Abraham A Brody

Abstract

Background: The COVID-19 pandemic has resulted in a profound transformation of health care delivery toward telemedicine models. Purpose: We present the structure of a nurse-led telephonic palliative program and operational metrics to influence further development of tele-palliative programs. Methods: The nurses engage with seriously ill patients for 6 months with the goal of discussing advance care planning (ACP) and addressing self-identified issues related to their illness. Findings: Of the first 100 program graduates, 78% were actively engaged and 51% named a health care agent and/or engaged in ACP. Of the 18 patients who died during the study, 13 (72%) were enrolled in hospice services. Discussion: Our preliminary results indicate that seriously ill patients are willing to engage with nurses and to participate with discussions on ACP. Conclusion: Given the gaps in health care exposed by the COVID-19 pandemic, this innovative program serves as an important model for bringing palliative care directly to patients.

Abstract

Background: Palliative care interventions in the ED capture high-risk patients at a time of crisis and can dramatically improve patient-centered outcomes. Objective: To understand the facilitators that contributed to the success of the Primary Palliative Care for Emergency Medicine (PRIM-ER) quality improvement pilot intervention. Design: Effectiveness was evaluated through semi-structured interviews. Reach outcomes were measured by percent of all full-time emergency providers (physicians, physician assistants, nurses) who completed the intervention education components and baseline survey assessing attitudes and knowledge on end-of-life care. Participants: Emergency medicine providers affiliated with two medical centers (N = 197). Interviews conducted with six key informants at both institutions. Approach: Interviews were recorded, transcribed, and analyzed using deductive and inductive approaches. Descriptive statistics include reach outcomes and baseline survey results. Key Results: Both sites successfully implemented all components of the intervention and achieved a high level (> 75%) of intervention reach. Two themes emerged as facilitators to successful effectiveness facilitators of PRIM-ER: (1) institutional leadership support and (2) leveraging established quality improvement (QI) processes. Institutional support included leveraging leadership with authority to (a) mandate trainings; (b) substitute PRIM-ER education for normally scheduled education; and (c) provide protected time to implement intervention components. Effectiveness was also enhanced by capitalizing on existing QI processes which included (a) leveraging interdisciplinary partnerships and communication plans and (b) monitoring performance improvement data. Conclusions: Capitalizing on strong institutional leadership support and established QI processes enhanced the reach and effectiveness of the PRIM-ER pilot. These findings will guide the PRIM-ER researchers in scaling up the intervention in the remaining 33 sites, as well as enhance the planning of other complex quality improvement interventions in clinical settings. Registration Details: ClinicalTrials.gov Identifier: NCT03424109; Grant Number: AT009844-01.

Abstract

Objectives: The ideal clinical model to deliver palliative care to patients with advanced kidney disease is currently unknown. Internationally, ambulatory kidney palliative care clinics have emerged with positive outcomes, yet there is limited data from the United States (US). In this exploratory study we report perceptions of a US-based ambulatory kidney palliative care clinic from the perspective of patient and caregiver attendees. The objective of this study was to inform further improvement of our clinical program. Methods: Semi-structured interviews were conducted to elicit the patient and caregiver experience. Eleven interviews (8 patients with chronic kidney disease stage IV or V and 3 caregivers) were analyzed using qualitative description design. Results: We identified 2 themes: “Communication addressing the emotional and physical aspects of disease” and “Filling gaps in care”; Subthemes include perceived value in symptom management, assistance with coping with disease, engagement in advance care planning, program satisfaction and patient activation. Significance of Results: Qualitative analysis showed that attendees of an ambulatory kidney palliative care clinic found the clinic enhanced the management of their kidney disease and provided services that filled current gaps in their care. Shared experiences highlight the significant challenges of life with kidney disease and the possible benefits of palliative care for this population. Further study to determine the optimal model of care for kidney palliative care is needed. Inclusion of the patient and caregiver perspective will be essential in this development.

Abstract

Adult day service centers (ADSCs) provide community-based long-term care, including meals, to racially diverse older adults, 47% of whom have dementia and consequently experience elevated nutritional risk. We examine nutritional behaviors for Chinese and Vietnamese persons living with dementia (PLWD) in ADSCs and evaluate the extent to which ADSCs provide person-centered nutritional care. Multi-stakeholder interviews were conducted. Data were coded using Dedoose and analyzed using Braun and Clarke’s six-step method. The Model for the Provision of Good Nutritional Care in Dementia guided analysis. Barriers to food intake included distracting meal environment, rigid mealtimes, and excessively restrictive diets. Conversely, peer relationships, culturally tailored meals and celebrations, and consistent staff assisting with feeding benefited PLWD. ADSCs can support healthy nutritional behaviors and quality of life among PLWD through person-centered nutritional care. To optimize nutritional services, further exploration is needed with respect to the ADSC environment, users’ culture and ethnicity, and liberalized diets for PLWD.

Abstract

Background/Objectives: COVID-19 required rapid innovation throughout the healthcare system. Home-based primary care (HBPC) practices faced unique challenges maintaining services for medically complex older populations for whom they needed to adapt a traditionally hands-on, model of care to accommodate restrictions on in-person contact. Our aim was to determine strategies used by New York City (NYC)-area HBPC practices to provide patient care during the first wave of the COVID-19 pandemic with the goal of informing planning and preparation for home-based practices nationwide. Design: Cross-sectional qualitative design using semi-structured interviews. Setting: HBPC practices in the NYC metro area during spring 2020. Participants: HBPC leadership including clinical/medical directors, program managers, nurse practitioners/nursing coordinators, and social workers/social work coordinators (n = 13) at 6 NYC-area practices. Measurements: Semi-structured interviews explored HBPC practices' COVID-19 care delivery challenges, adaptations, and advice for providers. Interviewers probed patient care, end-of-life care, telehealth, community-based services and staffing. Interviews were recorded and transcribed. Data were analyzed through a combined inductive and deductive thematic approach. Results: Participants described care delivery and operational adaptations similar to those universally adopted across healthcare settings during COVID-19, such as patient outreach and telehealth. HBPC-specific adaptations included mental health services for patients experiencing depression and isolation, using multiple modalities of patient interactions to balance virtual care with necessary in-person contact, strategies to maintain patient trust, and supporting team connection of staff through daily huddles and emotional support during the surge of deaths among long-standing patients. Conclusion: NYC-area HBPC providers adapted care delivery and operations rapidly during the height of the COVID-19 pandemic. Keeping older, medically complex patients safe in their homes required considerable flexibility, transparency, teamwork, and partnerships with outside providers. As the pandemic continues to surge around the United States, HBPC providers may apply these lessons and consider resources needed to prepare for future challenges.

Abstract

Background: Forty-five percent of hospice patients currently have a primary or secondary diagnosis of Alzheimer’s disease or related disorders. However, few programs have focused specifically on assisting hospices in providing evidence-based symptom management to persons living with dementia (PLWD). Objective: To adapt and pilot the training component of Aliviado Dementia Care, a dementia symptom management quality improvement program originally developed for home healthcare, for use by social workers as part of the hospice interdisciplinary team. Design: A prospective pre-post design was utilized, measuring knowledge, confidence, and attitudes at baseline, and immediately and 1-month post-training. Analysis was performed using paired t-tests and repeated measures ANOVA. Subjects: Hospice social workers currently practicing in the United States with at least 1 year of experience. Measurements: The Dementia Symptom Knowledge Assessment and a post-training continuing education evaluation form. Results: Forty-six subjects were enrolled, of whom 26 completed the first post-test and 23 both post-tests. There was a poor baseline level of knowledge and confidence in caring for PLWD. Significant improvements occurred following training, particularly in implementing non-pharmacologic interventions for behavioral and psychological symptoms of dementia (BPSD) (16.64% increase, p <.0001) and confidence in managing behavioral symptoms (16.86%, p =.01) and depression (25.18%, p <.0001). Changes were maintained over time. All respondents were either very satisfied or satisfied with the quality and content of the program. Conclusions: The training modules of Aliviado Dementia Care were successfully tailored for use by hospice social workers, showing significant improvement in knowledge and confidence in caring for behavioral symptoms in PLWD. Future work will examine whether the larger program, including this training, can subsequently improve patient outcomes in hospice.

Abstract

Objective: Seriously ill adults with multiple chronic conditions (MCC) who receive palliative care may benefit from improved symptom burden, health care utilization and cost, caregiver stress, and quality of life. To guide research involving serious illness and MCC, palliative care can be integrated into a conceptual model to develop future research studies to improve care strategies and outcomes in this population. Methods: The adapted conceptual model was developed based on a thorough review of the literature, in which current evidence and conceptual models related to serious illness, MCC, and palliative care were appraised. Factors contributing to patients’ needs, services received, and service-related variables were identified. Relevant patient outcomes and evidence gaps are also highlighted. Results: Fifty-eight articles were synthesized to inform the development of an adapted conceptual model including serious illness, MCC, and palliative care. Concepts were organized into 4 main conceptual groups, including Factors Affecting Needs (sociodemographic and social determinants of health), Factors Affecting Services Received (health system; research, evidence base, dissemination, and health policy; community resources), Service-Related Variables (patient visits, service mix, quality of care, patient information, experience), and Outcomes (symptom burden, quality of life, function, advance care planning, goal-concordant care, utilization, cost, death, site of death, satisfaction). Discussion: The adapted conceptual model integrates palliative care with serious illness and multiple chronic conditions. The model is intended to guide the development of research studies involving seriously ill adults with MCC and aid researchers in addressing relevant evidence gaps.

Abstract

Sixteen million caregivers currently provide care to more than 5 million persons living with dementia (PLWD) in the United States. Although this population is growing and highly complex, evidence-based management remains poorly integrated within healthcare systems. Therefore, the National Institute on Aging IMPACT Collaboratory was formed to build the nation's ability to conduct embedded pragmatic clinical trials (ePCTs) for PLWD and their caregivers. The pilot core of the IMPACT Collaboratory seeks to provide funds for upward of 40 pilots for ePCTs to accelerate the testing of nonpharmacologic interventions with the goal that these pilots lead to full-scale ePCTs and eventually the embedding of evidence-based care into healthcare systems. The first two challenges for the pilot core in building the pilot study program were (1) to develop a transparent, ethical, and open nationwide process for soliciting, reviewing, and selecting pilot studies; and (2) to begin the process of describing the necessary components of a pilot study for an ePCT. During our initial funding cycle, we received 35 letters of intent, of which 17 were accepted for a full proposal and 14 were submitted. From this process we learned that investigators lack knowledge in ePCTs, many interventions lack readiness for an ePCT pilot study, and many proposed studies lack key pragmatic design elements. We therefore have set three key criteria that future pilot studies must meet at a minimum to be considered viable. We additionally discuss key design decisions investigators should consider in designing a pilot study for an ePCT. J Am Geriatr Soc 68:S14–S20, 2020.

Abstract

Background: Many patients with serious kidney disease have an elevated symptom burden, high mortality, and poor quality of life. Palliative care has the potential to address these problems, yet nephrology patients frequently lack access to this specialty. Objectives: We describe patient demographics and clinical activities of the first 13 months of an ambulatory kidney palliative care (KPC) program that is integrated within a nephrology practice. Design/Measurements: Utilizing chart abstractions, we characterize the clinic population served, clinical service utilization, visit activities, and symptom burden as assessed using the Integrated Palliative Care Outcome Scale-Renal (IPOS-R), and patient satisfaction. Results: Among the 55 patients served, mean patient age was 72.0 years (standard deviation [SD] = 16.7), 95% had chronic kidney disease stage IV or V, and 46% had a Charlson Comorbidity Index >8. The mean IPOS-R score at initial visit was 16 (range = 0-60; SD = 9.1), with a mean of 7.5 (SD = 3.7) individual physical symptoms (range = 0-15) per patient. Eighty-seven percent of initial visits included an advance care planning conversation, 55.4% included a medication change for symptoms, and 35.5% included a dialysis decision-making conversation. Overall, 96% of patients who returned satisfaction surveys were satisfied with the care they received and viewed the KPC program positively. Conclusions: A model of care that integrates palliative care with nephrology care in the ambulatory setting serves high-risk patients with serious kidney disease. This KPC program can potentially meet documented gaps in care while achieving patient satisfaction. Early findings from this program evaluation indicate opportunities for enhanced patient-centered palliative nephrology care.

Abstract

With the onset of the COVID-19 pandemic, telehealth was thrust to the forefront, becoming one of the most predominant forms of care almost overnight. Despite years of research, practice, and policymaking, tenets for providing telehealth in an interdisciplinary, family- and person-centered fashion, and across a wide breadth of settings remain underdeveloped. In addition, although telehealth has the potential to increase equity in care, it can also further exacerbate disparities. The current article discusses the opening created by the pandemic and provides recommendations for how to make permanent changes in telehealth policy and practice to allow for interdisciplinary, person- and family-centered care while also taking care to address issues of equity and ethics and privacy issues related to telehealth and remote monitoring. [Journal of Gerontological Nursing, 46(9), 9-13.]