Komal Patel Murali

Abstract

The rising prevalence of Alzheimer's disease and Alzheimer's disease-related dementias has led to renewed public discourse and policy changes in response to the care needs of persons living with dementia and their care partners. Comprehensive dementia care models are central to many recent policy initiatives, most notably the Centers for Medicare & Medicaid Services Guiding an Improved Dementia Experience model. Gerontological nursing research is uniquely positioned to design and lead research investigating the effectiveness of these initiatives, as well as the dissemination and scaling of existing comprehensive dementia care models. The current Annual State of the Science Review provides an overview of the current state of comprehensive dementia care models in the United States and relevant policies. Challenges and opportunities for nursing education, research, and implementation across the translational research continuum are also outlined. [Research in Gerontological Nursing, 18(1), 7-16.].

Abstract

Palliative care improves the quality of life for seriously ill patients, but misconceptions and knowledge gaps hinder its implementation in home healthcare (HHC). This study developed and pilot-tested HHC-specific questionnaires to measure palliative care knowledge, attitudes, and confidence (PC-KAC) among clinicians, patients, and caregivers. Using literature reviews, expert input, and cognitive interviews, the questionnaires were refined to ensure clarity, practical relevance, and content validity. Pilot testing revealed widespread confusion about palliative care, with patients and caregivers often conflating it with hospice care and holding misconceptions about opioid use for pain and symptom management. While clinicians demonstrated adequate knowledge, gaps in pain management and confidence in handling emergencies were evident. These findings highlight the need for targeted education and training to integrate palliative care effectively into HHC, improving patient outcomes and supporting interdisciplinary collaboration.</jats:p>

Abstract

Background and Objectives: Goal-concordant transition to hospice is an important facet of end-of-life care for people living with dementia. The objective of this integrative review was to appraise existing evidence and gaps focused on interventions and predictors of transition to hospice and end-of-life care for persons living with dementia across healthcare to inform future research. Research Design and Methods: Using integrative review methodology by Whittemore and Knafl, 5 databases were searched (PubMed, CINAHL, Web of Science, Google Scholar, and Cochrane Database for Systematic Reviews) for articles between 2000 and 2023. The search focused on dementia, hospice care, transitions, care management and/or coordination, and intervention studies. Results: Fourteen articles met inclusion criteria after critical appraisal. Most were cross-sectional in design and conducted in nursing homes and hospitals in the U.S. persons living with dementia had multiple chronic conditions including cancer, diabetes, heart disease, and stroke. Interventions included components of hospice decision-making delivered through advance care planning, checklist-based care management for hospice transition, and palliative care for those with severe dementia. Predictors included increasing severity of illness including functional decline, organ failure, intensive care use, and the receipt of palliative care. Other predictors were related to insurance status, race and ethnicity, and caregiver burden. Overall, despite moderate to high-quality evidence, the studies were limited in scope and sample and lacked racial and ethnic diversity. Discussion and Implications: Prospective, multisite randomized trials and population-based analyses including larger and diverse samples are needed for improved end-of-life dementia illness counseling and hospice care transitions for persons living with dementia and their caregivers.

Abstract

BACKGROUND AND OBJECTIVES: Goal-concordant transition to hospice is an important facet of end-of-life care for people living with dementia. The objective of this integrative review was to appraise existing evidence and gaps focused on interventions and predictors of transition to hospice and end-of-life care for persons living with dementia across healthcare to inform future research.RESEARCH DESIGN AND METHODS: Using integrative review methodology by Whittemore and Knafl, five databases were searched (PubMed, CINAHL, Web of Science, Google Scholar, Cochrane Database for Systematic Reviews) for articles between 2000 and 2023. The search focused on dementia, hospice care, transitions, care management and/or coordination, and intervention studies.RESULTS: Fourteen articles met inclusion criteria after critical appraisal. Most were cross-sectional in design and conducted in nursing homes and hospitals in the U.S. persons living with dementia had multiple chronic conditions including cancer, diabetes, heart disease, and stroke. Interventions included components of hospice decision-making delivered through advance care planning, checklist-based care management for hospice transition, and palliative care for those with severe dementia. Predictors included increasing severity of illness including functional decline, organ failure, intensive care use, and the receipt of palliative care. Other predictors were related to insurance status, race and ethnicity, and caregiver burden. Overall, despite moderate to high-quality evidence, the studies were limited in scope and sample and lacked racial and ethnic diversity.DISCUSSION AND IMPLICATIONS: Prospective, multisite randomized trials and population-based analyses including larger and diverse samples are needed for improved end-of-life dementia illness counseling and hospice care transitions for persons living with dementia and their caregivers.

Abstract

Background: The growing prevalence of multiple chronic conditions (MCC) has significant impacts on health care systems and quality of life. Understanding the prevalence of MCC throughout adulthood offers valuable insights into the evolving burden of chronic diseases and provides strategies for more effective health care outcomes. Objective: This study estimated the prevalence and combinations of MCC among adult participants enrolled in the All of Us (AoU) Research Program, especially studying the variations across age categories. Methods: We conducted an exploratory analysis using electronic health record (EHR) data from adult participants (N=242,828) in the version 7 Controlled Tier AoU Research Program data release. Data analysis was conducted using Python in a Jupyter notebook environment within the AoU Researcher Workbench. Descriptive statistics included condition frequencies, the number of chronic conditions per participant, and prevalence according to age categories. The presence of a chronic condition was determined by documentation of one or more ICD-10 (International Statistical Classification of Diseases, Tenth Revision) codes for the respective condition. Age categories were established and aligned with diagnosis dates and stages of adulthood (early adulthood: 18-39 years; middle adulthood: 40-49 years; late middle adulthood: 50-64 years; late adulthood: 65-74 years; advanced old age: 75-89 years). Results: Our findings demonstrated that approximately 76% (n=183,753) of AoU participants were diagnosed with MCC, with over 40% (n=98,885) having 6 or more conditions and prevalence increasing with age (from 33.78% in early adulthood to 68.04% in advanced old age). The most frequently occurring MCC combinations varied by age category. Participants aged 18-39 years primarily presented mental health–related MCC combinations (eg, anxiety and depressive disorders; n=845), whereas those aged 40-64 years frequently had combinations of physical conditions such as fibromyalgia, chronic pain, fatigue, and arthritis (204 in middle adulthood and 457 in late middle adulthood). In late adulthood and advanced old age, hyperlipidemia and hypertension were the most commonly occurring MCC combinations (n=200 and n=59, respectively). Conclusions: We report notable prevalence of MCC throughout adulthood and variability in MCC combinations by age category in AoU participants. The significant prevalence of MCC underscores a considerable public health challenge, revealed by distinct condition combinations that shift across different life stages. Early adulthood is characterized predominantly by mental health conditions, transitioning to cardiometabolic and physical health conditions in middle, late, and advanced ages. These findings highlight the need for targeted, innovative care modalities and population health initiatives to address the burden of MCC throughout adulthood.

Abstract

Background: Spiritual care provided by chaplains plays a key role in cancer care in the United States, yet little is known about chaplaincy utilization among people of Dharmic religions (Hinduism, Buddhism, Sikhism, Jainism) with cancer. Methods: This multi-methods study reviewed the records of patients (aged 18 years and older) who were hospitalized at a dedicated cancer hospital (2015–2019) and conducted interviews with chaplains and adults of Dharmic religions (2020). Primary outcomes included measuring chaplaincy utilization (at least one chaplain visit) across different religions and identifying perceptions of chaplaincy. Secondary outcomes involved measuring unmet spiritual needs on admission, types of spiritual care needs, and variables associated with chaplaincy utilization. Results: Of 54,828 patients, 2% were of Dharmic religions (n = 1163; 58.4% Hindu, 33.2% Buddhist, 4.8% Sikh, 3.4% multiple, <1% Jain). Compared with others, those of Dharmic religions were younger (median age, 59 vs. 63 years; p <.001), predominantly East or South Asian (78.7% vs. 5.6%; p <.001), and had higher rates of advanced illness (22.6% vs. 15.2%; p <.001) but lower chaplaincy utilization (31.6% vs. 36.7%; p <.001). There were no significant differences in unmet spiritual needs on admission (Dharmic religions vs. others, 8.7% vs. 9.4%; p =.41). Ritual care was the most frequently documented spiritual care need (72%). Multivariable analysis indicated that longer length of stay, non-Dharmic religion, and advanced illness were associated with higher chaplaincy utilization. Themes identified from the interviews included unfamiliarity with chaplaincy, concerns about faith-discordant care, addressing spiritual care needs independently, and solutions for concordant care. Conclusions: People of Dharmic religions with cancer were less likely to use chaplaincy services. Barriers included unfamiliarity and faith discordance. Spiritual care incorporating faith-specific resources is urgently needed.

Abstract

Background: In the United States, nearly 1 million older adults reside in assisted living facilities, which aim to provide support for safe, autonomous living. However, low-income residents, especially those in Medicaid-supported facilities, experience unmet medical and social complex care needs and limited serious illness communication due to limited resources. Objective: The objective of this study was to explore the complex care needs and serious illness communication challenges experienced by low-income older adults in Medicaid-supported assisted living. Methods: A qualitative secondary framework analysis was conducted on data from a parent qualitative study involving 17 residents aged 60 and older with serious illnesses at a Medicaid-supported facility in New York City. Residents completed the Edmonton Symptom Assessment Scale and participated in semistructured interviews. This study was guided by the National Consensus Project for Quality Palliative Care, focusing on the residents’ experiences, complex care needs, and communication within palliative care domains. Results: Residents were predominantly Black and Hispanic, with nearly one-third having a history of homelessness or shelter use, and they experienced a high symptom burden. Four key themes emerged: (1) compromised quality of life; (2) high symptom burden and limited access to care, with residents reporting pain, fatigue, and emotional distress; (3) communication gaps while navigating health care, resulting in frustration and feelings of being unheard; and (4) fragmented care coordination, which exacerbated feelings of isolation and mistrust in the health care system. Conclusion: The findings reveal that Medicaid-supported assisted living residents encounter substantial challenges related to complex care needs and serious illness communication. There is an urgent need for community-based interventions to enhance care access, improve symptom management, and facilitate effective communication, ultimately supporting the residents’ quality of life and health outcomes. Enhanced training for staff and policy changes are key to addressing these systemic barriers to care.

Abstract

Background: In the United States, nearly 1 million older adults reside in assisted living facilities, which aim to provide support for safe, autonomous living. However, low-income residents, especially those in Medicaid-supported facilities, experience unmet medical and social complex care needs and limited serious illness communication due to limited resources. Objective: The objective of this study was to explore the complex care needs and serious illness communication challenges experienced by low-income older adults in Medicaid-supported assisted living. Methods: A qualitative secondary framework analysis was conducted on data from a parent qualitative study involving 17 residents aged 60 and older with serious illnesses at a Medicaid-supported facility in New York City. Residents completed the Edmonton Symptom Assessment Scale and participated in semistructured interviews. This study was guided by the National Consensus Project for Quality Palliative Care, focusing on the residents’ experiences, complex care needs, and communication within palliative care domains. Results: Residents were predominantly Black and Hispanic, with nearly one-third having a history of homelessness or shelter use, and they experienced a high symptom burden. Four key themes emerged: (1) compromised quality of life; (2) high symptom burden and limited access to care, with residents reporting pain, fatigue, and emotional distress; (3) communication gaps while navigating health care, resulting in frustration and feelings of being unheard; and (4) fragmented care coordination, which exacerbated feelings of isolation and mistrust in the health care system. Conclusion: The findings reveal that Medicaid-supported assisted living residents encounter substantial challenges related to complex care needs and serious illness communication. There is an urgent need for community-based interventions to enhance care access, improve symptom management, and facilitate effective communication, ultimately supporting the residents’ quality of life and health outcomes. Enhanced training for staff and policy changes are key to addressing these systemic barriers to care.

Abstract

The purpose of this article was to analyze the concept of "the fighter in the intensive care unit (ICU)"per the scientific literature and the impact this mentality has on care administered in the ICU. A literature review and a concept analysis based on Rodger's evolutionary method were performed to identify surrogate terms, antecedents, attributes, and consequences pertaining to the "fighter"in the ICU. Thirteen articles with a focus on "the fighter"were included in this analysis. There is a strong desire to remain optimistic and maintain high spirits as a coping mechanism in the face of extreme prognostic uncertainty. Themes that emerged from the literature were the need to find inner strength and persist in the face of adversity. The concept of "the fighter in the ICU"can serve as either adaptive or maladaptive coping, depending on the larger clinical picture. Patient experiences in the ICU are fraught with physical and psychological distress. How the patient and family unit cope during this anxiety-provoking time is based on the individual. Maintaining optimism and identifying as a fighter can be healthy ways to adapt to the circumstances. This concept analysis highlights the importance of holistic care and instilling hope particularly as patients may be nearing the end of life.

Abstract

BACKGROUND: Social determinants of health (SDOH) may influence the clinical management of patients with heart failure. Further research is warranted on the relationship between SDOH and Ventricular Assist Device (VAD) therapy for heart failure.OBJECTIVES: The purpose of this integrative review was to synthesize the state of knowledge on the intersection of SDOH with VAD therapy.METHODS: Guided by Whittemore and Knafl's methodology, this literature search captured three concepts of interest including VAD therapy, SDOH, and their domains of intersection with patient selection, decision-making, treatment outcome, and resource allocation. CINAHL, Embase, PsycINFO, PubMed, and Web of Science were searched in March 2023. Articles were included if they were peer-reviewed publications in English, published between 2006 and 2023, conducted in the United States, and examined VAD therapy in the context of adult patients (age ≥ 18 years).RESULTS: 22 quantitative studies meeting the inclusion criteria informed the conceptualization of SDOH using the Healthy People 2030 framework. Four themes captured how the identified SDOH intersected with different processes relating to VAD therapy: patient decision-making, healthcare access and resource allocation, patient selection, and treatment outcomes. Most studies addressed the intersection of SDOH with healthcare access and treatment outcomes.CONCLUSION: This review highlights substantial gaps in understanding how SDOH intersect with patient and patient selection for VAD. More research using mixed methods designs is warranted. On an institutional level, addressing bias and discrimination may have mitigated health disparities with treatment outcomes, but further research is needed for implementing system-wide change. Standardized assessment of SDOH is recommended throughout clinical practice from patient selection to outpatient VAD care.