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Journal of Nephrology Jun 2024Implementing Advance Care Planning (ACP) for patients with End-Stage Kidney Disease (ESKD), particularly in the context of hemodialysis, presents significant challenges.... (Review)
Review
Implementing Advance Care Planning (ACP) for patients with End-Stage Kidney Disease (ESKD), particularly in the context of hemodialysis, presents significant challenges. Despite existing legal frameworks, disparities in advance care planning practices are evident across Europe. The present perspective introduces a multidisciplinary model, initiated in 2019. This model incorporates a specialized team comprising a nephrologist, a psychologist, a palliative care specialist, and an anesthesiologist/intensivist. Through this collaborative approach, we aimed to comprehensively address the intricate medical, emotional, and psychological dimensions in advance care planning. In this point of view, we discuss the strengths of our model, its potential for European Nephrology, and advocate for guidelines to enhance advance care planning implementation within the nephrology community.
PubMed: 38941001
DOI: 10.1007/s40620-024-02002-w -
European Journal of Pediatrics Jun 2024The number of children eligible for Paediatric Palliative Care has dramatically increased over the years, with few tools that can help with early identification. The...
UNLABELLED
The number of children eligible for Paediatric Palliative Care has dramatically increased over the years, with few tools that can help with early identification. The Paediatric Palliative Screening Scale is a dedicated German, English, and Portuguese screening tool. We aimed to translate and perform a cultural adaptation to the Italian setting of the Paediatric Palliative Screening Scale. This paper was a descriptive observational cross-sectional study. We carried it out in two consecutive steps: (1) translation and back translation and (2) cultural adaptation through a Delphi process. Twenty Paediatric Palliative Care national experts were invited to judge the content and structure of the translated scale and to assess the appropriateness and clarity of each question. Consensus was defined as 70% or more of experts agreeing with each item's appropriateness and clarity. The Italian version of the Paediatric Palliative Screening Scale was obtained after two rounds of Delphi. After the second round of consultation, a substantial increase in experts' consensus was found, especially for questions 1.1, 3.2 and 3.3 (from 56.3 to 93.8%), and reaching more than 83% for all the revised items.
CONCLUSIONS
The Paediatric Palliative Screening Scale is a reliable tool that can assist in timely evaluating children who qualify for Paediatric Palliative Care. The tool can be used in Italian healthcare settings with its cultural adaptation.
WHAT IS KNOWN
• Despite the lack of early diagnosis techniques, there is a significant increase in the number of children entitled to Paediatric Palliative Care. • A specific screening tool called the Paediatric Palliative Screening Scale determines a child's suitability for paediatric palliative treatment.
WHAT IS NEW
• The Paediatric Palliative Screening Scale is necessary to assess the psychosocial needs of patients eligible for Paediatric Palliative Care. The Italian scale has good content and face validity ensuring equivalence between the original and target populations.
PubMed: 38940924
DOI: 10.1007/s00431-024-05649-6 -
The Oncologist Jun 2024Given the typical trajectory of glioblastoma, many patients lose decision-making capacity over time, which can lead to inadequate advance care planning (ACP) and...
BACKGROUND
Given the typical trajectory of glioblastoma, many patients lose decision-making capacity over time, which can lead to inadequate advance care planning (ACP) and end-of-life (EOL) care. We aimed to evaluate patients' current ACP and EOL care status.
PATIENTS AND METHODS
We conducted a cohort study on 205 patients referred to oncologists at a Korean tertiary hospital between 2017 and 2022. We collected information on sociodemographic factors, cancer treatment, palliative care consultation, ACP, legal documents on life-sustaining treatment (LST) decisions, and aggressiveness of EOL care.
RESULTS
With a median follow-up time of 18.3 months: 159 patients died; median overall survival: 20.3 months. Of the 159 patients, 11 (6.9%) and 63 (39.6%) had advance directive (AD) and LST plans, respectively, whereas 85 (53.5%) had neither. Among the 63 with LST plans, 10 (15.9%) and 53 (84.1%) completed their forms through self-determination and family determination, respectively. Of the 159 patients who died, 102 (64.2%) received palliative care consultation (median time: 44 days from the first consultation to death) and 78 (49.1%) received aggressive EOL care. Those receiving palliative care consultations were less likely to receive aggressive EOL care (83.3% vs 32.4%, P < .001), and more likely to use more than 3 days of hospice care at EOL (19.6% vs 68.0%, P < .001).
CONCLUSIONS
The right to self-determination remains poorly protected among patients with glioblastoma, with nearly 90% not self-completing AD or LST plan. As palliative care consultation is associated with less aggressive EOL care and longer use of hospice care, physicians should promptly introduce patients to ACP conversations and palliative care consultations.
PubMed: 38940449
DOI: 10.1093/oncolo/oyae159 -
Acta Medica Philippina 2024Even though innumerable quality of life (QOL) questionnaires have been developed in palliative care, there is no gold standard assessment tool for QOL and no single...
BACKGROUND
Even though innumerable quality of life (QOL) questionnaires have been developed in palliative care, there is no gold standard assessment tool for QOL and no single questionnaire that fits all purposes and individuals. An important challenge to QOL assessments in palliative care is the highly diverse patient population with different diagnoses, disease states/prognosis, and languages. In an outpatient palliative care clinic population, FACIT-Pal-14 proved to be a valid and reliable scale in palliative care patients.
OBJECTIVES
We aimed to (i) determine the psychometric properties of the Tagalog version of the Functional Assessment of Chronic Illness Therapy - Palliative Care - 14 (FACIT-Pal-14) and (ii) measure the Quality of Life (QOL) of Filipino cancer patients.
METHODS
This was a cross-sectional study. License for the use of the Tagalog version 4 of the FACIT-Pal-14 was requested from FACIT.org. To know the psychometric properties of the scales, Cronbach's alpha coefficient was used to assess reliability, and exploratory factor analysis, Pearson correlations, and independent samples T-test were used to determine validity.
RESULTS
The Tagalog FACIT-Pal-14 was administered to 500 Filipino cancer patients consulting at the outpatient department of a training and regional medical center. The participants were mostly female (65.5%), aged 64 years and younger (82.6%), and had breast cancer (53.2%), colorectal cancer (19.2%), and lung cancer (9.4%). The mean Tagalog FACIT-Pal-14 score was 47.35 out of 56 (SD=7.14). The Cronbach's alpha coefficient of the Tagalog version of FACIT-Pal-14 was 0.784. Significantly lower mean Tagalog FACIT-Pal-14 scores were found in patients with Karnofsky Performance Status (KPS) 70 and lower, and Eastern Cooperative Oncology Group Performance Status (ECOG-PS) 2 and above compared with patients with KPS 80 and higher and ECOG-PS 0-1. (t=3.439, p<.001). While the Tagalog FACIT-Pal-14 scores, KPS, and ECOG scores only revealed a very weak, positive correlation (r=0.095; p <0.05), this ability to distinguish between groups known to differ regarding performance status showed the construct validity of the Tagalog FACIT-Pal-14.
CONCLUSIONS
In an outpatient oncology clinic population, the FACIT-Pal 14 showed evidence of reliability and construct validity for evaluating palliative care-specific QOL in Filipino cancer patients. Using this measure, Filipino cancer patients have a good QOL. Therefore, it is recommended that the Tagalog FACIT-Pal-14 be used on subsequent patient follow-ups to assess how their QOL would change over time so that the palliative care services provided will be suited to their needs.
PubMed: 38939424
DOI: 10.47895/amp.vi0.7804 -
Australian Occupational Therapy Journal Jun 2024The purpose of this study was to examine the feasibility of adapting and translating an evidence-based occupational therapist-delivered program shown to be effective in...
INTRODUCTION
The purpose of this study was to examine the feasibility of adapting and translating an evidence-based occupational therapist-delivered program shown to be effective in the community to residential aged care (RAC). The program aims to improve quality of care and quality of life for people living with dementia and the wellbeing of the family care partner.
METHODS
This study took place in a not-for-profit RAC home in Adelaide, South Australia. Mixed methods, specifically questionnaires, activity logs, focus group, and one-on-one interviews were used to evaluate the feasibility of the program implementation. Staff working in the participating home, occupational therapists trained to deliver the program, and residents and their family carer partners were included. Quantitative data were analysed using proportions, means, and standard deviations. Qualitative data were analysed using a thematic approach.
CONSUMER AND COMMUNITY INVOLVEMENT
This study was conducted together with a consumer (person living with dementia) and a carer representative (family member of someone residing in RAC). These representatives provided input towards the study design, interpretation of study data, discussion of results, and recommendations for future consideration.
RESULTS
Small changes to the program improved feasibility and acceptability for delivery in RAC. While the care home staff required added support during implementation, the intervention therapists felt that the program could be delivered in this setting. Family care partners of residents with dementia felt that the program may be better suited if provided upon entry to RAC or in early stages of dementia.
CONCLUSION
Adapting a community-based dementia care program to RAC can be safe and feasible. Program adaptations are necessary for feasibility. Further adaptations and evaluations of associated outcomes (related to residents with dementia and their family care partners) are needed to assess the program effectiveness in larger scale.
PLAIN LANGUAGE SUMMARY
Spending quality time with family members in residential aged care is important. However, many struggle to know what to say or do when visiting a family member who lives with dementia. Programs that teach families about how to communicate with people living with dementia, how to support them to take part in important everyday living activities, or how to understand why changes in behaviours may occur have not been available in residential aged care. This paper describes how we adapted one such evidence-based program from community to residential aged care settings. We consulted with people living with dementia, carers, and families and found that the program could also be valuable in this care setting. Residential aged care staff described how the program is very different to what is usually available in residential aged care, but they were optimistic that with the right support, it could be a valuable way to support residents with dementia and their families. Family members of residents with dementia and therapists delivering the program felt that residents in early stages of living in residential aged care and/or early stages of dementia could benefit the most from these programs. We found that including family members in the intervention process can be useful and empowering for families and residents. Future work should also focus on involving other staff members caring for residents in the process. Communication between staff and families is the key for program delivery and success and treating each person as an individual.
PubMed: 38937870
DOI: 10.1111/1440-1630.12978 -
BMC Psychiatry Jun 2024Compulsory admissions occur in psychiatric hospitals around the world. They result in coercive and sometimes traumatic experiences for service users and carers. Legal... (Meta-Analysis)
Meta-Analysis
A qualitative meta-synthesis of service users' and carers' experiences of assessment and involuntary hospital admissions under mental health legislations: a five-year update.
BACKGROUND
Compulsory admissions occur in psychiatric hospitals around the world. They result in coercive and sometimes traumatic experiences for service users and carers. Legal and service reforms in various countries are intended to reduce rates of detention and improve service user experience. We aimed to inform policy and service delivery by providing an up-to-date synthesis of qualitative evidence on service users' and carers' experiences of assessment and detention under mental health legislation, updating previous reviews in which we searched for literature published up to 2018.
METHODS
We searched five bibliographic databases for studies published between January 2018 and March 2023. We identified 24 additional studies reporting qualitative investigations of service users' or carers' experiences of assessment or detention under mental health legislation. A team including researchers with relevant personal experience analysed and synthesised data using a thematic synthesis approach.
RESULTS
Findings suggest that views on compulsory admissions and assessment varied: many reports highlighted its often negative, traumatic impacts on emotional well-being and self-worth, with fewer accounts of it as an opportunity to access help and support, accompanied by feelings of relief. Experiences of racial discrimination, inequality of access, and dissatisfaction with support before and after hospital stay were more prominent than in our previous reviews.
CONCLUSIONS
Increasing service user and carer involvement in treatment decisions, provision of timely information at key stages of the admission process, training of key personnel, addressing the issue of discrimination, and investing in community alternatives of inpatient care may contribute to and lead to better overall treatment experiences.
PROTOCOL REGISTRATION
The study protocol has been registered in the PROSPERO database on 30th May 2023 (CRD42023423439).
Topics: Humans; Caregivers; Commitment of Mentally Ill; Qualitative Research; Hospitals, Psychiatric; Mental Disorders; Mental Health Services
PubMed: 38937705
DOI: 10.1186/s12888-024-05914-w -
Supportive Care in Cancer : Official... Jun 2024While numerous studies underscore the benefits of early palliative care (EPC) for patients with solid tumors, its effects on patients with multiple myeloma (MM) are not...
PURPOSE
While numerous studies underscore the benefits of early palliative care (EPC) for patients with solid tumors, its effects on patients with multiple myeloma (MM) are not as widely known. This study aims to determine the effects of EPC integration on patients with newly diagnosed symptomatic MM and the feasibility of this approach.
METHODS
This prospective cohort study enrolled patients within eight weeks of diagnosis. Participants met with a palliative care team monthly for 12 months. Functional Assessment of Cancer Therapy-General (FACT-G) plus Multiple Myeloma Subscale (FACT-MM), and Hospital Anxiety and Depression Scale (HADS) were administered upon enrollment and every three months. Proportion of completed visits and assessments determined the feasibility of EPC.
RESULTS
Of the twenty participants enrolled from January 2020 to November 2022, median age was 65 (range 40, 77), 15 (75%) were female, 15 (75%) were white, 65% completed assessments at six months, and 60% at 12 months. The following measures significantly improved at 12 months versus baseline: FACT-G scores increased by 15.1 points (adjusted 95% CI: 2.2-28.1, adjusted p = 0.02); Functional Well-Being scores increased by 6.0 points (adjusted 95% CI: 1.1-10.9, adjusted p = 0.01); and Pain Subscale scores increased by 3.4 points (adjusted 95% CI: 0.5-6.4, adjusted p = 0.02). Depression and anxiety scores did not significantly change over time.
CONCLUSION
Functional well-being, pain experience and overall QOL improved in a cohort of patients with newly diagnosed MM after 12 months of EPC involvement. Although monthly visits seemed feasible, the findings suggest that further research is needed to explore the optimal timing of palliative care interventions in the MM trajectory.
TRIAL REGISTRATION
ClinicalTrials.gov ID NCT04248244 (Registration Date: January 30, 2020).
Topics: Humans; Multiple Myeloma; Female; Male; Palliative Care; Middle Aged; Aged; Prospective Studies; Adult; Quality of Life; Cohort Studies; Depression; Anxiety
PubMed: 38937310
DOI: 10.1007/s00520-024-08665-2 -
Medical Humanities Jun 2024Stories about personal experiences of assisted dying, a term comprising both instances when a lethal substance is administered by a physician or by the patient...
Stories about personal experiences of assisted dying, a term comprising both instances when a lethal substance is administered by a physician or by the patient themselves, are frequently cited in law-making processes. These experiences of healthcare systems and the laws governing end-of-life procedures thereby interactively influence the future of medicine at the deathbed. With more countries legalising some form of assisted dying or opening political debate about the issue, addressing how these personal stories shape public opinions and social institutions is timely. In this current controversy, we question how medical humanities researchers are to make sense of the role of these stories in law-making, and critically reflect on a digital archive that seeks to make these interconnections visible. At the methodological level, the reciprocal interactions in assisted dying between medicine, law and the arts urges us to reconsider the conceptual foundations of interdisciplinary research in the medical humanities.
PubMed: 38937089
DOI: 10.1136/medhum-2024-012947 -
BMJ Supportive & Palliative Care Jun 2024Regional hospice and palliative care networks (RHPCNs) are increasingly being established to improve integrative care for patients with life-limiting illnesses. This...
BACKGROUND
Regional hospice and palliative care networks (RHPCNs) are increasingly being established to improve integrative care for patients with life-limiting illnesses. This scoping review aimed at identifying and synthesising international literature on RHPCNs, focusing on structures, outcomes, benefits, success factors and good practices.
METHOD
Following Arksey and O'Malley's (2005) framework, a search of four electronic databases (CINAHL, Google Scholar, PubMed, Web of Science Core Collection) was conducted on 7 July 2023. Additionally, a manual search of reference lists of the identified articles was performed. Original research, qualification theses and descriptive reports on RHPCNs at a structural level were included.
FINDINGS
Two researchers analysed 777 article abstracts, screened 104 full texts and selected 24 articles. The included studies predominantly used qualitative designs. RHPCNs self-identify as local stakeholders, employ coordination offices and steering committees, and actively recruit network partners. Outcomes included improved professional practices, enhanced quality of care, increased patient utilisation of regional care offerings and improved patient transitions between care providers. Success factors included clear coordination, transparent communication, strategic planning and resource-securing strategies.
CONCLUSIONS
The analysis identified key RHPCN success factors such as effective communication and adaptive leadership. Despite the need for further research, the findings emphasise RHPCNs' potential to improve palliative care and encourage policymaker support.
OTHER
This scoping review is part of the research project HOPAN, which aims at assessing and analysing RHPCNs in Germany. The project is funded by the German Innovation Fund of the Federal Joint Committee (G-BA) (Grant N° 01VSF22042; funding period: 01/2023-12/2024).
PubMed: 38936971
DOI: 10.1136/spcare-2024-004974 -
BMJ Supportive & Palliative Care Jun 2024Lower rates of goals of care (GOC) conversations have been observed in non-white hospitalised patients, which may contribute to racial disparities in end-of-life care....
OBJECTIVES
Lower rates of goals of care (GOC) conversations have been observed in non-white hospitalised patients, which may contribute to racial disparities in end-of-life care. We aimed to assess how a targeted initiative to increase GOC documentation rates is associated with GOC documentation by race.
METHODS
We retrospectively assessed GOC documentation during a targeted GOC initiative for adult patients with an artificial intelligence predicted elevated risk of mortality. Patients were admitted to an urban academic medical centre in Pittsburgh, Pennsylvania between July 2021 and 31 December 2022.
RESULTS
The 3643 studied patients had a median age of 72 (SD 13.0) and were predominantly white (87%) with 42% admitted to an intensive care unit and 15% dying during admission. GOC documentation was completed for 28% (n=1019/3643). By race, GOC was documented for 30% black (n=105/351), 28% white (n=883/3161) and 24% other (n=31/131) patients (p=0.3933). There was no statistical difference in the rate of documented GOC among races over time (p=0.5142).
CONCLUSIONS
A targeted initiative to increase documented GOC conversations for hospitalised patients with an elevated risk of mortality is associated with similar documentation rates across racial groups. Further research is needed to assess whether this initiative may promote racial equity in GOC documentation in other settings.
PubMed: 38936969
DOI: 10.1136/spcare-2023-004657