Kidney Transplant Clinicians' Perceptions of Palliative Care for Patients With Failing Allografts in the US: A Mixed Methods Study.

RATIONALE & OBJECTIVE: Kidney transplant patients with failing allografts have a physical and psychological symptom burden as well as high morbidity and mortality. Palliative care is underutilized in this vulnerable population. We described kidney transplant clinicians' perceptions of palliative care to delineate their perceived barriers to and facilitators of providing palliative care to this population. STUDY DESIGN: National explanatory sequential mixed methods study including an online survey and semistructured interviews. SETTING & PARTICIPANTS: Kidney transplant clinicians in the United States surveyed and interviewed from October 2021 to March 2022. ANALYTICAL APPROACH: Descriptive summary of survey responses, thematic analysis of qualitative interviews, and mixed methods integration of data. RESULTS: A total of 149 clinicians completed the survey, and 19 completed the subsequent interviews. Over 90% of respondents agreed that palliative care can be helpful for patients with a failing kidney allograft. However, 46% of respondents disagreed that all patients with failing allografts benefit from palliative care, and two-thirds thought that patients would not want serious illness conversations. More than 90% of clinicians expressed concern that transplant patients and caregivers would feel scared or anxious if offered palliative care. The interviews identified three main themes: (1) transplant clinicians' unique sense of personal and professional responsibility was a barrier to palliative care engagement, (2) clinicians' uncertainty regarding the timing of palliative care collaboration would lead to delayed referral, and (3) clinicians felt challenged by factors related to patients' cultural backgrounds and identities, such as language differences. Many comments reflected an unfamiliarity with the broad scope of palliative care beyond end-of-life care. LIMITATIONS: Potential selection bias. CONCLUSIONS: Our study suggests that multiple barriers related to patients, clinicians, health systems, and health policies may pose challenges to the delivery of palliative care for patients with failing kidney transplants. This study illustrates the urgent need for ongoing efforts to optimize palliative care delivery models dedicated to kidney transplant patients, their families, and the clinicians who serve them. PLAIN-LANGUAGE SUMMARY: Kidney transplant patients experience physical and psychological suffering in the context of their illnesses that may be amenable to palliative care. However, palliative care is often underutilized in this population. In this mixed-methods study, we surveyed 149 clinicians across the United States, and 19 of them completed semistructured interviews. Our study results demonstrate that several patient, clinician, system, and policy factors need to be addressed to improve palliative care delivery to this vulnerable population.

Feasibility and acceptability of a nurse-led telehealth intervention (BOLSTER) to support patients with peritoneal carcinomatosis and their caregivers: A pilot randomized clinical trial.

OBJECTIVE: Patients with advanced gynecologic (GYN) and gastrointestinal (GI) cancers frequently develop peritoneal carcinomatosis (PC), which limits prognosis and diminishes health-related quality of life (HRQoL). Palliative procedures may improve PC symptoms, yet patients and caregivers report feeling unprepared to manage ostomies, catheters, and other complex needs. Our objectives were to (1) assess the feasibility of an efficacy trial of a nurse-led telehealth intervention (BOLSTER) for patients with PC and their caregivers; and (2) assess BOLSTER's acceptability, potential to improve patients' HRQoL and self-efficacy, and potential impact on advance care planning (ACP). METHODS: Pilot feasibility RCT. Recently hospitalized adults with advanced GYN and GI cancers, PC, and a new complex care need and their caregivers were randomized 1:1 to BOLSTER or enhanced discharge planning (EDP). We defined feasibility as a ≥ 50% approach-to-consent ratio and acceptability as ≥70% satisfaction with BOLSTER. We assessed patients' HRQoL and self-efficacy at baseline and six weeks, then compared the proportion experiencing meaningful improvements by arm. ACP documentation was identified using natural language processing. RESULTS: We consented 77% of approached patients. In the BOLSTER arm, 91.0% of patients and 100.0% of caregivers were satisfied. Compared to EDP, more patients receiving BOLSTER experienced improvements in HRQoL (68.4% vs. 40.0%) and self-efficacy for managing symptoms (78.9% vs. 35.0%) and treatment (52.9% vs. 42.9%). The BOLSTER arm had more ACP documentation. CONCLUSIONS: BOLSTER is a feasible and acceptable intervention with the potential to improve patients' HRQoL and promote ACP. An efficacy trial comparing BOLSTER to usual care is underway. TRIAL REGISTRATION: ClinicalTrials.gov: NCT03367247; PI: Wright.

A Retrospective Observational Study Exploring 30- and 90-Day Outcomes for Patients With COVID-19 After Percutaneous Tracheostomy and Gastrostomy Placement.

OBJECTIVES: To determine the 30- and 90-day outcomes of COVID-19 patients receiving tracheostomy and percutaneous endoscopic gastrostomy (PEG). DESIGN: Retrospective observational study. SETTING: Multisite, inpatient. PATIENTS: Hospitalized COVID-19 patients who received tracheostomy and PEG at four Boston hospitals. INTERVENTIONS: Tracheostomy and PEG placement. MEASUREMENTS AND MAIN RESULTS: The primary outcome was mortality at 30 and 90 days post-procedure. Secondary outcomes included continued device presence, place of residence, complications, and rehospitalizations. Eighty-one COVID-19 patients with tracheostomy and PEG placement were included. At 90 days post-device placement, the mortality rate was 9.9%, 2.7% still had the tracheostomy, 32.9% still had the PEG, and 58.9% were at home. CONCLUSIONS: More than nine-in-10 patients in our population of COVID-19 patients who underwent tracheostomy and PEG were alive 90 days later and most were living at home. This study provides new information regarding the outcomes of this patient population that may serve as a step in guiding clinicians, patients, and families when making decisions regarding these devices.

Clinical practice review: outpatient palliative care for the geriatric chronic kidney disease population.

With a growing geriatric population in the United States, there is an increased need for healthcare resources and collaborative care for serious illnesses. Patients with chronic illnesses including chronic kidney disease (CKD) often experience severe symptoms and face complex decisions, many of which develop or occur in the outpatient setting. Though many of these symptoms overlap between different chronic illnesses, the CKD population remains largely untapped in terms of access to said resources; until recently, the focus in palliative care has been largely in the oncologic population. Older patients with CKD may benefit from additional tools and resources provided from collaborative care models specifically involving palliative care, especially as this population is high risk for experiencing lack of support. In this review, we use case vignettes to discuss the key concepts and roles of outpatient palliative care and how they can be integrated into the nephrology care of older patients with advanced kidney disease. These highlighted concepts include shared decision-making, selective deprescribing and symptom management, psychosocial support, and advance care planning. We also review different outpatient models for integrative palliative care, and the roles and resources of the palliative multidisciplinary team within these models and how these models can potentially be implemented in the care of CKD patients.

Harnessing Natural Language Processing to Assess Quality of End-of-Life Care for Children With Cancer.

PURPOSE: Data on end-of-life care (EOLC) quality, assessed through evidence-based quality measures (QMs), are difficult to obtain. Natural language processing (NLP) enables efficient quality measurement and is not yet used for children with serious illness. We sought to validate a pediatric-specific EOLC-QM keyword library and evaluate EOLC-QM attainment among childhood cancer decedents. METHODS: In a single-center cohort of children with cancer who died between 2014 and 2022, we piloted a rule-based NLP approach to examine the content of clinical notes in the last 6 months of life. We identified documented discussions of five EOLC-QMs: goals of care, limitations to life-sustaining treatments (LLST), hospice, palliative care consultation, and preferred location of death. We assessed performance of NLP methods, compared with gold standard manual chart review. We then used NLP to characterize proportions of decedents with documented EOLC-QM discussions and timing of first documentation relative to death. RESULTS: Among 101 decedents, nearly half were minorities (Hispanic/Latinx [24%], non-Hispanic Black/African American [20%]), female (48%), or diagnosed with solid tumors (43%). Through iterative refinement, our keyword library achieved robust performance statistics (for all EOLC-QMs, F1 score = 1.0). Most decedents had documented discussions regarding goals of care (83%), LLST (83%), and hospice (74%). Fewer decedents had documented discussions regarding palliative care consultation (49%) or preferred location of death (36%). For all five EOLC-QMs, first documentation occurred, on average, >30 days before death. CONCLUSION: A high proportion of decedents attained specified EOLC-QMs more than 30 days before death. Our findings indicate that NLP is a feasible approach to measuring quality of care for children with cancer at the end of life and is ripe for multi-center research and quality improvement.

Timing and content of serious illness conversations for patients with advanced heart failure in a specialty-aligned palliative care service.

BACKGROUND: Patients with advanced heart failure (AHF) desire communication around values and goals prior to treatment decisions. OBJECTIVES: To evaluate the timing and content of the first serious illness communication (SI conversation) for patients with AHF after referral to a specialist palliative care (PC) team (HeartPal). METHODS: In this retrospective cohort study, we used electronic health records to identify patients referred to HeartPal and their first SI conversations at a tertiary care hospital between October 2018 and September 2021. We used natural language processing and predetermined codes to quantify prevalence of prior goals of care conversations by the cardiology team within six months preceding the HeartPal consultation and the prevalence of hopes, fears, and seven conversation content codes. Consecutive SI conversations and patient outcomes were followed until March 2022. RESULTS: Of 468 patients (mean age: 64 years, 72 % male, 66 % referred for goals of care conversation), 25.2 % had prior documented goals of care conversations preceding the HeartPal consultation. During the study period, 206 (44.0 %) patients died (median time from initial SI conversation to death: 65 days, IQR 206) and 43.2 % engaged in multiple SI conversations before death. SI conversation analysis (n = 324) revealed that patients hoped to "be at home" (74.1 %, n = 240), "be independent" (65.7 %, n = 213) and "live as long as possible" (53.4 %, n = 173). Conversation content included goals of care (83.0 %), strengths (83.0 %), decision-making (79.3 %), spirituality (71.0 %), coping (52.2 %), and prognostic communication (43.5 %). CONCLUSION: Specialist PC service provides documentation of goals and values and offers longitudinal follow-up for patients with AHF.

Professional Standards and the Role of the Advanced Practice Registered Nurse in Hospice and Palliative Care.

Palliative care aims to optimize quality of life and reduce physical, psychological, social, and spiritual suffering for people living with serious and life-threatening illness throughout the life span. There are different educational pathways to becoming an advanced practice registered nurse (APRN) and a range of areas in which APRNs may specialize, including hospice and palliative care. National guidelines and professional standards have been developed to guide the delivery of high-quality palliative care and to demonstrate the need for all nurses to be competent in providing primary palliative care. Advanced practice registered nurses are well poised to integrate palliative care standards into their practice in a variety of settings and in myriad ways including clinical care, program development, leadership, education, and advocacy. This article is the first in a series that will highlight the different roles of the hospice and palliative care APRN, including the doctor of nursing practice, clinical nurse specialist, pediatric APRN, adult/gerontology APRN, and community-based APRN in a variety of settings throughout the country.

Adding Pals to KidneyPal: Creating a Virtual Patient and Family Advisory Council for Kidney Palliative Care.

Patient and family advisory councils (PFACs) represent one method of engaging patients and families in clinical program development and research, but existing practices too often exclude marginalized and minority voices. As a kidney palliative care team (KidneyPal) at a large academic medical center, we sought to create a PFAC that explicitly considered equity and inclusion in its approach to advisor recruitment. We developed two major innovations to reduce selection bias in our KidneyPal PFAC: adaptation to an entirely virtual process and alteration of the advisor recruitment and enrollment process. We eliminated several potential barriers to participation for our patients and their family members, a population with higher rates of advanced age, nonwhite ethnicity, and limited English proficiency than the local general population. We removed application requirements including lengthy online training modules, detailed employment history, a personal essay, and a criminal background check. The KidneyPal PFAC may act as a model for improving equity and inclusion in virtual patient advisory councils.

Development of a keyword library for capturing PRO-CTCAE-focused "symptom talk" in oncology conversations.

Objectives: As computational methods for detecting symptoms can help us better attend to patient suffering, the objectives of this study were to develop and evaluate the performance of a natural language processing keyword library for detecting symptom talk, and to describe symptom communication within our dataset to generate insights for future model building. Materials and Methods: This was a secondary analysis of 121 transcribed outpatient oncology conversations from the Communication in Oncologist-Patient Encounters trial. Through an iterative process of identifying symptom expressions via inductive and deductive techniques, we generated a library of keywords relevant to the Patient-Reported Outcome version of the Common Terminology Criteria for Adverse Events (PRO-CTCAE) framework from 90 conversations, and tested the library on 31 additional transcripts. To contextualize symptom expressions and the nature of misclassifications, we qualitatively analyzed 450 mislabeled and properly labeled symptom-positive turns. Results: The final library, comprising 1320 terms, identified symptom talk among conversation turns with an F1 of 0.82 against a PRO-CTCAE-focused gold standard, and an F1 of 0.61 against a broad gold standard. Qualitative observations suggest that physical symptoms are more easily detected than psychological symptoms (eg, anxiety), and ambiguity persists throughout symptom communication. Discussion: This rudimentary keyword library captures most PRO-CTCAE-focused symptom talk, but the ambiguity of symptom speech limits the utility of rule-based methods alone, and limits to generalizability must be considered. Conclusion: Our findings highlight opportunities for more advanced computational models to detect symptom expressions from transcribed clinical conversations. Future improvements in speech-to-text could enable real-time detection at scale.

Top Ten Tips Palliative Care Clinicians Should Know About Delivering Specialty-Aligned Palliative Care.

Specialty-aligned palliative care (SAPC) refers to interprofessional palliative care (PC) that is delivered to a specific population of patients in close partnership with other primary or specialty clinicians. As evolving PC models address physical, psychosocial, and spiritual suffering across illnesses and settings, PC clinicians must acquire advanced knowledge of disease-specific symptoms, common treatments, and complications that impact prognosis and outcomes. The tips provided in this article draw on the experience and knowledge of interprofessional PC and other specialist clinicians from diverse institutions across the United States who have developed and studied SAPC services across different disease groups. Recommendations include focusing on approaching specialty team partnerships with humility, curiosity, and diplomacy; focusing on patient populations where PC needs are great; clarifying how work and responsibilities will be divided between PC and other clinicians to the extent possible; using consults as opportunities for bidirectional learning; and adapting workflows and schedules to meet specialty team needs while managing expectations and setting limits as appropriate. Furthermore, to provide effective SAPC, PC clinicians must learn about the specific symptoms, prognoses, and common treatments of the patients they are serving. They must also build trusting relationships and maintain open communication with patients and referring clinicians to ensure integrated and aligned PC delivery.

Video Intervention and Goals-of-Care Documentation in Hospitalized Older Adults: The VIDEO-PCE Randomized Clinical Trial.

Importance: Despite the benefits of goals-of-care (GOC) communication, many hospitalized individuals never communicate their goals or preferences to clinicians. Objective: To assess whether a GOC video intervention delivered by palliative care educators (PCEs) increased the rate of GOC documentation. Design, Setting, and Participants: This pragmatic, stepped-wedge cluster randomized clinical trial included patients aged 65 years or older admitted to 1 of 14 units at 2 urban hospitals in New York and Boston from July 1, 2021, to October 31, 2022. Intervention: The intervention involved PCEs (social workers and nurses trained in GOC communication) facilitating GOC conversations with patients and/or their decision-makers using a library of brief, certified video decision aids available in 29 languages. Patients in the control period received usual care. Main Outcome and Measures: The primary outcome was GOC documentation, which included any documentation of a goals conversation, limitation of life-sustaining treatment, palliative care, hospice, or time-limited trials and was obtained by natural language processing. Results: A total of 10 802 patients (mean [SD] age, 78 [8] years; 51.6% male) were admitted to 1 of 14 hospital units. Goals-of-care documentation during the intervention phase occurred among 3744 of 6023 patients (62.2%) compared with 2396 of 4779 patients (50.1%) in the usual care phase (P < .001). Proportions of documented GOC discussions for Black or African American individuals (865 of 1376 [62.9%] vs 596 of 1125 [53.0%]), Hispanic or Latino individuals (311 of 548 [56.8%] vs 218 of 451 [48.3%]), non-English speakers (586 of 1059 [55.3%] vs 405 of 863 [46.9%]), and people living with Alzheimer disease and related dementias (520 of 681 [76.4%] vs 355 of 570 [62.3%]) were greater during the intervention phase compared with the usual care phase. Conclusions and Relevance: In this stepped-wedge cluster randomized clinical trial of older adults, a GOC video intervention delivered by PCEs resulted in higher rates of GOC documentation compared with usual care, including among Black or African American individuals, Hispanic or Latino individuals, non-English speakers, and people living with Alzheimer disease and related dementias. The findings suggest that this form of patient-centered care delivery may be a beneficial decision support tool. Trial Registration: ClinicalTrials.gov Identifier: NCT04857060.

Creating KidneyPal: A Specialty-Aligned Palliative Care Service for People with Kidney Disease.

BACKGROUND: Patients with kidney disease have notable unmet palliative care needs and represent an underserved population for specialty palliative care teams. INTERVENTION: We designed a specialty-aligned interprofessional palliative care service called KidneyPal that is aimed at improving delivery of palliative care to patients with kidney disease through focus groups and iterative improvement cycles. MEASURES: We iteratively measured the development of KidneyPal through clinical process metrics: percent of the inpatient nephrology census followed by KidneyPal, patient demographics, consult origin, clinician feedback, and self-reported team interventions. OUTCOMES: KidneyPal saw 314 unique patients from January 2019 to January 2021. The majority of consultations came from nephrology services though the source of consultation changed over time. We consulted on an average of 13.5% of the entire inpatient nephrology patient hospital census with highest involvement with patients on the inpatient nephrology hemodialysis service (mean of 29.9%). KidneyPal was rated highly by surveyed nephrology clinicians and provided high rates of psychosocial support and goals of care interventions. LESSONS LEARNED: The creation of KidneyPal led to us to serve a new cohort of patients with specialty palliative care. We grew over time to serve the full range of patients with kidney disease as defined by our nephrology service lines. We succeeded in doing so by embedding in nephrology and building relationships with those caring for people with kidney disease while tailoring our service and interventions over time.

Specialty-Aligned Palliative Care: Responding to the Needs of a Tertiary Care Health System.

BACKGROUND: Expanding specialty palliative care within complex health systems involves consideration of patients' unmet needs, clinicians' perceptions of palliative care, and the availability of palliative care resources. Prior to this quality improvement (QI) project, palliative care services in our health system primarily served oncology patients. INTERVENTION: We undertook a prospective strategic planning process that included executive sponsorship and engagement of institutional leaders and clinicians to help define which palliative care services were most needed by the health system. MEASURES: We interviewed and surveyed a broad range of clinicians including physicians, nurse practitioners, and social workers. OUTCOMES: The two most prominent themes that emerged from the stakeholder engagement process were clinicians' wish for specialty-aligned interprofessional palliative care teams and for expansion of nononcology palliative care access. CONCLUSION: Careful needs assessment and stakeholder engagement can result in goal-directed and data-driven expansion of palliative care services within tertiary health care systems.

Study protocol for Video Images about Decisions to Improve Ethical Outcomes with Palliative Care Educators (VIDEO-PCE): a pragmatic stepped wedge cluster randomised trial of older patients admitted to the hospital

INTRODUCTION: Despite the known benefit to patients and families, discussions about goals, values and preferences for medical care in advancing serious illness often do not occur. Many system and clinician factors, such as patient and clinician reticence and shortage of specialty palliative care teams, contribute to this lack of communication. To address this gap, we designed an intervention to promote goals-of-care conversations and palliative care referrals in the hospital setting by using trained palliative care educators and video decision aids. This paper presents the rationale, design and methods for a trial aimed at addressing barriers to goals-of-care conversations for hospitalised adults aged 65 and older and those with Alzheimer's disease and related Dementias, regardless of age. METHODS AND ANALYSIS: The Video Image about Decisions to Improve Ethical Outcomes with Palliative Care Educators is a pragmatic stepped wedge, cluster randomised controlled trial, which aims to improve and extend goals-of-care conversations in the hospital setting with palliative care educators trained in serious illness communication and video decision aids. The primary outcome is the proportion of patients with goals-of-care documentation in the electronic health record. We estimate that over 9000 patients will be included. ETHICS AND DISSEMINATION: The Institutional Review Board (IRB) at Boston Medical Center will serve as the single IRB of record for all regulatory and ethical aspects of this trial. BMC Protocol Number: H-41482. Findings will be presented at national meetings and in publications. This trial is registered at ClinicalTrials.gov. TRIAL REGISTRATION NUMBER: NCT04857060; ClinicalTrials.gov.

Development of a Palliative Care Toolkit for the COVID-19 Pandemic.

The Coronavirus disease 2019 (COVID-19) pandemic has led to high numbers of critically ill and dying patients in need of expert management of dyspnea, delirium, and serious illness communication. The rapid spread of severe acute respiratory syndrome-Coronavirus-2 creates surges of infected patients requiring hospitalization and puts palliative care programs at risk of being overwhelmed by patients, families, and clinicians seeking help. In response to this unprecedented need for palliative care, our program sought to create a collection of palliative care resources for nonpalliative care clinicians. A workgroup of interdisciplinary palliative care clinicians developed the Palliative Care Toolkit, consisting of a detailed chapter in a COVID-19 online resource, a mobile and desktop Web application, one-page guides, pocket cards, and communication skills training videos. The suite of resources provides expert and evidence-based guidance on symptom management including dyspnea, pain, and delirium, as well as on serious illness communication, including conversations about goals of care, code status, and end of life. We also created a nurse resource hotline staffed by palliative care nurse practitioners and virtual office hours staffed by a palliative care attending physician. Since its development, the Toolkit has helped us disseminate best practices to nonpalliative care clinicians delivering primary palliative care, allowing our team to focus on the highest-need consults and increasing acceptance of palliative care across hospital settings.