Developing an Evidence-Based Patient Education Guide on Pain Management for Asian Patients on Hospice.

Asian Americans are the fastest-growing racial group in the United States. This article describes the development of a pain management assessment guide for Asian patients on hospice, their families, and their nurses. Thematic analysis was used to evaluate the applicability of research on pain, pain management, and barriers to pain management from primarily Asian countries to Asian patients on hospice in the United States. Thematic analysis of interviews with such patients concurs with research findings. Four themes emerged: enduring pain, preference for Chinese medicine remedies, fear of addiction, and concern about the side effects of pain medications. Interviews with experienced hospice nurses also aligned with these themes. Hospice nurses were asked to share their strategies for assessing and managing pain among their Asian hospice patients. Thematic analysis of their interviews revealed six strategies: focusing on treatment goals, involving family and caregivers, explaining the physiology of pain, explaining the progression of pain medications, addressing concerns about addiction, and managing the side effects of medications. The themes that emerged from patient and hospice nurse interviews were used to develop an evidence-based pain management assessment guide to support Asian patients on hospice, their family, and the nurses who care for them.

A Hospice Transitions Program for Patients in the Emergency Department.

Importance: Patients often visit the emergency department (ED) near the end of life. Their common disposition is inpatient hospital admission, which can result in a delayed transition to hospice care and, ultimately, an inpatient hospital death that may be misaligned with their goals of care. Objective: To assess the association of hospice use with a novel multidisciplinary hospice program to rapidly identify and enroll eligible patients presenting to the ED near end of life. Design, Setting, and Participants: This pre-post quality improvement study of a novel, multifaceted care transitions program involving a formalized pathway with email alerts, clinician training, hospice vendor expansion, metric creation, and data tracking was conducted at a large, urban tertiary care academic medical center affiliated with a comprehensive cancer center among adult patients presenting to the ED near the end of life. The control period before program launch was from September 1, 2018, to January 31, 2020, and the intervention period after program launch was from August 1, 2021, to December 31, 2022. Main Outcome and Measures: The primary outcome was a transition to hospice without hospital admission and/or hospice admission within 96 hours of the ED visit. Secondary outcomes included length of stay and in-hospital mortality. Results: This study included 270 patients (median age, 74.0 years [IQR, 62.0-85.0 years]; 133 of 270 women [49.3%]) in the control period, and 388 patients (median age, 73.0 years [IQR, 60.0-84.0 years]; 208 of 388 women [53.6%]) in the intervention period, identified as eligible for hospice transition within 96 hours of ED arrival. In the control period, 61 patients (22.6%) achieved the primary outcome compared with 210 patients (54.1%) in the intervention period (P < .001). The intervention was associated with the primary outcome after adjustment for age, race and ethnicity, primary payer, Charlson Comorbidity Index, and presence of a Medical Order for Life-Sustaining Treatment (MOLST) (adjusted odds ratio, 5.02; 95% CI, 3.17-7.94). In addition, the presence of a MOLST was independently associated with hospice transition across all groups (adjusted odds ratio, 1.88; 95% CI, 1.18-2.99). There was no significant difference between the control and intervention periods in inpatient length of stay (median, 2.0 days [IQR, 1.1-3.0 days] vs 1.9 days [IQR, 1.1-3.0 days]; P = .84), but in-hospital mortality was lower in the intervention period (48.5% [188 of 388] vs 64.4% [174 of 270]; P < .001). Conclusions and Relevance: In this quality improvement study, a multidisciplinary program to facilitate ED patient transitions was associated with hospice use. Further investigation is needed to examine the generalizability and sustainability of the program.

Forecasting the need for palliative and hospice care using the creeping trend method with segment smoothing.

OBJECTIVE: Aim: To determine the limits of refinement of the forecast of the need for palliative and hospice care (PHC) among adults and children, made by the methods of linear, logarithmic and exponential trends, using the improved forecasting method. PATIENTS AND METHODS: Materials and Methods: Based on the calculated demand for 2018-2020, a demand forecast was made using the linear trend method for 2021 and 2022, which was verified by comparing it with the calculation based on available statistical data for 2022. To improve the forecasting result, the creeping trend method with a smoothing segment was used. RESULTS: Results: The estimated need for PHC by the linear trend method for 2022 was 87,254 adults and 46,122 children. The predicted need for this year by the linear trend method was 172,303 for adults and 45,517 for children. The prediction using the sliding trend method with segment smoothing was found to be 4.7 times more accurate and reliable for adults and all age groups combined, but was less accurate and not reliable for children. It was found out that in order to achieve a reliable forecast, it is necessary to clarify the data of medical statistics regarding of malignant neoplasms and congenital malformations, as well as demographic statistics. CONCLUSION: Conclusions: The method of a creeping trend gave more accurate results and made it possible to determine the reliability of the forecast, allowed to take into account the simultaneous influence of various input parameters.

Influencing factors of home hospice care needs of the older adults with chronic diseases at the end of life in China: a cross-sectional study.

Introduction: Chronic diseases are becoming a serious threat to the physical and mental health of older people in China as their aging process picks up speed. Home hospice care addresses diverse needs and enhances the quality of life for older adult individuals nearing the end of life. To ensure the well-being of chronically ill older adults at the end of life, it is vital to explore and assess the multidimensional hospice needs of terminally ill older individuals in their homes. The aim of this study was to investigate the current situation of home hospice care needs of Chinese older adults with chronic diseases at the end of life, and to analyze the influencing factors (sociodemographic and disease-related factors). Methods: In this cross-sectional study, 247 older adult people with chronic diseases at the end of life were selected from the communities of 4 community health service centers in Jinzhou City, Liaoning Province from June to October 2023 by random sampling method. A general information questionnaire and the home hospice care needs questionnaire developed by our research group were used to investigate. Independent samples t-test or one-way ANOVA was used to compare the differences in the scores of different characteristics, and the factors with significant differences were selected for multivariate linear regression analysis to determine the final influencing factors. Results: The total score of home hospice needs of the dying older adult was 115.70 ± 12, with the mean scores for each dimension in descending order being Information Needs (3.96 ± 0.61), Social Support Needs (3.96 ± 0.44), Spiritual Needs (3.92 ± 0.43), Physical Needs (3.60 ± 0.59), Psychological Needs (3.37 ± 0.65). Status of residence, duration of illness (year), the type of disease, and self-care ability were influential factors in the total score of home hospice needs. Discussion: The need for hospice care for the terminally ill older adult is high, and healthcare professionals should implement services according to the influencing factors of need to meet their multidimensional needs and improve their quality of life.

Pediatric Palliative Care of a Transgender Adolescent.

A 15-year-old patient with metastatic synovial sarcoma conveyed to his palliative care physician that his dying wish was to start gender-affirming hormone therapy. His medical team was able to identify resources to support both him and his family as they navigated the immense difficulty of a cancer diagnosis and began to understand their child's gender identity. Literature on the care of gender diverse pediatric patients with terminal illness is minimal, but applications from adult literature, and research on supporting gender diverse adolescents more broadly, provided guidance for palliative care, oncology, and gender-affirming care teams. We believe that honoring and supporting the gender identity of adolescents with terminal illness is an essential aspect of end-of-life care. This case report outlines challenges faced by multidisciplinary pediatric team members who provided gender-affirming care for a minor under hospice care and amplifies the need for future research and guidelines pertinent to this patient population.

Pilot Testing Educational Videos for Black Caregivers Receiving Home Hospice Care.

Black caregivers face distinct challenges in symptom management when providing end-of-life care. Educational interventions may improve caregiver preparedness and competency by providing information on symptom management. This study pilot tested 4 culturally tailored caregiver educational videos about symptom management for Black caregivers receiving home hospice care at a large, urban, nonprofit hospice organization to determine feasibility and acceptability, along with their potential impact on caregiver outcomes. All participants (N = 10) agreed to watch the 4 videos and found the videos to be helpful; 90% (n = 9) shared that they would recommend them to other Black caregivers receiving home hospice care. Total preparedness scores increased from a mean score of 23.5 preintervention to 28.3 postintervention. Caregiver competency scores increased from 13.8 at preintervention to 14.3 at postintervention. Caregivers' comfort and knowledge scores increased from preintervention to postintervention for all 7 end-of-life topics presented in the 4 videos. This study found that it was feasible and acceptable to show Black caregivers culturally tailored educational videos related to issues regarding symptom management. Many found the videos to be helpful and the topics to be relatable. There were trends toward improvement in preparedness and competency. Future studies examining efficacy are needed to determine the impact of this intervention.

An exploration of the emotional impact of working in an adult hospice service for Irish healthcare professionals.

PURPOSE: An ageing population and a global pandemic has placed greater demands on palliative care services. Numerous studies describe the patient experience in palliative care, however, few explore the healthcare professional's experience of caring in this setting. This study explored the emotional challenges faced by palliative care professionals working in adult hospice services in Ireland. DESIGN/METHODOLOGY/APPROACH: A narrative phenomenological approach was adopted, using interpretative phenomenological analysis to analyse results from five participants' semi-structured interviews. FINDINGS: The type of challenge experienced reflected the impact it had on the participant's emotional wellbeing. Challenges perceived as achievable contributed to high levels of emotional wellbeing. These challenges often offered the opportunity for skill development and elicited positive feelings. Challenges perceived as uncontrollable negatively impacted the professional's emotional wellbeing and increased their risk of burnout. Examples of this included the shift in service provision and professional expectations. The challenges palliative care professionals experience on a daily basis can negatively or positively impact their emotional wellbeing. CONCLUSION: Overall, this study highlighted challenges and their impacts experienced by palliative care professionals, illustrating key areas for improvement to prioritise staff wellbeing.

Therapeutic Effect of Music Therapy on Patients with End-stage Cancer: A Retrospective Study.

OBJECTIVE: The aim of this study was to retrospectively analyze the effect of music therapy on patients with end-stage cancer in hospice care. METHODS: This retrospective cohort study included 195 patients with end-stage cancer from January 2021 to December 2023. The conventional group comprised patients who received routine hospice care, whereas the combination group comprised those who received routine hospice care and music therapy. The immune indicators, anxiety and depression scores, quality of life scores, and sleep quality scores of both groups were compared before and after management. RESULTS: Before management, no significant differences were observed in the immune indicators, anxiety and depression scores, quality of life scores, and sleep quality scores between both groups (P > 0.05). However, after management, the immune indicators lymphocytes CD3+ and CD4+ were significantly higher in the combination group than in the conventional group (P < 0.05); in contrast, anxiety and depression and the Pittsburgh Sleep Quality Index scores were lower in the combination group than in the conventional group (P < 0.05). Lastly, the World Health Organization Quality of Life Brief Version scores were significantly higher in all domains in the combination group than in those in the conventional group; furthermore, the degree of decline in the physical, psychological, and social relationship domain scores was smaller in the combination group than in the conventional group (P < 0.05). CONCLUSION: For patients with end-stage cancer, music therapy can improve their immune status, quality of life, and sleep and ameliorate their anxiety and depression.

Development, validation and reliability testing of the hospice care environment scale.

BACKGROUND: WHO stated the environment is an important factor affecting the development of hospice care. The environment is the sum of factors affecting behavior besides the individual factors. Currently, a scale to comprehensively assess the hospice environment of nurse is still lacking. This study aimed to develop an instrument to investigate the environmental factors affecting hospice care of nurses. METHODS: Literature review and a semi-structured interview were conducted to form the items pool of the Hospice Care Environment Scale. Two rounds of Delphi expert consultation were conducted by 16 experts to revise the scale dimensions and entries to form the Hospice Care Environment Scale. A psychometric evaluation was then performed among 530 oncology nurses in a large tertiary oncology hospital in Hubei Province. The 500 valid questionnaires were randomly divided into two groups in a 1:1 ratio, sample 1 (n1 = 250) for item screening and sample 2 (n2 = 250) for quality evaluation of the resulting scale. Item analysis, reliability analysis, validity analysis and acceptability analysis were performed. RESULT: The Hospice Care Environment Scale consists of two dimensions and 13 entries. The Cronbach's α coefficient of the Hospice Care Environment Scale was 0.970, and the Cronbach's α coefficient of the two dimensions were 0.952 and 0.969, respectively, with the Item-content validity index and average Scale- content validity index of the scale was both 1.000. The validation factor analysis showed the standardized path coefficients of each item were basically above 0.5, and the factor structure model was stable and suitable. The average completion time of the scale was about 3 min, which had good feasibility. CONCLUSION: The Hospice Care Environment Scale to assess the environment of hospice care services, has good content and construct validity and reliability. This scale can provide guidance to evaluate the hospice care environment.

Time estimates in prognostic discussions: A conversation analytic study of hospice multidisciplinary team meetings.

BACKGROUND: Recommendations state that multidisciplinary team expertise should be utilised for more accurate survival predictions. How the multidisciplinary team discusses prognoses during meetings and how they reference time, is yet to be explored. AIM: To explore how temporality is conveyed in relation to patients' prognoses during hospice multidisciplinary team meetings. DESIGN: Video-recordings of 24 hospice multidisciplinary team meetings were transcribed and analysed using Conversation Analysis. SETTING/PARTICIPANTS: A total of 65 staff participating in multidisciplinary team meetings in a UK hospice from May to December 2021. RESULTS: Team members conveyed temporality in three different ways. (i) Staff stated that a patient was dying as part of the patient's current health status. These formulations did not include a time reference per se but described the patient's current situation (as dying) instead. (ii) Staff used specific time period references where another specific reference had been provided previously that somehow constrained the timeframe. In these cases, the prognosis would conflict with other proposed care plans. (iii) Staff members used unspecific time period references where the reference appeared vague and there was greater uncertainty about when the patient was expected to die. CONCLUSIONS: Unspecific time period references are sufficient for achieving meaningful prognostic talk in multidisciplinary teams. In-depth discussion and accurate prediction of patient prognoses are not deemed a priority nor a necessity of these meetings. Providing precise predictions may be too difficult due to uncertainty and accountability. The lack of staff pursuing more specific time references implies shared knowledge between staff and a context-specific use of prognostic estimates.

Accessibility, Relevance, and Impact of a Symptom Monitoring Tool for Home Hospice Care: Theory Elaboration and Qualitative Assessment.

BACKGROUND: Early users found Engagement and Visualization to Improve Symptoms in Oncology Care (ENVISION), a web-based application designed to improve home management of hospice patients' symptoms and support patients' and family caregivers' well-being, to be generally useful and easy to use. However, they also raised concerns about potential challenges users with limited technological proficiency might experience. OBJECTIVE: We sought to concurrently accomplish two interrelated study aims: (1) to develop a conceptual framework of digital inclusivity for health information systems and (2) to apply the framework in evaluating the digital inclusivity of the ENVISION application. METHODS: We engaged ENVISION users (N=34) in a qualitative study in which data were collected via direct observation, think-aloud techniques, and responses to open-ended queries. Data were analyzed via theory elaboration and basic qualitative description. RESULTS: Accessibility, relevance, and impact were identified as 3 essential considerations in evaluating a health system's digital inclusivity. Study findings generally supported ENVISION's digital inclusivity, particularly concerning its perceived relevance to the work of family caregivers and hospice clinicians and its potentially positive impact on symptom management and quality of life. Limitations to ENVISION's digital inclusivity centered around issues of accessibility, particularly operability among individuals with limited technological knowledge and skills. CONCLUSIONS: The Accessibility, Relevance, and Impact conceptual framework of digital inclusivity for health information systems can help identify opportunities to strengthen the digital inclusivity of tools, such as ENVISION, intended for use by a broad and diverse range of users.

Hospice Readmission, Hospitalization, and Hospital Death Among Patients Discharged Alive from Hospice.

Importance: Transitions in care settings following live discharge from hospice care are burdensome for patients and families. Factors contributing to risk of burdensome transitions following hospice discharge are understudied. Objective: To identify factors associated with 2 burdensome transitions following hospice live discharge, as defined by the Centers for Medicare & Medicaid Services. Design, Setting, and Participants: This population-based retrospective cohort study included a 20% random sample of Medicare fee-for-service beneficiaries using 2014 to 2019 Medicare claims data. Data were analyzed from April 22, 2023, to March 4, 2024. Exposure: Live hospice discharge. Main Outcomes and Measures: Multivariable logistic regression examined associations among patient, health care provision, and organizational characteristics with 2 burdensome transitions after live hospice discharge (outcomes): type 1, hospice discharge, hospitalization within 2 days, and hospice readmission within 2 days; and type 2, hospice discharge, hospitalization within 2 days, and hospital death. Results: This study included 115 072 Medicare beneficiaries discharged alive from hospice (mean [SD] age, 84.4 [6.6] years; 71892 [62.5%] female; 5462 [4.8%] Hispanic, 9822 [8.5%] non-Hispanic Black, and 96 115 [83.5%] non-Hispanic White). Overall, 10 381 individuals (9.0%) experienced a type 1 burdensome transition and 3144 individuals (2.7%) experienced a type 2 burdensome transition. In adjusted models, factors associated with higher odds of burdensome transitions included identifying as non-Hispanic Black (type 1: adjusted odds ratio [aOR], 1.47; 95% CI, 1.36-1.58; type 2: aOR, 1.70; 95% CI, 1.51-1.90), hospice stays of 7 days or fewer (type 1: aOR, 1.13; 95% CI, 1.06-1.21; type 2: aOR, 1.71; 95% CI, 1.53-1.90), and care from a for-profit hospice (type 1: aOR, 1.78; 95% CI, 1.62-1.96; type 2: aOR, 1.32; 95% CI, 1.15-1.52). Nursing home residence (type 1: aOR, 0.66; 95% CI, 0.61-0.72; type 2: aOR, 0.47; 95% CI, 0.40-0.54) and hospice stays of 180 days or longer (type 1: aOR, 0.63; 95% CI, 0.59-0.68; type 2: aOR, 0.60; 95% CI, 0.52-0.69) were associated with lower odds of burdensome transitions. Conclusion and Relevance: This retrospective cohort study of burdensome transitions following live hospice discharge found that non-Hispanic Black race, short hospice stays, and care from for-profit hospices were associated with higher odds of experiencing a burdensome transition. These findings suggest that changes to clinical practice and policy may reduce the risk of burdensome transitions, such as hospice discharge planning that is incentivized, systematically applied, and tailored to needs of patients at greater risk for burdensome transitions.

Influencing factors of home hospice care needs of family caregivers of the older adult with chronic diseases at the end of life in China: a cross-sectional study.

Introduction: With increased life expectancy in the Chinese population coupled with chronic disease the care needs of people at the end of life are attracting much attention. Home hospice care can help the dying older adult achieve comfort and maintain their dignity at home. However, dying at home means great responsibility and challenge for family caregivers, and there are many unmet needs. The study aimed to investigate the home hospice care needs of family caregivers of older adult people with chronic diseases at the end of life in China, and to analyze the influencing factors of home hospice care needs of caregivers. Methods: In this cross-sectional study, from May to September 2023, 4 community health service centers were selected by stratified sampling from seven administrative districts in Jinzhou City, Liaoning Province, where home hospice care was piloted. Then 224 family caregivers were selected from the communities of seven community service centers by simple random sampling method. A general information questionnaire and the home hospice care needs questionnaire developed by our research group were used to investigate. Univariate analysis was used to compare the differences in the scores of different characteristics, and the factors with significant differences were selected for multivariate linear regression analysis to determine the final influencing factors. Results: The total score of hospice care needs of family caregivers was 121.61 ± 15.24, among which the end-of-life knowledge need dimension score was 24.04 ± 2.71, the highest score index was 80.13%, while the symptom control need score was 15.58 ± 3.39, the lowest score index was 62.32%. In addition, Caregivers with caregiving experience, dying older adult with longer disease duration, and dying older adult with higher levels of education were the factors influencing the total need for home hospice care among family caregivers, with a variance explained of 22.7%. Discussion: The needs of family caregivers of the terminally ill older adult are high, and healthcare professionals should implement services to meet their multidimensional needs and improve the quality of care according to the factors affecting their needs.

The 4AT, a rapid delirium detection tool for use in hospice inpatient units: Findings from a validation study.

BACKGROUND: Delirium is a serious neuropsychiatric syndrome with adverse outcomes, which is common but often undiagnosed in terminally ill people. The 4 'A's test or 4AT (www.the4AT.com), a brief delirium detection tool, is widely used in general settings, but validation studies in terminally ill people are lacking. AIM: To determine the diagnostic accuracy of the 4AT in detecting delirium in terminally ill people, who are hospice inpatients. DESIGN: A diagnostic test accuracy study in which participants underwent the 4AT and a reference standard based on the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. The reference standard was informed by Delirium Rating Scale Revised-98 and tests assessing arousal and attention. Assessments were conducted in random order by pairs of independent raters, blinded to the results of the other assessment. SETTING/PARTICIPANTS: Two hospice inpatient units in Scotland, UK. Participants were 148 hospice inpatients aged ⩾18 years. RESULTS: A total of 137 participants completed both assessments. Three participants had an indeterminate reference standard diagnosis and were excluded, yielding a final sample of 134. Mean age was 70.3 (SD = 10.6) years. About 33% (44/134) had reference standard delirium. The 4AT had a sensitivity of 89% (95% CI 79%-98%) and a specificity of 94% (95% CI 90%-99%). The area under the receiver operating characteristic curve was 0.97 (95% CI 0.94-1). CONCLUSION: The results of this validation study support use of the 4AT as a delirium detection tool in hospice inpatients, and add to the literature evaluating methods of delirium detection in palliative care settings. TRIAL REGISTRY: ISCRTN 97417474.

Nephrologists' perspectives and experiences with hospice among older adults with end-stage kidney disease.

BACKGROUND: Hospice care leads to improved patient and family outcomes. Hospice use among older adults with end-stage kidney disease (ESKD) is markedly lower than among older adults with other serious illnesses, and the majority of those with ESKD who use hospice enroll in the last days of life. Here, our aim was to explore barriers to timely receipt of high-quality hospice care for older adults with ESKD. METHODS: Utilizing a qualitative study design, we conducted a secondary analysis focused on hospice, a theme that we identified in our larger overarching study that involved semi-structured interviews with 20 nephrologists in the United States focused on treatment decision-making in older adults with advanced chronic kidney disease. We analyzed the interview transcripts using emergent thematic analysis to develop an understanding of barriers to high-quality hospice. RESULTS: With a couple notable exceptions, nephrologists voiced general support for the concept of hospice, but few recalled patients of theirs who had received hospice. Nephrologists' interviews revealed two interrelated contributors to the lack of timely access to high-quality hospice care for seriously ill older adults with ESKD: (1) nephrologists view dialysis and hospice as mutually exclusive models of care; (2) nephrologists feel unsure who should manage hospice care for patients with ESKD. The first contributor was rooted in nephrologists' narrow vision of when to consider hospice (informed, in part, by policy barriers) and, in a couple of cases, strong discomfort with hospice. The second stemmed from nephrologists' belief that neither they nor hospice are adequately prepared to provide hospice care for ESKD. CONCLUSIONS: Our findings suggest that, in addition to Medicare policy change, nephrologists need to receive more training in primary palliative care skills including in indications for hospice, initiating conversations about hospice with patients, and collaborating with hospice clinicians to care for these vulnerable patients.

An Age Group Comparison of Concurrent Hospice Care: A Cost-Effectiveness Analysis.

This study aimed to examine the cost-effectiveness of concurrent hospice care compared with standard care among pediatric patients of different age groups. Using a national Medicaid database of 18 152 pediatric patients enrolled in hospice care between 2011 and 2013, this study calculated and analyzed incremental cost-effectiveness ratios (ICERs) for concurrent care versus standard hospice care for children of 4 age categories: <1 year, 1 to 5 years, 6 to 14 years, and 15 to 20 years. The results indicated that the total Medicaid cost of hospice care was $3229 per patient per month (PPPM; SD, $8709) for those younger than 1 year, $4793 PPPM (SD, $8178) for those aged 1 to 5 years, $5411 PPPM (SD, $7456) for those aged 6 to 14 years, and $5625 PPPM (SD, $11459) for those aged 15 to 20 years. Incremental cost-effectiveness ratio values across all age groups showed that children enrolled in concurrent care had fewer live discharges but at a higher Medicaid cost of care as compared with those enrolled in standard hospice care. Concurrent hospice care was the most cost-effective in the age groups of <1 year and 1 to 5 years, with ICERs equal to $45 (95% confidence interval [CI], $23-$66) and $49 (95% CI, $8-$76), respectively. For the other older age groups, benefits of enrollment in concurrent care came at a much higher cost: in the age group of 6 to 14 years, ICER was equal to $217 (95% CI, $129-$217), and in the age group of 15 to 20 years, it was $107 (95% CI, $82-$183). Concurrent hospice is an effective way to reduce live discharges but has a higher total Medicaid cost than standard hospice care.

An observational study protocol to capture, validate and characterise lucid episodes in people living with advanced dementia receiving hospice care.

INTRODUCTION: Lucid episodes (LEs) in advanced neurodegenerative disease, characterised by a transient recovery of abilities, have been reported across neurological conditions, including Alzheimer's disease and related dementias. Evidence on LEs in dementia is extremely limited and draws predominantly from retrospective case reports. Lucidity in dementia has received growing attention given the clinical, caregiving and potential epidemiological implications of even a temporary return of abilities in advanced disease. Following a funding initiative by the National Institute on Aging, several new investigations are focused on establishing foundational evidence on lucidity in dementia. The objectives of this study are to capture, characterise and validate potential LEs via audiovisual observation, computational linguistic and timed-event coding of audiovisual data, and informant case review for face validation of LEs. METHODS AND ANALYSIS: This prospective multifaceted observational study will investigate LEs in advanced dementia through longitudinal audiovisual observation within an inpatient hospice unit. Audiovisual data will be coded to generate variables of participant verbal output, verbal expressions, non-verbal communicative actions and functional behaviours to enable measurement of features that can be used to characterise LEs. Multiple methods will be used to identify potential LEs including field interviews with caregivers/clinicians who witness significant events during data collection, reports from research staff who witness significant events during data collection and detection by researchers during video data processing procedures. Potential LEs will undergo a structured case review with informants familiar with the participant to facilitate validation and enable triangulation across measures generated through coding. ETHICS AND DISSEMINATION: This study will be conducted in accordance with all Federal Policies for the Protection of Human Subjects and the protocol (ID 2021-1243) has been approved by the University of Wisconsin-Madison Institutional Review Board. Findings will be disseminated via scientific conferences, journal publications and newsletters shared with participants and through dementia-focused and caregiver-focused networks.