model for integrating person-centered palliative care in resource-limited primary healthcare settings.

Spirituality in advanced cancer: implications for care in oncologic emergencies.

Spirituality-defined as "the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred"-plays important roles in the setting of serious illnesses such as cancer. The nature of oncologic emergencies, with their attendant imminent threat to life and urgent medical decision-making, renders more salient the frequent role of spirituality in the context of coping, spiritual needs, and medical decisions. Furthermore, these roles highlight the importance of spiritual care: recognition of and attention to patients' and their family's spirituality within medical care. Extant palliative care quality guidelines include spiritual care as a core domain of palliative care provision. Generalist spiritual care requires spiritual history-taking by clinicians and respect and integration of spirituality and spiritual values into medical care. Specialty spiritual care involves the integration of professionally trained spiritual care providers into the care of patients facing oncologic emergencies. Spiritual care is associated with better patient quality of life and greater transitions to more comfort-focused care; among family caregivers, it is associated with greater care satisfaction. Spiritual care is always patient-centered, and hence can be provided by clinicians regardless of their spiritual backgrounds. The integration of spiritual care into the care of patients and their families holds promise to advance holistic care and improve well-being in this setting of oncologic emergencies.

The role of specialist palliative care in individuals "living beyond cancer": a narrative review of the literature.

PURPOSE: Many patients living beyond cancer experience significant unmet needs, although few of these patients are currently reviewed by specialist palliative care teams (SPCTs). The aim of this narrative review was to explore the current and potential role of SPCTs in this cohort of patients. METHODS: A search strategy was developed for Medline, and adapted for Embase, CINAHL, and PsycInfo. Additionally, websites of leading oncology, cancer survivorship, and specialist palliative care organisations were examined. The focus of the search was on individuals living beyond cancer rather than other groups of cancer survivors. RESULTS: 111 articles were retrieved from the search for full text review, and 101 other sources of information were identified after hand searching the reference lists of the full text articles, and the aforesaid websites. The themes of the review encompass the definition of palliative care/specialist palliative care, current models of specialist palliative care, core activities of SPCTs, relevant expertise of SPCTs, and potential barriers to change in relation to extending their support and expertise to individuals living beyond cancer. The review identified a paucity of evidence to support the role of SPCTs in the management of patients living beyond cancer. CONCLUSIONS: Individuals living beyond cancer have many unmet needs, and specific services are required to manage these problems. Currently, there is limited evidence to support the role of specialist palliative care teams in the management of this cohort of people, and several potential barriers to greater involvement, including limited resources, and lack of relevant expertise.

Patient and proxy perspectives in decision-making for geriatric hip fracture management in the Netherlands: a qualitative study.

OBJECTIVE: The objective of this study was to explore the perspectives with the decision-making process between surgery and palliative, non-operative management of geriatric hip fracture patients and their proxies. DESIGN: A qualitative interview study was performed. Patients and proxies were asked to participate in semi-structured interviews. Data were analysed using reflexive thematic analysis according to Braun and Clarke's six-step guide. SETTING AND PARTICIPANTS: Hip fracture patients in the Netherlands were eligible for inclusion. For hip fracture patients with a pre-existing diagnosis of dementia and for patients who opted for palliative, non-operative management, proxies were included. RESULTS: A total of 16 interviews were conducted, consisting of 4 patient interviews and 12 proxy interviews. Five themes were identified during thematic analysis: (1) underlying patient values, (2) the provision of information, (3) reasons to consider either palliative, non-operative management or surgery, (4) involvement in decision and (5) realisation of expectations. Information provided by the physician varied in terms of desired level of detail but involved discussing the advantages and disadvantages of surgery and palliative, non-operative management. Patients and proxies underscored the importance of achieving optimal quality of life, and the disparity between expected and actual treatment outcomes was unpleasant and negatively influenced the overall experience. CONCLUSIONS: In-depth analysis provided a unique insight into the patient and proxy perspectives in shared decision-making for geriatric hip fracture management in the acute setting. Overall, there were differences between reported experiences and preferences of participants. This heterogeneity stresses the importance of keeping a person-centred approach during shared decision-making. Other key considerations during shared decision-making include physicians informing patients from professional experience and communicating sensitively about both treatment options and prognosis. Physicians should aim to provide realistic, sensitive and timely information to both patients and proxies during the choice between curation and palliation for their hip fracture.

Naming racism as a root cause of inequities in palliative care research: a scoping review.

BACKGROUND: Racial and ethnic inequities in palliative care are well-established. The way researchers design and interpret studies investigating race- and ethnicity-based disparities has future implications on the interventions aimed to reduce these inequities. If racism is not discussed when contextualizing findings, it is less likely to be addressed and inequities will persist. OBJECTIVE: To summarize the characteristics of 12 years of academic literature that investigates race- or ethnicity-based disparities in palliative care access, outcomes and experiences, and determine the extent to which racism is discussed when interpreting findings. METHODS: Following Arksey & O'Malley's methodology for scoping reviews, we searched bibliographic databases for primary, peer reviewed studies globally, in all languages, that collected race or ethnicity variables in a palliative care context (January 1, 2011 to October 17, 2023). We recorded study characteristics and categorized citations based on their research focus-whether race or ethnicity were examined as a major focus (analyzed as a primary independent variable or population of interest) or minor focus (analyzed as a secondary variable) of the research purpose, and the interpretation of findings-whether authors directly or indirectly discussed racism when contextualizing the study results. RESULTS: We identified 3000 citations and included 181 in our review. Of these, most were from the United States (88.95%) and examined race or ethnicity as a major focus (71.27%). When interpreting findings, authors directly named racism in 7.18% of publications. They were more likely to use words closely associated with racism (20.44%) or describe systemic or individual factors (41.44%). Racism was directly named in 33.33% of articles published since 2021 versus 3.92% in the 10 years prior, suggesting it is becoming more common. CONCLUSION: While the focus on race and ethnicity in palliative care research is increasing, there is room for improvement when acknowledging systemic factors - including racism - during data analysis. Researchers must be purposeful when investigating race and ethnicity, and identify how racism shapes palliative care access, outcomes and experiences of racially and ethnically minoritized patients.

Adverse events at the end of life of hospital patients with or without a condition relevant for palliative care: a nationwide retrospective record review study in the Netherlands.

BACKGROUND: Patient safety is crucial for quality of care. Preventable adverse events (AEs) occur in 1 of 20 patients in the hospital, but it is unknown whether this is different for patients with a condition relevant for palliative care. The majority of the limited available research on this topic is only focused on patients already receiving palliative care, and do not make comparisons with other patients at the end-of-life. We identified and compared the prevalence, preventability, nature and causes of AEs in patients with and without a condition relevant for palliative care. METHODS: A nationwide retrospective record review study was performed in 20 Dutch hospitals. A total of 2,998 records of patients who died in hospital in 2019 was included. Records were reviewed for AEs. We identified two subgroups: patients with (n = 2,370) or without (n = 248) a condition relevant for palliative care through the selection method of Etkind (2017). Descriptive analyses were performed to calculate prevalence, nature, causes and prevention strategies. T-tests were performed to calculate differences between subgroups. RESULTS: We found no significant differences between subgroups regarding AE prevalence, this was 15.3% in patients with a condition relevant for palliative care, versus 12.0% in patients without a condition relevant for palliative care (p = 0.148). Potentially preventable AE prevalence was 4.3% versus 4.4% (p = 0.975). Potentially preventable death prevalence in both groups was 3.2% (p = 0.938). There were differences in the nature of AEs: in patients with a condition relevant for palliative care this was mostly related to medication (33.1%), and in patients without a condition relevant for palliative care to surgery (50.8%). In both subgroups in the majority of AEs a patient related cause was identified. For the potentially preventable AEs in both subgroups the two most important prevention strategies as suggested by the medical reviewers were reflection and evaluation and quality assurance. DISCUSSION: Patient safety risks appeared to be equally prevalent in both subgroups. The nature of AEs does differ between subgroups: medication- versus surgery-related, indicating that tailored safety measures are needed. Recommendations for practice are to focus on reflecting on AEs, complemented with case evaluations.

Challenges in recognizing and discussing changes in a resident's condition in the palliative phase: focus group discussions with nursing staff working in nursing homes about their experiences.

BACKGROUND: Most nursing home residents have complex care needs, require palliative care and eventually die in these facilities. Timely recognition of changes in a resident's condition is crucial for providing appropriate care. Observations by nursing staff play a significant role in identifying and interpreting these changes. METHODS: Focus group discussions were conducted with nursing staff from ten nursing homes in the Netherlands to explore their experiences and challenges in recognizing and discussing changes in a resident's condition. These discussions were analysed following the principles of thematic analysis. RESULTS: The analysis of the challenges nursing staff face in identifying and interpreting changes in a resident's condition, resulted in three themes. First, that recognizing changes is considered complex, because it requires specialized knowledge and skills that is generally not part of their education and must partly be learned in practice. This also depends on how familiar the nursing staff is with the resident. Furthermore, different people observe residents through different lenses, depending on their relation and experiences with residents. This could lead to disagreements about the resident's condition. Lastly, organizational structures such as the resources available to document and discuss a resident's condition and the hierarchy between nursing home professionals often hindered discussions and sharing observations. CONCLUSION: Nursing staff's experiences highlight the complexity of recognizing and discussing changes in nursing home residents' conditions. While supporting the observational skills of nursing staff is important, it is not enough to improve the quality of care for nursing home residents with palliative care needs. As nursing staff experiences challenges at different, interrelated levels, improving the process of recognizing and discussing changes in nursing home residents requires an integrated approach in which the organization strengthens the position of nursing staff. It is important that their observations become a valued and integrated and part of nursing home care.