MyICU Guide

MyICU Guide is a free tool made available to ALL families of ICU patients. Relying on hundreds of studies and other relevant materials to create easy to digest chunks of information to help families of ICU patients navigate the ICU. Below is an example of information contained in the guide.

Table of Contents

1. Introduction & Purpose of This Guide

2. What to Expect in the ICU

3. Meet the Care Team

4. Medical Conditions That Lead to ICU Admission

5. Patient Rights & Advocacy

6. Daily ICU Diary: Forms & Observations

7. Questions for Doctors, Nurses & Care Teams

8. Delirium, Coma, and Medical Records

9. Uploading Records & Building Patient History

10. Discharge Planning

11. Post-ICU Recovery

12. Understanding PICS & Beyond

13. Plain-English Medical Record Summaries

14. Support & Volunteer Forums

15. The Role of Family & Friends

16. My Story: Rob's ICU Journey

17. Final Checklists & Wrap-up

18. Appendices & Exhibits

19. Notes, Sources, & Reference Materials

1. Introduction & Purpose of This Guide

When a loved one enters the Intensive Care Unit (ICU), life changes in an instant. This guide is designed to support families during one of the most disorienting and frightening periods they may ever experience. It provides a clear structure for capturing vital information, understanding the ICU process, and organizing a record that will assist with recovery long after discharge.

This guide is also a way to empower family members to be more than passive observers: to become informed advocates, memory keepers, and participants in their loved one’s care journey. It was born from lived experience, and it is rooted in the belief that informed families make a meaningful difference.

2. What to Expect in the ICU

• 24/7 care from rotating teams

• Beeping monitors, tubes, ventilators, constant noise

• Changing shift teams every 8-12 hours

• Strict hygiene protocols, visiting hours

• Frequent medical jargon

Did You Know? ICUs are among the most expensive hospital departments, both financially and emotionally. Patients may be unconscious, but family presence still matters.

Tip for Families: Keep a notebook or use this guide daily. If allowed, take photos of the room layout to help your loved one later. Small memory triggers aid recovery.

3. Meet the Care Team

4. Medical Conditions That Lead to ICU Admission

Common diagnoses include:

• Acute Respiratory Distress Syndrome (ARDS)

• Sepsis

• Stroke

• Heart failure

• Post-surgical monitoring

• Neurological emergencies

(See Appendix B for full list with descriptions.)

5. Patient Rights & Advocacy

• Patients have the right to understand their treatment plan

• Ask for daily updates from the care team

• Assign a Designated Family Member (DFM) to receive info and relay to others

• Request a patient advocate or ombudsperson if needed

Did You Know? You can request a family conference with the full ICU team.

6. Daily ICU Diary

(Dynamic web-based + printable form) Each day:

• What happened medically

• What the patient looked like

• New medications or procedures

• Emotional observations

• Family questions/concerns

This diary becomes essential during recovery. It will also populate the patient's dynamic PDF record.

7. Questions for Doctors, Nurses, & Care Teams

Suggested questions:

• What is today’s goal

Visit myicu.org to get your copy of our guide.