Care trajectories and transitions at the end of life: a population-based cohort study.

BACKGROUND: End-of-life periods are often characterised by suboptimal healthcare use (HCU) patterns in persons aged 65 years and older, with negative effects on health and quality of life. Understanding care trajectories (CTs) and transitions in this period can highlight potential areas of improvement, a subject yet only little studied. OBJECTIVE: To propose a typology of CTs, including care transitions, for older individuals in the 2 years preceding death. DESIGN: Retrospective cohort study. METHODS: We used multidimensional state sequence analysis and data from the Care Trajectories-Enriched Data (TorSaDE) cohort, a linkage between a Canadian health survey and Quebec health administrative data. RESULTS: In total, 2080 decedents were categorised into five CT groups. Group 1 demonstrated low HCU until the last few months, whilst group 2 showed low HCU over the first year, followed by a steady increase. A gradual increase over the 2 years was observed for groups 3 and 4, though more pronounced towards the end for group 3. A persistent high HCU was observed for group 5. Groups 2 and 4 had higher proportions of cancer diagnoses and palliative care, as opposed to comorbidities and dementia for groups 3 and 5. Overall, 68.4% of individuals died in a hospital, whilst 27% received palliative care there. Care transitions increased rapidly towards the end, most notably in the last 2 weeks. CONCLUSION: This study provides an understanding of the variability of CTs in the last two years of life, including place of death, a critical step towards quality improvement.

Investigating Data Diversity and Model Robustness of AI Applications in Palliative Care and Hospice: Protocol for Scoping Review.

BACKGROUND: Artificial intelligence (AI) has become a pivotal element in health care, leading to significant advancements across various medical domains, including palliative care and hospice services. These services focus on improving the quality of life for patients with life-limiting illnesses, and AI's ability to process complex datasets can enhance decision-making and personalize care in these sensitive settings. However, incorporating AI into palliative and hospice care requires careful examination to ensure it reflects the multifaceted nature of these settings. OBJECTIVE: This scoping review aims to systematically map the landscape of AI in palliative care and hospice settings, focusing on the data diversity and model robustness. The goal is to understand AI's role, its clinical integration, and the transparency of its development, ultimately providing a foundation for developing AI applications that adhere to established ethical guidelines and principles. METHODS: Our scoping review involves six stages: (1) identifying the research question; (2) identifying relevant studies; (3) study selection; (4) charting the data; (5) collating, summarizing, and reporting the results; and (6) consulting with stakeholders. Searches were conducted across databases including MEDLINE through PubMed, Embase.com, IEEE Xplore, ClinicalTrials.gov, and Web of Science Core Collection, covering studies from the inception of each database up to November 1, 2023. We used a comprehensive set of search terms to capture relevant studies, and non-English records were excluded if their abstracts were not in English. Data extraction will follow a systematic approach, and stakeholder consultations will refine the findings. RESULTS: The electronic database searches conducted in November 2023 resulted in 4614 studies. After removing duplicates, 330 studies were selected for full-text review to determine their eligibility based on predefined criteria. The extracted data will be organized into a table to aid in crafting a narrative summary. The review is expected to be completed by May 2025. CONCLUSIONS: This scoping review will advance the understanding of AI in palliative care and hospice, focusing on data diversity and model robustness. It will identify gaps and guide future research, contributing to the development of ethically responsible and effective AI applications in these settings. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/56353.

Tensions between end-of-life care and organ donation in controlled donation after circulatory death: ICU healthcare professionals experiences.

BACKGROUND: The development of controlled donation after circulatory death (cDCD) is both important and challenging. The tension between end-of-life care and organ donation raises significant ethical issues for healthcare professionals in the intensive care unit (ICU). The aim of this prospective, multicenter, observational study is to better understand ICU physicians' and nurses' experiences with cDCD. METHODS: In 32 ICUs in France, ICU physicians and nurses were invited to complete a questionnaire after the death of end-of-life ICU patients identified as potential cDCD donors who had either experienced the withdrawal of life-sustaining therapies alone or with planned organ donation (OD(-) and OD( +) groups). The primary objective was to assess their anxiety (State Anxiety Inventory STAI Y-A) following the death of a potential cDCD donor. Secondary objectives were to explore potential tensions experienced between end-of-life care and organ donation. RESULTS: Two hundred six ICU healthcare professionals (79 physicians and 127 nurses) were included in the course of 79 potential cDCD donor situations. STAI Y-A did not differ between the OD(-) and OD( +) groups for either physicians or nurses (STAI Y-A were 34 (27-38) in OD(-) vs. 32 (27-40) in OD( +), p = 0.911, for physicians and 32 (25-37) in OD(-) vs. 39 (26-37) in OD( +), p = 0.875, for nurses). The possibility of organ donation was a factor influencing the WLST decision for nurses only, and a factor influencing the WLST implementation for both nurses and physicians. cDCD experience is perceived positively by ICU healthcare professionals overall. CONCLUSIONS: cDCD does not increase anxiety in ICU healthcare professionals compared to other situations of WLST. WLST and cDCD procedures could further be improved by supporting professionals in making their intentions clear between end-of-life support and the success of organ donation, and when needed, by enhancing communication between ICU physician and nurses. TRIAL REGISTRATION: This research was registered in ClinicalTrials.gov (Identifier: NCT05041023, September 10, 2021).

Healthcare professionals' experiences of providing palliative care for patients with diabetes - a qualitative study.

BACKGROUND: At present, there are no specific guidelines for the treatment of diabetes in palliative care in Norway. The aim of this study was therefore to explore healthcare professionals' experiences of providing palliative care to individuals with diabetes in specialist as well as primary care settings. METHODS: We interviewed 12 healthcare professionals from two palliative care units in specialist healthcare, one hospice unit in a nursing home, and one dietary care unit providing counselling in the municipality in the eastern part of Norway. Thematic analysis was used to analyze the data. RESULTS: Our analysis generated three main themes: 1) "Quality of life is the main focus", which showed that the healthcare professionals' main focus was on comforting patients through engagement and communication; 2) "An individualized approach", emphasizing that the treatment was tailored to the unique circumstances of each individual and considered factors such as life expectancy, difficult blood glucose control, and multidisciplinary collaboration, and 3) "Diabetes in the background", which highlighted that they had a modest focus on diabetes. Diabetes was seen as another aspect of health that they had to be aware of, but their limited knowledge of diabetes guidelines, technical tools, and treatment choices underscored that attentiveness to the diabetes treatment was not prominent. CONCLUSION: The findings show that a lack of guidelines allowed for diverse approaches to the treatment of patients with diabetes in palliative care. Attentiveness to diabetes was based on the individual healthcare professionals' experience and expertise, professional views, and the circumstances of each individual.

Organisation and management of multi-professional care for cancer patients at end-of-life: state-of-the-art from a survey to community and hospital-based professionals.

Providing timely and satisficing End-of-Life care (EOLC) is a priority for healthcare systems since aging population and chronic diseases are boosting the global demand for care at end-of-life (EOL). In OECD countries the access to EOLC is insufficient. In Italy, the average rate of cancer patients assisted by the palliative care (PC) network at EOL was 28% in 2021, with high variability in the country. Among the Italian regions offering the best coverages, Tuscany has a rate of about 40%, but intraregional variation is marked as well. The study aims to explore the delivery of EOLC to adult cancer patients in public facilities in the Tuscany region through survey data collection among professionals. Two online surveys were delivered to Directors of community-based PC Functional-Units (FUs) and Directors of hospital-based medical-oncology units. All FU Directors responded to the survey (n = 14), and a response rate of 96% was achieved from hospital-unit Directors (n = 27). The results highlight the availability of numerous dedicated services, but reveal heterogeneity among and within organisations, including variations in the professionals involved, pathways, and tools adopted. Care continuity is supported by institutionalized collaboration between hospital and community settings, but hindered by fragmented care processes and heterogeneous transition pathways. Late referral to PC is perceived as a major constraint to EOLC. Developing structured pathways for patient transition to end-stage PC is crucial, and practices/processes should be uniformly implemented to ensure equity. Multi-professional care should be facilitated through tailored supporting tools. Both hospital-unit and FU Directors suggest developing shared pathways between organisations/professionals (82% and 80% respectively) and digital information sharing (61% and 80% respectively). Hospital and community-based professionals have similar perceptions about the concerns and challenges to EOLC provision in the region, but community-based professionals are more sensitive to the importance of improving communication on PC to the public and early discussing EOLC with caregivers. This finding suggests the need of enhancing hospital personnel's awareness about these issues. Professional training and the capacity to assess patients' needs and preferences should be improved. The identified needs can inform future research and interventions to improve the quality and outcomes of EOLC for cancer patients.

Roles of pediatric surgeons in palliative pediatric oncology.

Pediatric surgeons engaged in oncology will inevitably treat patients receiving palliative care, but their role in this context is poorly described. This article identifies some of the challenges and opportunities of surgical involvement in pediatric oncology palliative care, underscoring how the surgeon's expertise can be exploited to significantly benefit children with cancer. Specific examples of skills (procedural, communication, and coordination) that surgeons can provide to the multidisciplinary palliative care teams are described and the importance of collaboration is highlighted.

Differences in service utilization between pediatric and adult palliative care services in a single center.

OBJECTIVES: Current recommendations do not separate adult and pediatric palliative care (PC) in terms of the personnel needed, or the distribution of care between community and hospital-based services. We evaluated the differences in the utilization of pediatric and adult hospital PC services for non-oncological patients. METHODS: Retrospective study. Parameters included demographics, underlying diagnoses, number of consultations per patient, duration of PC involvement, and follow-up. All non-oncology patients seen by the adult or pediatric PC teams between June 2021 and July 2023 at a single tertiary hospital. RESULTS: A total of 445 adults and 48 children were seen by the adult and pediatric palliative teams, respectively. Adults were primarily seen in the terminal stages of common chronic diseases, with a high mortality rate. Children were mainly seen at a very young age with rare and complicated diseases. Children needed longer duration of follow-up (114 vs. 5 days, p < 0.001), more consultations (8.5 vs. 4, p < 0.001), and died less while hospitalized (25% of patients vs. 61.6%, p < 0.001). SIGNIFICANCE OF RESULTS: Adult patients had relatively common diseases, seen and treated often by primary care practitioners, whereas children had rare life-limiting diseases, which primary care pediatricians may have limited experience with, and which require involvement of multiple specialized hospital-based services. Future healthcare PC planning should consider these factors in planning the primary setting for PC teams, specifically more training of adult general practitioners in PC skills, and earlier referral of pediatric patients to hospital-based PC.

Caring for Hindu patients at the end-of-life: A narrative review.

OBJECTIVES: This paper reviews the existing literature to identify specific challenges that may arise in the context of providing palliative and end-of-life (EOL) care for Hindu patients in the physical, psychological, and spiritual domains. We offer practical strategies where appropriate to mitigate some of these challenges. We review how the Hindu faith impacts EOL decision-making, including the role of the family in decision-making, completion of advance directives, pain management, and decisions around artificial nutrition and hydration (ANH) and cardiopulmonary resuscitation (CPR). METHODS: The PubMed, MEDLINE Complete, Cochrane, and Embase databases were searched for articles using the search strings combinations of keywords such as Palliative care, Hindu, Hinduism, End of Life Care, India, Spirituality, and South Asian. Once inclusion criteria were applied, 40 manuscripts were eligible for review. RESULTS: Our results are organized into the following 4 sections - how Hindu religious or spiritual beliefs intersect with the physical, psychological, and spiritual domains: and decision-making at the EOL. SIGNIFICANCE OF RESULTS: Hindu beliefs, in particular the role of karma, were shown to impact decision-making regarding pain management, ANH and CPR, and advance directive completion. The complexity of Hindu thought leaves a significant role for interpretation and flexibility for individual factors in decision-making at the EOL.

"Hospice Care Could Be a Compassionate Choice": ChatGPT Responses to Questions About Decision Making in Advanced Cancer.

Background: Patients with cancer use the internet to inform medical decision making. Objective: To examine the content of ChatGPT responses to a hypothetical patient question about decision making in advanced cancer. Design: We developed a medical advice-seeking vignette in English about a patient with metastatic melanoma. When inputting this vignette, we varied five characteristics (patient age, race, ethnicity, insurance status, and preexisting recommendation of hospice/the opinion of an adult daughter regarding the recommendation). ChatGPT responses (N = 96) were coded for mentions of: hospice care, palliative care, financial implications of treatment, second opinions, clinical trials, discussing the decision with loved ones, and discussing the decision with care providers. We conducted additional analyses to understand how ChatGPT described hospice and referenced the adult daughter. Data were analyzed using descriptive statistics and chi-square analysis. Results: Responses more frequently mentioned clinical trials for vignettes describing 45-year-old patients compared with 65- and 85-year-old patients. When vignettes mentioned a preexisting recommendation for hospice, responses more frequently mentioned seeking a second opinion and hospice care. ChatGPT's descriptions of hospice focused primarily on its ability to provide comfort and support. When vignettes referenced the daughter's opinion on the hospice recommendation, approximately one third of responses also referenced this, stating the importance of talking to her about treatment preferences and values. Conclusion: ChatGPT responses to questions about advanced cancer decision making can be heterogeneous based on demographic and clinical characteristics. Findings underscore the possible impact of this heterogeneity on treatment decision making in patients with cancer.

How to engage people experiencing severe and persistent mental illness in qualitative research: a descriptive and reflexive analysis.

PURPOSE: People experiencing severe and persistent mental illness (SPMI) constitute a vulnerable population within the healthcare system and society. Similarly in research, there are perceived challenges in qualitative studies with this population due to several factors, including (self-)stigma, assessment of decision-making capacity, reduced communication skills and the (perceived) risk of adverse events, resulting in its scarcity. METHODS: In this contribution, the authors share their practical experiences of conducting qualitative research among this group of people, specifically addressing sensitive topics such as ongoing intensive care within a mental health facility and end-of-life care. Both advantageous and challenging factors that were encountered during different research phases -the preliminary phase, conducting the interviews and the concluding phase are systematically outlined. RESULTS: The findings highlight conscientious conducted in accordance with established standards, albeit with a deliberate embrace of non-conventional approaches while advocating an attitude of critical, ethical reflection. Adequate preparation, fostering creative approaches and adaptable communication to establish rapport and authentic interaction, thorough follow-up and support for all involved are equally crucial to sustain effective qualitative research. CONCLUSION: Engaging people experiencing SPMI in research is as a cornerstone for empowerment-a feasible aspiration. Their inclusion in research endeavours is imperative, because first-hand narratives are key in shaping comprehensive and compassionate care practices for those experiencing severe and persistent mental illness.

Development and Feasibility Evaluation of a Family-Centred Neonatal End-of-Life Care Protocol.

AIM: To develop a family-centred end-of-life care protocol and evaluate its feasibility. DESIGN: The draft protocol was created by integrating literature review results and existing protocols and interviewing bereaved parents. A Delphi study and an experts' review were conducted to refine the draft, followed by feasibility testing with neonatal intensive care unit nurses. RESULTS: A 71-item protocol based on an integrated end-of-life care model and the family-centred care concept was developed, comprising three sections: principal guidelines, communication during end-of-life care and five substeps (4, 17 and 71 items, respectively) according to changes in an infant's condition. The feasibility was confirmed by an increase in competency and a positive attitude towards infant end-of-life care participants who completed the protocol education. CONCLUSION: The protocol was feasible and improved nurses' competency and attitude in providing end-of-life care for infants and parents requiring support due to the loss of their infants. It can positively impact the well-being of parents who have experienced the loss of their infants in neonatal intensive care units and enhance family-centred care within the units. IMPLICATIONS FOR THE PROFESSION AND/OR PATIENT CARE: Application of the family-cantered end-of-life care could support infants' dying process and improve bereaved parents' quality of life in neonatal intensive care units. IMPACT: This study increased neonatal end-of-life nursing needs' awareness among nurses and parents during bereavement. It offered preliminary evidence regarding the feasibility of a neonatal end-of-life care protocol developed in this study. REPORTING METHOD: AGREE Reporting Checklist 2016. PATIENT OR PUBLIC CONTRIBUTION: We interviewed bereaved parents to develop the draft protocol and involved neonatal care experts for the Delphi study and neonatal nurses (who would use the protocol) as feasibility test subjects. TRIAL REGISTRATION: This was a doctoral dissertation and did not require protocol registration as the feasibility test involved a single neonatal intensive care unit.

Emergency department discharges directly to hospice: Longitudinal assessment of a streamlined referral program.

INTRODUCTION: 80 % of Americans wish to die somewhere other than a hospital, and hospice is an essential resource for providing such care. The emergency department (ED) is an important location for identifying patients with end-of-life care needs and providing access to hospice. The objective of this study was to analyze a quality improvement (QI) program designed to increase the number of patients referred directly to hospice from the ED, without the need for an observation stay and without access to in-hospital hospice. METHODS: We implemented a QI program in September 2021 consisting of three components: (1) clarification and streamlining of referral workflows, (2) staff/provider education on hospice and workflows, and (3) electronic medical record (EMR) tools to facilitate hospice transitions. The primary outcome was the change in monthly ED-to-hospice cases pre- and post-implementation. We also calculated the monthly incidence rate of ED-to-hospice transfers. The secondary outcome was ED length of stay (LOS). RESULTS: 202 patients completed ED-to-hospice transfers from January 1, 2019 to February 29, 2024. 98 patients transitioned from the ED to hospice before QI implementation, and 104 patients transitioned after implementation. We observed a slight but insignificant increase in the mean monthly ED-to-hospice cases from 3.16 patients per month pre-implementation to 3.47 patients per month post-implementation (P = 0.46). We found no significant difference in the monthly incidence rate of ED-to-hospice cases before and after implementation (P = 0.78). ED LOS was unaffected (P = 0.21). CONCLUSION: In this largest study to date on direct ED-to-hospice discharges, a QI program focused on workflow optimization, education, and EMR modification was insufficient to significantly impact ED-to-hospice discharges. Future efforts to increase hospice transitions from the ED should investigate methods to improve patient identification, the impact of in-hospital hospice programs, and coordination with hospital and community teams to support home-based care for those desiring to remain there.

Palliative and End of Life Care: An Important Component of Supportive Oncology.

Palliative care, an integral component of supportive oncology, enhances the quality of life for patients living with cancer. Whilst palliative care has historically been synonymous with the provision of care at the end of life, it is increasingly playing a role earlier in a patient's cancer journey; frequently in conjunction with administration of anticancer treatment. Although early integration has been shown to improve patient outcomes, service development remains in its infancy and consideration of challenges bears relevance. Addressing issues pertaining to resource allocation in addition to adequate training of staff will aid to ensure the provision of care that aligns with the goals and priorities of patients. This review presents the role of early palliative care within the realm of supportive oncology with respect to the evidence of benefit and ethical, clinical and practical considerations. Relevant papers have been chosen for inclusion on the basis of clinical relevance, timeliness and relevance to cancer patients and clinical teams involved in their care.

Re-living trauma near death: an integrative review using Grounded Theory narrative analysis.

Background: Symptoms of emotional and physical stress near death may be related to previous experiences of trauma. Objective: To investigate current evidence regarding the following: (1) Is previous trauma identified in people who are dying, and if so, how? (2) How is previous trauma associated with the experience of death/dying in people with or without cognitive impairment? and (3) What palliative care interventions are available to people with previous trauma at the end of life? Design: This integrative review was conducted per Whittemore and Knafl's guidelines, which involves a stepped approach, specifically (1) problem identification, (2) literature search, (3) data evaluation, (4) data analysis and (5) presentation. Methods: This integrative review was reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines. Electronic databases were searched in August 2021 and updated in August 2023. The articles were quality appraised, and narrative data were analysed using Grounded Theory (GT). Results: Of 1310 studies screened, 11 met the inclusion criteria (four qualitative and seven quantitative) conducted in Australia, Canada, Japan and the United States; and American studies accounted for 7/11 studies. Eight were focused on war veterans. Descriptive studies accounted for the majority, with only two publications testing interventions. Re-living trauma near death has additional features to a diagnosis of post-traumatic stress disorder alone, such as physical symptoms of uncontrolled, unexplained acute pain and this distress was reported in the last weeks of life. Conclusion: This study proposes that re-living trauma near death is a recognisable phenomenon with physical and psychological impacts that can be ameliorated with improved clinical knowledge and appropriate management as a new GT. Further research is needed to enable past trauma identification at the end of life, and trauma-informed safe interventions at the end of life are an urgent need.

Adopting a 'community of practice' between palliative and dementia care nurses.

Dementia usually occurs as a result of brain disease and, while it is usually chronic or progressive in nature, it has not traditionally been conceptualised as a terminal or life-limiting syndrome. However, the median survival time for people with dementia is between 3.5 years and 4.5 years from symptom onset to death, although this varies depending at which stage the dementia is diagnosed and its cause. As such, it has long been recognised that people with dementia and their family carers have palliative care needs equal to those of patients with cancer. However, a palliative approach to dementia care requires both the dementia and palliative care workforces to fully understand the needs of people with dementia and their families towards the end of life. This article describes the development of a 'community of practice' where healthcare professionals from dementia and palliative care services shared their practice and learned from each other in a safe and supportive environment.

End-of-Life Costs in Cancer Patients: A Systematic Review.

OBJECTIVES: Identify the costs of an oncology patient at the end of life. METHODS: A systematic literature review was conducted by screening Embase, PubMed and Lilacs databases, including all studies evaluating end-of-life care costs for cancer patients up to March 2024. The review writing followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. The quality of the included studies was assessed using the Drummond checklist. The protocol is available at PROSPERO CRD42023403186. RESULTS: A total of 733 studies were retrieved, and 43 were considered eligible. Among the studies analyzed, 41,86% included all types of neoplasms, 18.60% of lung neoplasm, All articles performed direct cost analysis, and 9.30% also performed indirect cost analysis. No study evaluated intangible costs, and most presented the macrocosting methodology from the payer's perspective. The articles included in this review presented significant heterogeneity related to populations, diagnoses, periods considered for evaluation of end-of-life care, and cost analyses. Most of the studies were from a payer perspective (74,41%) and based on macrocosting methodologies (81,39%), which limit the use of the information to evaluate variabilities in the consumption of resources. CONCLUSIONS: Considering the complexity of end-of-life care and the need for consistent data on costs in this period, new studies, mainly in low- and middle-income countries with approaches to indirect and intangible costs, with a societal perspective, are important for public policies of health in accordance with the trend of transforming value-based care, allowing the health care system to create more value for patients and their families.

Exploring the interplay of clinical, ethical and societal dynamics: two decades of Medical Assistance in Dying (MAID) on psychiatric grounds in the Netherlands and Belgium.

This paper explores recently emerging challenges in Medical Assistance in Dying on Psychiatric Grounds (MAID-PG), focusing on ethical, clinical, and societal perspectives. Two themes are explored. First, the growing number of young MAID-PG requestors and the public platform given to MAID-PG requests. Ethically, media portrayal, particularly of young patients' testimonials, requires scrutiny for oversimplification, acknowledging the potential for a Werther effect alongside the absence of a Papageno effect. This highlights the need for better communication policies for media purposes. Second, cautionary considerations regarding psychiatric care adequacy are addressed. In MAID-PG this includes reasons underlying psychiatrist reluctance to engage in MAID-PG trajectories, leading to growing waiting lists at end-of-life-care centers. Addressing current shortages in psychiatric care adequacy is crucial, necessitating less narrow focus on short-term care trajectories and recovery beside transdiagnostic treatment approaches, expanded palliative care strategies, and integrated MAID-PG care.

"Death Bouncers" and "Spiritual Guides": How End-of-Life Doulas Provide, Frame, and Navigate Spirituality and Spiritual Care.

The medicalization of death has left gaps in the spiritual and psychosocial well-being of the dying. Factors like professional and caregiver burnout, lack of training, overburdened caseloads and rigid schedules, and other organizational constraints lead to holistic, humane care falling through the cracks. Consequently, the dying and their families are opting to rely on individuals who can bridge these gaps-end-of-life (EOL) doulas. EOL doulas employ a variety of non-medical practices from touch therapies to legacy projects to religious rites that provide support covering the emotional, spiritual, and practical aspects of dying. Utilizing qualitative interviews with 23 EOL doulas located and working in the United States, this research offers insights into doulas' provisions of spiritual care, how death doulas' understanding of the death transition inform spiritual care provisions, as well as how death doulas navigate differences in spiritual and religious belief systems between themselves and their clients. The study emphasizes the critical role of EOL doulas in bridging gaps in end-of-life care, providing personalized, compassionate support sometimes missing in institutional settings.

Feasibility and acceptability of the ShareD dEciSIon making for patients with kidney failuRE to improve end-of-life care intervention: A pilot multicentre randomised controlled trial.

Background: Kidney failure is associated with a high disease burden and high mortality rates. National and international guidelines recommend health professionals involve patients with kidney failure in making decisions about end-of-life care, but implementation of these conversations within kidney services varies. We developed the DESIRE (ShareD dEciSIon-making for patients with kidney failuRE to improve end-of-life care) intervention from our studies investigating multiple decision maker needs and experiences of end-of-life care in kidney services. The DESIRE intervention's three components are a training programme for health professionals, a patient decision aid, and a kidney service consultation held to facilitate shared decision-making conversations about planning end-of-life care. Objectives: To assess the feasibility and acceptability of integrating the DESIRE intervention within kidney services. Design: A pilot study using a multicentre randomised controlled design. Setting: Four Danish nephrology departments. Participants: Patients with kidney failure who were 75 years of age or above, their relatives, and health professionals. Methods: Patients were randomised to either the intervention or usual care. Feasibility data regarding delivering the intervention, the trial design, and outcome measures were collected through questionnaires and audio recordings at four points in time: before, during, post, and 3 months after the intervention. Acceptability data were collected through semi-structured interviews with patients and relatives, as well as a focus group with health professionals post the intervention. Results: Twenty-seven patients out of the 32 planned were randomised either to the intervention (n= 14) or usual care (n= 13). In addition, four relatives and 12 health professionals participated. Follow-up was completed by 81 % (n= 22) of patient participants. We found that both feasibility and acceptability data suggested health professionals improved their decision support and shared decision-making skills via the training. Patient and relative participants experienced the intervention as supporting a shared decision-making process; from audio recordings, we showed health professionals were able to support proactively decision-making about end-of-life care within these consultations. All stakeholders perceived the intervention to be effective in promoting shared decision-making and relevant for supporting end-of-life care planning. Conclusions: Participant feedback indicated that the DESIRE intervention can be integrated into practice to support patients, relatives, and health professionals in planning end-of-life care alongside the management of worsening kidney failure. Minimising exhaustion and enhancing engagement with the intervention should be a focus for subsequent refinement of the intervention. Registration: The study has been registered at ClinicalTrials.gov with the identifier: NCT05842772. Date of first recruitment: March 20, 2023.

Cultural tailoring advance care planning for an American Indian community: make your wishes about you.

BACKGROUND: Advance care planning empowers people by allowing them some control over certain healthcare decisions in the event they are unable. Yet, advance care planning rates in the American Indian and Alaska Native populations are low. Thus, we culturally tailored the Make Your Wishes About You (MY WAY), an intervention to improve advance care planning access and completion for American Indian peoples. METHODS: In partnership with an American Indian Tribe, the project took a community-based participatory orientation and relied on a Community Advisory Board and a Professional Advisory Board. The culturally tailoring was a 15-step process. These steps allowed us to ensure that the tailoring reflects community-specific norms and preferences, greater reliance on visual images and local idioms of expression, more appropriate attention to family roles, and inclusion of spiritual elements. RESULTS: A four-phase cultural tailoring framework emerged with each phase centering around listening, learning, and analyzing with tailoring occurring between each phase. A culturally tailored MY WAY was created, which was delivered in a manner that reflected Tribal citizenss' preferences. Materials included Tribal language, local idioms of expression, attention to family roles, and appropriate inclusion of spiritual elements. The materials were rated high on a content validity index by the advisory board members. CONCLUSION: There is a growing interest in tailoring existing evidence-based programs with relatively little in the literature offering guidance. By sharing our efforts and experiences in culturally tailoring an advance care planning program for an American Indian Tribe, we hope that it will serve useful for future efforts in ensuring that evidence-based programming reaches those in greatest need. While this project was rooted in the core Indigenous values of community, ceremony or spirituality, language, and place it also lends itself to broader translation across different populations.