1. Adam Turigliatto RT Amy Light MD Susan Bray-Hall MD ©AAHCM

2.  15 ventilator dependent at Portland VAMC ◦ 12 have ALS ◦ 1 spinal cord injury ◦ 2 severe respiratory insufficiency with nocturnal ventilation  Cared for either in homes (5/12) or Adult Foster Homes (7/12) ©AAHCM

6.  Pt is placed on the ventilator and monitored in the ICU for complications (first night)  RT bedside education starts immediately; family present  Transitioned to the ward  Continue with education both day and night shift  Education period can last up to 14 days or longer if needed ©AAHCM

7. Educate, Educate, Educate!  Introduction to the mechanical ventilator  Daily education and hands on training  How to order proper equipment and supplies  Preparation for discharge to home ©AAHCM

8. The family/caregiver is supplied with introduction to mechanical ventilation packet including:  Basic functions and features of the ventilator  Definitions of the controls/alarms  Patient values/baseline  Troubleshooting the ventilator ©AAHCM

9. RT provides daily education that includes:  Daily trach care  How to change an inner cannula  Proper suctioning, both inline and sterile  How to manually ventilate the patient  How to handle an emergency decannulation  Trouble shooting and assess for complications  Standard mandatory bedside items: spare trach, obturator, manual resuscitation device  How to operate other RT equipment: suction, humidification, assistive devices ©AAHCM

10. Family members/caregivers responsible for providing care must complete an overnight competency stay in the hospital. ©AAHCM

11.  Home ventilator, both primary and back-up  External batteries incase of power failure  Caregiver should contact the power company  If oxygen not necessary at baseline, is safe practice to have an 02 tanks for emergencies  DME equipment: suction machine, O2 sat monitor, humidification, assisting device  Sufficient quantity daily disposables: trach supplies, inner cannulas, suction catheters, etc. ©AAHCM

12.  Multidisciplinary communication mandatory; who is arranging the travel, bed, lift, power chair??  Has DME company completed home inspection?  Have caregivers successfully completed training and overnight stay?  Patient safety concerns from family, patient or team members?  Home health ordered if needed  RT transports the patient’s first initial discharge to home ©AAHCM

13.  Vent management just like any other support modality; think dialysis  Hardest part; not the vent, but multiple comorbidities  Caregiver is responsible for the day-to-day ventilator care ©AAHCM

14.  Patient baseline ◦ Oxygen requirements ◦ Peak pressure ◦ Sputum production  All orders in one quick place  Back up support system: ◦ RT for supplies, process issues, routine respiratory needs ◦ DME company for vent, supplies, maintenance ◦ Pulmonologist writes orders and available for urgent vent or pulmonary needs ©AAHCM

15. HOME VENTILATOR PATIENT ORDERS Date of initiation of home ventilator orders: 1999 Date of renewal of home ventilator orders: Dec 12,2012 Date of most recent RCS home vent check: Jun 13,2012 Diagnosis: ALS Mechanical ventilator make and model: Make: xxxxx Model: 950 DME ID #: Ventilator settings: Mode: A/C (Assist control) Rate: 12 breaths per minute Tidal volume: 700 mL Insp time: 1.5 sec PEEP: 2 cm H2O pressure Oxygen: 0.21. May have 2 oxygen tanks in the home for emergencies Sensitivity 3 ©AAHCM

16.  No recommendations for routine changing  Change on visits to hospital if possible  At home prophylactically or for urgent reasons ◦ Train caregiver, primary care provider ◦ Specialist to the home. ©AAHCM

18.  59yo admitted to hospital with respiratory failure. Dx with ALS. Placed on ventilator.  69yo previous dx of ALS. Admitted for elective tracheostomy and ventilator support. ©AAHCM

20. What is the trigger for discontinuing the vent?  “I cannot consider that right now”  “When I cannot write to communicate anymore”  “When I cannot walk anymore”  “The next time I get a pneumonia”  … ©AAHCM

21.  ACP Statement: ◦ 1991 Withdrawing is not different than not starting life sustaining treatment ◦ 1990 Cruzan case ‣ Home vs. facility ©AAHCM

22.  “I’m going to attend a death”  Checklist  Who is present?  Education  Medication plan  Procedure ©AAHCM

23.  Fentanyl SQ PCA (3 days prior)  IVs in place (1 day prior) Day of Event:  Care team meets  Chaplain and social worker for family activities, rituals  Medical team arrives; ensure all cell phones and pagers on vibrate/silence  Preparations for continuous care if needed ©AAHCM

24.  All questions about plan are welcome.  Every member of team should feel comfortable with the overall plan and role.  Bring water bottle, light snack—eat, if appropriate with family. Expect all day.  Cell phones & pagers silenced  Other personal care items  Call with any questions at any time ©AAHCM

25.  Goal alignment ◦ Die from natural causes; NOT “taking his own life”  No intent to expedite death  Time course: minutes, hours, days, a week. Prepare  Change ventilator settings  Family Presence  Absolute silence  Hearing preserved  Vital signs  Education about breathing changes  Music, Candles, Chair, Tissues ©AAHCM

26.  Draw up medications for push. PCAs functioning  Best location for RN managing meds  30 minutes prior: ◦ phenobarbital IV push ◦ atropine ophth. solution 3 drops delivered on tongue/SL ◦ Switch fentanyl SC PCA to IV, add midazolam IV PCA  10 minutes prior: ◦ midazolam loading dose 7.5 mg (peak effect 10 min) ◦ fentanyl 25 mcg (peak effect 6-10 min)  Time of vent removal: ◦ fentanyl 25 mcg (higher dose, if needed) + midazolam 5 mg prn  After vent removal: ◦ fentanyl and midazolam q 8-10 minutes as indicated by sxs* ©AAHCM

27.  Alarms are off on ventilator and oxygen  Suction  Dependence on ventilator? ◦ Over-breathing vent ◦ AC or pressure controlled ventilation ◦ reduce respiratory rate in ½ to assess distress ◦ switch from AC to pressure support ventilation 5/5 ◦ Turn oxygen to room air, turn off concentrator

28. silence ©AAHCM

29. Adam Turigliatto RT adam.turigliatto@va.gov Susan Bray-Hall, MD susan.bray-hall@va.gov Amy Light MD amy.light@va.gov Any Questions? ©AAHCM