Search

Use of palliative care interventions in chronic obstructive pulmonary disease (COPD) has increased in recent years and inclusion criteria used to identify patients with COPD appropriate for palliative care vary widely. We evaluated the inclusion criteria to identify ways to improve enrollment opportunities for patients with COPD. To determine inclusion criteria used to select patients with COPD for palliative care trials. A systematic review was conducted to determine criteria used to select patients with COPD for palliative care randomized controlled trials. A narrative synthesis was conducted for all trials. Inclusion criteria were highly heterogeneous. Most studies (n = 11, 79%) used a combination of criteria to identify patients with COPD. Commonly used criteria included hospitalization for an acute exacerbation of COPD (n = 8, 57%), home supplemental oxygen use (n = 8, 57%), and spirometry values confirming COPD (n = 6, 43%). Three studies (21.4%) used Modified Medical Research Council score and two studies (21%) used physician prognosis or a performance scale. The most common criteria, a hospitalization for acute exacerbation of COPD or supplemental oxygen use at home, both have the benefit of selecting patients who have a higher symptom burden or higher healthcare utilization who might therefore benefit more from palliative care. By describing the landscape and variability of previously used inclusion criteria, this article serves as a resource for clinicians and researchers. Developing a consistent set of inclusion criteria in the future would help generate generalizable results that can be translated into clinical practice to improve the lives of patients with COPD. CRD42022306752. [ABSTRACT FROM AUTHOR]

Opioids are a first-line treatment for severe cancer pain. However, clinicians may be reluctant to prescribe opioids for patients with concurrent substance use disorders (SUD) or clinical concerns about non-prescribed substance use. Patient volume, 60-day retention rate, and use of sublingual buprenorphine to treat opioid use disorder. We created the Palliative Harm Reduction and Resiliency Clinic, a palliative care clinic founded on harm reduction principles and including formal collaboration with addiction psychiatry. During the first 18 months, patient volume increased steadily; 70% of patients had at least one subsequent visit within 60 days of the initial appointment; and buprenorphine was prescribed for 55% of patients with opioid use disorder. The formal collaboration with addiction psychiatry and the integration of harm reduction principles and practices into ambulatory palliative care improved our ability to provide treatment to a previously underserved patient population with high symptom burden. [ABSTRACT FROM AUTHOR]

Despite the growing needs in nondialytic alternatives for conservative kidney management, few studies have examined the management of anemia in palliative care (PC) outpatient clinics, which represent the key point of entry for timely access to PC. A retrospective study to review for a patient-centered approach in anemia management and symptom control. Over the study period from July 2020 to March 2023, a total of 158 patients were seen at our renal PC clinic, 47 were included in data analysis. Patients had a mean age and glomerular filtration rate of 81.3 (9.5) years and 8.6 (5.3) mL/min/1.73 m2, and 68.1% and 44.7% were receiving erythropoiesis-stimulating agents (ESAs) and iron supplements respectively, with only 4.3% of patients required transfusion over past six months. Mean hemoglobin was maintained at 9.8 (1.4) g/dL, with a mean POS-S renal score of 4.7 (3.2). Majority of patients (93.6%) had satisfactory rating on "weakness and lack of energy" item. A patient-centered approach in anemia management at renal PC outpatient clinics may alleviate symptom burden and minimize transfusion requirement. [ABSTRACT FROM AUTHOR]

The characteristics of patients who had never received anticancer treatments at admission of an acute supportive palliative care unit (ASPCU) have never been explored. From a consecutive sample of 422 advanced cancer patients, 62 patients with no previous anticancer therapy were selected and compared with a random sample of patients who had received anticancer treatments. Age, gender, primary tumor, Karnofsky status, characteristics of admission, the level of education, economic status, awareness of disease, the presence of cachexia, and comorbidities and palliative prognostic score, symptom intensity, opioid drugs used at admission, reasons for admission to APSCU were recorded in both groups. At time of discharge, ESAS and analgesic drugs used were recorded again. Discharge modalities were also recorded. One month after the end of recruitment period (the last patient enrollment), a follow-up was performed by phone contacts with relatives to assess survival at three months after discharge. Patients without previous anticancer therapy (14.7%) were mainly admitted to ASPCU for a low Karnofsky level and high symptom burden, often waiting for or needing a histological diagnosis to make a decision for the next therapeutic steps. This group of patients were older (P <0.0005), more frequently males (P =0.007), and had more comorbidities (P <0.0005) in comparison with treated patients. Twenty-four per cent of these patients started chemotherapy subsequently. Treatment-naive patients had a higher level of symptom burden, which was less responsive to a comprehensive palliative and more frequently died within three months in comparison with treated patients. Treatment-naive patients showed a higher level of symptom burden, which was less responsive to a comprehensive palliative treatment. In addition they more frequently died within three months in comparison with treated patients. [ABSTRACT FROM AUTHOR]

1. Attendees will gain an understanding of the unique aspects of palliative care provision to patients with end-stage kidney disease on dialysis and scalable knowledge that can be applied to the development and implementation of novel models of early non-malignant palliative care in similar ambulatory patient settings. 2. Attendees will gain an understanding of the methodology of a process evaluation, which can be employed to develop supporting evidence for innovations in palliative care provision. Using a mixed methods process evaluation with a chart review and qualitative interviews, this research evaluated a novel collaborative palliative care clinic for patients with end-stage kidney disease on dialysis. Results suggest the model is feasible, beneficial, and will inform future delivery of early outpatient palliative care in non-malignant diseases. End-stage kidney disease (ESKD) is a life-limiting illness with high symptom burden and mortality. Patients with ESKD on dialysis have decreased quality of life and greater health services usage at end-of-life.1 Despite established benefits of palliative care (PC), patients with ESKD experience inequitable access when compared to patients with cancer.2 Research is required to identify the optimal model for provision of early outpatient PC for patients with ESKD on dialysis. To perform a process evaluation of a novel outpatient PC clinic for patients with ESKD in Ottawa by developing a logic model of the clinic and assessing five process evaluation domains. Clinic success is determined by achievement of logic model outcomes and performance in domains of fidelity, patient experience, reach, recruitment, and context. Evaluation inputs entail an ongoing chart review and qualitative interviews with healthcare providers (HCPs), patients, and caregivers. Analysis entails descriptive statistics, thematic analysis, and mixed methods triangulation. The PC clinic received 98 referrals from 2020 to 2023. 76 patients were seen in consultation, of whom 61 received follow-up. 14 HCPs, three patients, and six caregivers were interviewed. Patients experienced support for quality of life and optimization of goal-concordant care. Caregivers' needs, including support in symptom management, were met by the PC clinic. Patient needs previously unmet by the nephrology team alone were addressed by the PC team, including care transitions. PC visits occurring during dialysis sessions were perceived as beneficial, despite additional arrangements required to ensure privacy. Results of the clinic evaluation demonstrated successful processes of care and a promising impact on desired outcomes of the logic model. Participants affirmed the benefits of care provided by the PC clinic and supported continued patient access. Study findings will inform early outpatient PC for patients with ESKD and guide future development of PC clinics for other organ failure. [ABSTRACT FROM AUTHOR]

1. Utilizing case studies informed by qualitative data from recorded chaplain-patient encounters, participants will be able to articulate spiritual needs and resources impacting care plans for patients with ALS receiving palliative care. 2. Utilizing preliminary data from validated symptom assessment measures, participants will self-report components for collaboration with interprofessional team members (e.g. chaplains) in spiritually-informed care's relationship with quality of life. This project assesses spiritual well-being amongst palliative care outpatients with ALS using the evidenced-based chaplain-led Spiritual Assessment and Intervention (AIM) Model. Spirituality may be a method of coping for patients, but needs related to this are not routinely addressed in clinic, and the role of a chaplain in outpatient settings has been poorly defined. Data describing potential effects of spiritual interventions in ALS is limited. 1) To describe the spiritual well-being, dignity, and symptoms among outpatients with ALS using Spiritual AIM, 2) To assess the feasibility of use of Spiritual AIM with ALS patients in outpatient palliative care. Audio-recorded interviews were analyzed for themes. Pre- and post-study questionnaires assessed symptoms, QOL, and spiritual wellbeing. Quantitative analysis of validated tools included Modified Medical Research Council Dyspnea Scale (MMRC), The Patient Health Questionnaire-2 (PHQ-2), Edmonton Symptom Assessment System (ESAS-R), The Functional Assessment of Chronic Illness Therapy- Spiritual Well-Being 12 Item Scale (FACIT-Sp-12), and Spiritual Wellbeing Assessment (SWB). We recruited 10 patients with ALS, of whom five completed three one-hour chaplain visits utilizing the Spiritual AIM Model over four months. Quantitative analyses indicated themes of isolation, loss of independence, depression, and vulnerability. Despite these, several patients expressed finding gratitude in the midst of their disease. Spiritual needs indicated existential distress as evidenced by the Spiritual AIM Model, with a need to identify a meaning in disease and a direction or purpose. ALS patients described unmet spiritual needs and themes of distress, including isolation, loss of independence, and vulnerability. The Spiritual AIM Model serves to identify patients' spiritual needs and provide a framework for the interprofessional care team to target these, providing a method for further advancement of ALS care. Several themes for future study emerged including the role of meaning, gratitude and sense of purpose as spiritual resources to cope with existential suffering. This study also highlights challenges of recruitment and retention given severity of illness and symptom burden for this population. [ABSTRACT FROM AUTHOR]

1. Examine a collaborative approach for developing criteria for nephrologists to consider referring patients with advanced CKD to palliative care, exploring the potential role of race in this process. 2. Describe the PC needs of patients with advanced CKD, by recalling the content of palliative care visits with patients with advanced CKD. A pilot study embedding palliative care (PC) into nephrology disproportionately engaged patients of diverse racial backgrounds with advanced CKD in decision-making around dialysis and addressed symptoms. This collaborative approach to PC delivery may help identify the cultural needs of a community and assist with better informed advance care planning. Under 10% of patients on dialysis discuss goals and values with their nephrologist (N), although nearly 90% want this conversation. Patients with advanced chronic kidney disease (CKD) have substantial symptom burden and face a high-stakes medical decision, yet rarely have palliative care (PC) involvement. In this pilot of integrating PC into Nephrology (N) clinic, we describe the process of identifying CKD patients with PC needs and the content of PC visits. N and PC clinicians collaboratively determined criteria for PC: 1) age >70, CKD 5; 2) age >70, CKD 4 and diabetes or cardiac disease; 3) age >80 and CKD 4 or 5. N received weekly emails with names of eligible patients. If referred, PC saw patients in N clinic before or after the N team, following them later in PC clinic as needed. Of 1143 patients screened, 129 (11.2%) met PC criteria, 42 (32.6%) were referred and 18 (14.0%) were seen by PC. Characteristics of patients seen by PC include: 72.2% female; 66.7% Asian, 33.3% Black; 50% married; average age 82.8 years (71 to 92); 66.7% non-English speaking. During first visits, PC addressed: 100% advance care planning, 77.8% symptoms, 72.2% dialysis with 69.2% expressing preferences to decline dialysis. During the pilot and 6 months following, patients saw PC 2.4 times (1 to 5); 38.9% admitted to hospital; 5.6% in ICU; none died. PC successfully integrated into a N clinic, engaging a racially diverse sample of patients with advanced CKD. Coordinating care between N and PC allowed patients to discuss treatment options, such as dialysis, and to address symptoms. This pilot included an unexpectedly racially diverse sample with no white patients, which the authors intend to explore further. Models of Palliative Care Delivery / Shared Decision Making / Advance Care Planning [ABSTRACT FROM AUTHOR]

1. Describe the benefits of a longitudinal model of specialty-aligned inpatient palliative care for patients with advanced liver disease. 2. Understand key areas of need to improve end-of-life care delivery for patients with advanced liver disease. We explored perspectives on a longitudinal specialty-aligned palliative care intervention for hospitalized patients with advanced liver disease (AdvLD) through qualitative interviews with patients, caregivers, and inpatient clinicians. Respondents highlighted that longitudinal palliative care delivery promoted trust and facilitated serious illness conversations and symptom management for hospitalized patients with AdvLD. Areas of ongoing need included improving transitional and end-of-life care. Hospitalized patients with advanced liver disease (AdvLD) experience substantial symptom burden, frequent readmissions, and high mortality, yet palliative care is underutilized for this population. We explored the benefits and areas of ongoing need of a longitudinal specialty-aligned palliative care intervention for hospitalized patients with AdvLD through qualitative interviews with patients, caregivers, and inpatient clinicians. Between 6/2022-9/2022, we conducted individual interviews with recently hospitalized adult (age ≥18) patients with AdvLD, their caregivers and their inpatient clinicians (internal medicine, hepatology, critical care, transplant surgery, palliative care) enrolled in an inpatient palliative care clinical trial. We asked participants their perspectives regarding delivery of longitudinal specialty-aligned inpatient palliative care to enrolled patients. We conducted a team-based qualitative thematic analysis using a multistage iterative approach, including both prefigured and emergent dimensions. Nineteen individuals (3 patients, 3 caregivers, 13 clinicians) participated in interviews. Benefits of the intervention were identified across all participant groups. Respondents highlighted the value of the palliative care team providing longitudinal care across multiple readmissions, which provided a broader picture understanding of the patients and their disease trajectory to inpatient teams and their caregivers. The longitudinal model of care resulted in trust from all participants, which facilitated serious illness conversations and inpatient symptom management of pain, depression, and anxiety by the palliative care team. Areas of ongoing need varied across participant groups. Clinicians highlighted a need for improved care coordination to allow for ongoing palliative care delivery in the outpatient setting. All participant groups highlighted the need to improve management of refractory ascites and hepatic encephalopathy at end-of-life. A longitudinal model of specialty-aligned palliative care promoted trust and facilitated serious illness conversations and symptom management for hospitalized patients with AdvLD. Next steps include developing processes and education to improve transitional and end-of-life care of patients with AdvLD. Models of Palliative Care Delivery / Scientific Research [ABSTRACT FROM AUTHOR]

1. Participants will be able to understand the pathophysiology of sickle cell disease including complications of the disease and its impact on quality of life within physical, psychological, social, racial and emotional domains. 2. Participants will be able to define the palliative care needs of patients with sickle cell disease and communicate the role of palliative care in improving the quality of life in this patient population. Palliative Care (PC) has largely been uninvolved in Sickle Cell Disease (SCD) care despite the argument that SCD patients have high symptom burden, poor quality of life, and early mortality. This talk aims to define potential roles for PC in caring for this population and hopes to garner further energy around a growing area of interest within our field. Sickle cell disease (SCD) is an inherited, life-limiting condition with significant morbidity across the lifespan; affecting 1 in every 365 Black children born in the United States and nearly 400,000 neonates born globally each year. Beginning in childhood, patients with SCD experience high symptom burden with frequent pain crises and complications from multi-organ involvement, leading to poor health-related quality of life. Those with SCD have early mortality, with an average life expectancy of approximately 50 years, and only 33 years after adjusting for quality. Coping with these challenges is made increasingly difficult by systemic racism and inequitable care. Patients with SCD are unlikely to receive palliative care (PC) support, and the literature supporting this is sparse. Many complex factors are driving this including lack of clear role delineation for PC practice in SCD care, lack of a robust evidence base to guide clinicians, and feelings that this population is out of the scope of our field. Despite these barriers, there is a growing cohort of PC providers interested in caring for this population. Patients with SCD have unmet PC needs within the physical, mental, social, functional, and spiritual domains- for which interdisciplinary PC involvement would be beneficial. The literature on advance care planning (ACP) in this population, though limited, shows that most SCD patients die in the emergency room and hospital, are unlikely to be enrolled in hospice, and have frequent healthcare utilization in the last year of life. SCD patients are interested in having these discussions- though not currently occurring, suggesting several opportunities in this arena for PC expertise. Finally, current and emerging therapies for SCD offer the possibility for cure, however come with unique challenges and opportunities for shared and complex medical decision-making. We will outline the current landscape around all of this and outline opportunities for improvement. Disease specific management / Models of Palliative Care Delivery [ABSTRACT FROM AUTHOR]

1. Understand and describe the role of qualitative analysis for evaluating a pragmatic randomized controlled trial implementing a risk-algorithm based default palliative care referrals with opt-out nudge for advanced lung and non-colorectal GI cancer patients. 2. Understand and describe the results of our qualitative study exploring community oncology clinician perspectives about this novel intervention and evaluate how it might apply to their own practice setting specifically surrounding the goal of increasing palliative care access to advanced cancer patients. In a qualitative study of community-based oncologists, participants found risk algorithm-based default palliative care referrals within the electronic health record to be a helpful reminder and non-intrusive to their workflow. Contrary to existing findings on oncologist perspectives, this study shows a favorable view of the process of an opt-out nudge and goal of increasing earlier palliative care access. This qualitative study is part of a pragmatic randomized control trial evaluating risk algorithm-based default referral nudges to palliative care (PC) in the oncologists' electronic medical record (EMR) task flow across a large community oncology practice spanning multiple sites. This qualitative study is the first of its kind in the community oncology setting. We conducted semi-structured interviews with oncology providers, including with physicians and nurse practitioners, in a large community oncology setting in the South. Purposive sampling was used to select clinicians involved in our intervention group. We asked providers for their perspectives on the risk algorithm, the opt out nudge for PC referrals, impact on their clinical workflow, facilitators and barriers to scaling this intervention, and overall perspectives on PC. Interviews lasted approximately 30 minutes and were conducted over Zoom, transcribed, and analyzed using Dedoose software. Of the twelve providers interviewed, the majority were physicians (11). Risk algorithm criteria were considered appropriate, with some confusion around age guidelines and suggestions to add more symptoms, screening for social support, and comorbidities. The nudge was seen as seamless and beneficial. The EMR nudge alert was viewed as a helpful reminder to busy clinicians, with the option to opt out on individual patients. Other facilitators included access to an internal outpatient PC program seen as a welcomed service, and a nurse coordinator as a resource to introduce PC to patients. Barriers included perceived staffing limitations; concerns about patient inconvenience around cost, transportation, and time; and individual patient factors, such as emotional fragility and appropriateness for PC due to low symptom burden or stable disease status. This intervention marks a novel way to improve access to PC. Contrary to existing findings on oncologist perspectives, this study shows a general acceptance of this process, which has minimal impact on workflow. Scientific Research / Models of Palliative Care Delivery [ABSTRACT FROM AUTHOR]

1. Describe gender differences in palliative care needs among patients with heart failure. 2. Reflect how gender-specific aspects impact palliative care consultations and palliative care delivery for patients with heart failure. Among hospitalized patients with heart failure who received palliative care consultations, women have a higher symptom burden and are more often impaired in their functional status and capacity to designate a surrogate decision maker as compared to men. Dedicated efforts to address the palliative care needs of women with heart failure are needed. Palliative care is increasingly considered an important component of heart failure (HF) management. (1) We hypothesized that there might be gender differences in patient characteristics, symptom burden and level of impairment among patients with HF who receive palliative care consultations. This retrospective study included patients hospitalized with a primary diagnosis of HF who received an initial palliative care consultation in the Mount Sinai Health System. Patient characteristics, ICD codes, and the palliative care consult assessments including the Karnofsky Performance Status (KPS) and the Edmonton Symptom Assessment Scale (ESAS) were extracted from the electronic health record. (2,3) The population was stratified according to self-identified gender. Among 667 patients with HF who received a palliative care consultation, 327 (49.0%) were women. As compared to men, women were older (77.0 ± 16.7 years vs. 71.2 ± 15.2, p< 0.001) , more likely to be widowed (22.3% vs. 7.8%, p< 0.001) and less likely to be admitted to an intensive care unit (15.5% vs. 28.5%, p< 0.001). At the time of palliative care consult, women had worse functional status (KPS 35.4 ± 16.3 vs. KPS 39.7 ± 17.3, p< 0.001) and were less likely to have capacity to designate a surrogate decision-maker (62.2% vs. 70.7%, p< 0.001). In addition, women had a higher ESAS total symptom distress score (20.8 ± 10.5 vs. 18.2 ± 10.8, p=0.004) and were more likely to report severe symptoms (41.9% vs. 28.5%, p< 0.001). Besides, women were more likely to have completed a do not resuscitate / do not intubate order at the time of discharge (59.0% vs. 50.9%, p=0.01). As compared to men, women with HF were more severely impaired at the time of palliative care consult. Dedicated efforts to address the palliative care needs of women with HF are needed. Disease specific management / Diversity, Equity, Inclusion, Belonging, Justice [ABSTRACT FROM AUTHOR]

1. Participants will self-report the ability to evaluate the complexities and nuances of school (re)integration for pediatric patients receiving palliative care or hospice. 2. By utilizing an interdisciplinary approach which includes families and schools, participants will self-report the ability to facilitate school (re)integration for children receiving palliative care or hospice. Children receiving palliative care/hospice may have a period of clinical improvement in which school (re)entry is feasible, if aligned with patient/family goals. However, (re)integration is challenging to navigate, given patients' unique and complex needs. By using an interdisciplinary model and partnering with families and schools, palliative care/hospice teams can play a pivotal role in supporting school integration for these patients. Given recent medical advances, children receiving palliative care (PC) or hospice may have periods of clinical improvement during which they wish to attend school. However, school (re)entry is challenging given these children's unique and complex needs. Families/schools are often unprepared to facilitate school integration, leaving patients without crucial supports/services, and leaving schools with insufficient knowledge of students' medical needs. VF is a 6yo female with an H3K27M-mutant diffuse midline glioma initially treated with radiation and chemotherapy. When imaging five months post-diagnosis revealed disease progression, chemotherapy was discontinued. Given poor prognosis (median survival ∼1 year) and high symptom burden, VF was admitted to hospice. Several months later, VF's clinical presentation drastically improved, attributed to a decrease in tumor burden/peritumoral inflammation and effective symptom management. She was back to the energetic child she had been, and began voicing the desire to attend school. Wanting to optimize her quality of life, VF's parents enrolled her in public school. Given her current needs, VF requires an Individualized Education Program to ensure necessary supports including a wheelchair-accessible building/classroom, 1:1 paraprofessional, occupational/physical therapies, and safety plan aligned with medical goals of care. Her parents' attempts to secure these supports have been unsuccessful and VF is currently attending school without them. Additionally, school staff lacks information about her health, leaving them unprepared to appropriately handle a medical emergency. VF's hospice team has now partnered with her family to secure needed accommodations, and is serving as a resource for the school to better support VF – medically and psychosocially – in the classroom. Children receiving PC/hospice can have times in which school (re)entry may be feasible, though challenging to navigate. PC/hospice teams are uniquely situated to work with both families and schools to ensure all parties have the knowledge and support needed to facilitate (re)integration. Interdisciplinary Teamwork / Professionalism; Models of Palliative Care Delivery [ABSTRACT FROM AUTHOR]

1. Identify the clinical scope of practice and key components of an interdisciplinary specialty kidney palliative care team. 2. Explain what conservative kidney management is and the typical clinical trajectories of patients who choose it. Palliative care clinicians increasingly care for patients with kidney disease who face challenging symptoms and unique treatment decisions. We present two kidney palliative care programs and an overview of program structures, processes and care across the disease trajectory to equip clinicians with the tools to build their own kidney palliative care practice. Among the 31 million Americans with chronic kidney disease (CKD), older patients are the most common age group initiating dialysis. Patients living with advanced kidney disease experience a high symptom burden that impacts their experience and overall survival. Conservative kidney management (CKM), which is active medical care without dialysis, is rarely offered as a treatment option despite its focus on quality of life and symptom management. The objectives of this session are: 1) describe two models of kidney palliative care (KPC) programs in two academic guide institutions and 2) define program structures, referral processes and patient management strategies to clinicians interested in developing their own program. We will describe two academic KPC programs that provide care for patients with kidney disease across care settings. Using case-based scenarios, we will address the following: 1) team structure and workflow with an emphasis on CKM; 2) patient identification especially for CKM - one using population health management strategies and one using traditional referral process; and 3) typical clinical trajectories with management strategies for patients who have CKM. We will conclude with participants identifying one step toward building a KPC practice at their institution. This session will provide a comprehensive overview of KPC across the care continuum including inpatient consults, outpatient clinic, home-based palliative care, telephone-based treatment decision-making encounters, and hospice. Participants will gain knowledge of how KPC is evolving, including the roles of the interdisciplinary team. These KPC programs demonstrate the paramount impact they have on the lives of kidney patients. This interdisciplinary model not only helps focus on symptom management unique to kidney disease but assists in difficult conversations focusing on patient values. This session will equip participants with the knowledge and tools to consider how to start or expand their own KPC program. Models of Palliative Care Delivery; Disease specific management [ABSTRACT FROM AUTHOR]

Although palliative care is guideline-indicated for patients with advanced heart failure (HF), the scarcity of a specialty-trained palliative care workforce demands better identification of patients who are most burdened by the disease We sought to identify latent subgroups with variations regarding symptom burden, functional status, and multimorbidity in an advanced HF population. We performed a latent class analysis (LCA) of baseline data from a trial enrolling advanced HF patients. As LCA input variables, we chose indicators of HF severity, physical and psychological symptom burden, functional status, and the number of comorbidities. Among 563 patients, two subgroups emerged from LCA, Class A (352 [62.5%]) and Class B (211 [37.5%]). Patients in Class A were less often classified as NYHA class III or IV (88.0% vs. 97.5%, P < 0.001), as compared to Class B patients. Class A patients had fewer symptoms, fewer comorbidities, only 25.9% had impairments in activities of daily living (ADL), and virtually none suffered from clinically significant anxiety (0.4%) or depression (0.9%). In Class B, every patient reported more than three symptoms, almost all patients (92.6%) had some impairment in ADL, and nearly a third had anxiety (30.2%) or depression (28.3%). All-cause mortality after 12 months was higher in Class B, as compared to Class A (18.5% vs. 12.5%, P = 0.047). Among advanced HF patients, we identified a distinct subgroup characterized by a conjunction of high symptom burden, anxiety, depression, multimorbidity, and functional status impairment, which might profit particularly from palliative care interventions. [Display omitted] [ABSTRACT FROM AUTHOR]

1. Learners will understand the impacts of two different methods of palliative care delivery among patients with serious, life-limiting illness. 2. Learners will be able to identify and deploy methods of palliative care specialty based on the resources available within their health systems. An 18-site randomized, pragmatic clinical trial was conducted to compare two established palliative care models, nurse-led telephonic case management and specialty outpatient palliative care, on patient-centered outcomes, including quality of life, loneliness and symptom burden. In this study, neither model was more effective with respect to these outcomes. Community-based palliative care is a limited resource that improves patient-centered outcomes, yet the comparative effectiveness of two predominant palliative care models is unknown. To compare the effectiveness of nurse-led telephonic case management and facilitated, outpatient specialty palliative care on patient-centered outcomes, including quality of life (QOL), symptom burden, loneliness, and healthcare utilization. Emergency Medicine Palliative Care Access (EMPallA) is a patient-level randomized trial comprising persons 50+ years with advanced cancer or end-stage organ failure recruited across 18 Emergency Departments (EDs). Patients were randomized to either telephonic nurse-led case management or specialty, outpatient palliative care. Summary statistics and mixed effects models with multiple imputation with chained equations were used to assess change in QOL. Secondary analyses evaluated the change in: 1) symptom burden; 2) loneliness; and 3) healthcare utilization (ED revisits, inpatient days and hospice utilization) during 12 months of follow-up. Exploratory analyses evaluated intervention effects by disease type, functional status, and racial/ethnic subgroups. Based on 1,283 patients with complete data at baseline, the mean age was 67 (SD 10.4), 666 (52%) were female, 403 (32%) were Black, 460 (36%) had advanced cancer, and 280 (22%) required at least considerable assistance. After adjusting for baseline QOL, the estimated difference between the intervention groups in average QOL score six months post-enrollment was 0.71 points (95% CI: -1.19, 2.61). Additionally, there were no differences between groups in secondary outcomes or in subgroup analyses. Nurse-led telephonic case management and facilitated, outpatient specialty palliative care have similar impact on QOL, symptom burden, loneliness and healthcare utilization.Impact:: As nurse-led telephonic case management programs can be appealing to payers and medical centers that participate in alternative payment models as well as policymakers who are looking for scalable outpatient palliative care models, health systems should consider the cost of deploying brick-and-mortar outpatient specialty palliative care, and consider a centralized model staffed by nurses. Models of palliative/hospice care delivery/Interdisciplinary Teamwork/Professionalism [ABSTRACT FROM AUTHOR]

1. Understand the inter-professional needs of patients with interstitial lung disease. 2. Describe the implementation and impacts of palliative management in interstitial lung disease. While the importance of palliative care (PC) to support patients with end-stage lung disease (ESLD), such as interstitial lung disease (ILD) is known, this interactive presentation will describe the importance of early PC intervention to improve patient and family quality of life. End-stage lung disease (ESLD), specifically interstitial lung disease (ILD), causes great symptom burden, decreased functional status, and anticipatory grief. Although the literature supports the role of palliative care (PC) to aid patients with ILD, optimal timing of referral, need for specialized care, and access to care remain unclear.1 This case presentation reviews 3 unique cases, illustrating the necessity and dramatic benefits of early PC intervention. This outpatient palliative care clinic partnered with the institution-wide multidisciplinary ILD team to improve access to PC for ILD patients. A telemedicine program was developed and a retrospective chart analysis from July 1, 2022 – July 1, 2023, reviewed patient complexity, interventions, timelines, and outcomes. Patients with ILD represented 12% of patients seen in clinic. They had a lower no-show rate (8% vs 19% for first appointment) and 11% higher utilization rate of telemedicine. They had double the average PC follow-up and a 27% higher than average admission rate to hospice. This interactive presentation reviews this data and narrates the stories of 3 unique patients with ESLD with various complex medical courses. CK, a 71-year-old woman with ILD happened upon PC by accident and had more follow-ups than any other patient, plus prolonged survival. JB, a 65-year-old veteran with advanced COPD, PTSD, suicidal ideation, was referred for advance care planning, and had drastically improved mental health and quality of life after dyspnea management. PS, a 76 year-old woman presented to PC requesting euthanasia and subsequently enrolled in a 3-month inpatient clinical trial, after symptom management and supportive family meetings. Patients with ESLD represent a unique, often over-looked, under-resourced population. This presentation demonstrates the significance and profound impact of early PC. Emergencies / Refractory Symptom Management Managing Suffering and Distress [ABSTRACT FROM AUTHOR]

1. To identify patients with advanced CKD who need early Palliative Care referrals. 2. To review the ethical pillars of medicine and how they relate to providing Palliative Care for patients with advanced CKD. This talk discusses WHO are the patients with advanced CKD that are at risk for poor outcomes and need early Palliative Care, WHAT to discuss with these patients during family meetings, HOW to take care of patients opting for non-dialytic care, and WHY there are barriers to integrating Palliative Care in the management of patients with advanced CKD. The option to forego dialytic therapy is an important life event – but studies have shown that up to 95% of patients with advanced chronic kidney disease (CKD) have not had the opportunity to discuss conservative management with their providers. This is reflected in the very low rate of patients enrolled in hospice care with end stage kidney disease (ESKD) as their primary diagnosis. Throughout years of research, multiple barriers have been found, rooted in current kidney care practice, that preclude the delivery of Palliative Care to this vulnerable population. This talk is designed to provide learners of all levels the tools to address these barriers to end-of-life care for patients with CKD, while providing empiric evidence on how to overcome them. Furthermore, the talk elevates the topic by navigating through the challenges and questions raised by modern medical ethics in this setting of rapidly-evolving norms and values. The subject is organized into: WHO: Identifying "who" among patients with CKD are most at-risk for poor outcomes and who may benefit from Palliative Care WHAT: Reviewing "what" to discuss with patients and loved ones, using effective communication skills, when broaching conservative management of ESKD HOW: Outlining "how" to care for patients with ESKD opting for non-dialytic management with appropriate pharmacologic and non-pharmacologic interventions to alleviate their symptom burden WHY: Recognizing "why" foregoing dialysis raises difficult ethical questions that often cause distress and conflict among providers, patients and even loved ones There is a growing need for incorporating Palliative Care in the practice of Nephrology. While dialysis has been the mainstay of advanced CKD management, with what we have learned especially during the COVID pandemic, it is time we all step up to provide Palliative Care for this truly underserved and vulnerable population. Ethical / Legal Aspects of Care / Models of Palliative Care Delivery [ABSTRACT FROM AUTHOR]

1. Identify the unique challenges and opportunities in defining the role of palliative care for patients with sickle cell disease. 2. Describe novel models of palliative care practice for patients with sickle cell disease. Sickle cell disease (SCD) is a life-limiting illness with significant morbidity across the lifespan. To date, it has been rare for SCD patients to receive palliative care support. The factors driving this include appropriately defining palliative care practice in SCD care and lacking a robust evidence base. We will lead a moderated panel discussion exploring these opportunities and challenges. Sickle cell disease (SCD) is a congenital, life-limiting illness with significant morbidity across the lifespan, affecting 1 in 500 Black patients in the United States. Starting in childhood, patients with SCD experience high symptom burden with frequent pain crises and complications from multi-organ failure. SCD also causes early mortality, with an average life expectancy of approximately fifty years. For SCD patients, coping with these challenges is made increasingly difficult by systemic racism and inequitable care in our healthcare system. To date, it has been rare for patients with SCD to receive palliative care support. The factors driving this are complex, including concern over appropriately defining palliative care practice in SCD care and the lack of a robust evidence base to help guide these discussions. Using a panel of four interdisciplinary clinicians (three physicians and one social worker) from multiple specialties (hematology, palliative care), we will lead a moderated discussion highlighting the opportunities and challenges of integrating palliative care into SCD care models. We will start with a debate contrasting the enthusiasm for this care and the immense demonstrated need, with the concern for best defining our role. We will use case examples to discuss novel practice models from our own experiences, emphasizing lessons learned and exploring how we have defined palliative care practice and integration alongside the care of other subspecialties. We will discuss our experiences with developing care models without robust evidence guiding our practice and define the research priorities to help us advance care delivery in the future. Participants will be given the opportunity to have questions answered directly by the panelists. Diversity, Equity, Inclusion, Belonging, Justice / Models of Palliative Care Delivery [ABSTRACT FROM AUTHOR]

1. Identify key barriers and facilitators of early palliative care access for women of color with advanced breast cancer. 2. Identify at least one important element a social and culturally sensitive early palliative care model should include. The goal of this study is to develop a socio-culturally sensitive, community-based, early palliative care intervention to mitigate disparities in distress and symptom burden and improve early palliative care access for Black and Latina women with advanced breast cancer. The resulting intervention - 'ACCESS' - will be evaluated for preliminary impact through an upcoming pilot randomized controlled trial. Black and Latina women with advanced breast cancer (ABC) experience more severe distress and report more significant barriers in palliative care (PC) access relative to non-Latina, White women. Patient-centric care models are needed to address and mitigate these disparities in PC access and outcomes. One-on-one interviews evaluating a) early PC experiences and b) perspectives on a navigator delivered PC model were conducted with Black and Latina women with ABC (N=30), their care partners (N=10), and interdisciplinary providers (N=20). Participants were recruited from urban PC and oncology clinics, federally qualified health centers, and community organizations. Utilizing inductive coding and thematic analysis, transcripts were reviewed and analyzed by an interdisciplinary team of investigators. Member checking was conducted by community scientists and community advisory board members. Barriers and facilitators of PC access were first identified. Barriers included a) inadequate communication between oncology, PC, and primary care teams, b) PC stigma among patients and non-PC providers, c) health literacy learning curves, and d) structural racism, including implicit bias and lack of diverse racial/ethnic representation in the supportive care workforce. Facilitators included a) patient-to-patient referrals, b) support groups breaking cultural stigma, c) referrals from trusted providers, and d) community organization's abilities to overcome challenges related to social determinants of health. These findings, in addition to participant feedback on the intervention outline, were utilized to develop the final version of ACCESS – a culturally and linguistically concordant navigator led intervention that will address social determinants of health, provide tailored psycho-educational discussions of PC, and conduct linkage to community and clinical resources. These formative evaluations led to the development of ACCESS – a socio-culturally sensitive, community-based, early palliative care intervention, which will be evaluated for preliminary impact on PC utilization and distress through an upcoming pilot randomized controlled trial. Diversity, Equity, Inclusion, Belonging, Justice / Models of Palliative Care Delivery [ABSTRACT FROM AUTHOR]

1. Describe the patient population served by an outpatient non-oncology palliative care clinic and areas to expand this care. 2. Identify measurable outcomes of patient care, including healthcare utilization, metric data, and barriers to care. A weekly non-oncologic palliative clinic was implemented to meet outpatient palliative care needs for patients with complex chronic medical conditions. A retrospective chart review of the first year of patients was performed and analyzed to assess populations served, interventions provided, utilization metrics, and identify areas for growth and multidisciplinary collaboration. Outpatient palliative care for patients with cancer has grown significantly over the past decade. Although palliative care has also been shown to improve quality of life and symptom burden in patients with other complex chronic conditions including end-stage pulmonary and cardiac disease, outpatient non-oncologic palliative care remains sparse.1,2 To meet the needs of these patients we implemented a weekly Non-Oncologic Outpatient Palliative Care Clinic at a tertiary urban academic medical center. We also developed partnerships with other medical departments to increase palliative care access for medically complex patients. A retrospective chart review was completed of all 104 patients scheduled for Non-Oncologic Outpatient Palliative Care Clinic from July 1st 2022 to July 1st 2023. Data analysis evaluated medical complexity, symptoms addressed, primary referral diagnosis, chronic medical conditions, and polypharmacy. Utilization metrics include re-hospitalization for primary condition, telehealth utilization, clinic attendance data, and hospice referrals. To assess diversity and inclusion, we collected metrics on race, insurance, and home zip code to investigate barriers to care. Analysis and presentation of this data will guide future targeted outreach to improve access to palliative care for particularly vulnerable populations, as well as refining our ongoing multidisciplinary collaborations. Models of Palliative Care Delivery; Quality Improvement [ABSTRACT FROM AUTHOR]

1. Describe how to develop an integrated palliative care approach to advanced CKD care through a community-based partnership. 2. Describe the implementation of a community-based collaboration for advanced CKD as a model to apply with other advanced chronic diseases. This quality improvement, pilot program demonstrates the value of community practices collaborating to improve the care for patients with advanced CKD. We will share how a private, nephrology practice integrated palliative care support in their own private clinic setting to improve the care for their patients with advanced CKD. Many older patients with advanced kidney disease have multimorbidity and high symptom burden1. In addition, patients with advanced CKD and caregivers must face numerous treatment-related decisions, including whether to opt for kidney replacement therapy or conservative medical management, choosing among dialysis modalities, establishing goals of care, and completing advance directives1. Integrating a palliative care provider in a nephrology practice may help patients to actively participate in shared decision making for their care to promote later and better starts on dialysis, or to avoid dialysis entirely2. We implemented an integrated palliative care approach to advanced CKD care management through a community-based partnership. A palliative care provider provided tandem consultation visits in a community-based nephrology clinic to serve selected patients. These visits included patients with their caregivers or family to provide anticipatory guidance regarding advanced kidney disease and progression, documentation of advanced care planning, goals of care, and social determinants of health (SDH). A total of 55 patients were seen in the Nephrology-PC clinic with a diagnosis of CKD 4-5. This pilot clinic with a PC provider integrated within a nephrology clinic demonstrated: an increase in % of patients with a surrogate decision-maker documented in the EHR; an increase in % of patients with goals of care conversations documented in the EHR; and an increase in % of patients with SDH documented in the EHR. Fatigue was the most common symptom burden among these patients. This pilot also demonstrated a cost-savings benefit for this approach to advanced CKD care. This partnership should be considered a model-of-care in a value-based arrangement at risk for total cost of care in managing patients with advanced CKD. This model-of-care can be designed to incentivize better management of advanced chronic kidney disease while improving quality of care. Models of Palliative Care DeliveryShared Decision Making / Advance Care Planning [ABSTRACT FROM AUTHOR]

1. Upon successful completion, participants will be able to understand the history of palliative care (PC) in sickle cell disease (SCD) and primary impetus for development of an international PC in SCD Working Group. 2. Upon successful completion, participants will be able to identify the demographic makeup, top priorities and planned deliverables defined by the members of the International Palliative Care in Sickle Cell Disease Working Group. Despite high symptom burden, poor quality of life, and early mortality, patients with Sickle Cell Disease (SCD) have infrequent access to palliative care (PC); and as a discipline, our potential role has been poorly defined. Through development of an interdisciplinary working group, we've defined objectives within research, clinical, and education subcategories to grow the literature base on PC in SCD. Sickle cell disease (SCD) is a genetic, life-limiting condition with significant morbidity across the lifespan; affecting 1 in 500 Black patients in the United States. Starting in childhood, patients with SCD experience high symptom burden with frequent pain crises and complications from multi-organ failure leading to poor health-related quality of life. Those with SCD have early mortality, with an average life expectancy of approximately fifty years, and a quality-adjusted life expectancy of only 33 years. Coping with these challenges is made increasingly difficult by systemic racism and inequitable care in our healthcare system. To date, it has been rare that patients with SCD receive palliative care (PC) support, and the literature supporting this is sparse. Many complex factors are driving this including concern over the lack of clear role delineation for PC practice in SCD care, lack of a robust evidence base to help guide clinicians, and feelings that this population is out of the scope of our field. Within this context, an increasing number of PC providers have developed an interest in expanding the reach of our field to this historically under-served population. In March 2023, a call for those interested in SCD was posted on the AAHPM Open Forum with an immense response. Since then, over 40 members have joined to form an 'International Palliative Care in Sickle Cell Disease Working Group,' with the objective of increasing and defining PC involvement within SCD care. Here we will outline results from a survey study (n=26) defining the demographic make-up of the working group, members' interest in this population and reason for joining the working group, members' justifications for PC involvement in SCD, as well as the group's top priorities and desired deliverables within four subcategories (clinical, research, education, advocacy/community). Interdisciplinary Teamwork / Professionalism; Diversity, Equity, Inclusion, Belonging, Justice [ABSTRACT FROM AUTHOR]

1. Recognize that patients with life limiting illness often face physical, social, and economical burdens and Home Based Palliative care can help patients and their families with their end-of-life care. 2. Understand that research on how hospice and palliative care professionals can deliver high quality, culturally sensitive person-centered care to underserved patients is lacking. Many people with terminal illnesses face physical and psychosocial symptoms which prohibit them from leaving their homes and limit their ability to access high quality healthcare. Home Based Palliative Care (HBPalC) is an emerging program that improves healthcare outcomes and has tremendous value to patients and their families. However, research on how HBPalC can benefit underserved populations is lacking. Millions of people who have terminal illnesses face physical and psychosocial symptoms which prohibit them from leaving their homes and limit their ability to gain access to high quality healthcare. Home Based Palliative Care (HBPalC) is an emerging service that improves healthcare outcomes and reduces healthcare costs. Research is lacking on the true impact of HBPalC on the underserved population. We describe a case of a 55-year-old Hispanic nonsmoker female who presented to the hospital in May 2023 with back pain and a cough. She was diagnosed with primary adenocarcinoma of the lung with metastasis to the bone. She was referred to our HBPalC team for severe and debilitating cancer related back pain. The patient is widowed with four children that range from ages 19 to 31. She is a housekeeper but is unable to work due to her severe back pain and relies on her children for financial support. Our HBPalC team has not only helped with her pain, but also made it easier for her to access cost effective healthcare directly in her home. Furthermore, our social worder was able to provide resources for her to join a Hispanic based support group for those with cancer. During our encounters, she expresses gratitude for our home-based services as she faces severe symptom burden along with social and economic hardships. This case highlights one of many underserved patients who is homebound due to a terminal diagnosis. The emerging multidisciplinary team of HBPalC has enormous value to patients and their families. It improves patient satisfaction by allowing them to spend more time at home and reduces their healthcare costs. HBPalC can provide underserved patients who have less functional ability with practical assistance, those with the most serious illness with emotional and spiritual support, and those lacking adequate finances with social services. Models of Palliative Care Delivery; Interdisciplinary Teamwork / Professionalism [ABSTRACT FROM AUTHOR]

Context: Enhancing quality of life (QoL) is a goal of palliative care. Existential QoL is an important aspect of this.Objectives: This study sought to advance our understanding of existential QoL at the end of life through examining levels of Preparation and Completion, subscales of the QUAL-E, and their associated factors.Methods: We used data from a multi-site study of 331 older cancer patients receiving palliative care. We examined levels of Preparation and Completion and their association with demographic, religious, and medical factors, and with the Patient Dignity Inventory.Results: Preparation and Completion scores were moderately high. In adjusted models, being 10 years older was associated with an increase of 0.77 in Preparation (P = 0.002). Non-white patients had higher Preparation (1.03, P = 0.01) and Completion (1.56, P = 0.02). Single patients reported Completion score 1.75 point lower than those married (P = 0.01). One-point increase in intrinsic religiousness was associated with a 0.86-point increase in Completion (P = 0.03). One-point increase in terminal illness awareness was associated with 0.75-point decrease in Preparation (P = 0.001). A 10-point increase in symptom burden was associated with a decrease of 0.55 in Preparation (P < 0.001) and a decrease of 1.0 in Completion (P < 0.001). The total Patient Dignity Inventory score and all of its subscales were negatively correlated with Preparation (r from -.26 to -.52, all P < 0.001) and Completion (r from -.18 to -.31, all P < 0.001).Conclusion: While most patients reported moderate to high levels of existential QoL, a subgroup reported low existential QoL. Terminal illness awareness and symptom burden may be associated with lower existential QoL. [ABSTRACT FROM AUTHOR]

Context: Health status (i.e., symptoms, function, and quality of life) is an important palliative care outcome in patients with heart failure; however, patterns of health status over time (i.e., trajectories) are not well described.Objectives: The objective of this study was to identify health status trajectories in outpatients with heart failure and assess whether depression, symptom burden, or sense of peace predict health status trajectory.Methods: This is an observational study utilizing data from the Patient-Centered Disease Management for Heart Failure trial. Participants completed Kansas City Cardiomyopathy Questionnaires at baseline, three, six, and 12 months. Latent class growth analysis identified health status trajectories; multinomial logistic regression models identified predictors of trajectory membership.Results: Patients (n = 384) were primarily men (97%) and older (mean age 67.6 ± 10.1). Three health status trajectories were identified. All three trajectories improved at three months; however, the marked improvement health status trajectory (n = 19) showed progressive improvement over one year, whereas the poor (n = 119) and moderate (n = 246) health status trajectories had little change after three months. In adjusted analyses, worse baseline depression (odds ratio 1.10; 95% confidence interval 1.01-1.20), symptom burden (1.45; 1.15-1.83), and sense of peace (0.41; 0.22-0.75) predicted membership in the poor vs. moderate health status trajectory.Conclusion: We identified three one-year health status trajectories in patients with heart failure, with the two most common trajectories characterized by early improvement followed by limited change. Future research should assess these findings in nonveterans and women and explore whether treatment of depression, high symptom burden, and low sense of peace leads to improved long-term heart failure health status trajectory. [ABSTRACT FROM AUTHOR]

Context: Colorectal cancer (CRC) is one of the most common cancers worldwide. Patients with CRC may have multiple cooccurring symptoms as a result of their disease or its treatment. Little is known about potential differences in symptom burden in CRC patients scheduled to receive curative versus palliative chemotherapy (CTX).Objectives: The purposes of this study were to investigate the overall symptom burden of patients with CRC before their first CTX treatment or before the initiation of a new CTX regimen and to evaluate for differences in symptom occurrence, severity, and distress between patients with CRC who were scheduled to receive curative versus palliative CTX.Methods: Consecutive patients with CRC were recruited (n = 120), and symptoms were assessed using the Memorial Symptom Assessment Scale before the initiation of the CTX. The most common symptoms that occurred in ≥30% of the patients were evaluated. Differences in occurrence rates and severity and distress scores between the curative (n = 68) and palliative (n = 52) patient groups were evaluated using binary logistic regression and ordinal logistic regression analyses, respectively.Results: In both groups, patients reported an average of 10 cooccurring symptoms. Worrying (65%), lack of energy (59%), feeling drowsy (54%), feeling bloated (53%), pain (51%), and difficulty sleeping (50%) were the most prevalent symptoms. Problems with sexual interest had the highest severity and distress scores in both groups. For the 13 most common symptoms, no significant differences were found between the two patient groups on any of the Memorial Symptom Assessment Scale dimensions (i.e., occurrence, severity, distress).Conclusion: Regardless of the reason for CTX, CRC patients experience a large number of cooccurring symptoms. [ABSTRACT FROM AUTHOR]

Context: Homebound adults experience significant symptom burden.Objectives: To examine demographic and clinical characteristics associated with high symptom burden in the homebound, and to examine associations between symptom burden and time to hospitalization, nursing home placement, and death.Methods: Three hundred eighteen patients newly enrolled in the Mount Sinai Visiting Doctors Program, an urban home-based primary care program, were studied. Patient sociodemographic characteristics, symptom burden (measured via the Edmonton Symptom Assessment Scale), and incidents of hospitalization, nursing home placement, and death were collected via medical chart review. Multivariate Cox proportional hazards models were used to analyze the effect of high symptom burden on time to first hospitalization, nursing home placement, and death.Results: Of the study sample, 45% had severe symptom burden (i.e., Edmonton Symptom Assessment Scale score >6 on at least one symptom). Patients with severe symptom burden were younger (82.0 vs. 85.5 years, P < 0.01), had more comorbid conditions (3.2 vs. 2.5 Charlson score, P < 0.01), higher prevalence of depression (43.4% vs. 12.0%, P < 0.01), lower prevalence of dementia (34.3% vs. 60.6%, P < 0.01), and used fewer hours of home health services (73.6 vs. 94.4 hours/wk, P < 0.01). Severe symptom burden was associated with a shorter time to first hospitalization (hazard ratio = 1.51, 95% CI 1.06-2.15) in adjusted models but had no association with time to nursing home placement or death.Conclusion: The homebound with severe symptom burden represents a unique cohort of patients who are at increased risk of hospitalization. Tailored symptom management via home-based primary and palliative care programs may prevent unnecessary health care utilization in this population. [ABSTRACT FROM AUTHOR]

Context: The international cohort of hemodialysis patients is aging and increasing in number. Nephrologists have a therapeutic relationship with their patients that may span decades. Often overlooked components of chronic disease management include symptom control and assessment of health-related quality of life (HRQoL).Objectives: This study describes the symptom profile of a large cohort of patients with end-stage renal disease on hemodialysis in England and Ireland and evaluates how symptom burden and other factors influence quality-of-life scores.Methods: A prospective cross-sectional observational study of hemodialysis patients was conducted in Ireland and England during 2011 and 2012. Two validated clinical tools were used to determine HRQoL and symptom burden. Demographic and clinical data were examined, and regression analysis was used to determine associations with HRQoL scores.Results: A total of 893 patients on hemodialysis (mean [SD] age 64 [16] years) had a high symptom burden and poor HRQoL compared with population norms. Specifically, 64% of patients reported pain (95% confidence interval 61%-67%) and 79% reported weakness (95% confidence interval 75%-81%). A total of 43 percent of patients reported between six and 10 symptoms in the week preceding the survey. HRQoL was significantly and independently associated with poor mobility and pain and remained significant after adjusting for variations in clinical characteristics. Being listed on a transplant wait-list register was positively associated with HRQoL.Conclusion: These findings illustrate the high symptom burden and poor HRQoL of the hemodialysis population. Emphasis during clinical reviews on pain assessment and on assessing mobility plus interventions, such as pain management and physiotherapy/occupational therapy, are practical ways for renal teams to help improve patients' quality of life. [ABSTRACT FROM AUTHOR]

Context Maintaining a sense of dignity in terminally ill patients and enabling a dignified dying are important aims of palliative care. Objectives To evaluate the impact of symptom burden, distress, overall condition, and individual patient characteristics on self-perceived dignity in terminally ill cancer patients. Methods In this cross-sectional study, 61 patients were recruited through a palliative care inpatient ward within 48 hours after admission. Patients completed the Patient Dignity Inventory, a modified version of the Memorial Symptom Assessment Scale, the National Comprehensive Cancer Network Distress Thermometer, and a single-item scale rating subjective of overall condition. Sociodemographic parameters and performance status were taken from the patients' records. Results Dignity total score correlated highest with lack of energy ( P < 0.001), anxiety ( P < 0.001), sadness ( P = 0.002), pain ( P = 0.009), shortness of breath ( P = 0.019), irritability ( P = 0.023), thirst ( P = 0.029), and tiredness ( P = 0.041). Psychological symptoms showed more consistent associations with the different dignity dimensions than physical symptoms except for the dependency dimension. Psychological distress correlated with all dignity dimensions: symptom distress ( P < 0.001), existential distress ( P < 0.001), dependency ( P = 0.020), peace of mind ( P < 0.001), and social support ( P = 0.024). Overall condition was significantly associated with existential distress ( P = 0.013), but not with symptom distress, dependency, peace of mind, or social support. Performance status showed significant association with dependency ( P = 0.001). Conclusion Self-perceived dignity in terminally ill cancer patients is significantly associated with physical as well as psychological symptoms, distress, overall condition, performance status, and comorbidities. Knowledge of these specific interactions is essential for adequate, comprehensive palliative care. [ABSTRACT FROM AUTHOR]

Abstract: Context: Most patients admitted to acute palliative care units (APCUs) are transferred from inpatient oncology units. We hypothesized that patients admitted to APCUs from emergency centers (ECs) have symptom burdens and outcomes that differ from those of transferred inpatients. Objectives: The purpose of this retrospective cohort study was to compare the symptom burdens and survival rate of patients admitted to an APCU from an EC with those of inpatients transferred to the APCU. Methods: Among the 2568 patients admitted to our APCU between September 1, 2003 and August 31, 2008, 312 (12%) were EC patients. We randomly selected 300 inpatients transferred to the APCU as controls (The outcome data were unavailable for two patients). We retrieved data on patient demographics, cancer diagnosis, Edmonton Symptom Assessment System scores, discharge outcomes, and overall survival from time of admission to the APCU. Results: The EC patients had higher rates of pain, fatigue, nausea, and insomnia and were less likely to be delirious. They were more than twice as likely to be discharged alive than transferred inpatients. Kaplan-Meier plot tests for product-limit survival estimate from admission to APCU for EC patients and inpatients were statistically significant (median survival 34 vs. 31 days, P <0.0001). In multivariate analysis, EC admission (odds ratio [OR]=1.8593, 95% confidence interval [CI] 1.1532–2.9961), dyspnea (OR=0.8533, 95% CI 0.7892–0.9211), well-being (OR=1.1192, 95% CI 1.0234–1.2257), and delirium (OR=0.3942, 95% CI 0.2443–0.6351) were independently associated with being discharged alive. Conclusion: The EC patients have a higher acute symptom burden and are more likely to be discharged alive than transferred inpatients. The APCU was successful at managing symptoms and facilitating the discharge of both inpatients and EC patients to the community although the patients had severe symptoms on admission. [Copyright &y& Elsevier]

Abstract: Context: To provide effective palliative care (PC) to the geriatric population, an understanding of the reasons for consultation, main diagnoses related to referral, and symptom severity in chronic disease states is essential. Objectives: We compared the baseline characteristics, referral patterns, and symptom severity among older and younger patients referred for inpatient PC consultation. Methods: We conducted a retrospective review of 2382 inpatient PC consultations. We excluded “reconsultations” and patients under the age of 18. Patient characteristics (reason for consultation and diagnosis) and symptom severity were compared across three age groups: Younger, <65 years of age; Older, 65–84 years of age; and Oldest, 85 years of age and older. Multivariable logistic regression adjusted for the effects of gender, ethnicity, and diagnostic subset was performed. Results: Most patients referred for inpatient PC consultation were older than the age of 65. Oldest patients were consulted on earlier and more often for “end-of-life care.” Oldest adults were less likely to report pain, anxiety, and nausea (adjusted odds ratios [AOR] of 0.25, 0.39, and 0.19, respectively) and more likely to report anorexia than Younger adults (AOR=1.66). There was no clear difference between age groups in reporting of dyspnea and depression. Conclusion: Older adults in need of PC appear to have symptom burdens and consultation referral patterns that are different from those of younger patients. Further research is needed to determine whether these symptom patterns are caused by psychosocial factors, whether these reflect true differences among age groups, and whether symptom measurement instruments should be tailored to patient age. [Copyright &y& Elsevier]

Abstract: Context: Most patients with advanced cystic fibrosis (CF) die from respiratory failure and experience distressing symptoms as lung disease progresses. Little has been reported about symptom management and the continuation of disease-specific treatments near the end of life for patients with CF. Objective: We aimed to describe symptom prevalence, symptom management, and frequency of use of disease-specific treatments for patients dying from complications of CF. Methods: We conducted semistructured interviews about end-of-life care in CF with bereaved family caregivers and asked questions about symptoms and treatments. Results: Twenty-seven caregivers answered questions about symptoms and treatments. Caregivers reported that distressing symptoms were common during the last week of life, including dyspnea (100%), fatigue (96%), anorexia (85%), anxiety (74%), pain (67%), and cough (56%). Most caregivers felt that symptom control was “somewhat good.” Many reported that medical providers “did the best they could” to manage symptoms but four (15%) recalled no physician inquiry about symptoms. Caregivers expressed beliefs that symptoms could not be controlled and described concerns about side effects and potential for hastening death with the use of opioids and anxiolytics. Patients received numerous disease-specific treatments, and caregivers described many of them as uncomfortable but necessary. Conclusions: Distressing symptoms are common in dying CF patients, and disease-specific treatments also cause discomfort. Many family caregivers have low expectations for symptom control. This exploratory research can be used to inform clinical interventions to improve symptom management for patients with advanced CF. [ABSTRACT FROM AUTHOR]