Take Charge, Not Chances

A comprehensive emergency preparedness portfolio for ventilator users and caregivers.

In the spring of 2006, the Ventilator Users' Medical Emergency project of International Ventilator Users Network (IVUN) asked ventilator users with a neuromuscular condition, their families and caregivers, and their health professionals how to improve the often traumatic outcome of medical emergencies. To our surprise, all three groups cited the same three factors as most critical for fostering successful emergency care:

  • Advance preparation by ventilator users
  • Open communication between all parties
  • Education of medical staff about the unique needs of this group

Thanks to funding from the Christopher & Dana Reeve Foundation, IVUN is pleased to present a portfolio of documents which address these issues head on. We've called this portfolio 'Take Charge, Not Chances.' Now we invite you to do just that! You can take charge by doing the work of making these documents your 'own' and by having them with you at all times.

Documents

Take Charge Portfolio

Essential documents for emergency preparedness.

Home Ventilator User's Emergency Preparation Checklist →

Ventilator User completes it and, if desired, informs IVUN for recognition.

Caregiver's Emergency Preparation Checklist →

Caregiver(s) completes it and, if desired, informs IVUN for recognition.

Patient's Vital Information for Medical Staff →

Ventilator User completes it for use by Medical Staff.

Treating Neuromuscular Patients Who Use Home Ventilation: Critical Issues →

IVUN briefing for health professionals.

For Users

Home Ventilator User's Emergency Preparation Checklist

Steps to prepare for medical emergencies.

Completing My Documents

  • I have completed the Patient's Vital Information for Medical Staff and secured on it the signatures and phone numbers of my primary care physician and pulmonologist.
  • I have read and I understand Treating Neuromuscular Patients Who Use Home Ventilation: Critical Issues, the IVUN briefing for health professionals.
  • I have given copies of the above documents to my primary care physician and all other health professionals.

Conversation with My Caregiver(s)

  • I have reviewed the Patient's Vital Information for Medical Staff with my caregiver(s) and given each a copy.
  • To facilitate rapid emergency treatment, my caregiver(s) and I have agreed on who will be my main spokesperson in each of several possible emergency scenarios.
  • My caregiver(s) and I have talked through what we will do and say in the event of a communication breakdown with health professionals.

Getting Acquainted with Emergency Personnel

  • If my hospital is small, I have introduced myself to the Emergency Department and given them the Patient's Vital Information for Medical Staff and Treating Neuromuscular Patients Who Use Home Ventilation: Critical Issues. If my hospital is large, I have requested that they upload digital copies of these documents into their file on me.
  • If possible, I have had my home ventilator and, if applicable, CoughAssist® approved in writing by my local hospital for in-hospital use and have attached the documentation to Patient's Vital Information for Medical Staff.
  • If applicable, my caregiver(s) are prepared to administer the CoughAssist® in the absence of available respiratory or nursing staff.
  • I have given a copy of my Patient's Vital Information for Medical Staff to my local fire department to alert them to my condition and unique needs.
  • I have given a copy of my Patient's Vital Information for Medical Staff to my local ambulance/paramedic service and, if possible, cleared my equipment with them for use during transport.

Assuring Backup Power

  • I have a backup power supply in my home or one that is readily available to me.
  • I have a backup ventilator readily available for use in an emergency.
  • I have a manual resuscitator bag at home and carry one with me when I leave home.

Documenting My Wishes

  • To assure that my wishes are respected I have completed a Medical Power of Attorney (also called Durable Power of Attorney for Health Care) form authorizing another to make medical decisions if I am unable. If this form does not include a section stating the conditions under which I do/do not want to continue medical care, I have also completed a brief Living Will.
  • I have given the above documents to my physician(s), family and caregiver(s).

Pausing to Consider

  • I am aware that in general the pulmonologists most skilled in treating persons who use home ventilation due to a neurological condition are those who treat diseases of the muscles rather than those (many pulmonologists) who treat diseases of the lungs.
  • My caregiver(s) and I are prepared to seek additional expert opinion on the necessity/timing of a tracheostomy, should that procedure be proposed by physicians not familiar with noninvasive ventilation.

Traveling with Important Documents

  • I have assembled the following and always carry the packet with me when I leave home: Patient's Vital Information for Medical Staff, Treating Neuromuscular Patients Who Use Home Ventilation: Critical Issues, Living Will, Medical Power of Attorney, and Insurance Cards.
For Caregivers

Caregiver's Emergency Preparation Checklist

Preparation steps for those who support ventilator users.

  • I have read and understand the Patient's Vital Information for Medical Staff document which the person I support has completed for use in an emergency.
  • The person whom I support and I have talked through his/her Home Ventilator User's Emergency Preparation Checklist to the satisfaction of both of us.
  • I have visited the local hospital's Emergency Department and the local Emergency Medical Services facility with the person whom I support. Or, if the hospital is large and very busy, we have simply requested that they upload the Patient's Vital Information for Medical Staff and Treating Neuromuscular Patients Who Use Home Ventilation: Critical Issues into their patient records.
  • I have read and understand Treating Neuromuscular Patients Who Use Home Ventilation: Critical Issues written for medical professionals.
  • The person whom I support and I have talked through a handful of emergency scenarios, rehearsing who would do and say what in each case.
  • I am aware that burnout during a medical crisis of the person I support is a real possibility for me and that a network of support is critical for preventing and/or dealing with this.
  • I have listed and discussed with the person I support some of the support that I as a primary caregiver may need during his/her medical emergency.
  • The person whom I support and I have made a list of persons who might become part of this network, e.g., a backup caregiver, friends to visit, neighbors for pet care, family to problem solve and make decisions, a counselor to support me.
  • To nurture an honest and respectful relationship between us, the person whom I support and I periodically talk about what we need from/can give to each other.