Hospice Services Research Articles

A National Survey of Conservative Kidney Management Practices for Patients Who Forgo RRT.

Clinical practice guidelines advocate for conservative kidney management (CKM), a planned, holistic, patient-centered approach to caring for patients who forgo initiation of kidney replacement therapy (KRT). Little is known about the extent to which current care practices meet these expectations. We conducted a cross-sectional survey of a national sample of nephrology providers recruited through US professional societies between March-July 2022 and inquired about their experiences with caring for patients who forgo KRT and their capacity to provide CKM. Overall, 203 nephrology providers (age 47±12years, 53.2% white, 66.0% female), of which 49.8% were nephrologists and 50.2% advanced practice providers, completed the survey. Most (70.3%) reported that <10% of their practice comprised patients who had forgone KRT. Most indicated that they "always" or "often" provided symptom management (81.8%), multidisciplinary care (68.0%), tools to support shared decision-making about treatment of advanced kidney disease (66.3%), and psychological support (52.2%) to patients who forgo KRT, while less than half reported that they "always" or "often" provided staff training on the care of these patients (47.8%) and spiritual support (41.4%). Most providers reported "always" or "often" working with primary care (72.9%), palliative medicine (68.8%), hospice (62.6%), social work (58.1%) and dietitian (50.7%) services to support these patients, while only a minority indicated that they "always" or "often" offered chaplaincy (23.2%), physical and/or occupational therapy (22.8%), psychology or psychiatry (31.5%), and geriatric medicine (28.1%). Many nephrology providers have limited experience with caring for patients who forgo KRT. Our findings highlight opportunities to optimize comprehensive CKM care for these patients.

Perceived Facilitators and Barriers in Implementing Hospice Care: A Qualitative Study Among Health Care Providers in Binzhou, China

Although many large Chinese cities have begun to implement hospice services, hospice care is still a relatively new concept in many parts of the country, especially in smaller cities. The purpose of this study was to gain a better understanding of health care providers’ (physicians and nurses) perceptions of the facilitators and barriers to hospice care implementation in a fourth-tier city. Using a qualitative descriptive approach, semi-structured, open-ended interviews were conducted with 15 health care providers. Two major categories for developing hospice care were identified: (a) prospective facilitators and (b) perceived barriers. In addition, there is currently much ambiguity regarding what agency should oversee hospice services if implemented, who should be responsible for payment, the importance of developing interdisciplinary care teams and concerns about worker shortages. Future research is encouraged to investigate attitudes towards hospice care across various local healthcare systems and to promote the development of local hospice care support.

"Before I came to the hospice, I had nobody". A qualitative exploration of what patients, family-caregivers, clinicians and volunteers valued most about home, day therapy or inpatient hospice services.

Globally, the demand for hospice care continues to grow resulting in substantial resource burden. Whilst some countries are able to rely on fixed government contributions, statutory funding for palliative care in the United Kingdom is unequally distributed. These unstable funding streams and increased demand means that hospices need to evidence their value. This study explored the experiences of patients and family-caregivers to determine what they valued most from accessing hospice services in Wales. In this large multi-site qualitative study, 94 semi-structured interviews and 2 focus groups were conducted with hospice patients (n = 45), family-caregivers (n = 18), hospice staff (n = 31) and volunteers (n = 10). The audio recordings were transcribed verbatim and analysed using Framework analysis. Seven themes described patient and family-caregiver experiences and what they valued most: relationships with staff and volunteers, greater support networks which reduced social isolation and loneliness, provision of information and advice which improved patient autonomy, symptom management and subsequent reduction in psychological distress, improvements in patient functionality, mobility and overall physical health and respite relief which promoted improved relationships. This is the largest study to explore what patients and family-caregivers value from hospice care. Findings indicate that hospice care provides a truly needs-led and strengths-based service to those who are nearing and at the end-of-life, which is highly valued by patients and family members.

Rest-in-Peace: Research on the Architectural Types and Design Ideas to Guide Design of Hospice Care Building.

In the context of an aging population, the concept of peaceful end-of-life care has gained increasing significance as an essential component of individuals' fundamental well-being. This underscores the importance of researching and developing hospice care facilities and service systems dedicated to providing a tranquil resting environment. This study focuses on selected hospice care buildings, examining their service model evolution and architectural design. Through case analyses, it explores contemporary hospice care architecture, identifying various types and spatial design features that cater to the end-of-life needs of individuals. The findings guide the design of hospice care buildings in China, emphasizing patient-living areas, medical care zones, and auxiliary functional spaces. This comprehensive approach aims to enhance terminally ill patients' comfort, serenity, and dignity. Moreover, it aims to provide emotional and post-funeral support to terminally ill patients' families.

Factors Associated With Mortality and Hospice Use Among Medicare Beneficiaries With Heart Failure Who Received Home Health Services

Background: Although many Medicare beneficiaries with heart failure (HF) are discharged with home health services, little is known about mortality and hospice use in this group. Objectives: To identify risk factors of 6-month mortality and hospice use among hospitalized HF patients who receive home health, which could inform efforts to improve palliative and hospice use for these patients. Methods: A retrospective cohort analysis was conducted in a 100% national sample of Medicare fee-for-service beneficiaries with HF discharged with home health from 2017-2018. Multivariable Cox regression models examined factors associated with 6-month mortality and multivariable logistic regression models examined factors associated with hospice use at the time of death. Results: 285,359 Medicare beneficiaries were hospitalized with HF and discharged with home health; 15.5% (44,174) died within 6 months. Variables most strongly associated with mortality included: age >85 years [Hazard Ratio (HR) 1.66, 95% CI 1.61-1.71], urgent/emergency hospital admission (HR 1.68, 1.61-1.76), and “serious” condition compared to “stable” condition (HR 1.64, CI 1.52-1.78). Among 44,174 decedents, 48.2% (21,284) received hospice at the time of death. Those with lower odds of hospice use at death included patients who were: <65 years [Odds Ratio (OR) 0.65, CI 0.59-0.72]; Black (OR 0.64, CI 0.59-0.68) or Hispanic race/ethnicity (OR 0.79, CI 0.72-0.88); and Medicaid-eligible (OR 0.80, CI 0.76-0.85). Conclusions: Although many patients hospitalized for HF are at risk for 6-month mortality and may benefit from palliative and/or hospice services, our findings indicate under-utilization of hospice and important disparities in hospice use by race/ethnicity and socioeconomic status.

PEER SUPPORT FOR CAREGIVERS OF AFRICAN AMERICANS LIVING WITH DEMENTIA: A PHASE 1 BEHAVIORAL INTERVENTION PROTOCOL

Abstract African American caregivers of older adults living with Alzheimer’s disease or a related dementia are at high risk for physical, spiritual, and psychosocial challenges. Peer mentorship, a relationship-centered person-to-person approach may reduce healthcare decision-making burden among African American caregivers through cultural tailoring by promoting oral traditions, personal contact, and storytelling. The purpose of this Stage 1 intervention study is to use a stakeholder-informed approach in further developing and pilot testing the co-created Peer Support for Caregivers of African Americans Living with Alzheimer’s Disease and Related Dementias (Pair2Care), a culturally sensitive caregiver peer support program. Pair2Care feasibility and acceptability will be evaluated in current (n=15) and trained former (n=15) African American Alzheimer’s and related dementia caregivers. Pair2Care will be deemed feasible and acceptable by evaluating eligibility criteria, recruitment and retention data, protocol adherence, satisfaction, and feedback on program appropriateness for broader dissemination. Preliminary intervention outcomes of caregiver anxiety, depression, quality-of-life, social support, self-efficacy for surrogate decision-making, and intent to use palliative care or hospice services will be assessed to evaluate intervention effectiveness. At 6 months as compared to baseline, current caregivers will report less anxiety and depression, improved quality-of-life, social support, and self-efficacy for surrogate decision-making, as well as intent to use palliative care or hospice services as part of healthcare and advance care planning decision- making. Pair2Care poses an innovative strategy with the potential to address advance care planning and healthcare decision-making, a significant health disparity problem and thereby promote health equity.

FROM CELLS TO SYSTEMS

Abstract Individuals who have been incarcerated may experience chronic pain due to various reasons, such as physical injuries sustained during their time in prison, untreated chronic medical conditions, or addiction to prescription medications. The pain may persist into late life, resulting in reduced quality of life, increased healthcare costs, and limited access to end of life care and hospice services. This issue requires collaboration among experts in pain management, geriatrics, and palliative care to develop effective interventions that address the unique needs of this population. Suicide among veterans is another pressing issue that requires an interdisciplinary approach. Incarcerated veterans may face numerous challenges upon release, including limited access to healthcare and social support, economic instability, and the stigma associated with a criminal record. These factors may contribute to increased risk of suicide. Addressing this issue requires a collaborative effort among experts in mental health, social work, and criminal justice to develop comprehensive programs that provide support for veterans transitioning from incarceration to civilian life. Being imprisoned can have lasting negative health consequences that persist throughout a person’s lifetime. Incarcerated individuals may face limited access to quality end-of-life care and hospice services, resulting in increased suffering during their final days. The experience of incarceration can also lead to social isolation and stigma, exacerbating mental health issues and further decreasing the quality of life at the end of life. Effective interventions are needed to address the unique healthcare needs of incarcerated individuals, particularly as they approach the end of life

UNDERUTILIZATION OF HOSPICE CARE IN OLDER BLACK ADULTS

Abstract Hospice is underutilized in Black Americans despite evidence that Black Americans benefit from hospice services. There are several potential reasons hospice is underutilized in Black Americans including lack of knowledge of hospice, poor opinions of hospice, and low self-efficacy in end-of-life decision-making. Patient decision aids are one technique used to improve patient knowledge and agency in making medical decisions. This research project endeavored to addresses potential barriers to hospice enrollment in Black adults and evaluates if a hospice specific patient decision aid could improve hospice knowledge, opinions of hospice, and decision-making self-efficacy. The study was a pilot randomized controlled trial that enrolled Black adults aged ≥ 65 years. The three primary outcomes for the study included hospice knowledge measured by the Hospice Knowledge Scale, opinions of hospice measured by the Hospice Beliefs and Attitudes Scale, and confidence in making decisions measured by the Decision Self-Efficacy Scale. Additionally acceptability and usability outcomes of the decision aid were collected. All participants completed the three baseline surveys prior to randomization. Those randomized to the intervention were provided with the hospice patient decision aid while those in the control did not receive the decision aid. Hospice knowledge, opinions of hospice, and decision self-efficacy improved from baseline to one-month follow-up in the intervention group, but between group (intervention vs control) differences were not statistically significant. Overall acceptability outcomes were favorable, and participants stated the patient decision aid would be beneficial in facilitating hospice decision making.

BLACK/WHITE DIFFERENCES IN LENGTH OF STAY IN HOSPICE AMONG MIDDLE-AGED AND OLDER ADULTS IN THE UNITED STATES

Abstract Objectives Hospice length of stay (LOS) is a crucial measure of hospice care. This topic is understudied within a nationally-representative sample across different races/ethnicities, especially among non-White decedents. Methods The study used negative binomial regression to analyze three waves (2014, 2016, and 2018) from HRS (n=1,991). Results African Americans were found to stay longer in hospice than their White counterparts when controlling for all other variables in the model. Not married, having Medicare insurance, cancer, chronic lung disease, and dementia significantly influence length of hospice stay when holding all other variables constant in the model. Discussion The significant Black/White differences in hospice length of stay demonstrate the potential decrease in cumulative inequality in the delivery of appropriate and needed hospice services across the two racial groups. Future research is recommended to explore the potential consequences of longer hospice stays as well as the health and health care mechanisms related to the different disease profiles that lead individuals to hospice care, especially among African Americans.

Development and Validation of the Home Hospice Care Needs Questionnaire for the Dying Old Adult (HHCNQ-DE) in Mainland China.

Context: Home hospice needs assessment is the key to the development of home hospice services. Therefore, there is a need to develop assessment tools in mainland China to meet the comprehensive needs of the old adult at the end of life. Objective: To develop and validate a tool to assess Chinese mainland palliative care needs of the dying old adult at home. Methods: Using the Harmony Nursing Theory as a theoretical framework, through reference to the China home hospice care needs scale, literature research, in-depth conversations with the dying old adult, and group discussions among members of the research team, 43 original questionnaire items were preliminarily drafted. A 31-item predictive questionnaire was formed through 2 rounds of expert review and small sample testing. From April to September 2023, 199 old adult at the end of life at home in Jinzhou, Liaoning Province were investigated to determine the reliability and validity of the questionnaire. Results: The final questionnaire included 31 items. Exploratory factor analysis extracted 5 common factors, and the cumulative variance contribution rate was 68.811%; the Cronbach's alpha coefficient of the total questionnaire was 0.832, and the re-test reliability was .806; the content validity index of the questionnaire was 0.982, and the content validity index of the items was 0.83-1.00. Conclusion: The construction method of the HHCNQ-DE is scientific and reliable, with good reliability and validity, and it can be used as a tool to measure the needs of home hospice care in mainland China in the future.

Have Arguments For and Against Medical Aid in Dying Stood the Test of Time?

Have Arguments For and Against Medical Aid in Dying Stood the Test of Time?

Exploring the Holistic Needs of People Living with Cancer in Care Homes: An Integrative Review.

Up to 26% of individuals residing in care homes are impacted by cancer. This underscores the importance of understanding the holistic needs of care home residents living with cancer to enhance the quality of their care. The primary objective of this integrative literature review was to consolidate the available evidence concerning the comprehensive needs of people living with cancer in care home settings, providing valuable insights into addressing their diverse needs. An integrative literature review was conducted using a systematic approach. Extensive searches were conducted in three databases, complemented by a thorough examination of grey literature and reference lists of relevant papers. The review focused on literature published between 2012 and 2022. The screening process involved two independent reviewers, with a third reviewer resolving any discrepancies. The review identified twenty research papers that met the eligibility criteria. These papers shed light on three primary themes related to the holistic needs of care home residents with cancer: physical, psychological, and end-of-life needs. Physical needs encompassed pain management, symptom control, and nutrition, while psychological needs involved social support, emotional well-being, and mental health care. End-of-life needs addressed end-of-life care and advance care planning. These themes highlight the multifaceted nature of cancer care in care homes and underscore the importance of addressing residents' holistic needs in a comprehensive and integrated manner. Improving care home education about cancer and integrating palliative and hospice services within this setting are vital for addressing the diverse needs of residents with cancer.

The Impact of Neighborhood-Level Factors on Perceived Quality of Hospice Service Satisfaction: A Geographic Information System Study.

Racial/ethnic minorities are underrepresented in hospice care in the United States, despite this being the standard of care for terminally ill individuals. Research indicates that location of services (e.g., rural vs. urban) plays a role in the differences in quality and quantity of services observed. However, the influences of neighborhood structural characteristics on quality of hospice services have not been explored. The purpose of this study was to explore the relationship between hospice neighborhood characteristics and caregiver-rated satisfaction with services in Florida. Data were derived from the Consumer Assessment of Healthcare Providers and Systems Hospice Survey and American Community Survey; ArcGIS was used to generate heat maps to provide visual representations. Findings showed that higher neighborhood immigrant density predicted lower family satisfaction with timely care, communication, spiritual support, and likelihood to recommend the agency services. The U.S. population is projected to continue to grow in its diversity, and thus understanding neighborhood characteristics associated with racial/ethnic minorities' perception of care quality are important for shaping care improvements.

Perception about Home Visiting Hospice Service of End of Life Patients at Home

Perception about Home Visiting Hospice Service of End of Life Patients at Home

Real-World Treatment Patterns, Overall Survival, Healthcare Resource Utilization, and Costs Among U.S. Elderly Patients with Mantle Cell Lymphoma (MCL) after Failure of Covalent Btki Treatment

Background: Over the past decade, Bruton's tyrosine kinase inhibitors (BTKis) have emerged as standard of care treatment for relapsed/refractory mantle cell lymphoma (R/R MCL). Despite improvements in progression-free survival with currently available covalent BTKis (cBTKis), response duration can be limited as patients eventually experience disease progression or treatment intolerance. Limited real-world evidence on post-cBTKi clinical and economic outcomes exists for these patients. The goal of this study was to examine treatment patterns, overall survival (OS), healthcare resource use (HRU), and costs in elderly U.S. patients with R/R MCL in the third-line (3L) setting who received first-generation or second-generation cBTKi treatment in prior lines of therapy (i.e. 1L or 2L). Methods: This retrospective study used 2010-2019 U.S. Medicare claims (100%), the most recently available data at the time of the analysis, to identify elderly (≥66 years) patients with a new MCL diagnosis between 01/01/2010 and 12/31/2018 (index date = first MCL diagnosis date). Patients were required to have continuous fee-for-service Medicare coverage in the 12-months pre- and a minimum of 12-months post-index. An algorithm to identify lines of therapy (LOT) was developed using prior published studies. Patients were included in our final sample if they had evidence of use of a cBTKi (i.e. ibrutinib or acalabrutinib, the two available BTKIs during our study period) in the 1L and/or 2L setting and had progressed to 3L treatment. Outcomes included patient clinical and sociodemographic characteristics, treatment patterns, all-cause and MCL-related HRU and costs, and median OS after 3L treatment initiation. Results: The final sample contained 230 elderly patients with R/R MCL receiving 3L treatment who had cBTKi use in a prior LOT. The vast majority (&amp;gt;95%) of these patients had received their cBTKi in the 2L setting; the most common cBTKi in the 1L (100%) and 2L (&amp;gt;93%) setting was ibrutinib. Patients had a mean age of 75.0 years (SD=5.9) and 21.7% were age &amp;gt;80 years. Over two-thirds (67.4%) were male and majority (93.9%) were white. About one-quarter (25.7%) of the patients received a cBTKi (17.8% ibrutinib and 7.8% acalabrutinib) in the 3L setting. Other common 3L treatments included standard chemotherapy (26.1%), lenalidomide (18.7%), and bortezomib (18.3%). Over a median follow-up of 1.6 years, 38.7% of the patients progressed to fourth-line (4L) treatment and the mean time to next treatment (i.e. end of 3L to start of 4L) was 2.8 months. Median OS from 3L treatment initiation was 9.4 months and the 1-year and 3-year survival rates were 43.7% and 17.9%, respectively. All-cause hospitalization was common (73.6%) and 44.7% used hospice services in the 12 months after 3L treatment initiation. All-cause total costs were substantial ($145,726) in the 12 months following 3L treatment initiation and 87% of these costs were MCL-related ($126,526). Inpatient and outpatient costs in the 12 months following 3L treatment initiation were $32,520 and $19,370, respectively (these costs were higher in the subgroup of patients who progressed to 4L therapy). MCL-related prescription costs ($70,127) represented over half (55%) of MCL-related total spending; most of those costs were for Part D oral agents ($43,009) rather than Part B IV-administered agents ($27,119). Conclusions: In this real-world study of elderly U.S. patients with R/R MCL, we found that 3L patients treated with currently available cBTKis in prior lines had poor OS. Limited options for 3L treatment existed, with over half of patients using another cBTKi or standard chemotherapy. Further, rates of HRU were high and healthcare costs were substantial in the 3L setting. Our study suggests there is a large unmet need in elderly patients with R/R MCL who previously failed a cBTKi, highlighting the importance of ongoing development with novel therapeutics aiming to improve outcomes in R/R MCL.

Assessing the feasibility, acceptability, and preliminary efficacy of a novel symptom management care delivery intervention for caregivers receiving home hospice care: The I-HoME protocol.

BackgroundTerminally ill patients experience high symptom burden at the end of life (EoL), even when receiving hospice care. In the U.S., family caregivers play a critical role in managing symptoms experienced by patients receiving home hospice services. Yet, most caregivers don't receive sufficient support or formal training in symptom management. Therefore, providing additional visits and education to caregivers could potentially improve outcomes for both patient and caregiver. In response, we developed the Improving Home hospice Management of End-of-life issues through technology (I-HoME) intervention, a program designed for family caregivers of home hospice patients. This paper describes the intervention, study design, and protocol used to evaluate the intervention. MethodsThe I-HoME study is a pilot randomized controlled trial aimed at reducing patient symptom burden through weekly tele-visits and education videos to benefit the patient's family caregiver. One hundred caregivers will be randomized to hospice care with (n = 50) or without (n = 50) the I-HoME intervention. Primary outcomes include intervention feasibility (e.g., accrual, attrition, use of the intervention) and acceptability (e.g., caregivers' comfort accessing the tele-visits and satisfaction). We will also examine preliminary efficacy using validated patient symptom burden and caregiver outcome measures (i.e., burden, depression, anxiety, satisfaction). ConclusionThe trial is evaluating a novel symptom management intervention that supports caregivers of patients receiving home hospice services. The intervention employs a multi-pronged approach that provides needed services at a time when close contact and support is crucial. This research could lead to advances in how care gets delivered in the home hospice setting.

EOLP-02. EFFECT OF HEALTH DISPARITIES ON END OF LIFE CARE IN GLIOBLASTOMA, IDH WILDTYPE (GBM) PATIENTS

Abstract GBM is the most common malignant brain tumor in adults. Given the highly aggressive course and rapid neurologic decline, end of life care is critical. Proactive referral to hospice care is associated with improved quality of life and is recommended under current oncology guidelines. Utilization of these services is limited, with hospice referral rates ranging from 60-75%. The role of healthcare disparities upon quality of end of life care remains unclear. The goal of this study was to investigate the influence of healthcare disparities upon hospice service utilization by comparing patients at Ben Taub (BT), a Houston public safety net hospital, to Baylor St. Luke’s (BSL), a private academic institution. 50 patients (16 BT, 34 BSL) diagnosed with GBM, IDH wildtype, since 2016 were analyzed via retrospective chart review. Patient demographics and insurance status varied, with BT patients more likely to be Hispanic or African American (BT 94%, BSL 29%) and to be uninsured or insured via the county financial aid program (BT 88%, BSL 6%). Hospice referral rates were overall consistent with prior studies (BT 75%, BSL 68%). BT patients were referred to hospice later (BT 3.8, BSL 5.5 weeks mean survival after referral, p=0.118) and were more likely to be referred while in an inpatient setting (BT 75%, BSL 36%, p=0.07). Additionally, BT patients were more likely to be admitted to the hospital in the month prior to death (BT 44%, BSL 33%, p=0.537) and to die in an inpatient setting (BT 19%, BSL 3%, p=0.096). These findings call attention to the impact of healthcare disparities upon utilization of end of life services. Further research is needed to investigate factors contributing to these discrepancies and implement tools to improve quality of life in all patients with late-stage GBM regardless of race, socioeconomic, or insurance status.

Outcomes of patients placed on comfort care at a large, urban, quaternary care medical center.

229 Background: End-of-life care in the typical hospital setting has several drawbacks including lack of interdisciplinary hospice teams, less comfortable environments, and lack of provider experience. In addition, patients at the end of their life are often severely symptomatic and imminently dying and thus have barriers to appropriate disposition. Few studies have explored the outcomes of patients placed on comfort care with respect to hospice disposition. The objective of this study was to perform a retrospective analysis of patients who transitioned to comfort care at Thomas Jefferson University Hospital (TJUH) to better understand the ultimate disposition of patients placed on comfort care. Methods: We conducted a retrospective study of patients placed on the comfort care order set between July 1st, 2021, until June 30th, 2022. A report of all patients placed on our institutions “comfort care order set” was run using Qlik analytics and data platform. Each individual patient chart was then analyzed to collect multiple clinical variables, including diagnoses, palliative care involvement, time on comfort care, hospital length of stay (in total and after comfort care order set placed), healthcare utilization prior to hospitalization, and IV medications used for symptom management. Participants were limited to those 18 years or older. IRB approval was obtained as per institutional guidelines. Results: 541 patients were included in the analysis. 424 (78.37%) patients died while still admitted to the hospital. This amounts to 1.5 patients a day requiring comfort care support. 60% of patients on comfort care were in the intensive care unit (ICU). The ICU population spent on average 11.04 (+/- 24) hours on comfort care. 19% of these patients were on comfort care for longer than 12 hours. Subspecialty and hospital medicine patients were on comfort care for 3.3 (+/- 3.3) days and 5 (+/- 9.5) days respectively. Within oncology patients, the average time was 3 (+/- 2.4) days. 94% of the patients placed on comfort care in the ICU died in the hospital as compared to 53% of subspecialty and 59% of hospital medicine patients. 40% of non-ICU patients were discharged with hospice services. The average length of stay for the study population was 12.5 (+/- 13.0) days. Conclusions: The majority of patients placed on comfort care died during their hospitalization demonstrating a real need for comprehensive end of life care and immediate hospice services for our patient population. For those discharged with hospice services, they spent an excessive amount of time in the hospital waiting for services to be arranged. Establishing a hospital based inpatient hospice unit has the potential to improve the patient and family experience, provide better end of life care, and reduce length of stay. Previous studies have also demonstrated decreased costs. Ongoing work is underway at our institution to provide optimal end of life care for this patient population.

Eye donation from palliative and hospice care contexts: the EDiPPPP mixed-methods study.

Over 2 million people in the United Kingdom are living with sight loss with costs to the United Kingdom economy reported as £4.34 billion annually. Conditions that lead to sight loss and impaired vision can be treated if eye tissue is available for corneal transplantation, reconstructive surgery and research into eye diseases. Supply of eye tissue (only available via eye donation) is currently insufficient to meet demand; therefore, new routes are needed. Hospice and hospital-based Palliative Care Services have been reported as potential donation sources of this tissue. To: (1) scope the size and clinical characteristics of the potential eye donation population from research sites; (2) map the donation climate of each research site; (3) identify factors that enable or challenge service providers to consider the option of eye donation from a local and national perspective; (4) identify service users' views regarding the option of eye donation and the propriety of discussing eye donation; and (5) develop and pilot an empirically based intervention designed to change behaviours in relation to eye donation. A 36-month mixed-methods, multicentre study undertaking three work packages. Three hospice care and three hospital-based palliative care services situated in the North, Midlands and the South of England (one service of each type per region). Work package 1 - 105 service providers. Work package 2 - 62 service users, and 156 service providers in the national survey. Work package 3 - 21 expert consultees (patient and public involvement, cross discipline). Scoping review, retrospective note review, qualitative interviews/focus groups, participant observation, secondary analysis of primary data, national survey, transparent expert consultation. Potential: The retrospective notes review demonstrated that of 1199 deceased patients' notes, 553 (46%) patients met the criteria for eye donation (56%, n = 337 in hospice care service settings and 36%, n = 216 in hospital palliative care service). Practice: Less than 4% of all cases agreed as eligible for donation had been approached or referred for eye donation. Eye donation is not currently an embedded practice at local and national levels. Perceptions: Service providers were motivated to discuss eye donation but lacked opportunity and capability. Service users were willing and able to hold conversations about eye donation but were not aware of the option and had not had the option discussed with them. Preferences: Service users wanted to be offered the option of eye donation, and service providers wanted bespoke education and training related to eye donation. Evaluation of the developed intervention STEPS - Support Toolkit for Eye donation in Palliative care Settings will follow implementation of the full intervention (expected to begin in October 2022). Due to the significant impact of the COVID-19 pandemic on clinical sites, partner organisations and national service providers, only two elements of the developed intervention have been pilot tested for proof of concept and the response rate to the national survey was low (8%). Significant potential exists for eye donation from hospice care and hospital palliative care services; however, individual and organisational behaviour as well as information system-based changes are needed to maximise this potential. Evaluation of the STEPS - Support Toolkit for Eye donation in Palliative care Settings; Research exploring the wider public knowledge and views regarding eye donation; research exploring the use of language by National Health Service Blood and Transplant-Tissue and Eye Services in their public-facing infographics, communications and campaigns (specifically the use of the term eye donation). This trial is registered as ISRCTN14243635: Eye donation from palliative care and hospice care settings. This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (17/49/42) and will be published in full in Health and Social Care Delivery Research; Vol. 11, No. 20. See the NIHR Journals Library website for further project information.

"Palliative care is so much more than that": a qualitative study exploring experiences of hospice staff and bereaved carers during the COVID-19 pandemic.

The way in which end-of-life care was provided changed significantly during the first 2 years of the COVID-19 pandemic. The national lockdown restrictions reduced formal care support services and increased the burden on many carers taking on the caring role for the first time. We aimed to explore decision-making about the place of care during the COVID-19 pandemic and the impact on experience from the perspectives of carers and hospice staff caring for people at the end-of-life. A qualitative study using virtual interviews was conducted between October 2020 and April 2021. Data were analyzed thematically using framework analysis, an analytical framework that enables qualitative research to be organized into defined themes derived from the research question. Findings were presented to stakeholders in policy roundtables between March 2022 and March 2023 and discussed collaboratively with staff, stakeholders, and the public to inform policy and practice change. A total of 37 participants (15 bereaved carers and 22 staff) were recruited via hospice services in England and Scotland. Four key themes were identified: (1) changing preferences relating to decision-making about the place of care and the impact at the time of death and into bereavement; (2) missed opportunities related to not being there, not having others around, and being robbed of memory-making; (3) the lone carer during a period of high intensity and reduced home support; (4) process vs. person-centered care resulting from changing rules and restrictions and prioritization of regulations over essential palliative care. The study provides valuable global implications for all involved in end-of-life care. Despite great efforts to provide dignified, quality care, palliative care during the pandemic changed, focusing on essential 'physical care'. The psychological suffering experienced by staff and carers may need longer-term support mechanisms put in place, which will benefit from a public health approach. Policymakers should consider improving carer identification and resources for wider end-of-life care education to support the needs of carers, health and social care staff, and citizens.