Trends in Specialty Palliative Care Service Utilization and In-Hospital Outcomes for Patients With Amyotrophic Lateral Sclerosis.

Background: Hospitalized people with amyotrophic lateral sclerosis (ALS) may benefit from specialty palliative care services (sPCS). Objective: To describe access to in-hospital sPCS for people with ALS (pALS). Methods: We compared years 2010-2011 to 2018-2019, and conducted trend analyses of sPCS from 2010 to 2019 stratified by race. Results: Of 103,193 pALS admitted during the study period, 13,885 (13.4%) received sPCS. Rates of sPCS increased over time (2010-2011: 8.9% vs. 2018-2019: 16.6%; p < 0.01). From 2010 to 2019, there was an increase in sPCS (p-trend<0.01) for all studied racial groups. Conclusions: Access to palliative care has increased over time for pALS admitted to hospitals in the United States.

Quality-of-life assessment instruments used across ALS clinics.

INTRODUCTION/AIMS: Instruments have been developed to assess quality of life (QoL) among people with amyotrophic lateral sclerosis (ALS). It is unclear whether these are utilized regularly in the clinical setting to guide individual patient care. In this study we aimed to understand the current use of instruments and existing barriers to assessing QoL in clinical ALS care. METHODS: An anonymous survey developed by Northeast ALS (NEALS) Consortium Palliative Committee members was distributed to all multidisciplinary NEALS members. Data were summarized via calculation of descriptive statistics. ALS Center characteristics were compared using chi-square and Fisher exact tests for categorical variables. RESULTS: Seventy-three (6.4%) of the 1132 NEALS members responded to the survey, representing 148 clinics, 49.3% of whom reported assessing QoL during clinic visits. The most used ALS-specific instruments were the ALS Assessment Questionnaire (19.4%) and Amyotrophic Lateral Sclerosis Specific Quality of Life scale (16.6%). Barriers reported were uncertainty regarding which instrument to use and length of visits. QoL assessment was not significantly correlated with length of clinic visit but with access to specialty palliative care. DISCUSSION: QoL assessments are performed by some, but not all, ALS centers during clinical visits. Although this study did have a low number of responding centers, the percentage, the proportion is similar to that seen in earlier studies, which limits the findings' generalizability. The value of QoL assessments' impact on outcomes should be further investigated and, if warranted, creative ways sought to increase the frequency of their use, including patient self-assessments before clinic and/or the use of teleheath to reduce the length of clinic visits.

Palliative Care Education in US Physical Medicine and Rehabilitation Residency Programs: Current Practices, Perceived Needs, and Barriers.

Background: Physical medicine and rehabilitation (PM&R) clinicians commonly care for patients with serious illness/injury and would benefit from primary palliative care (PC) training. Objective: To assess current practices, attitudes, and barriers toward PC education among U.S. PM&R residencies. Design: This is a cross-sectional study utilizing an electronic 23-question survey. Setting/Subjects: Subjects were program leaders from U.S. PM&R residency programs. Results: Twenty-one programs responded (23% response). Only 14 (67%) offered PC education through lectures, elective rotations, or self-directed reading. Pain management, communication, and nonpain symptom management were identified as the most important PC domains for residents. Nineteen respondents (91%) felt residents would benefit from more PC education, but only five (24%) reported undergoing curricular change. Lack of faculty availability/expertise and teaching time were the most endorsed barriers. Conclusion: PC education is heterogeneous across PM&R programs despite its perceived value. PC and PM&R educators can collaborate to build faculty expertise and integrate PC principles into existing curricula.

Top Ten Tips Palliative Care Clinicians Should Know about Multiple Sclerosis.

Multiple sclerosis (MS) is a chronic, immune-mediated, neurodegenerative condition of the central nervous system, with distinct challenges due to its heterogeneous presentation, prognostic uncertainty, and variable clinical course of neurological and non-neurological symptoms and disability. Although there have been significant advances in management of MS, many patients experience disability progression. Despite MS being a frequent cause of neurological disability, particularly in young persons, involvement of palliative care physicians in the care of patients with MS has been limited. This article provides ten tips for palliative clinicians for caring for patients with MS and their care partners.

The use of natural language processing in palliative care research: A scoping review.

BACKGROUND: Natural language processing has been increasingly used in palliative care research over the last 5 years for its versatility and accuracy. AIM: To evaluate and characterize natural language processing use in palliative care research, including the most commonly used natural language processing software and computational methods, data sources, trends in natural language processing use over time, and palliative care topics addressed. DESIGN: A scoping review using the framework by Arksey and O'Malley and the updated recommendations proposed by Levac et al. was conducted. SOURCES: PubMed, Web of Science, Embase, Scopus, and IEEE Xplore databases were searched for palliative care studies that utilized natural language processing tools. Data on study characteristics and natural language processing instruments used were collected and relevant palliative care topics were identified. RESULTS: 197 relevant references were identified. Of these, 82 were included after full-text review. Studies were published in 48 different journals from 2007 to 2022. The average sample size was 21,541 (median 435). Thirty-two different natural language processing software and 33 machine-learning methods were identified. Nine main sources for data processing and 15 main palliative care topics across the included studies were identified. The most frequent topic was mortality and prognosis prediction. We also identified a trend where natural language processing was frequently used in analyzing clinical serious illness conversations extracted from audio recordings. CONCLUSIONS: We found 82 papers on palliative care using natural language processing methods for a wide-range of topics and sources of data that could expand the use of this methodology. We encourage researchers to consider incorporating this cutting-edge research methodology in future studies to improve published palliative care data.

Top Ten Tips Palliative Care Clinicians Should Know About Disorders of Consciousness: A Focus on Traumatic and Anoxic Brain Injury.

Palliative care (PC) teams commonly encounter patients with disorders of consciousness (DOC) following anoxic or traumatic brain injury (TBI). Primary teams may consult PC to help surrogates in making treatment choices for these patients. PC clinicians must understand the complexity of predicting neurologic outcomes, address clinical nihilism, and appropriately guide surrogates in making decisions that are concordant with patients' goals. The purpose of this article was to provide PC providers with a better understanding of caring for patients with DOC, specifically following anoxic or TBI. Many of the tips acknowledge the uncertainty of DOC and provide strategies to help tackle this dilemma.

Defining Clinical Excellence for Palliative Care Specialists: A Concept Whose Time Has Come.

Experts in the field of palliative care in the United States (U.S.) have defined competence, or "good," mainly for programs, trainees, or providers of primary palliative care. Our interprofessional workgroup of palliative care specialists proposes that setting a standard for clinical excellence, or "great," applicable to palliative care specialists of all professions will elevate the field in the U.S. by providing an aspirational target usable for individual assessment and self-assessment, highlighting the common ground between team roles, and promoting a deeper understanding of teamwork, utilization, and productivity. We call for research that utilizes inclusive methods and broad representation of diverse voices to design a vivid, practical, and evidence-based definition of clinical excellence for palliative care specialists.

Top Ten Tips Palliative Care Clinicians Should Know About Strokes.

Stroke is a common cause of long-term disability and death, which leaves many patients with significant and unique palliative care (PC) needs. Shared decision-making for patients with stroke poses distinct challenges due to the sudden nature of stroke, the uncertainty inherent in prognostication around recovery, and the common necessity of relying on surrogates for decision-making. Patients with stroke suffer from frequently underrecognized symptoms, which PC clinicians should feel comfortable identifying and treating. This article provides 10 tips for palliative clinicians to increase their knowledge and comfort in caring for this important population.

Top Ten Tips Palliative Care Clinicians Should Know About Seizures at the End of Life.

Seizures are physically burdensome and emotionally distressing for patients, families, caregivers, and clinicians. Patients with neurological diseases are at increased risk of having complex, difficult-to-control seizures at the end of life. Palliative care (PC) clinicians asked to provide management of these seizures may not be familiar or comfortable with more complex seizures or epilepsy. A team of neurologists and PC specialists have compiled a list of tips to guide clinicians on how to care for patients having seizures and to support their families/caregivers.

Assessment of feasibility and utility of universal referral to specialty palliative care in a multidisciplinary amyotrophic lateral sclerosis clinic: A cohort study.

INTRODUCTION: Although the value of palliative care integration in multidisciplinary amyotrophic lateral sclerosis (ALS) clinics has been increasingly recognized, limited data are available demonstrating the feasibility and utility of a palliative care specialist embedded in an ALS clinic. The purpose of this study is to describe the feasibility and utility of a universal outpatient referral model for specialty palliative care for patients with amyotrophic lateral sclerosis. METHODS: This is a retrospective cohort study of initial patient visits with a palliative care physician in a multidisciplinary ALS clinic at an academic institution. All patients were referred to an embedded palliative care physician from January to December 2019. RESULTS: Within the study period, 52 of 69 (75%) patients with a confirmed diagnosis of ALS were seen by the palliative care physician. The most common reason patients were not seen by palliative care was a lack of insurance authorization (n = 5). At the visit, 94% of patients discussed at least one advance care planning or goals of care topic. The most common advance care planning topic discussed was code status (40%). The most common goals of care topic discussed was meaning and values (57%). Symptom management was discussed with 40 patients (77%). The most common symptom addressed was pain and/or muscle spasms (33%). DISCUSSION: These data support the feasibility and utility of universal, outpatient palliative care referral for patients with ALS. Further research is necessary to determine the long-term effect on outcomes for this population.

Needs assessment of current palliative care education in U.S. hematology/oncology fellowship programs.

BACKGROUND: Palliative care (PC) education for fellows in hematology/oncology (H/O) training programs is widely accepted, but no studies to date have assessed PC education practices and values among program leadership. METHODS: Program Directors and Associate Program Directors of active H/O fellowship programs in the U.S.A. were surveyed. RESULTS: Of 149 programs contacted, 84 completed the survey (56% response rate), of which 100% offered some form of PC education. The most frequently utilized methods of PC education were didactic lectures/conferences (93%), required PC rotations (68%), and simulation/role-playing (42%). Required PC rotations were ranked highest, and formal didactic seminars/conferences were ranked fifth in terms of perceived effectiveness. The majority felt either somewhat (60%) or extremely satisfied (30%) with the PC education at their program. Among specific PC domains, communication ranked highest, addressing spiritual distress ranked lowest, and care for the imminently dying ranked second lowest in importance and competency. Solid tumor oncologists reported more personal comfort with pain management (p = 0.042), non-pain symptom management (p = 0.014), ethical/legal issues (p = 0.029), reported their fellows were less competent in pain assessment/management (p = 0.006), and communication (p = 0.011), and were more satisfied with their program's PC education (p = 0.035) as compared with hematologists. CONCLUSIONS: Significant disparities exist between those modalities rated most effective for PC education and those currently in use. Clinical orientation of program leadership can affect both personal comfort with PC skills and estimations of PC curriculum effectiveness and fellows' competency. H/O fellowship programs would benefit from greater standardization and prioritization of active PC education modalities and content.

Primary Palliative Care Education for Trainees in U.S. Medical Residencies and Fellowships: A Scoping Review.

Background: The medical profession increasingly recognizes the growing need to educate nonpalliative physicians in palliative care. Objective: This study aims to provide a scoping review of the primary palliative care (PPC) education currently available to graduate medical trainees in primary and specialty tracks. Design: Studies of PPC interventions in U.S. residency or fellowship programs of all subspecialties published in English and listed on MEDLINE, CINAHL, and EMBASE through January 2020 were included. To meet admission criteria, studies had to describe the content, delivery methods, and evaluation instruments of a PPC educational intervention. Results: Of 233 eligible full texts, 85 studies were included for assessment, of which 66 were novel PPC educational interventions and 19 were standard education. Total number of publications evaluating PPC education increased from 8 (2000-2004) to 36 (2015-2019), across 11 residency and 10 fellowship specialties. Residency specialties representing the majority of publications were emergency medicine, general surgery, internal medicine, and pediatric/medicine-pediatrics. PPC content domains most taught in residencies were communication and symptom management; the primary delivery method was didactics, and the outcome assessed was attitudes. Fellowship specialties representing the majority of publications were pediatric subspecialties, nephrology, and oncology. The PPC content domain most taught in fellowships was communication; the primary delivery method was didactics and the outcome evaluated was attitudes. Conclusions: While PPC education has increased, it remains varied in content, delivery method, and intervention evaluations. Future studies should include more widespread evaluation of behavioral outcomes, longitudinal persistence of use, and clinical impact.

Trends in Published Palliative Care Research: A 15-Year Review.

BACKGROUND: There has been a call for palliative care (PC) published research to support the impact and need for more specialty PC services. OBJECTIVE: The purpose of this study was to characterize research in PC over a 15-year period in 3 PC journals published in the United States. DESIGN: The authors reviewed every issue of the Journal of Pain and Symptom Management, Journal of Palliative Medicine, and American Journal of Hospice and Palliative Medicine from 2004 through 2018. Studies included were original articles and brief reports. Study type (qualitative, quantitative), author (first and last), gender, and professional degree of the author (first and last) were recorded. RESULTS: A total of 4881 articles were included in this study. The proportion of quantitative papers significantly increased across 3 time points from 63% to 67% to 78%. The proportion of women first authors increased across all 3 time points (54%, 2004-2008; 57%, 2009-2013; 60%, 2014-2018), and the proportion of women last authors increased across all time points (38%, 2004-2008; 44%, 2009-2013; 46%, 2014-2018). More than 40% of authors were physicians. CONCLUSIONS: Published PC studies are increasingly quantitative in design. Gender authorship is female dominant for the first authors and increasingly equal across genders for the last authors.

Palliative Care Consults in an Inpatient Setting for Patients With Amyotrophic Lateral Sclerosis.

BACKGROUND: Limited data about the frequency and outcomes of palliative care (PC) specialty consultations for patients with amyotrophic lateral sclerosis (ALS) are available. METHODS: This study was a retrospective chart review. Patients with ALS admitted to 2 academic hospitals from 2013-2018 were included. We compared patients who were seen by an inpatient specialty PC service (PC group) with those who were not (NonPC group). RESULTS: Twenty-four patients met inclusion criteria (9 PC group, 15 NonPC group). Patients in both groups were similar in age and had been diagnosed for a similar amount of time before admission. In the PC group, 6 patients were seen by more than 1 PC multidisciplinary team member (physician, social worker, spiritual care provider, clinical nurse specialist). PC consultations were requested for goals of care (GOC) (n = 7), pain (n = 4), hospice information/referral (n = 2), dyspnea (n = 1), and excessive oral secretions (n = 1). GOC topics addressed for both groups were code status, treatment preferences (tracheostomy placement, percutaneous endoscopic gastrostomy placement, change to comfort care), prognostication, and hospice information/referral. Patients in the PC group were significantly more likely to be discharged with GOC (89%, p = 0.02) and completed advance care planning (ACP) documents (89%, p = 0.04) than patients in the NonPC group (32%; 47%). Despite reason for consultation, at least 1 symptom was addressed for every patient seen by PC specialists. CONCLUSIONS: Inpatient specialty PC consultation for patients with ALS leads to greater documentation of GOC and ACP by discharge. PC consultants participate in symptom management in patients with ALS during hospitalization.

Models of outpatient neuropalliative care for patients with amyotrophic lateral sclerosis.

OBJECTIVE: To describe some current models of outpatient neuropalliative care (NPC) available to patients with amyotrophic lateral sclerosis at different institutions within the United States. METHODS: Six NPC physicians were asked to contribute written descriptions about the PC available in their ALS clinics. Descriptions were then compiled and assessed for similarities and differences. RESULTS: All clinics are multidisciplinary, with regular appointments every 3 months and similar appointment times for new visits (60-120 minutes) and follow-up visits (20-45 minutes). Four clinics have an NPC specialist embedded within the ALS clinic, 1 institution has a separate clinic for NPC, and 1 institution has both. The NPC physician at 5 institutions is a neurologist with formal palliative care training and at 1 institution is an internist with formal palliative care training. NPC is part of routine care for all patients at 2 institutions, and the primary reasons for consultation are goals of care (GOC) and severe symptom management. CONCLUSION: NPC is provided to patients with ALS heterogeneously throughout the United States with some variation in services and delivery, but all clinics are addressing similar core needs. Given the poor prognosis and high PC needs, those with ALS are the ideal patients to receive NPC. Future studies are necessary given the paucity of data available to determine best practices and to better define meaningful outcomes.