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.

Provider Perspectives and Access to Palliative Care: An American Head and Neck Society (AHNS) Survey.

BACKGROUND: To explore provider perspectives about palliative care (PC) in head and neck cancer (HNC) care. METHODS: A 25-question electronic survey was disseminated to the membership of the American Head and Neck Society (AHNS) from April 10, 2023, through June 13, 2023. RESULTS: Respondents were most likely to refer to PC at symptomatic disease progression (52%) or terminal diagnosis (29%) rather than at initial diagnosis (17%). Participants less likely to refer to PC were less likely to refer to symptomatic progression (8% vs. 39%, p = 0.0006) or address advance directives (62% vs. 87%, p = 0.0406). Symptom burden questionnaires were used by only 29% of respondents. Discordance was identified between self-reported and actual access to local inpatient and outpatient PC services. CONCLUSIONS: Barriers to PC identified include a lack of established optimal timing of PC referral, a perceived lack of local access to PC, and a lack of uniform standardized assessment of symptom burden.

Tailoring Hospice Care to the Veteran Population.

United States Military Veterans are an increasingly elderly population, and more and more veterans are choosing hospice care at the end of life. These veterans, particularly if they served in combat, can bring unique management challenges and opportunities to a hospice team. This review highlights the physical and psychosocial traumas experienced by many veterans, and discusses how these issues can affect their hospice care. Traumatic injury-related issues such as chronic pain, neuropathic pain, insomnia, and chronic headaches can worsen for veterans at the end of life, and the psychological sequelae of these traumatic events such as Post-Traumatic Stress Disorder (PTSD), Chronic Anxiety, Substance Abuse, and increased risk of suicide can also be magnified during this time. This review details these and other commonly seen service-related comorbidities, and offers evidence-based recommendations regarding their diagnosis and treatment. In addition, it discusses what is important to veterans at the end of life, and provides suggestions on how hospice programs can individualize and optimize their care of this special population. Honoring their service and respecting their sacrifices are also important aspects of "Best Care" for veterans at the end of life, and this review provides suggestions on how to do so and includes a list of resources that can greatly assist hospice programs, veterans, and families in delivering the most respectful, comprehensive, and thoughtful care possible.

Home Health Care and Place of Death in Medicare Beneficiaries With and Without Dementia.

BACKGROUND AND OBJECTIVES: Home health care supports patient goals for aging in place. Our objective was to determine if home health care use in the last 3 years of life reduces the risk of inpatient death without hospice. RESEARCH DESIGN AND METHODS: We analyzed the characteristics of 2,065,300 Medicare beneficiaries who died in 2019 and conducted multinomial logistic regression analyses to evaluate the association between the use and timing of home health care, dementia diagnosis, and place of death. RESULTS: Receiving any home health care in the last 3 years of life was associated with a lower probability of inpatient death without hospice (Pr 23.3% vs 31.5%, p < .001), and this effect was stronger when home health care began prior to versus during the last year of life (Pr 22.5% vs 24.3%, p < .001). Among all decedents, the probability of death at home with hospice compared to inpatient death with hospice was greater when any home health care was used (Pr 46.0% vs 36.5%, p < .001), and this association was strongest among beneficiaries with dementia who started home health care at least 1 year prior to death (Pr 55.6%, p < .001). DISCUSSION AND IMPLICATIONS: Use of home health care during the last 3 years of life was associated with reduced rates of inpatient death without hospice, and increased rates of home death with hospice. Increasing affordable access to home health care can positively affect end-of-life care outcomes for older Americans and their family caregivers, especially those with dementia.

Malignant Neoplasm of the Meninges: A 20-Year Retrospective Study to Assess Trends and Disparities in Place of Death.

BACKGROUND: The site of death is a crucial factor associated with the tumor's progression and complications arising from it; therefore, analyzing nationwide patterns in place of death is essential. The present paper aims to evaluate the disparities in place of death for malignant neoplasm of the meninges using the CDC-WONDER (Centers for Disease Control and Prevention Wide-ranging ONline Data for Epidemiologic Research) database over 22 years (1999-2020). METHODS: CDC-WONDER data from 1999 to 2020 were analyzed to investigate mortality trends related to malignant neoplasm of the meninges. Data selection ensured inclusivity of all races, with confidentiality and death count thresholds considered. Demographics encompassed Census Regions, all genders, races, and 10-year age groups, along with a five-year forecast. Microsoft Excel (Microsoft Corporation, Redmond, Washington) and R Software (R Foundation, Boston, Massachusetts) were used for data processing and statistical analysis, with visualization through ARIMA modeling. RESULTS: Cumulative home and hospice deaths were analyzed based on overall age, gender, race, and region, demonstrating that home and hospice deaths increased overall, particularly in the 65-74 and 75-84 age groups, and more so in females. White individuals showed increasing trends, while Black or African American individuals remained stable. Regionally, the South had the highest increase, while the Northeast remained stagnant. CONCLUSION: There is a concerning upward trend in home or hospice deaths among individuals with malignant neoplasm of the meninges, particularly within the 65-84 age group, in females, among White individuals, and in the Southern region. More comprehensive data is needed, and further research must be conducted to understand the underlying causes for the rise in these demographics and to improve healthcare facilities.

[Palliative care: social and territorial inequalities]. / Soins palliatifs : inégalités sociales et territoriales.

PALLIATIVE CARE: SOCIAL AND TERRITORIAL. INEQUALITIES.Palliative care can be provided wherever the patient lives or receives care, considering its environment, in coordination with healthcare professionals, social and medico-social professionals. The way in which palliative care is provided varies from one country to another, depending on resources, cultural values, healthcare systems and policies of each country. There are disparities in access, particularly in rural areas and for vulnerable populations. One of the main limitations to the development of palliative care, after budgetary issues, is the insufficient development of a professional workforce specializing in palliative care. The overseas territories are in a specific situation, with populations suffering from a combination of social and territorial health inequalities. This approach to frailty makes it possible to anticipate and plan for palliative care to meet the future patients' needs. French citizens living in extreme poverty, protected persons, people with psychiatric disorders, elderly, people with disabilities and anyone else with one or more vulnerabilities face situations where they cannot exercise all their rights. The national ten-year strategy on « palliative care, pain management and support at the end of life ¼ places priorities to reducing all forms of inequalities in end-of-life journeys.

SOINS PALLIATIFS: INÉGALITÉS SOCIALES ET TERRITORIALES. La prise en charge palliative est susceptible d'intervenir quel que soit le lieu de vie ou de soins et elle s'organise dans l'environnement de la personne malade, avec l'appui de professionnels de santé et du secteur social ou médico-social et des équipes de soins. Les modalités de prise en charge palliative varient d'un pays à l'autre en fonction des ressources, des valeurs culturelles, des systèmes de santé et des politiques internes. Il existe des disparités d'accès, en particulier dans les zones rurales et pour certaines populations en situation de fragilité. Une des principales limites au développement des soins palliatifs et à l'accompagnement en fin de vie, outre les problématiques de financement et de tarification, est le développement insuffisant de la démographie professionnelle spécialisée en soins palliatifs. Les territoires d'outre-mer relèvent de situations spécifiques, avec des populations qui cumulent des inégalités sociales et territoriales de santé. L'approche de la fragilité permet d'anticiper et d'envisager une prise en charge palliative afin de répondre aux futurs besoins des personnes malades et de leurs proches aidants. Les citoyens français en situation de grande pauvreté, les personnes protégées, celles atteintes de troubles psychiatriques, les personnes âgées, en situation de handicap et toutes celles ayant une ou plusieurs fragilités se heurtent à des situations où elles ne peuvent exercer la totalité de leurs droits. Les mesures et actions de la stratégie décennale « soins palliatifs, prise en charge de la douleur et accompagnement de la fin de vie ¼ s'inscrivent dans la réduction et la lutte contre toutes formes d'inégalité dans les parcours de fin de vie des personnes malades et de leurs proches.

Disbelief, Distress, & Distrust: Trending Institution Related Emotional Distress During COVID-19.

The COVID-19 pandemic had an unprecedented impact on the well-being of individuals working in the healthcare sector. Though many studies exist that focus on physician and nurse well-being, few have specifically identified stressors that affect professionals working within the end-of-life interdisciplinary team. The primary objective of this study was to expand research on moral distress and clinician well-being to include healthcare professionals working with patients with chronic and life-limiting illnesses during the COVID-19 pandemic. A survey approach was used with 110 professionals working within one hospital network's palliative and hospice team to identify key indicators of moral distress (using the MMD-HP scale) and professional well-being during the pandemic. Quantitative and qualitative analysis was completed to determine themes related to moral distress and professional well-being. Numerous themes were identified, including the importance of caseload, general support, team support, management, and professional flexibility. Additional end-of-life themes were identified, including the impact of death, lack of personal protective equipment, fear of transmitting the virus, COVID disbelief, and the inability of clinicians and/or family to be with patients in person. From the experience participants had during COVID-19, four areas of change were identified: professional resilience, management/ethics support, professional development, and physical and emotional safety.

A Simulation to Improve Understanding and Communication of Ethical Dilemmas That Surround Brain Death.

Introduction: Providers across multiple specialties may be called upon to perform brain death assessments at hospitals that lack specialty neurology or critical care services. To address this need, we developed a brain death curriculum involving simulation and group discussion to prepare medical trainees for brain death testing and communication with surrogate decision-makers. Methods: A 1-hour session was delivered to trainees rotating through the intensive care unit at William Beaumont University Hospital. One trainee per session participated in a simulation involving a brain-dead patient (SimMan 3G Mannequin) and spouse (confederate) while the remainder of the cohort observed from a separate room. The trainee briefed the spouse about the brain death examination, performed the examination, and communicated their findings. Afterward, the cohort discussed the history, law, and common ethical and communication issues that surround brain death. Results: A total of 35 trainees participated from August 2022 to March 2023. After the session, trainees were more comfortable performing brain death testing (p < .001), responding to ethical issues (p < .001), and communicating with families (p < .001). However, the session did not change their frustration with family members who have a circulatory (p = .72) or high brain (p = .52) view of death. Discussion: The simulation had a positive impact on medical trainees' ability to perform brain death testing and their comfort level in discussing complex ethical issues that surround brain death. Our results support continued simulation training for medical trainees to better prepare them for clinical practice.

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.

Facilitating home birth in perinatal palliative care: A case report.

BACKGROUND: Perinatal palliative care can offer compassionate support to families following diagnosis of a life-limiting illness, to enable them to make valued choices and the most of the time that they have with their newborn. However, home birth is usually only offered in low-risk pregnancies. CASE: A couple who received an antenatal diagnosis of hypoplastic left heart syndrome and who had made a plan to provide palliative care to their baby after birth requested the option of a home birth. POSSIBLE COURSES OF ACTION: Recommend birth at hospital or explore the possibility of a home birth with perinatal palliative care support. FORMULATION OF A PLAN: Multidisciplinary discussion and collaboration enabled a plan for home birth to be made which anticipated potential complications. OUTCOME: The baby was born at home and died on day 5 of life receiving outreach nursing, paediatric and palliative care support and buccal and oral opioids for symptom management. We include reflections from the family on the importance of this experience. LESSONS: We provide a list of potential criteria for considering home birth in the setting of perinatal palliative care. VIEW: Facilitating a home birth in the setting of perinatal palliative care is an option that can be hugely valued by families, but this service may be practically difficult to deliver in many contexts. Further research is needed to understand the preferences of women and families receiving perinatal palliative care.

Towards a Crisis Management Playbook: Hospice and Palliative Team Members' Views Amid COVID-19.

CONTEXT: The critical role of hospice and palliative care in response to the COVID-19 pandemic is well recognized, but there is limited evidence to guide healthcare leadership through future crises. OBJECTIVES: Our goal was to support future organizational resilience by exploring hospice and palliative team members' perspectives on crisis leadership during the COVID-19 pandemic in New York City (NYC). METHODS: This qualitative descriptive study used individual, semi-structured interviews of purposively sampled interdisciplinary team members. Enrollment sites were two large NYC metro hospice care organizations and one outpatient palliative care practice. We asked participants to complete a demographic form and a 45-60 minute interview. We used descriptive statistics and thematic analysis, respectively, for data analysis. We triangulated the data by presenting preliminary study findings to a group of clinicians (n=21) from one of the referring organizations. RESULTS: Participants (n=30) were professionally diverse (e.g., nurses, physicians, social workers, chaplains, administrators), experienced (mean=17 years; 10 years in hospice), and highly educated (83% ≥ master's degree). About half (n=15) self-identified as white, non-Hispanic, and nearly half (n=13) self-identified as being from a racial/ethnic minoritized group. Two (n=2) did not wish to self-identify. We identified four themes that reflected challenges and adaptive responses to providing care during a crisis: Stay Open and Stay Safe; Act Flexibly; Lead Adaptively; and Create a Culture of Solidarity. CONCLUSION: While additional work is indicated, findings offer direction for a crisis management playbook to guide leadership in hospice, palliative care, and other healthcare settings in future crises.

Age- and gender-based social inequalities in palliative care for cancer patients: a systematic literature review.

Objectives: Cancer is a major public health problem worldwide, given its magnitude and growing burden, in addition to the repercussions on health and quality of life. Palliative care can play an important role improving quality of life and it is cost-effective, but some population groups may not benefit from it or benefit less based on age and gender inequalities. The aim of this systematic review was to analyze the available evidence on age- and gender-based social inequalities in access to and use of palliative care in cancer patients. Methods: A systematic review was conducted following the PRISMA guidelines. An exhaustive literature research was performed in Pubmed, CINHAL and Embase until November 2022 and were not restricted by language or date of publication. Eligible studies were observational studies analyzing the access and use of palliative care in cancer patients. Results: Fifty-three studies were included in the review. Forty-five analyzed age and 44 analyzed gender inequalities in relation to use of and access to palliative care. Our results show that older people receive poorer quality of care, worst symptom control and less preferences for palliative care. In relation to gender, women have a greater preference for the use of palliative care and generally have more access to basic and specialized palliative care services and palliative care facilities. Conclusion: This review reveals difficulties for older persons and men for access to key elements of palliative care and highlights the need to tackle access barriers for the most vulnerable population groups. Innovative collaborative services based around patient, family and wider community are needed to ensure optimal care.

Early Palliative Care Improves Patient and Caregiver Quality of Life.

Patients receiving early palliative care experience improved quality of life, may live longer, and may have earlier referrals to hospice. Caregivers with loved ones receiving early palliative care experience improved communic.

The Secrets of the Backstage: Directing Death Vigils.

Background: The majority of hospice patients are over the age of 65, and the majority of hospice deaths occur in private homes. As a hospice patient's disease progresses, death becomes imminent and family and friends gather around to say good-bye. These private vigils are the culmination of the hospice experience and reflect both the strengths and the challenges surrounding hospice care. The purpose of this study was to explore the stories and experiences of hospice staff with death vigils, unveiling the secrets of home deaths and identifying barriers to a good death. Methods: Qualitative analysis of interviews with 25 hospice staff representing 11 different hospice agencies explored the emotions and challenges of directing and managing the vigil experience. Based on Erving Goffman's dramaturgical model, the experience is explored in depth to unveil a private experience in hopes of enlightening the public on what death in the home looks and feels like. Co-coding of stories and validation of findings by hospice nurses and physicians assure the trustworthiness of the data. Results: Hospice staff share narratives related to family and caregiver burden, challenges with symptom management, frustrations with staffing shortages, and administrative burdens surrounding the experience of death vigils. Conclusions: The family and hospice clinician's experiences with the final act of dying at home are sometimes challenged by the intermittent nature of home care during the final days.

Predicting place of death of patients with advanced cancer receiving home-based palliative care services in Iran.

BACKGROUND: While home is frequently expressed as the favorite place of death (PoD) among terminally ill cancer patients, various factors affect the fulfillment of this wish. The determinants of the PoD of cancer patients in countries without healthcare system-integrated palliative and supportive care have not been studied before. This study aimed at identifying the predictors of the PoD of patients who suffer from advanced cancer by developing a reliable predictive model among who received home-based palliative care in Iran as a representative of the countries with isolated provision of palliative care services. METHODS: In a cross-sectional study, electronic records of 4083 advanced cancer patients enrolled in the Iranian Cancer Control Center (MACSA) palliative homecare program, who died between February 2018 and February 2020 were retrieved. Multivariable binary logistic regression analysis as well as subgroup analyses (location, sex, marital status, and tumor topography) was performed to identify the predictors of PoD. RESULTS: Of the 2398 cases included (mean age (SD) = 64.17 (14.45) year, 1269 (%52.9) male), 1216 (50.7%) patients died at home. Older age, presence and intensity of medical homecare in the last two weeks and registration in the Tehran site of the program were associated with dying at home (P < 0.05). Gynecological or hematological cancers, presence and intensity of the calls received from the remote palliative care unit in the last two weeks were predictors of death at the hospital (p < 0.05). The model was internally and externally validated (AUC = 0.723 (95% CI = 0.702-0.745; P < 0.001) and AUC = 0.697 (95% CI = 0.631-0.763; P < 0.001) respectively). CONCLUSION: Our model highlights the demographic, illness-related and environmental determinants of the PoD in communities with patchy provision of palliative care. It also urges policymakers and service providers to identify and take the local determinant of the place of death into account to match the goals of palliative and supportive services with the patient preferences.

Private Equity Acquisitions Of Hospices Are Increasing; Ownership Remains Opaque.

Private equity ownership across the US health care system is rapidly increasing, yet ownership structures are complex and opaque. We used an economic data set tracking mergers and acquisitions linked to Medicare data to identify private equity hospice acquisitions. Given the influence of for-profit ownership on hospice quality, transparent data on private equity investment are fundamental to ensuring high-quality end-of-life care.