Outcomes and Issues Addressed by Palliative Care in the Neurology Clinic.

Patients with neurological illnesses have many palliative care needs that need to be addressed in the outpatient clinical setting. This review discusses existing models of care delivery, including services delivered by neurology teams, palliative care specialists, telehealth, and home-based programs. We review the existing literature that supports these services and ongoing limitations that continue to create barriers to necessary clinical care for this vulnerable patient population.

Palliative Care in Neuro-oncology: an Update.

PURPOSE OF REVIEW: While the benefits of palliative care for patients with cancer are well established, palliative care in neuro-oncology is still in its early stages. However, in recent years, there has been increasing attention drawn to the need for better palliative care for patients with brain tumors. RECENT FINDINGS: There is a growing body of literature demonstrating the high symptom burden and significant supportive care and information needs of these patients and their caregivers. In the area of caregiver needs, the last 3 years has seen a more rapid growth in recognizing and characterizing these needs. However, there remains a knowledge gap regarding the optimal means of addressing these needs. In this article, we outline important recent advances in the literature on palliative care for patients with brain tumors and highlight areas in need of greater attention and investigation.

Integration of a palliative care specialist in an amyotrophic lateral sclerosis clinic: Observations from one center.

Palliative care specialists can aid in the care of patients with amyotrophic lateral sclerosis (ALS). In this article, we describe our 1-year experience incorporating a palliative care specialist into the ALS multidisciplinary team. We describe our integration model, patient selection, and visit content. Of 500 total clinic patients, 74 (14.8%) were seen by the palliative care specialist in 1 year. Referral was most often triggered by advance care planning needs (91%). In the initial visit with the palliative care specialist, topics most frequently covered included goals of care (84%), anxiety/depression (35%), and medical decision-making about feeding tubes (27%) or tracheostomy (31%). Symptom management comprised a relatively small number of the visits, and duration of visits was limited by patient fatigue. Patients with complex goals of care may benefit from the input of a palliative care specialist, and unique integration models may help to facilitate care delivery. Muscle Nerve 60: 137-140, 2019.

Curricular Reform in Serious Illness Communication and Palliative Care: Using Medical Students' Voices to Guide Change.

PURPOSE: To gather and leverage the voices of students to drive creation of required, integrated palliative care curricula within undergraduate medical education in Massachusetts, which is lacking in a majority of U.S. medical schools. METHOD: The study was conducted by the Massachusetts Medical Schools' Collaborative, a working group committed to ensuring all medical students in Massachusetts receive foundational training in serious illness communication (SIC) and palliative care. Eight focus groups (2 per participating medical school) were conducted during January-May 2021 and included a total of 50 students from Boston University Chobanian & Avedisian School of Medicine, Harvard Medical School, Tufts University School of Medicine, and the UMass Chan Medical School. Data collected from focus groups were discussed and coded. Themes were identified using the immersion/crystallization qualitative data analysis approach. RESULTS: Six key themes emerged. Students viewed SIC as essential to high-quality medical practice regardless of specialty, and believed training in SIC skills and palliative care should be required in medical school curricula. Students preferred to learn and practice these skills using frameworks, particularly in real-world situations. Students recognized the expertise of palliative care specialists and described them as a scarce, often misunderstood resource in health care. Students reported it was mostly "luck" if they were included in family meetings and observed good role models. Finally, students desired practice in debriefing after difficult and emotional situations. CONCLUSIONS: This study confirms long-standing themes on students' experiences with SIC and palliative care topics, including feeling inadequately prepared to care for seriously ill patients as future physicians. Our study collected students' perspectives as actionable data to develop recommendations for curricular change. Collaborative faculty also created recommendations based on the focus group data for immediate and ongoing SIC and palliative care curricular change in Massachusetts, which can apply to medical schools nationwide.

Outpatient neuropalliative care.

Palliative care is an approach to patient care that focuses on enhancing quality of life through relief of physical, emotional, and spiritual sources of distress and patient-tailored discussions about goals of care. The palliative care approach can be delivered by any provider, and can occur alongside disease-modifying therapies. For patients with a serious neurologic illness or a neurodegenerative disease, neuropalliative care is a growing field focused on providing high-quality palliative care to neurology patients. There are three models of neuropalliative care delivery in the outpatient setting: a consultative model with a palliative care specialist, an integrated model with an embedded palliative care provider, and a primary palliative care model with the patient's neurology provider. The main components of an outpatient palliative care visit include symptom assessment and treatment, communication about serious illness, advance care planning, and assessment of caregiver needs. For patients with advanced illness, palliative care can help facilitate timely referral to hospice. Through a palliative care approach, outpatient care for patients with serious neurologic disease or neurodegenerative disease can focus on the issues most important to the patient, promote improved illness understanding and planning, and can improve the overall quality of care.

Assessing the Impact of a Hospice and Palliative Medicine Mentored Clinical Shadowing Experience for First-Year Medical and Dental Students: A Pilot Study.

Background: All physicians encounter patients with serious illness. Medical students recognize the value of hospice and palliative medicine (HPM) and desire more knowledge and skills in this area. However, both pre-clinical and clinical HPM content are underrepresented within medical school curricula. Objectives: To conduct a pilot study examining the impact of a novel required HPM clinical experience on pre-clinical medical and dental students' learning through mixed methods evaluation of student responses. Design: Students completed a two-part electronic survey following a half-day HPM mentored clinical shadowing experience (HPM-MCSE) which included an introductory session, a faculty-mentored shadowing experience and a debriefing session. Setting/subjects: 163 first-year students at Harvard Medical School in Boston, Massachusetts, USA in 2022. Measurements: The survey collected demographic information and student responses to both closed-ended (Likert-scale) and open-ended prompts. Data were analyzed quantitatively using descriptive statistics and qualitatively using constant comparative methodology. Results: 127 medical and dental students responded (78% response rate). Qualitative analysis yielded three overarching themes: acquisition of knowledge about operational dimensions of HPM, acquisition of knowledge about psychosocial dimensions of HPM, and personal impact including an awareness of discordance between expectations and lived experience of HPM practice. Of the 109 students who completed the entire survey, 67% indicated that this experience increased their interest in palliative care and 98% reported an increase in their understanding of how palliative care enhances patient care. Conclusions: Early clinical exposure to HPM for first year students stimulates multi-dimensional learning about HPM and evokes personal reflection about serious illness care.

Strategies to improve the experience of patients with brain tumors in the inpatient rehabilitation setting: development of a care coordination checklist.

PURPOSE: To develop a checklist to facilitate coordination of care and communication of patients with brain tumors and assess the benefit of the checklist using a quality improvement survey. MATERIALS AND METHODS: Rehabilitation teams are challenged to respond to the unique needs of patients with brain tumors as this population requires coordinated care across multiple disciplines with frequent communication. To improve care of this patient population in an IRF setting, we developed a novel checklist using a multidisciplinary team of clinicians. Our checklist aims to improve communication between multiple treatment teams, achieve appropriate goals during the IRF stay, involve services as needed and arrange post-discharge services for patients with brain tumors. We then used a quality improvement survey among clinicians to assess the efficacy and general opinion of the checklist. RESULTS: A total of 15 clinicians completed the survey. 66.7% felt that the checklist improved care delivery, and 66.7% felt the checklist improved communication between providers internally and with external institutions. More than half felt the checklist improved the patient experience and care delivery. CONCLUSIONS: A care coordination checklist has the potential to address the unique challenges experienced by patients with brain tumors to improve overall care for this population.IMPLICATIONS FOR REHABILITATIONSuccessful clinical care and rehabilitation of patients with brain tumors requires the coordinated efforts of an interdisciplinary team that often spans multiple care settings.A care coordination checklist has the potential to address the unique challenges experienced by patients with brain tumors to improve overall care for this population in the inpatient rehabilitation setting.

A roadmap for early psychosocial support in palliative care for people impacted by ALS-reducing suffering, building resiliency, and setting the stage for delivering timely transdiagnostic psychosocial care.

This commentary describes the current state of psychosocial care for people with amyotrophic lateral sclerosis and their caregivers. We provide recommendations for developing a roadmap for future research based on existing literature and our group's clinical and research experience to inform next steps to expand evidence-based psychosocial care for people with amyotrophic lateral sclerosis and their caregivers, with potential implications for a range of advanced illnesses.

This article talks about psychosocial care for people with amyotrophic lateral sclerosis and the loved ones who take care of them (caregivers). We talk about gaps in current psychosocial care and offer ideas about research to help develop care options for people with amyotrophic lateral sclerosis and their caregivers. It is possible that this work could also guide the development of psychosocial care for people with other advanced illnesses and their caregivers.

Resilient together-ALS: leveraging the NDD transdiagnostic framework to develop an early dyadic intervention for people with amyotrophic lateral sclerosis and their informal care-partners.

Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease characterized by progressive weakness and eventual death, usually within 3-5 years. An ALS diagnosis is associated with substantial emotional distress for both the affected person and their family care-partners which impairs the ability to engage in important conversations about long term care planning, negatively impacts ALS symptoms for the patient, and quality of life for both patient and care-partner. Here we 1) discuss published works identified by the authors about psychosocial interventions for the ALS population, 2) identify a lack of early, dyadic interventions to support psychosocial needs of people with ALS and care-partners; 3) describe the Neurodegenerative Diseases (NDD) framework for early dyadic intervention development and 4) propose an adaptation of an evidence-based early dyadic psychosocial intervention, Recovering Together, for the unique needs of people with ALS and their care-partners (Resilient Together-ALS; RT-ALS) using the NDD framework. Future work will use stakeholder feedback to optimize the intervention for subsequent efficacy testing.

Graduating US neurology residents' experience with tissue-type plasminogen activator for acute stroke: a 10-year comparison.

BACKGROUND AND PURPOSE: A survey of graduating neurology residents conducted in 2000 showed that many residents had limited experience and comfort treating with tissue-type plasminogen activator (tPA). We examined changes in residents' experience during the past decade. METHODS: A 12-item survey was sent to US neurology residents in their final year of training. Items examined residents' experience and confidence with assessment of the acute stroke patient and use of tPA for treatment. Questions were worded identically in the 2000 and 2010 surveys, and responses were compared between the two. RESULTS: Of 491 residents, 286 (58%) responded. There was a significant increase from 2000 to 2010 in the percentage of residents who felt comfortable independently treating with tPA (73% versus 94%, P<0.001), who had observed administration of tPA (88% versus 99%, P<0.001), who had personally treated with tPA (80% versus 95%, P<0.001), and who had been involved in post-tPA care (89% versus 98%, P<0.001). There was a substantial increase in residents with formal training in using the National Institutes of Health Stroke Scale (65% versus 92%, P<0.001) and who had dedicated stroke teams at their institution (84% versus 93%, P=0.001). CONCLUSIONS: Neurology residents' experience and comfort treating acute ischemic stroke with tPA increased significantly between 2000 and 2010, as did resident exposure to stroke teams and formal training in the National Institutes of Health Stroke Scale.

Palliative Care for Polio and Postpolio Syndrome.

Palliative care is a team-based approach focusing on relief of physical, psychosocial, and existential distress and communication about serious illness. Patients with poliomyelitis and postpolio syndrome are at risk for contractures and can benefit from involvement of physical and occupational therapy. Hypersialorrhea can be treated with anticholinergic medications, botox, or radiation. Patients with dyspnea may require noninvasive positive pressure ventilation ± opioids or benzodiazepines. Constipation is often due to autonomic dysfunction and decreased mobility. There is a higher burden of anxiety. Early conversations about patients' goals and values as it relates to their health may help frame future decision-making.

Natural Language Processing to Assess Palliative Care and End-of-Life Process Measures in Patients With Breast Cancer With Leptomeningeal Disease.

BACKGROUND: Palliative care consultation during serious life-limiting illness can reduce symptom burden and improve quality of care. However, quantifying the impact of palliative care is hindered by the limitations of manual chart review and administrative coding. OBJECTIVES: Using novel natural language process (NLP) techniques, we examined associations between palliative care consultations and performance on nationally endorsed metrics for high-quality end-of-life (EOL) care in patients with leptomeningeal disease (LMD) secondary to metastatic breast cancer. METHODS: Patients with breast cancer with LMD were identified using administrative billing codes and NLP review of magnetic resonance imaging reports at 2 tertiary care centers between 2010 and 2016. Next, NLP was used to review clinical notes to (1) determine the presence of palliative care consultations and (2) determine the performance of process measures associated with high-quality EOL care, including discussions of goals of care, code status limitations, and hospice. Associations between palliative care consultation and documentation of EOL process measures were assessed using logistic regression. RESULTS: We identified 183 cases of LMD. Median age was 56 (interquartile range [IQR]: 46-64) years and median survival was 150 days (IQR: 67-350). Within 6 months of diagnosis, 88.5% of patients had documentation of ≥1 process measure, including discussions of goals of care (63.4%), code status limitations (62.8%), or hospice (72.1%). Palliative care consultation was a predictor of subsequent documentation of goals of care (odds ratio [OR], 3.15; 95% confidence interval [CI], 1.58-6.27) and hospice discussions (OR, 4.61; 95% CI, 2.12-10.03). CONCLUSION: Palliative care involvement is associated with increased performance of EOL process measures in patients with breast cancer with LMD.

Neurology clinicians' views on palliative care communication: "How do you frame this?"

BACKGROUND: The communication process of preparing patients and families facing progressive neurodegenerative diseases for future illness has not been empirically elucidated; the goal of this qualitative study was to explore neurology interdisciplinary health professionals' communication experiences, including current approaches, facilitators, and challenges. METHODS: Three focus groups were conducted with 22 clinicians representing a range of health professions from several multidisciplinary neurology outpatient clinics at a large academic medical center. A thematic analysis approach was used to develop a coding structure and identify overarching themes. RESULTS: Neurology clinicians highlighted that in their practice, (1) conversations are triggered by acute events and practical needs; (2) conversations occur routinely but are rarely documented; (3) loss of patient capacity and resultant surrogate decision-making can be ethically fraught, especially in times of family conflict; (4) prognostic uncertainty, unfamiliarity with disease trajectories, and patient or surrogate avoidance pose communication challenges; and (5) generalist- and specialty-level palliative care roles should be better defined. CONCLUSIONS: There is a need for a systematic, structured approach to communication that can be applied early in the disease trajectory and considered when developing integrated neuro-palliative care programs.

Understanding the needs of people with ALS: a national survey of patients and caregivers.

Objective: Amyotrophic lateral sclerosis (ALS) has profound effects on people with ALS (PALS) and caregivers. There is a paucity of research detailing and comparing PALS and caregiver day-to-day perspectives of ALS. Methods: A survey developed collaboratively by The ALS Association and a panel of experts in ALS care was designed to broadly sample the experience of PALS and caregivers with respect to physical and emotional symptoms, the efficacy of treatment approaches, and goals for future treatments. Specific physical symptoms assessed consisted of fatigue, pain, weakness, shortness of breath, difficulty sleeping, speech problems, depression and other mood changes, and cognitive changes. PALS, caregivers of living patients with ALS (C-LPALS), and caregivers of deceased patients with ALS (C-DPALS) were contacted by email to participate in a 30-minute online survey. Results: 887 PALS, 444 C-LPALS, and 193 C-DPALS responded to the survey. In comparison to PALS, C-LPALS perceived that PALS had significantly higher rates of all surveyed symptoms except for pain and weakness. Caregivers self-reported higher stress levels than PALS (p < 0.001). 35% (135/383) of caregivers reported experiencing a devastating or near devastating financial impact of ALS and 64% (247/383) of caregivers felt their own health had worsened. Caregivers were significantly less likely to perceive a positive response to treatment in comparison to PALS (p < 0.001). Conclusions: PALS and caregivers report a number of symptoms beyond weakness that affect daily life which may be targets of future interventions. There are opportunities to improve services and care for caregivers to reduce the burden of illness.

Needle in a Haystack: Natural Language Processing to Identify Serious Illness.

BACKGROUND: Alone, administrative data poorly identifies patients with palliative care needs. OBJECTIVE: To identify patients with uncommon, yet devastating, illnesses using a combination of administrative data and natural language processing (NLP). DESIGN/SETTING: Retrospective cohort study using the electronic medical records of a healthcare network totaling over 2500 hospital beds. We sought to identify patient populations with two unique disease processes associated with a poor prognosis: pneumoperitoneum and leptomeningeal metastases from breast cancer. MEASUREMENTS: Patients with pneumoperitoneum or leptomeningeal metastasis from breast cancer were identified through administrative codes and NLP. RESULTS: Administrative codes alone resulted in identification of 6438 patients with possible pneumoperitoneum and 557 patients with possible leptomeningeal metastasis. Adding NLP to this analysis reduced the number of patients to 869 with pneumoperitoneum and 187 with leptomeningeal metastasis secondary to breast cancer. Administrative codes alone yielded a 13% positive predictive value (PPV) for pneumoperitoneum and 25% PPV for leptomeningeal metastasis. The combination of administrative codes and NLP achieved a PPV of 100%. The entire process was completed within hours. CONCLUSIONS: Adding NLP to the use of administrative codes allows for rapid identification of seriously ill patients with otherwise difficult to detect disease processes and eliminates costly, tedious, and time-intensive manual chart review. This method enables studies to evaluate the effectiveness of treatment, including palliative interventions, for unique populations of seriously ill patients who cannot be identified by administrative codes alone.

The Comprehensive Management of Cerebellar Ataxia in Adults.

PURPOSE OF REVIEW: In this review, we present the multidisciplinary approach to the management of the many neurological, medical, social, and emotional issues facing patients with cerebellar ataxia. RECENT FINDINGS: Our holistic approach to treatment, developed over the past 25 years in the Massachusetts General Hospital Ataxia Unit, is centered on the compassionate care of the patient and their family, empowering them through engagement, and including the families as partners in the healing process. We present the management of ataxia in adults, beginning with establishing an accurate diagnosis, followed by treatment of the multiple symptoms seen in cerebellar disorders, with a view to maximizing quality of life and effectively living with the consequences of ataxia. We discuss the importance of a multidisciplinary approach to the management of ataxia, including medical and non-medical management and the evidence base that supports these interventions. We address the pharmacological treatment of ataxia, tremor, and other associated movement disorders; ophthalmological symptoms; bowel, bladder, and sexual symptoms; orthostatic hypotension; psychiatric and cognitive symptoms; neuromodulation, including deep brain stimulation; rehabilitation including physical therapy, occupational therapy and speech and language pathology and, as necessary, involving urology, psychiatry, and pain medicine. We discuss the role of palliative care in late-stage disease. The management of adults with ataxia is complex and a team-based approach is essential.

Neurologic Manifestation of Chikungunya Virus.

PURPOSE OF REVIEW: Chikungunya virus (CHIKV) is a RNA arbovirus that typically causes fevers and arthralgias, but reports of neurologic findings have become increasingly common. This article reviews our current understanding of CHIKV-associated neurologic manifestations. RECENT FINDINGS: In the last 5 years, CHIKV endemicity has spread to the Americas and the number of cases of CHIKV-related disease has dramatically increased. Evidence suggests increasing neurovirulence of the virus, particularly among the critically ill. The spectrum of neurologic manifestations of the disease includes encephalitis, myelitis, and Guillain-Barre syndrome, but isolated reports of cranial neuropathies and cognitive deficits associated with recent infection also are reported. Though neurologic symptoms associated with CHIKV remain relatively uncommon, their frequency appears to be increasing. Clinicians treating patients with neurologic symptoms from CHIKV endemic areas should be aware of the growing association between CHIKV and neurologic sequelae to help guide diagnostics. Research into the optimal treatment of the disease is needed to inform treatment practices.