Claire J. Creutzfeldt

Palliative and End-of-Life Care in Stroke: A Statement for Healthcare Professionals From the American Heart Association/American Stroke Association

Background and Purpose— The purpose of this statement is to delineate basic expectations regarding primary palliative care competencies and skills to be considered, learned, and practiced by providers and healthcare services across hospitals and community settings when caring for patients and families with stroke. Methods— Members of the writing group were appointed by the American Heart Association Stroke Council’s Scientific Statement Oversight Committee and the American Heart Association’s Manuscript Oversight Committee. Members were chosen to reflect the diversity and expertise of professional roles in delivering optimal palliative care. Writing group members were assigned topics relevant to their areas of expertise, reviewed the appropriate literature, and drafted manuscript content and recommendations in accordance with the American Heart Association’s framework for defining classes and level of evidence and recommendations. Results— The palliative care needs of patients with serious or life-threatening stroke and their families are enormous: complex decision making, aligning treatment with goals, and symptom control. Primary palliative care should be available to all patients with serious or life-threatening stroke and their families throughout the entire course of illness. To optimally deliver primary palliative care, stroke systems of care and provider teams should (1) promote and practice patient- and family-centered care; (2) effectively estimate prognosis; (3) develop appropriate goals of care; (4) be familiar with the evidence for common stroke decisions with end-of-life implications; (5) assess and effectively manage emerging stroke symptoms; (6) possess experience with palliative treatments at the end of life; (7) assist with care coordination, including referral to a palliative care specialist or hospice if necessary; (8) provide the patient and family the opportunity for personal growth and make bereavement resources available if death is anticipated; and (9) actively participate in continuous quality improvement and research. Conclusions— Addressing the palliative care needs of patients and families throughout the course of illness can complement existing practices and improve the quality of life of stroke patients, their families, and their care providers. There is an urgent need for further research in this area.

Prior Antiplatelet Therapy, Platelet Infusion Therapy, and Outcome after Intracerebral Hemorrhage

BACKGROUND Recent studies examining the effect of prior antiplatelet therapy (APT) on outcome in patients with spontaneous intracerebral hemorrhage (ICH) have shown conflicting results. The effect of platelet infusion therapy (PIT) on outcome in patients with ICH taking APT is unknown. METHODS We reviewed records of patients with ICH admitted to a single hospital, excluding those with international normalized ratio greater than or equal to 1.5. Baseline characteristics were compared by APT status in all patients and by PIT status in the subgroup of patients on APT. We used multivariate analyses to generate propensity and prognostic scores for exposures (APT and PIT) and outcomes (favorable outcome and hospital death), respectively. We examined the associations between exposures and outcomes and adjusted these for propensity and/or prognostic scores. We then validated our findings with a sensitivity analysis. RESULTS Of 368 patients identified, 121 (31.3%) were taking APT, mostly aspirin. Patients on APT were older and more likely to have vascular comorbidities than those not. The APT group also had a higher initial Glasgow Coma Scale score at presentation. In analyses adjusted for both propensity and prognostic scores, APT was associated with a higher likelihood of hospital death (odds ratio [OR] 2.4; 95% confidence interval [CI] 1.1-5.6); PIT did not prevent hospital death (OR 1.2; 95% CI 0.3-5.5) or increase favorable outcome (OR 1.4; 95% CI 0.4-5.4). CONCLUSIONS In patients with ICH, APT is associated with an increased risk of hospital death. In the subgroup of patients on APT, PIT did not prevent death or improve outcome.

Do-Not-Attempt-Resuscitation Orders and Prognostic Models for Intraparenchymal Hemorrhage

Objectives:Statistical models predicting outcome after intraparenchymal hemorrhage include patients irrespective of do-not-attempt-resuscitation orders. We built a model to explore how the inclusion of patients with do-not-attempt-resuscitation orders affects intraparenchymal hemorrhage prognostic models. Design:Retrospective, observational cohort study from May 2001 until September 2003. Setting:University-affiliated tertiary referral hospital in Seattle, WA. Patients:Four hundred twenty-four consecutive patients with spontaneous intraparenchymal hemorrhage. Measurements and Main Results:We retrospectively abstracted information from medical records of intraparenchymal hemorrhage patients admitted to a single hospital. Using multivariate logistic regression of presenting clinical characteristics, but not do-not-attempt-resuscitation status, we generated a prognostic score for favorable outcome (defined as moderate disability or better at discharge). We compared observed probability of favorable outcome with that predicted, stratified by do-not-attempt-resuscitation status. We then generated a modified prognostic score using only non-do-not-attempt-resuscitation patients. Records of 424 patients were reviewed: 44% had favorable outcome, 43% had a do-not-attempt-resuscitation order, and 38% died in hospital. The observed and predicted probability of favorable outcome agreed well with all patients taken together. The observed probability of favorable outcome was significantly higher than predicted in non-do-not-attempt-resuscitation patients and significantly lower in do-not-attempt-resuscitation patients. Results were similar when applying a previously published and validated prognostic score. Our modified prognostic score was no longer pessimistic in non-do-not-attempt-resuscitation patients but remained overly optimistic in do-not-attempt-resuscitation patients. Conclusions:Although our prognostic model was well-calibrated when assessing all intraparenchymal hemorrhage patients, predictions were significantly pessimistic in patients without and optimistic in those with do-not-attempt-resuscitation orders. Such pessimism may drive decisions not to attempt resuscitation in patients in whom a favorable outcome may have been possible, thereby creating a self-fulfilling prophecy. To be most useful in clinical decision making, intraparenchymal hemorrhage prognostic models should be calibrated to large intraparenchymal hemorrhage cohorts in whom do-not-attempt-resuscitation orders were not used.

Symptomatic and Palliative Care for Stroke Survivors

Stroke is the leading cause of disability and one of the most common causes of death worldwide. Outside the setting of acute management, secondary prevention and stroke rehabilitation, little has been written to address the ongoing symptomatic and palliative needs of these patients and their families. In this literature review, we look beyond secondary prevention with the aim of providing evidence-informed management guidelines for the myriad and often under-recognized symptomatic and palliative care needs of stroke survivors. Some of the most common and disabling post-stroke symptoms that are reviewed here include central post-stroke pain, hemiplegic shoulder pain, painful spasticity, fatigue, incontinence, post-stroke seizures, sexual dysfunction, sleep-disordered breathing, depression and emotionalism. We review the role of caregivers and explore ways to support them and, lastly, remind the reader to be perceptive to the patient’s spiritual needs. The literature is most robust, including controlled trials, for central post-stroke pain and depression. Synthesis and discussion outside these areas are frequently limited to smaller studies, case reports and expert opinion. While some data exists to guide informed decision-making, there is an urgent need to document best practice and identify appropriate clinical standards for the full spectrum of symptoms experienced by stroke survivors. We present the current and established data to aid health care providers in symptomatic and palliative management of stroke survivors.

Palliative Care Needs in the Neuro-ICU

Objectives:Patients admitted to the neurological or neurosurgical ICU are likely to have palliative care needs. The goals of this project are to encourage the ICU team to identify palliative care needs for patients and their families and potential ways to meet those needs. Design:Quality improvement project using a parallel-group prospective cohort design. Setting:Single neuro-ICU at a large, academic medical center. Patients:All patients admitted to the neuro-ICU from September 1, 2013, to November 30, 2013. Interventions:We developed a palliative care needs screening tool consisting of four questions: 1) Does the patient have distressing physical or psychological symptoms? 2) Are there specific support needs for patient or family? 3) Are treatment options matched with patient-centered goals? 4) Are there disagreements among teams and family? We implemented this daily screening tool on morning rounds for one of two neurocritical care services that alternate admitting days to a single neuro-ICU. We examined prevalence and nature of palliative care needs and actions to address those needs, comparing the services with and without screening. Measurements and Main Results:Over the 3-month period, 130 patients were admitted to the service with screening and 132 patients to the service without screening. The two groups did not differ with regard to age, gender, Glasgow Coma Scale, or diagnosis. Palliative care needs were identified in 62% of screened patients (80/130). Needs were mainly social support (53%) and establishing goals of care (28%). Screening was associated with more documented family conferences (p = 0.019) and a trend toward more palliative care consultations (p = 0.056). Conclusions:We developed a brief palliative care needs screening tool that identified palliative care needs for 62% neuro-ICU patients. This tool was associated with actions to meet these needs, potentially improving care for patients and their families.

Predicting decline and survival in severe acute brain injury: the fourth trajectory

Illness trajectories depicting how function declines to death with certain diseases, such as cancer, can help with palliative care. Creutzfeldt and colleagues propose a fourth trajectory is needed for patients with severe acute brain injury to improve decision making and standards of care

Diagnosis of Neurocysticercosis by Detection of Taenia solium DNA Using a Global DNA Screening Platform

Neurocysticercosis is caused by Taenia solium infection of the brain. Diagnosis is most often made by visualization of the parasitic scolex by magnetic resonance imaging of the brain or by characteristic neuroimaging findings with serologic test results positive for T. solium. A patient who presents with a solitary brain lesion usually poses a diagnostic dilemma, because the differential diagnosis often includes neurocysticercosis and other infections or neoplasm. Although the sensitivity of serologic testing for T. solium approaches 100% in patients with multiple intraparenchymal cysts, the sensitivity of testing for patients with solitary cysts is <50%, which makes serologic testing a less useful diagnostic tool for patients with solitary central nervous system (CNS) lesions. We describe 2 patients with solitary CNS lesions who received a neurocysticercosis diagnosis after identification of T. solium DNA in brain biopsy tissue with use of a global DNA screening platform. Global screening is a promising tool for the diagnosis of CNS infection, especially when traditional diagnostic tools are insensitive.

Palliative Care: A Core Competency for Stroke Neurologists

The past 2 decades have seen remarkable advances in our abilities to treat and prevent stroke. Better vascular risk factor control has led to a decrease in stroke incidence by 50% since the early 90s.1 Improvements in acute stroke care, especially at specialized centers, have led to a decline in overall stroke mortality. Over the past decade, stroke death rate in the United States decreased by one third, and stroke has moved from the third to the fifth leading cause of mortality.2 If a patient with an acute ischemic stroke presents early enough to the hospital, systems should be in place to appropriately administer tissue-type plasminogen activator within less than an hour of arrival, thereby often doubling their chances of achieving future independence.3,4 Some patients may continue on to the angio-suite for mechanical clot retrieval; those who do are twice more likely to be independent at 3 months.5–7 Despite these remarkable advances, only around 5% to 7% of patients with acute ischemic stroke receive tissue-type plasminogen activator.8,9 Mechanical thrombectomy is reserved for an even smaller proportion. Although community education may increase the proportion of patients calling for help sooner10 and mobile CT scanners and prehospital treatment may shorten the time and increase the proportion of patients receiving tissue-type plasminogen activator,11 for most patients, stroke remains disabling and often deadly. For these reasons, palliative care remains an important part of the stroke care that we deliver, especially for patients with severe stroke. Here we provide a contemporary review of the literature and offer some recommendations on how stroke providers may integrate palliative care into the care of their patients with severe ischemic or hemorrhagic stroke, focusing on early interactions. Stroke palliative care is fundamental to high-quality stroke care …

Seizures after decompressive hemicraniectomy for ischaemic stroke

Objective The risk of seizures after malignant middle cerebral artery (MCA) infarction with decompressive hemicraniectomy (DHC) is uncertain. Also unknown is how this complication influences survivors’ recovery and quality of life. Methods We retrospectively reviewed medical charts of all patients admitted to Harborview Medical Center between 1 January 2002 and 31 June 2011 for space-occupying MCA ischaemic stroke and who underwent DHC. Survivors and their surrogates were invited to participate in a telephone or in-person interview. Results Fifty-five patients were followed for a median of 311 days (IQR 134–727). Twenty-seven patients (49%) had seizures, 25 (45%) developed epilepsy and 21 (38%) achieved moderate disability or better (modified Rankin Scale score ≤3) by 1 year after stroke onset. The only factor significantly associated with seizure occurrence was male gender. Median time from stroke to first seizure was 222 days, with a cluster of first seizures within weeks after cranioplasty; only two of the first seizures occurred right around the time of stroke onset. Follow-up time was significantly longer for patients with seizures (605 days, IQR 297–882) than for those without (221 days, IQR 104–335). Of the 20 patients interviewed, 12 achieved moderate disability or better, 15 experienced a seizure with 6 indicating the seizure was a major drawback. Regardless, all 20 would have chosen DHC again. Conclusions In this case series, patients were at high risk of developing seizures after malignant MCA stroke with DHC, especially after cranioplasty. Assuming these findings are replicated, means should be sought to reduce the occurrence of this complication.

Neurologists as primary palliative care providers: Communication and practice approaches

PURPOSE OF REVIEW To present current knowledge and recommendations regarding communication tasks and practice approaches for neurologists as they practice primary palliative care, including discussing serious news, managing symptoms, aligning treatment with patient preferences, introducing hospice/terminal care, and using the multiprofessional approach. RECENT FINDINGS Neurologists receive little formal palliative care training yet often need to discuss prognosis in serious illness, manage intractable symptoms in chronic progressive disease, and alleviate suffering for patients and their families. Because patients with neurologic disorders often have major cognitive impairment, physical impairment, or both, with an uncertain prognosis, their palliative care needs are particularly challenging and they remain largely uncharacterized and often unmanaged. SUMMARY We provide an overview of neuropalliative care as a fundamental skill set for all neurologists.