End-of-Life and Hospice Care in Neurologic Diseases.

The care of a patient with neurologic disease at end-of-life requires expertise in addressing advance care planning, hospice, symptom management, and caregiver support. Neurologists caring for patients with advanced neurologic disease often identify changes in disease trajectory, functional status, or goals of care that prompt discussions of advance care planning and hospice. Patients nearing end-of-life may develop symptoms such as dyspnea, secretions, delirium, pain, and seizures. Neurologists may be the primary clinicians managing these symptoms, particularly in the hospitalized patient, though they may also lend their expertise to non-neurologists about expected disease trajectories and symptoms in advanced neurologic disease. This article aims to help neurologists guide patients and caregivers through the end-of-life process by focusing on general knowledge that can be applied across diseases as well as specific considerations in severe stroke and traumatic brain injury, amyotrophic lateral sclerosis, Parkinson's disease, and dementia.

Piloting a Patient Tool to Aid Palliative Care Referrals during Advanced Lung Cancer Treatment.

CONTEXT: Patient misperceptions are a strong barrier to early palliative care discussions and referrals during advanced lung cancer treatment. OBJECTIVES: We developed and tested the acceptability of a web-based patient-facing palliative care education and screening tool intended for use in a planned multilevel intervention (i.e., patient, clinician, system-level targets). METHODS: We elicited feedback from advanced lung cancer patients (n = 6), oncology and palliative care clinicians (n = 4), and a clinic administrator (n = 1) on the perceived relevance of the intervention. We then tested the prototype of a patient-facing tool for patient acceptability and preliminary effects on patient palliative care knowledge and motivation. RESULTS: Partners agreed that the intervention-clinician palliative care education and an electronic health record-integrated patient tool-is relevant and their feedback informed development of the patient prototype. Advanced stage lung cancer patients (n = 20; age 60 ± 9.8; 40% male; 70% with a technical degree or less) reviewed and rated the prototype on a five-point scale for acceptability (4.48 ± 0.55), appropriateness (4.37 ± 0.62), and feasibility (4.43 ± 0.59). After using the prototype, 75% were interested in using palliative care and 80% were more motivated to talk to their oncologist about it. Of patients who had or were at risk of having misperceptions about palliative care (e.g., conflating it with hospice), 100% no longer held the misperceptions after using the prototype. CONCLUSION: The palliative care education and screening tool is acceptable to patients and may address misperceptions and motivate palliative care discussions during treatment.

Impact of Case Review Debriefings on Moral Distress of Extracorporeal Membrane Oxygenation Nurses.

BACKGROUND: Moral distress occurs when nurses know the ethically correct action to take but are restrained from taking it. Moral distress is prevalent in nurses who work in intense stress situations, as do extracorporeal membrane oxygenation nurses. LOCAL PROBLEM: Nurses who work in critical care settings have higher levels of moral distress than nurses who work in other practice areas. The purpose of this project was to evaluate the effectiveness of case review debriefings on moral distress of extracorporeal membrane oxygenation nurses. METHODS: Thirty-nine critical care registered nurses with specialty training in extracorporeal membrane oxygenation were invited to participate in this clinical improvement project. The intervention consisted of 2 case review debriefings. The Moral Distress Scale-Revised and the Moral Distress Thermometer were used to measure long-term and acute (short-term) moral distress. RESULTS: Of a potential range of 0 to 336, the mean Moral Distress Scale-Revised score was 134.0 before intervention and 131.8 after intervention. The frequency of experiencing moral distress did not change after intervention, but the level of moral distress increased after intervention. Moral Distress Thermometer scores decreased for 80% of participants and increased for 20%. Five items related to perceptions of prolonging death and suffering were the most frequent causes of moral distress. CONCLUSIONS: Developing strategies and providing opportunities to mitigate moral distress are crucial to a healthy future nursing workforce. Implications include the potential for improved patient care, decreased turnover rates and costs, and improved nurse satisfaction rates.

Palliative care use and utilization determinants among patients treated for advanced stage lung cancer care in the community and academic medical setting.

PURPOSE: Despite clinical guidelines, palliative care is underutilized during advanced stage lung cancer treatment. To inform interventions to increase its use, patient-level barriers and facilitators (i.e., determinants) need to be characterized, especially among patients living in rural areas or those receiving treatment outside academic medical centers. METHODS: Between 2020 and 2021, advanced stage lung cancer patients (n = 77; 62% rural; 58% receiving care in the community) completed a one-time survey assessing palliative care use and its determinants. Univariate and bivariate analyses described palliative care use and determinants and compared scores by patient demographic (e.g., rural vs. urban) and treatment setting (e.g., community vs. academic medical center) factors. RESULTS: Roughly half said they had never met with a palliative care doctor (49.4%) or nurse (58.4%) as part of cancer care. Only 18% said they knew what palliative care was and could explain it; 17% thought it was the same as hospice. After palliative care was distinguished from hospice, the most frequently cited reasons patients stated they would not seek palliative care were uncertainty about what it would offer (65%), concerns about insurance coverage (63%), difficulty attending multiple appointments (60%), and lack of discussion with an oncologist (59%). The most common reasons patients stated they would seek palliative care were a desire to control pain (62%), oncologist recommendation (58%), and coping support for family and friends (55%). CONCLUSION: Interventions should address knowledge and misconceptions, assess care needs, and facilitate communication between patients and oncologists about palliative care.

Emerging Subspecialties in Neurology: Cortical Careers in Neuropalliative Care.

Serious neurologic illnesses are associated with significant palliative care (PC) 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 PC, 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 (NPC) as a subspecialty. There are different ways to acquire PC skills, incorporate them into one's neurology practice, and develop a neuropalliative carer. We interviewed 3 leaders in the field of NPC, 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 NPC, and their thoughts on the future of the field.

Palliative Care for the Interstitial Lung Disease Patient a Must and Not Just a Need.

Patients with interstitial lung disease (ILD) have many unmet palliative care needs. The majority of patients with chronic ILD have poor access to a specialist in palliative medicine and that is due to several barriers. The mortality for the ILD patient is high and reaches up to 80% if admitted to the ICU with respiratory failure. Palliative care addresses symptoms in diseases where cure is unlikely or impossible. Palliative care consultation also ensures communication among patients, caregivers and providers regarding treatments, prognosis, and end of life planning. Methods: We performed a literature review on palliative care and ILD, accessing articles published since 2002. We found 71 articles related to the topic. We chose 37 that were most relevant and with no redundancy of information to include in this review. Objectives: Summarize the palliative care needs of patients with ILD, discuss the barriers to receiving palliative care, and summarize clinical practice for providing palliative care to this patient population.

"I Just Feel Like I Always Did": Inotropic Dependency at End of Life.

BACKGROUND: Patients not considered for mechanical circulatory support or heart transplant may be dependent on inotropic therapy at end of life. End-of-life conversations in advanced heart failure can be challenging for providers, but guidelines recommend frequent goals-of-care conversations when inotropes are used as a palliative treatment. The purpose of this study was to identify aspects of care pertinent for health-care professionals working with patients in end-stage heart failure who are receiving continuous inotropic support. METHODS: Qualitative analysis was used to examine 3 audio-recorded semistructured interviews with 1 patient, her family, and her cardiologist. The selected patient was an older adult, diagnosed with advanced heart failure, and dependent on continuous inotropic therapy with no other advanced treatment options available. RESULTS: The analysis revealed that (1) reliance on others, (2) contending with uncertainty, and (3) deciding when to discontinue inotropic support were identified as themes central to the patient's and provider's experience. CONCLUSION: This study offers insight into how to best support and communicate with patients having advanced heart failure who are dependent on continuous inotropic therapy at end of life.

Top Ten Tips Palliative Care Clinicians Should Know About Caring for Patients with Neurologic Illnesses.

Patients with neurologic illnesses are commonly encountered by palliative care (PC) clinicians though many clinicians feel uncomfortable caring for these patients. Understanding how to diagnose, treat, communicate with, and prognosticate for neurology patients will improve the confidence and competence of PC providers in the neurology setting. This article offers PC providers 10 useful tips that neurologists with PC training think all PC providers should know to improve care for patients with neurologic illness.

Associations between Patient Characteristics and a New, Early Do-Not-Attempt Resuscitation Order after Intracerebral Hemorrhage.

BACKGROUND: Decisions to limit care, including use of a do-not-resuscitate (DNR) order, are associated with increased risk of death after intracerebral hemorrhage (ICH). Given the value that patient surrogates place on the physician's perception of prognosis, understanding prognostic indicators that influence clinical judgment of outcomes is critical. OBJECTIVE: The purpose of this study was to understand the patient variables and comorbid illnesses associated with DNR orders placed on patients within 72 hours after ICH. DESIGN: Single-center, retrospective review of medical records of 198 consecutive patients with an admission diagnosis of primary supratentorial ICH between July 2007 and December 2010. SUBJECTS: Patients who did not experience a DNR order placement during their primary admission for ICH (non-DNR group) were compared to patients who received a new DNR order in the first 72 hours of admission (DNR group). MEASUREMENTS: Patient characteristics obtained include demographic data, past medical history, clinical data pertaining to the admission for the ICH, and radiographic images. Demographic, medical, and ICH injury data during the first three days of admission were collected. RESULTS: Multiple differences in patient and hospital factors were found between patients receiving a new, early DNR order and those who did not receive a DNR order after ICH. In regression modeling, Caucasian race, direct admission, and higher ICH score were associated with placement of a new DNR order early in the course of injury. CONCLUSIONS: Race, transfer procedures, and injury severity may be important factors associated with placement of new, early DNR orders in patients after ICH.

Palliative Care Planner: A Pilot Study to Evaluate Acceptability and Usability of an Electronic Health Records System-integrated, Needs-targeted App Platform.

RATIONALE: The quality and patient-centeredness of intensive care unit (ICU)-based palliative care delivery is highly variable. OBJECTIVE: To develop and pilot an app platform for clinicians and ICU patients and their family members that enhances the delivery of needs-targeted palliative care. METHODS: In the development phase of the study, we developed an electronic health record (EHR) system-integrated mobile web app system prototype, PCplanner (Palliative Care Planner). PCplanner screens the EHR for ICU patients meeting any of five prompts (triggers) for palliative care consultation, allows families to report their unmet palliative care needs, and alerts clinicians to these needs. The evaluation phase included a prospective before/after study conducted at a large academic medical center. Two control populations were enrolled in the before period to serve as context for the intervention. First, 25 ICU patients who received palliative care consults served as patient-level controls. Second, 49 family members of ICU patients who received mechanical ventilation for at least 48 hours served as family-level controls. Afterward, 14 patients, 18 family members, and 10 clinicians participated in the intervention evaluation period. Family member outcomes measured at baseline and 4 days later included acceptability (Client Satisfaction Questionnaire [CSQ]), usability (Systems Usability Scale [SUS]), and palliative care needs, assessed with the adapted needs of social nature, existential concerns, symptoms, and therapeutic interaction (NEST) scale; the Patient-Centeredness of Care Scale (PCCS); and the Perceived Stress Scale (PSS). Patient outcomes included frequency of goal concordant treatment, hospital length of stay, and discharge disposition. RESULTS: Family members reported high PCplanner acceptability (mean CSQ, 14.1 [SD, 1.4]) and usability (mean SUS, 21.1 [SD, 1.7]). PCplanner family member recipients experienced a 12.7-unit reduction in NEST score compared with a 3.4-unit increase among controls (P = 0.002), as well as improved mean scores on the PCCS (6.6 [SD, 5.8]) and the PSS (-0.8 [SD, 1.9]). The frequency of goal-concordant treatment increased over the course of the intervention (n = 14 [SD, 79%] vs. n = 18 [SD, 100%]). Compared with palliative care controls, intervention patients received palliative care consultation sooner (3.9 [SD, 2.7] vs. 6.9 [SD, 7.1] mean days), had a shorter mean hospital length of stay (20.5 [SD, 9.1] vs. 22.3 [SD, 16.0] patient number), and received hospice care more frequently (5 [36%] vs. 5 [20%]), although these differences were not statistically significant. CONCLUSIONS: PCplanner represents an acceptable, usable, and clinically promising systems-based approach to delivering EHR-triggered, needs-targeted ICU-based palliative care within a standard clinical workflow. A clinical trial in a larger population is needed to evaluate its efficacy.

Factors Considered by Clinicians when Prognosticating Intracerebral Hemorrhage Outcomes.

BACKGROUND: The early subjective clinical judgment of clinicians outperforms formal prognostic scales for accurate determination of outcome after intracerebral hemorrhage (ICH), with the judgment of physicians and nurses having equivalent accuracy. This study assessed specific decisional factors that physicians and nurses incorporate into early predictions of functional outcome. METHODS: This prospective observational study enrolled 121 ICH patients at five US centers. Within 24 h of each patient's admission, one physician and one nurse on the clinical team were each surveyed to predict the patient's modified Rankin Scale (mRS) at 3 months and to list up to 10 subjective factors used in prognostication. Factors were coded and compared between (1) physician and nurse and (2) accurate and inaccurate surveys, with accuracy defined as an exact prediction of mRS. RESULTS: Aside from factors that are components of the ICH or FUNC scores, surveys reported pre-existing comorbidities (40.0%), other clinical or radiographic factors not in clinical scales (43.0%), and non-clinical/radiographic factors (21.9%) as important. Compared to physicians, nurses more frequently listed neurologic examination components (Glasgow Coma Scale motor, 27.3 vs. 5.8%, p < 0.0001; GCS verbal, 12.4 vs. 0.0%, p < 0.0001) and non-clinical/radiographic factors (31.4 vs. 12.4%, p = 0.0005). Physicians more frequently listed neuroimaging factors (ICH location, 33.9 vs. 7.4%, p < 0.0001; intraventricular hemorrhage, 13.2 vs. 2.5%, p = 0.003). There was no difference in listed factors between accurate versus inaccurate surveys. CONCLUSIONS: Clinicians frequently utilize factors outside of the components of clinical scales for prognostication, with physician and nurses focusing on different factors despite having similar accuracy.

Improving ICU-Based Palliative Care Delivery: A Multicenter, Multidisciplinary Survey of Critical Care Clinician Attitudes and Beliefs.

OBJECTIVE: Addressing the quality gap in ICU-based palliative care is limited by uncertainty about acceptable models of collaborative specialist and generalist care. Therefore, we characterized the attitudes of physicians and nurses about palliative care delivery in an ICU environment. DESIGN: Mixed-methods study. SETTING: Medical and surgical ICUs at three large academic hospitals. PARTICIPANTS: Three hundred three nurses, intensivists, and advanced practice providers. MEASUREMENTS AND MAIN RESULTS: Clinicians completed written surveys that assessed attitudes about specialist palliative care presence and integration into the ICU setting, as well as acceptability of 23 published palliative care prompts (triggers) for specialist consultation. Most (n = 225; 75%) reported that palliative care consultation was underutilized. Prompting consideration of eligibility for specialist consultation by electronic health record searches for triggers was most preferred (n = 123; 41%); only 17 of them (6%) felt current processes were adequate. The most acceptable specialist triggers were metastatic malignancy, unrealistic goals of care, end of life decision making, and persistent organ failure. Advanced age, length of stay, and duration of life support were the least acceptable. Screening led by either specialists or ICU teams was equally preferred. Central themes derived from qualitative analysis of 65 written responses to open-ended items included concerns about the roles of physicians and nurses, implementation, and impact on ICU team-family relationships. CONCLUSIONS: Integration of palliative care specialists in the ICU is broadly acceptable and desired. However, the most commonly used current triggers for prompting specialist consultation were among the least well accepted, while more favorable triggers are difficult to abstract from electronic health record systems. There is also disagreement about the role of ICU nurses in palliative care delivery. These findings provide important guidance to the development of collaborative care models for the ICU setting.

Clinician judgment vs formal scales for predicting intracerebral hemorrhage outcomes.

OBJECTIVE: To compare the performance of formal prognostic instruments vs subjective clinical judgment with regards to predicting functional outcome in patients with spontaneous intracerebral hemorrhage (ICH). METHODS: This prospective observational study enrolled 121 ICH patients hospitalized at 5 US tertiary care centers. Within 24 hours of each patient's admission to the hospital, one physician and one nurse on each patient's clinical team were each asked to predict the patient's modified Rankin Scale (mRS) score at 3 months and to indicate whether he or she would recommend comfort measures. The admission ICH score and FUNC score, 2 prognostic scales selected for their common use in neurologic practice, were calculated for each patient. Spearman rank correlation coefficients (r) with respect to patients' actual 3-month mRS for the physician and nursing predictions were compared against the same correlation coefficients for the ICH score and FUNC score. RESULTS: The absolute value of the correlation coefficient for physician predictions with respect to actual outcome (0.75) was higher than that of either the ICH score (0.62, p = 0.057) or the FUNC score (0.56, p = 0.01). The nursing predictions of outcome (r = 0.72) also trended towards an accuracy advantage over the ICH score (p = 0.09) and FUNC score (p = 0.03). In an analysis that excluded patients for whom comfort care was recommended, the 65 available attending physician predictions retained greater accuracy (r = 0.73) than either the ICH score (r = 0.50, p = 0.02) or the FUNC score (r = 0.42, p = 0.004). CONCLUSIONS: Early subjective clinical judgment of physicians correlates more closely with 3-month outcome after ICH than prognostic scales.

The Code of Professional Conduct for the Neurocritical Care Society.

Part of the responsibility of a professional society is to establish the expectations for appropriate behavior for its members. Some codes are so essential to a society that the code itself becomes the central document defining the organization and its tenets, as we see with the Hippocratic Oath. In that tradition, we have revised the code of professional conduct for the Neurocritical Care Society into its current version, which emphasizes guidelines for personal behavior, relationships with fellow members, relationships with patients, and our interactions with society as a whole. This will be a living document and updated as the needs of our society change in time.Available online: http://www.neurocriticalcare.org/about-us/bylaws-procedures-and-code-professional-conduct (1) Code of professional conduct (this document) (2) Leadership code of conduct (3) Disciplinary policy.

A first-year community-based service learning elective: design, implementation, and reflection.

BACKGROUND: Medical schools have increasingly begun to incorporate service learning practices into their curricula. DESCRIPTION: As part of a community-based service learning elective, 7 first-year medical students designed and implemented a health behavior education program for residents of a women's substance abuse recovery facility. The resulting program, Start Small, Feel Better, emphasized setting and accomplishing small goals to promote healthy lifestyle modifications. EVALUATION: We present personal reflections from the students, impressions of the participants, and qualitative data on the short-term effects of this intervention. CONCLUSIONS: Start Small, Feel Better represents a model of how a service learning project could be put into practice and positively impact both medical students and the broader community.

Neurite elongation on chondroitin sulfate proteoglycans is characterized by axonal fasciculation.

In the developing or regenerating nervous system, migrating growth cones are exposed to regulatory molecules that positively and/or negatively affect guidance. Chondroitin sulfate proteoglycans (CSPGs) are complex macromolecules that are typically negative regulators of growth cone migration in vivo and in vitro. However, in certain cases, neurites sometimes traverse regions expressing relatively high levels of CSPGs, seemingly a paradox. In our continuing efforts to characterize CSPG inhibition in vitro, we manipulated the ratio of CSPGs to growth-promoting laminin-1 to produce a substratum that supports outgrowth of a subpopulation of dorsal root ganglia (DRG) neurites, while still being inhibitory to other populations of DRG neurons [Exp. Neurol. 109 (1990), 111; J. Neurobiol. 51 (2002), 285]. This model comprises a useful tool in the analysis of mechanisms of growth cone guidance and is particularly useful to analyze how CSPGs can be inhibitory under some conditions, and growth permissive under others. We grew embryonic (E9-10) chicken DRG neurons on nervous system-isolated, substratum-bound CSPGs at a concentration that supports an intermittent pattern of outgrowth, alternating with regions adsorbed with growth-promoting laminin-1 alone, and analyzed outgrowth behaviors qualitatively and quantitatively. A novel finding of the study was that DRG neurites that elongated onto CSPGs were predominantly fasciculated, but immediately returned to a defasciculated state upon contact with laminin-1. Further, cursory inspection suggests that outgrowth onto CSPGs may be initially accomplished by pioneer axons, along which subsequent axons migrate. The outgrowth patterns characterized in vitro may accurately reflect outgrowth in vivo in locations where inhibitory CSPGs and growth-promoting molecules are coexpressed, e.g., in the developing retina where fasciculated outgrowth may be instrumental in the guidance of retinal ganglion cells from the periphery to the optic fissure.