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End of Life Care for Patients with Neurologic Disease

Mary Greeley Medical Center via YouTube


This course on End of Life Care for Patients with Neurologic Disease aims to educate healthcare professionals on preparing for and delivering end-of-life care for patients with neurologic conditions. The course covers topics such as advanced care planning, palliative care, managing stress for caregivers, and specific treatment options for conditions like ALS and dementia. The teaching method includes lectures on various aspects of end-of-life care and the importance of respecting patient preferences. This course is intended for healthcare professionals, especially those working with patients suffering from neurologic diseases, who want to enhance their skills in providing compassionate end-of-life care.


End-of-life Care for Patients with Neurologic Disease
Preparing for End-of-life Care • Advanced Care Planning (Directives) • I-POST (Iowa Physician Orders for Scope of Treatment) • Healthcare Power of Attorney (POA)
Advanced Care Plan: problems Only 25% of patients have AC Plan Often not available in crisis Often too vague Often not followed, as the family may not understand/agree
AC Plans: preparing for future in the-moment EOL decisions Choosing a surrogate decision-maker Clarifying the patient's values over time Establishing leeway in surrogate decision making (Are there certain decisions that you would never change?) Inform family and friends of one's wishes to prevent conflict
Role of physician in AC Plans Initiate discussion of goals of care Review written plans Make plans more specific as condition changes Convert plans into orders when appropriate Use plans to guide clinical decisions
Types of fragmentation: 1 Disease-centered, lose focus of the individual 2 Fail to communicate from one setting to another 3 Lack of update for plans
Palliative Care Manage the needs of the patient for the best quality of life with control of pain and other unpleasant symptoms
Cardio-Pulmonary Resuscitatio A minority of physicians knew patients preference for CPR or not In demented patients, overall rate of success for CPR is 0-4% In one study, cardiac arrest survival for demented patients is 0% for pneumonia, sepsis victims
Stress of caregivers 43% of caregivers report they are depressiu 34% of caregivers report a "large amount" of care-giving 31% lost most of their savings due to the illness 29% lost income because of their work 20% reported a major life change because of their new role as caregiver
End-of-Life Care in Neurology Delivering bad news when the end is near Strokes, Neurodegenerative diseases, such as ALS, Parkinson's, Dementias, etc. It is better to formalize the process, invite spouse/family in a non-rushed time frame without distractions Invite many comments/questions Acknowledge, validate, and reflect emotion, communicating empathy
Possible goals of care Longer life Symptom relief Time at home Ability to travel Mental clarity Mobility Minimizing burdens on loved ones Spiritual growth
Palliative treatment options Medications: pain relievers, anti- depressants/anxiety meds For delirium-No good options Respiratory support for ALS For non-motor symptoms of Parkinson's PEG tubes for dysphagia: strokes, neuromuscular (e.g. ALS), PSP, dementia Social support
Treatment of ALS Dysphagia: If PEG-tube (which does aiu survival) is considered, make the decision before VC is 50% or less Cramps: Baclofen, Gabapentin may help Pulmonary decline: Positive pressure ventilation, especially at night. Less than 5% of ALS patients choose tracheostomy and mechanical ventilation
Neurologic examples for EOL ca Hypoxic/hypotensive encephalopathy Major strokes with aphasia or major cognitive dysfunction with poor prognosis Head injuries with major deficits and poor prognosis CNS Infectious diseases, poor prognosis Glioblastoma, other tumors Dementias Neuromuscular degenerations
Dementia problems • Cognitive decline, not just memory-- behavioral changes and agitation are problematic • Dementia patients with little or no insight need supervision . Later stages of dementia have additional problems and stress for caregivers
Dementia patients . Clinical presentation is diverse Non-demented age-matched patients were 40% less costly (various co-morbidities) . Prognosis depends on diagnosis, co- morbidities, activity tolerance • Warn about high risk of delirium with hospitalization (any cause)
Advanced dementia • Cognitive and functional decline . Apraxia is common . Caregiver stress, burnout common • Wandering, inappropriate behavior, agitation, safety concerns • Apathy 50%, delusions/hallucinations 20-30% • 71% of severely demented die within 6 months, most in N. Homes
Treatment for demented patien • Alarms, barriers for wandering • Cholinesterase Inhibitors, Memantine for moderate Alzheimer's • Antidepressants for anxiety, mood problems • Antipsychotics: only for severe negative behavior (agitation, potential violence) • Benzodiazepines: only for short term use • Parkinson's dementia: reduce/stop anticholinergic meds, dopamine agonists, (last) L-dopa (use Rivastigmine?)
Poor prognostic signs in dementia . Inability to walk, dress, or bathe • Incontinence (not just stress) • Loss of speech/vocabulary (6 words or less) Serious illnesses (sepsis, asp. pneumonia, pressure ulcers, CHF) Significant weight loss
Prognosis in advanced dementi . Only 1% of advanced dementia patien... admission were perceived to have less than 6 months' life expectancy, yet 71% died within 6 months . Tube feedings used in 25% (range of 7-90%) . Non-palliative care (lab tests, IVs, etc.) is common .67% die in nursing homes, 20% in hospitals, 11% in hospice
End-of-life choices for infections in advanced dementia patients . Antibiotics? For in-hospital infections: 20 mortality--pneumonia worse inpatient survival than outpatient treatment • No improvement in survival for UTI, pneumonia with antibiotics • Inpatient procedures often painful . Palliative care-- inpatient care not recommended
Hip fractures: worse outcome in bed bound, advanced dementia patients .6 month mortality after fracture: 50-55% • Pain often was found to be undertreated • Choice of palliative, hospice care and avoid complications
Decisions about end-of-life care Living wills, advanced directives are one. inconsistent and vague • I-POST is more definitive, needs updating with advanced dementia patients (93-95% don't want CPR) . PO Attorney for medical decisions is best • Hospice is underutilized by dementia patients . Only 11% of advanced dementia patients are referred to hospice
Decision making in EOL care . Life expectancy ("How long?) . Time of treatment, benefit ("What will my life be like?") With acute stroke or other CNS problem, prognosis ("How Likely?) • Preferences, Goals of care
Summary • End-of-life issues in patients with neurological diseases can be complex • Many "treatments" are not helpful • Informed, advanced decision-making is strongly advised • Respect patient preferences and choices • Palliative and hospice choices are encouraged

Taught by

Mary Greeley Medical Center


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