National- and State-Level Trends in Medicare Hospice Beneficiaries for Stroke During 2013 to 2019 in the United States.

BACKGROUND: Stroke is the fifth leading cause of death in the United States, one of the leading contributors to Medicare cost, including through Medicare hospice benefits, and the rate of stroke mortality has been increasing since 2013. We hypothesized that hospice utilization among Medicare beneficiaries with stroke has increased over time and that the increase is associated with trends in stroke death rate. METHODS: Using Medicare Part A claims data and Centers for Disease Control mortality data at a national and state level from 2013 to 2019, we report the proportion and count of Medicare hospice beneficiaries with stroke as well as the stroke death rate (per 100 000) in Medicare-eligible individuals aged ≥65 years. RESULTS: From 2013 to 2019, the number of Medicare hospice beneficiaries with stroke as their primary diagnosis increased 104.1% from 78 812 to 160 884. The number of stroke deaths in the United States in individuals aged ≥65 years also increased from 109 602 in 2013 to 129 193 in 2019 (17.9% increase). In 2013, stroke was the sixth most common primary diagnosis for Medicare hospice, while in 2019 it was the third most common, surpassed only by cancer and dementia. The correlation between the change from 2013 to 2019 in state-level Medicare hospice for stroke and stroke death rate for Medicare-eligible adults was significant (Spearman ρ=0.5; P<0.001). In a mixed-effects model, the variance in the state-level proportion of Medicare hospice for stroke explained by the state-level stroke death rate was 48.2%. CONCLUSIONS: From 2013 to 2019, the number of Medicare hospice beneficiaries with a primary diagnosis of stroke more than doubled and stroke jumped from the sixth most common indication for hospice to the third most common. While increases in stroke mortality in the Medicare-eligible population accounts for some of the increase of Medicare hospice beneficiaries, over half the variance remains unexplained and requires additional research.

Palliative care to support the needs of adults with neurological disease.

Neurological diseases cause physical, psychosocial, and spiritual or existential suffering from the time of their diagnosis. Palliative care focuses on improving quality of life for people with serious illness and their families by addressing this multidimensional suffering. Evidence from clinical trials supports the ability of palliative care to improve patient and caregiver outcomes by the use of outpatient or home-based palliative care interventions for people with motor neuron disease, multiple sclerosis, or Parkinson's disease; inpatient palliative care consultations for people with advanced dementia; telephone-based case management for people with dementia in the community; and nurse-led discussions with decision aids for people with advanced dementia in long-term care. Unfortunately, most people with neurological diseases do not get the support that they need for their palliative care under current standards of healthcare. Improving this situation requires the deployment of routine screening to identify individual palliative care needs, the integration of palliative care approaches into routine neurological care, and collaboration between neurologists and palliative care specialists. Research, education, and advocacy are also needed to raise standards of care.

Identification of Palliative Care Needs and Mental Health Outcomes Among Family Members of Patients With Severe Acute Brain Injury.

Importance: Family members of patients with severe acute brain injury (SABI) are at risk for poor psychological outcomes. Objective: To explore the utility of the early use of a palliative care needs checklist in identifying care needs of patients with SABI and family members who are at risk of poor psychological outcomes. Design, Setting, and Participants: This prospective cohort study included patients with SABI in an intensive care unit (ICU) for 2 days or more and a Glasgow Coma Scale score of 12 or lower and their family members. This single-center study was conducted at an academic hospital in Seattle, Washington, from January 2018 to June 2021. Data were analyzed from July 2021 to July 2022. Exposure: At enrollment, a 4-item palliative care needs checklist was completed separately by clinicians and family members. Main Outcomes and Measures: A single family member for each enrolled patient completed questionnaires assessing symptoms of depression and anxiety, perception of goal-concordant care, and satisfaction in the ICU. Six months later, family members assessed their psychological symptoms, decisional regret, patient functional outcome, and patient quality of life (QOL). Results: A total of 209 patient-family member pairs (family member mean [SD] age, 51 [16] years; 133 women [64%]; 18 Asian [9%], 21 Black [10%], 20 [10%] Hispanic, and 153 White [73%] participants) were included. Patients had experienced stroke (126 [60%]), traumatic brain injury (62 [30%]), and hypoxic-ischemic encephalopathy (21 [10%]). At least 1 need was identified for 185 patients or their families (88%) by family members and 110 (53%) by clinicians (κ = -0.007; 52% agreement). Symptoms of at least moderate anxiety or depression were present in 50% of family members at enrollment (87 with anxiety and 94 with depression) and 20% at follow-up (33 with anxiety and 29 with depression). After adjustment for patient age, diagnosis, and disease severity and family race and ethnicity, clinician identification of any need was associated with greater goal discordance (203 participants; relative risk = 1.7 [95% CI, 1.2 to 2.5]) and family decisional regret (144 participants; difference in means, 17 [95% CI, 5 to 29] points). Family member identification of any need was associated with greater symptoms of depression at follow-up (150 participants; difference in means of Patient Health Questionnaire-2, 0.8 [95% CI, 0.2 to 1.3] points) and worse perceived patient QOL (78 participants; difference in means, -17.1 [95% CI, -33.6 to -0.5] points). Conclusions and Relevance: In this prospective cohort study of patients with SABI and their families, palliative care needs were common, although agreement on needs was poor between clinicians and family members. A palliative care needs checklist completed by clinicians and family members may improve communication and promote timely, targeted management of needs.

Palliative care after stroke survival.

Stroke is a leading cause of both death and disability worldwide. While most research has focused on the first hours to days after acute stroke, much less is known about the experience of patients and their families living after a stroke. Stroke survivors have a high burden of physical and psychological symptoms such as pain, fatigue, and depression that are often not addressed in the postacute setting. Similarly, goals-of-care conversations that may have started during the acute hospitalization are often not followed up later. This chapter outlines the prevalence and management of common poststroke symptoms, approaches to postacute goals-of-care conversations, family needs after stroke, and provides an overview of stroke-specific hospice and end-of-life care aspects. We emphasize the need for research in each of these areas.

Palliative and End-of-Life Care After Severe Stroke.

BACKGROUND AND OBJECTIVES: The distinct illness trajectory after acute ischemic stroke demands a better understanding of the utilization of palliative care consultations (PCC) for this patient cohort. This study sought to determine the prevalence, predictors, and outcomes associated with PCC for patients hospitalized with severe ischemic stroke. METHODS: This multicenter cohort study was conducted at four hospitals (2 comprehensive and 2 primary stroke centers) between January, 2016 and December, 2019. We included all patients with a discharge diagnosis of ischemic stroke and an initial National Institutes of Health Stroke Scale (NIHSS) of 10 or greater. We compared patient sociodemographic, clinical and care characteristics as well as hospital outcomes between patients who did and did not receive PCC. RESULTS: The study included 1297 patients hospitalized with severe ischemic stroke. PCC occurred for 20% of all patients and this proportion varied across institutions from 11.9% to 43%. Less than half (43%) of patients who died in the hospital. In multivaraible analysis, PCC was less likely in female patients (OR .76, 95% CI .59, .99, P=0.04) but more likely in patients with higher NIHSS (OR1.95, 95% CI 1,13, 3.37, P=0.02). Patients with PCC had higher rates of moving to a plan focused on comfort measures (CMO) (P<0.01) and removal of artificial nutrition as part of a move to CMO (P<0.01). In a sub analysis of patients who died in the hospital and received PCC, patients who died on or before hospital day 3 were less likely to receive PCC than patients who died on or after hospital day 4 (24% v. 51%) (P=<0.01). CONCLUSIONS: Most patients with severe stroke do not receive PCC, even among those who experience in-hospital death. The results of this study indicate there are missed opportunities for PCC to help reduce suffering after severe stroke.

Prognostication, Ethical Issues, and Palliative Care in Disorders of Consciousness.

Research advances in recent years have shown that some individuals with vegetative state or minimally conscious state can emerge to higher states of consciousness even years after injury. A minority of behaviorally unresponsive patients with vegetative state have also been shown to follow commands, or even communicate, using neuroimaging or electrophysiological techniques. These advances raise ethical questions that have important implications for clinical care. In this article, the authors argue that adopting a neuropalliative care approach can help clinicians provide ethical, compassionate care to these patients and their caregivers.

Taking a Chance to Recover: Families Look Back on the Decision to Pursue Tracheostomy After Severe Acute Brain Injury.

BACKGROUND: Tracheostomy represents one important and value-laden treatment decision after severe acute brain injury (SABI). Whether to pursue this life-sustaining treatment typically hinges on intense conversations between family and clinicians. The aim of this study was, among a cohort of patient who had undergone tracheostomy after SABI, to explore the long-term reflections of patients and their families as they look back on this decision. METHODS: For this qualitative study, we reviewed the electronic medical records of patients with SABI who underwent tracheostomy. We included all patients who were admitted to our 30-bed neuro-intensive care unit with SABI and underwent tracheostomy between November 2017 and October 2019. Using purposive sampling, we invited survivors and family members to participate in telephone interviews greater than 3 months after SABI until thematic saturation was reached. Interviews were audiotaped, transcribed, and analyzed by using thematic analysis. RESULTS: Overall, 38 patients with SABI in the neuro-intensive care unit underwent tracheostomy. The mean age of patients was 49 (range 18-81), with 19 of 38 patients diagnosed with traumatic brain injury and 19 of 38 with stroke. We interviewed 20 family members of 18 of 38 patients at a mean of 16 (SD 9) months after hospitalization. The mean patient age among those with an interview was 50 (range 18-76); the mean modified Rankin Scale score (mRS) was 4.7 (SD 0.8) at hospital discharge. At the time of the interview, ten patients lived at home and two in a skilled nursing facility and had a mean mRS of 2.6 (SD 0.9), and six had died. As families reflected on the decision to proceed with a tracheostomy, two themes emerged. First, families did not remember tracheostomy as a choice because the uncertain chance of recovery rendered the certain alternative of death unacceptable or because they valued survival above all and therefore could not perceive an alternative to life-sustaining treatment. Second, families identified a fundamental need to receive supportive, consistent communication centering around compassion, clarity, and hope. When this need was met, families were able to reflect on the tracheostomy decision with peace, regardless of their loved one's eventual outcome. CONCLUSIONS: After SABI, prognostic uncertainty almost transcends the concept of choice. Families who proceeded with a tracheostomy saw it as the only option at the time. High-quality communication may mitigate the stress surrounding this high-stakes decision.

Palliative Care and Shared Decision Making in the Neurocritical Care Unit.

PURPOSE OF REVIEW: This article reviews the evidence on integrating palliative care into the care of patients with various types of serious neurologic illness, emphasizes the importance of palliative care in the neurocritical care unit, and suggests tools for clinicians to improve their communication skills and decision making. RECENT FINDINGS: Palliative care is a holistic approach to medical care that aims to relieve physical, psychological, social, and spiritual suffering. It is both a medical specialty as young as neurocritical care itself and an approach to patient care by all clinicians who manage patients with serious illness. Patients presenting to the neurocritical care unit and their families have unique palliative care needs that challenge communication and shared decision making. SUMMARY: Palliative care, effective communication, and shared decision making require a set of core skills that all neurology clinicians should master.

Neuropalliative Care in the Inpatient Setting.

The palliative care needs of inpatients with neurologic illness are varied, depending on diagnosis, acuity of illness, available treatment options, prognosis, and goals of care. Inpatient neurologists ought to be proficient at providing primary palliative care and effective at determining when palliative care consultants are needed. In the acute setting, palliative care should be integrated with lifesaving treatments using a framework of determining goals of care, thoughtfully prognosticating, and engaging in shared decision-making. This framework remains important when aggressive treatments are not desired or not available, or when patients are admitted to the hospital for conditions related to advanced stages of chronic neurologic disease. Because prognostic uncertainty characterizes much of neurology, inpatient neurologists must develop communication strategies that account for uncertainty while supporting shared decision-making and allowing patients and families to preserve hope. In this article, we illustrate the approach to palliative care in inpatient neurology.

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.

Palliative Care in the Neuro-ICU: Perceptions, Practice Patterns, and Preferences of Neurointensivists.

INTRODUCTION: The proportion of hospitals with specialist palliative care services in the USA has increased substantially over the past decade. Severe acute brain injury presents with unique challenges, especially regarding quality of life. The growth and increased recognition of neurocritical care as a subspecialty has not been paralleled by studies regarding how best to integrate palliative care for this unique patient population. Thus, we surveyed members of the Neurocritical Care Society (NCS) to explore current practice patterns, perceptions, and preferences regarding integration of palliative care in the neurological intensive care unit (Neuro-ICU). METHODS: We created a 19-item survey using SurveyMonkey to assess practice patterns, perceptions, and preferences of neurointensivists regarding integration of palliative care in the Neuro-ICU. The survey, approved by the NCS research committee, was distributed to all active members of the NCS. RESULTS: A total of 424 NCS members representing 19% of the 2200 list serve members completed the survey. The majority (58%) of respondents were attending physicians, who worked primarily in a dedicated Neuro-ICU (67%), at university affiliated academic medical centers (65%). Palliative care consultations are utilized infrequently (< 11%) by the majority of the respondents (59%). The most common indication for a palliative consultation was to discuss goals of care and make treatment decisions (73%). A large majority (77%) either agreed or strongly agreed that palliative care services were utilized in the management of difficult cases apart from discussions regarding withdrawal of life sustaining therapy. Palliative care needs of Neuro-ICU patients were considered different from patients in other ICUs by the majority of respondents (66%). CONCLUSION: Our study provides insights into the current perceptions, practice patterns, and preferences of neurointensivists as it relates to palliative care consultation in the Neuro-ICU.

Planning After Stroke Survival: Advance Care Planning in the Stroke Clinic.

Background Stroke survivors have high rates of mortality and recurrent stroke. Stroke patients are often unable to participate in decision making, highlighting the need for advance care planning ( ACP ) in poststroke care. We sought to better understand experiences and perceptions around stroke risk and ACP in our stroke clinic. Methods and Results Clinic patients completed the Planning After Stroke Survival survey assessing (1) advance directive ( AD ) documentation and ACP conversations, (2) factors associated with ADs and ACP , (3) perceptions of stroke risk, and (4) ACP needs. We used a physician survey and the electronic medical record to assess clinical and demographic information. We collected 219 surveys (78% response rate). Forty-five percent reported having completed ADs , although the correlation between patient report and EMS documentation of ADs was low. Most patients (73%) had discussed ACP , and 58% desired additional conversation. Predictors of completing ADs included age (≥65 years; odds ratio, 4.8; 95% CI, 2.3-10.1), white race (odds ratio, 3.1; 95% CI , 1.2-7.8), milder poststroke disability (modified Rankin Scale score ≤1; odds ratio, 2.9; 95% CI , 1.3-6.4), having previously discussed ACP with a physician (odds ratio, 4.8; 95% CI , 2.0-11.7), and discussing risk of stroke recurrence (odds ratio, 2.2; 95% CI , 1.1-4.5). Conclusions Stroke survivors had low AD completion rates and desired more conversations about stroke risk and ACP . Completed ADs were inconsistently documented in the electronic medical record. These findings provide guidance to improve ACP in our stroke clinic and may provide a model for others interested in enhancing ACP and ultimately goal-concordant care.

Inpatients with neurologic disease referred for palliative care consultation.

OBJECTIVES: To compare characteristics and needs of inpatients with neurologic disease to those with cancer referred for palliative care (PC) consultation. METHODS: This prospective cohort study used data collected by the Palliative Care Quality Network from January 2013 until December 2016. We compared demographics, reasons for consultation, discharge disposition, Palliative Performance Scale (PPS) score, and outcomes of care among patients with a primary diagnosis of neurologic disease vs cancer. RESULTS: The most common reason for PC consultation in all patients was assistance with goals of care and advanced care planning. PC consultation was less often requested for pain and symptom management in patients with neurologic disease compared to patients with cancer (13.7% vs 43%, odds ratio 0.3) and more often for assistance with transition to comfort measures only and withdrawal of life-sustaining treatment (19.1% vs 7.1%, odds ratio 1.3). Patients with cancer had higher PPS scores (42.1% vs 23.4%) and were more likely to be discharged home from the hospital, while patients with neurologic disease were more likely to die in hospital. CONCLUSIONS: Patients with neurologic disease as a reason for PC consultation are more in need of end-of-life care planning and more likely to die in the hospital than those with cancer, suggesting that targeted approaches may best address the needs of each patient population. Our results can direct further research and education in neuropalliative care.

Palliative Care: Perceptions, Experiences, and Attitudes in a Peruvian Neurologic Hospital.

BACKGROUND: The development of palliative care in Peru remains limited, particularly for nononcological services, such as neurology. The goal of this study was to explore attitudes toward and knowledge about palliative and end-of-life care among patients, families, nurses, and doctors in a specialized neurological institute in Lima, Peru. MATERIALS AND METHODS: We used a mixed methods approach consisting of 78 surveys and 21 qualitative, semistructured interviews that were recorded, transcribed, and analyzed using thematic analysis. RESULTS: Surveys identified a substantial need for palliative care in the neurological institute (63% of doctors and 77% of nurses reported palliative care needs in >30% of their patients), and for training (82% of doctors and 69% of nurses reported inadequate palliative care education). The key themes emerging from qualitative interviews concerned transparency of communication about prognosis and end-of-life choices in neurological disease. Familiarity with advance directives was limited among both clinicians and families, and participants were divided about whether or not patients should be informed of serious diagnoses and prognoses, and who should inform them. Barriers to transparency in patient-physician communication included (1) expectation of cure; (2) physician's lack of training in communication and end-of-life care; (3) a paternalistic culture; and (4) the nature of neurological diseases. CONCLUSIONS: Our study highlights opportunities to enhance palliative care and communication education for neurology providers and the public in Peru, a country that currently has no palliative care training program and no legal basis for advance directives.

Neuropalliative care: Priorities to move the field forward.

Neuropalliative care is an emerging subspecialty in neurology and palliative care. On April 26, 2017, we convened a Neuropalliative Care Summit with national and international experts in the field to develop a clinical, educational, and research agenda to move the field forward. Clinical priorities included the need to develop and implement effective models to integrate palliative care into neurology and to develop and implement informative quality measures to evaluate and compare palliative approaches. Educational priorities included the need to improve the messaging of palliative care and to create standards for palliative care education for neurologists and neurology education for palliative specialists. Research priorities included the need to improve the evidence base across the entire research spectrum from early-stage interventional research to implementation science. Highest priority areas include focusing on outcomes important to patients and families, developing serious conversation triggers, and developing novel approaches to patient and family engagement, including improvements to decision quality. As we continue to make remarkable advances in the prevention, diagnosis, and treatment of neurologic illness, neurologists will face an increasing need to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body. This article outlines opportunities to improve the quality of care for all patients with neurologic illness and their families through a broad range of clinical, educational, and investigative efforts that include complex symptom management, communication skills, and models of care.

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.