1 Intro 0:34
2 End-of-life Care for Patients with Neurologic Disease 0:43
3 Preparing for End-of-life Care • Advanced Care Planning (Directives) • I-POST (Iowa Physician Orders for Scope of Treatment) • Healthcare Power of Attorney (POA) 1:06
4 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 0:26
5 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 ce… 0:44
6 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 cli… 1:24
7 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 2:20
8 Palliative Care Manage the needs of the patient for the best quality of life with control of pain and other unpleasant symptoms 0:31
9 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 … 1:05
10 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 … 1:01
11 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 spo… 2:14
12 Possible goals of care Longer life Symptom relief Time at home Ability to travel Mental clarity Mobility Minimizing burdens on loved ones Spiritual growth 0:29
13 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 d… 4:48
14 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 … 1:22
15 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 CN… 7:58
16 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 hav… 1:20
17 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 tolera… 3:00
18 Advanced dementia • Cognitive and functional decline . Apraxia is common . Caregiver stress, burnout common • Wandering, inappropriate behavior, agitation, safety concerns • Apathy 50%, delusions/hal… 2:00
19 Treatment for demented patien • Alarms, barriers for wandering • Cholinesterase Inhibitors, Memantine for moderate Alzheimer's • Antidepressants for anxiety, mood problems • Antipsychotics: only for … 3:09
20 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, pressu… 1:30
21 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% (… 2:27
22 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… 2:44
23 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 avoi… 1:22
24 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) … 0:55
25 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, … 0:59
26 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 prefe…