Search

Serious neurological illnesses are associated with significant palliative care needs, including symptom management, complex decision-making, support for caregivers, and end-of-life care. While all neurologists are responsible for the provision of primary palliative care, there is an increasing need for trained neurologists with expertise in palliative medicine to manage refractory symptoms, mitigate conflict around goals of care, and provide specialized end-of-life care. This has led to the emergence of neuropalliative care as a subspecialty. There are different ways to acquire palliative care skills, incorporate them into one's neurology practice, and develop a neuropalliative career. We interviewed three leaders in the field of neuropalliative care, Dr. Robert Holloway, Dr. Jessica McFarlin, and Dr. Janis Miyasaki, who are all neurologists with different subspecialties and training pathways working in academic centers. They share their career paths, their advice for neurology trainees interested in pursuing a career in neuropalliative care, and their thoughts on the future of the field.

The importance and value of providing palliative care for patients with neurologic disease is increasingly recognized. While palliative and neuropalliative specialists may be well-positioned to provide this care, there is a shortage of specialists to address these needs. As a result, much of the upfront palliative care will naturally be provided by the treating neurologist. It is imperative that all neurologists receive quality training in primary palliative care skills. As the subspecialty of neuropalliative care grows, the need for specialty neuropalliative education has arisen. This chapter reviews existing educational initiatives and common neuropalliative-oriented career tracks and identifies opportunities for growth along the continuum of medical education and beyond.

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.

This Viewpoint advocates for the integration of neuropalliative care as a vital practice for supporting patients with neurological disease and their families.

Palliative medicine clinicians in hospital settings are often involved in the care of patients dying in critical care settings, with a subset from brain death. Brain death is a complex concept, not only for families, but also for clinicians. There is wide variability in adhering to formalized guidelines for brain death determination. In addition, communication techniques regarding brain death determination are distinct from those used in shared decision-making. There is a need to obtain knowledge and practical skills in brain death determination, including examination and communication. Simulation can provide a low-stakes setting to practice the process of brain death determination and communication.Describe a novel approach using high-fidelity simulation to teach hospice and palliative medicine fellows the practical and nuanced aspects of brain death determination and communication. Discuss the impact on fellows' confidence and knowledge for this learning activity.This three-hour workshop includes a didactic session followed by a single case conducted in three parts using standardized patient encounters and high-fidelity simulation with manikin. It is delivered annually, as part of the monthly core didactic conference for all hospice and palliative medicine fellows in the four fellowship programs in our region.Pre- and post-intervention surveys were performed assessing perceived confidence and content-related knowledge, which showed significant improvement in both areas.Simulation is a practical and constructive method for teaching the challenging concepts and unique communication skills involved in brain death determination.

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.

Despite increasing awareness of the importance of a palliative care approach to meet the needs of persons living with neurologic illness, residency and fellowship programs report meeting this educational need due to a limited pool of neuropalliative care educators and a lack of adequate educational resources. To meet this need, a group of experts in neuropalliative care and palliative medicine leveraged resources from the Education in Palliative and End-of-life Care (EPEC) program and the National Institutes of Nursing Research to create a library of modules addressing topics relevant for neurology trainees, palliative medicine fellows, and clinicians in practice. In this article, we describe the development and dissemination plan of the EPEC Neurology program, initial evidence of efficacy, and opportunities for neurology educators and health services researchers to use these resources.

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.

ObjectiveTo describe some current models of outpatient neuropalliative care (NPC) available to patients with amyotrophic lateral sclerosis at different institutions within the United States.MethodsSix 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.ResultsAll 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.ConclusionNPC 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.

Recent discoveries support the principle that palliative care may improve the quality of life of patients with Parkinson’s disease and those who care for them. Advance care planning, a component of palliative care, provides a vehicle through which patients, families, and clinicians can collaborate to identify values, goals, and preferences early, as well as throughout the disease trajectory, to facilitate care concordant with patient wishes. While research on this topic is abundant in other life-limiting disorders, particularly in oncology, there is a paucity of data in Parkinson’s disease and related neurological disorders. We review and critically evaluate current practices on advance care planning through the analyses of three bioethical challenges pertinent to Parkinson’s disease and propose recommendations for each.

Nonhemorrhagic neurological deficits are underrecognized symptoms of intracranial dural arteriovenous fistulas (dAVFs) having cortical venous drainage. These symptoms are the consequence of cortical venous hypertension and portend a clinical course with increased risk of neurological morbidity and mortality. One rarely documented and easily misinterpreted type of nonhemorrhagic neurological deficit is progressive dementia, which can result from venous hypertension in the cortex or in bilateral thalami. The latter, which is due to dAVF drainage into the deep venous system, is the less common of these 2 dementia syndromes. Herein, the authors report 4 cases of dAVF with venous drainage into the vein of Galen causing bithalamic edema and rapidly progressive dementia. Two patients were treated successfully with endovascular embolization, and the other 2 patients were treated successfully with endovascular embolization followed by surgery. The radiographic abnormalities and presenting symptoms rapidly resolved after dAVF obliteration in all 4 cases. Detailed descriptions of these 4 cases are presented along with a critical review of 15 previously reported cases. In our analysis of these 19 published cases, the following were emphasized: 1) the clinical and radiographic differences between dAVF-induced thalamic versus cortical dementia syndromes; 2) the differential diagnosis and necessary radiographic workup for patients presenting with a rapidly progressive thalamic dementia syndrome; 3) the frequency at which delays in diagnosis occurred and potentially dangerous and avoidable diagnostic procedures were used; and 4) the rapidity and completeness of symptom resolution following dAVF treatment.

Background and Purpose: Seizures are a known complication of ischemic stroke (IS). This study assesses the long-term incidence and characteristics of poststroke seizures in a well-defined population. Methods: Using the Rochester Epidemiology Project medical records-linkage system, we identified all incident cases of IS among Rochester, Minnesota, residents from 1990 to 1994 and followed the patients in the comprehensive medical record through March 2014. All patients with poststroke seizures were identified, and data regarding incident IS, seizures, and status at last follow-up were analyzed. Results: We identified 489 patients with first IS. Mean follow-up was 6.5 (standard deviation 6.3) years. New onset seizures occurred in 35 patients (7.2%). Patients with poststroke seizure did not differ from those without in terms of IS etiologic subtype (P = .44) or IS risk factors (P > .05). Early seizures (within 14 days of index stroke) developed in 14 patients (40%), the majority within the first 24 hours (n = 9, 64.3%). The median time of seizure onset for the remaining 21 patients was 13.8 months. Functional outcome, as measured by modified Rankin Scale (mRS), was worse following development of poststroke seizures (mean mRS score 2.9 after IS, 3.3 following index seizure; P = .005), and mortality was higher as well, even after adjusting for IS etiologic subtype (HR 1.52, 95% confidence interval 1.07-2.16, P = .02). Conclusion: Development of poststroke seizures is an infrequent but significant complication of IS, portending a worse short-term functional outcome and a higher long-term mortality rate. Seizure occurrence did not differ based on IS etiologic subtype or stroke risk factors.

The prevalence of obesity continues to rise in the United States and impacts on morbidity, mortality and overall costs in health care considerably. In 2013–2014, more than one-third (37.9%) of U.S. adults were classified as obese, and the prevalence of those with a body mass index (BMI) ≥40kg/m2, was 7.7%. (1) The heaviest groups (BMI ≥50kg/m2) increases in prevalence at the fastest rates. (2) Pertinent to healthcare providers—the larger the patient, the more health care resources utilized and the worse the survival. (3) Having a BMI >40kg/m2 predicts use of more than double the healthcare dollars of a normal weight individual. (4) Providing care to individuals with severe obesity is complex, as the physiologic changes associated with morbid and super obesity alter the pharmacokinetic properties of most drugs. (5) Derangements in cardiovascular and respiratory physiology make the patients with morbid obesity more vulnerable to drug-induced respiratory depression and upper airway obstruction, thus increasing the risk of treating them with opioids. In reviewing the literature, it appears that much of what is understood regarding the care of patients with super obesity must be extrapolated from what is known regarding the morbidly obese, a group that has been studied more frequently. The term “super obesity” has been used variably, but defined often as weighing 150 pounds or more than ideal body weight or having a BMI ≥50kg/m. (6) Herein we present a case of a patient with a BMI of 100kg/m2 admitted with uncontrolled pain due to large necrotic skin ulcers from nonuremic calciphylaxis. Through this case, we review the limitations of data regarding pharmacologic properties for those with super obesity, and provide palliative medicine providers with a framework for such management.

We present the case of a 34-year-old woman with Klippel-Feil syndrome who developed progressive generalized dystonia of unclear etiology, resulting in intractable pain despite aggressive medical and surgical interventions. Ultimately, palliative sedation was required to relieve suffering. Herein, we describe ethical considerations including defining sedation, determining prognosis in the setting of an undefined neurodegenerative condition, and use of treatments that concurrently might prolong or alter end-of-life trajectory. We highlight pertinent literature and how it may be applied in challenging and unique clinical situations. Finally, we discuss the need for expert multidisciplinary involvement when implementing palliative sedation and illustrate that procedures and rules need to be interpreted to deliver optimal patient-centered plan of care.

While up to 80% of medical errors may result from poor communication at clinical transitions of care, there has been relatively little study of the effect of standardized communication tools on clinical quality measures. We prospectively examined the effect of a standardized handoff checklist on clinical outcomes for patients dismissed from the neurointensive care unit. We found that the checklist resulted in significant reductions in patients transferred with inaccurate medication reconciliation and unnecessary urinary catheters. Participating physicians were surveyed and generally viewed the handoff checklist favorably. Standardized communication tools such as checklists may play a useful role in reducing medical errors related to communication between patient care teams.

Introduction: Studies have suggested a high incidence of dementia after stroke; however data regarding risk factors are conflicting and few studies are population-based. The aims of this population-based study are to determine the frequency of diagnosis and predictors of clinical dementia after ischemic stroke. Methods: The Rochester Epidemiology Project medical records linkage system was used to ascertain all first ischemic strokes (IS) occurring among Rochester, MN residents between 1990 -1994. Comprehensive medical records were reviewed. Patient and stroke characteristics, medical comorbidities, and the development of clinical dementia any time after IS were recorded. Dementia was defined as any reflection in the chart by a clinician of memory loss resulting in functional impairment. Patients with a pre-stroke diagnosis of dementia were excluded. Associations between new dementia after the index IS and other variables of interest were analyzed using univariate logistic regression. Results: First IS was detected in 490 people, 82 of whom had a prior history of dementia, and 119 (29%) of whom developed dementia during a mean follow-up of 6.5 years (range 0-23.8). The mean age at index stroke was 76.6 years (SD 12.9). Those who developed dementia were a mean 4 years older at the time of IS (p = 0.003). The odds of developing dementia were 1.7 higher in those who had at least one recurrent stroke. There was no effect of sex, stroke location (cortical, subcortical, brainstem), stroke mechanism, or premorbid stroke risk factors (coronary artery disease, atrial fibrillation/flutter, hypertension, diabetes mellitus, left-sided valvular disease) on the occurrence of dementia. Conclusions: Dementia is commonly diagnosed following ischemic stroke. While stroke risk factors did not impact the risk of diagnosis of dementia, recurrent stroke increased this risk. Stroke risk factors may indirectly increase the risk of dementia by increasing the risk of recurrent IS. This suggests that aggressive secondary stroke prevention measures may significantly decrease the risk of being diagnosed with dementia following IS.

Background & Purpose: Seizures are a recognized complication of stroke. However, available data are conflicting in terms of incidence, risk factors for occurrence, and impact on functional outcome and mortality. The aim of this study was to assess the incidence and characteristics of seizures following ischemic stroke in a well-defined population, and their effect on long-term patient outcome. Methodology: Utilizing the Rochester Epidemiology Project medical record linkage system, we identified all incident cases of ischemic stroke (IS) that occurred between January 1, 1990, and December 31, 1994. We identified all patients who developed seizures following first IS. Detailed data regarding stroke (including TOAST subtype, anatomic location, functional outcome), seizures (date, type, functional outcome, recurrence, presence of status epilepticus, complications, treatment, EEG findings), and patient status at the last follow-up were recorded and analyzed. Results: We identified 490 patients with first IS. Mean follow-up was 6.5 years (range 0.0 - 23.8). Of these, 35 (7.1%) developed seizures. Early seizures (occurring within 14 days of stroke) were present in 13 (37.1%), of which 9 (69.2%) had their seizure within the first 24 hours. Partial seizures were the most common type (23 patients, 65.7%). Status epilepticus occurred in two cases (5.7%). Tongue biting was the most common complication of poststroke seizures (4 patients, 11.4%). Treatment with antiepileptic drugs (AEDs) was initiated in 32 cases (91.4%). Only one drug was necessary for seizure control in all treated patients. The mean modified Rankin Scale score was 2.9 (SD 1.48) after the first IS, and worsened to 3.3 (SD 1.43) after the first seizure. Mortality at the last follow-up was higher in the seizure group compared to the non-seizure group, even after adjusting for TOAST subtype (HR 1.52; 95% CI 1.07 - 2.16; P = 0.02). Conclusion: Seizures are mostly a late complication of IS. They do not bear a high risk of life-threatening complications and are readily controllable by a single AED. However, patients who developed poststroke seizures tended to have a worse functional outcome and an increased mortality.

Background: Coronary artery disease (CAD) is a significant cause of morbidity and mortality in ischemic stroke (IS) patients. IS and CAD often coexist and share common risk factors. Absolute risk and predictors of myocardial infarction (MI) in IS and by IS etiology subtype is not well known. We determined the risk of MI and its predictors in patients with incident IS in a population based cohort. Methods: Using the Rochester Epidemiology Project (REP) medical records linkage system we identified all residents with incident IS in a 5-year period between January 1, 1990, and December 31, 1994. Comprehensive medical records were reviewed and variables of interest were retrieved and analyzed. Univariate Cox proportional hazard regression models were constructed to assess hazard ratios and 95% CI for predictors of MI occurrence after IS. Results: We identified 490 persons with IS, mean age at IS was 76.6 (SD 12.9) years, mean follow up to death or final follow-up was 6.5 (SD 6.3, range 0.0-23.8) years. There were 126 recurrent strokes and 93 MIs during followup. The 1-year actuarial risk of MI was 3.6% (95% CI, 2.2% - 5.9%), and 5-year actuarial risk of MI was 11.4% (95% CI, 8.4% - 15.3%). Univariate predictors of MI included (HR; 95% CI): age (1.02;1.0-1.04), pre-IS history of MI (1.37;1.13-1.65), CHF (1.85;1.06-3.23), CABG (2.11;1.19-3.75), left ventricular dyskinesia (2.14;1.32-3.4), peripheral vascular disease (1.32;1.18-1.49), diabetes mellitus (1.54;1.21-1.96), elevated creatinine (1.93;1.44-2.59), LDL level (1.01;1.00-1.01). Conclusion: MI is common after first IS. Several factors predicted an increased risk of MI after stroke, and should be taken into account in determining CAD screening strategies at the time of IS. Recurrent stroke was more common than MI during long-term followup.

Telemedicine is used for specialist consultation, patient evaluation, and remote monitoring. We propose that telemedicine has a valuable role in medical education through facilitating faculty supervision of trainees.We surveyed resident physician trainees and faculty at a single institution who provided service for acute neurologic consultations over 29 months. The survey compared experiences using the supervisory methods of telephone, robotic telepresence (RTP), and in-person interaction. Participants answered 10 questions addressing their experience relevant to faculty-trainee interaction quality and clinical supervision, achieved with the three supervisory methods under study.Surveys were received from 20 of 36 trainees (56%) and 8 of 10 faculty members (80%). More than 90% of trainees and faculty strongly agreed that in-person communication was satisfactory for patient data review, problem synthesis, and refinement of the trainees' impressions, with RTP ranking a close second. Moreover, 38% of faculty and 70% of trainees reported the telephone method as unsatisfactory for reacquisition of patient history, data synthesis, and direct observation of trainees' clinical skills. RTP provided more than 90% of trainees with sufficient staff support and facilitated trainee autonomy.Overall, 85% of both trainees and faculty preferred in-person supervision most, with RTP ranked second and telephone being least favored. Although in-person faculty supervision of trainees' management of neurologic emergencies is always preferred, it is not always practical. This survey highlights the valuable role of RTP in graduate medical education and RTP as preferred over telephone as an adjunctive supervision tool in residency.