Harnessing the lifesaving potential of interactive mobile

Through ModRN Health, we’re realizing our vision that no one should be alone on their healthcare journey. The ModRN Health solution includes a mobile app, where a personal health record is combined with note-taking and information-sharing functionalities These tools give each member a 24/7 connection to personalized assistance from nurse-led coordination, plus access to the documentation to support the care.

Why does this matter?

The ability to share signatures and documents remotely can make a profound difference in a patient’s and family’s experience with quality of care. Sadly, I saw this play out in a situation where the consequences were devastating.

As a nurse, I was caring for two brothers, ages 13 and 15, who were born with a severe form of an autoimmune disease called epidermolysis bullosa, a heritable connective tissue disorder. Because the disorder is caused by protein defects in the skin, the most

striking symptom of epidermolysis bullosa is blistering, brought on by the separation of skin layers after only minor trauma. People with a mild form of the disease may have just a few blisters on their skin, whereas others may have many blisters. In some forms of the disease, blisters also form in the mouth, stomach, esophagus, bladder, and other parts of the body. Epidermolysis bullosa can be both disabling and disfiguring, and in severe cases may lead to early death.

The brothers under my care both had severe cases of epidermolysis bullosa. Both were nearing the end of life. They were no longer mobile due to extensive blistering, and they were severely disfigured. Understandably, the boys were uncomfortable leaving home. The boys’ parents had devoted their lives to caring for their sons, and this involved bandaging and re-bandaging the boys’ entire bodies several times each day. I was blown away by the parents’ dedication. Caring for their sons was an enormous undertaking. The boys had spent most of their lives at home, rarely seeing people outside the family.

One evening, I was getting the report from the day shift nurse as I began my night shift. The day nurse relayed that a children’s hospital was on its way to pick up the boys and fly them to the children’s hospital for specialized care, given their precarious and deteriorating conditions. The parents were not allowed to join the boys on the plane, and the children’s hospital was a three-hour drive away. The boys’ parents had to leave their sons before the flight departed so they could be at the children’s hospital when the flight landed and the boys were admitted. The boys said goodbye to their parents, and I began getting them ready for the flight. I reassured the parents that I’d keep in touch to let them know when the boys’ flight was scheduled to depart so they could time their road trip departure accordingly.

Two hours later, I got a message that there had been a problem with the plane and it would be a few more hours before the boys could be transported. This was so hard for the kids! They were already anxious about being under the care of someone other than their parents, especially since their skin was so traumatized and painful to the touch. And, they’d never been on a plane. The brothers were brave but understandably fearful.

Many hours later, at 3 AM (!), the flight team finally arrived. And, although they had received all of the paperwork at the beginning of my shift, they informed me that they could not uphold the boys’ current “Do Not Resuscitate” document. Instead, they now required that the parents sign a new form. Unfortunately, the parents had left hours ago to get ready to make the drive meet the kids at the hospital, and were waiting to hear from me about the status. Of course there was no way I was putting the kids on an airplane without a DNR! The slightest touch was excruciatingly painful and their skin literally slid off with a simple rub. Not to mention they were nearing the end of life. I couldn't imagine the pain they would suffer if CPR were performed on them. So, I asked the flight team to wait while the parents drove all the way back to the hospital to sign the new DNR. Finally, by 5:30 AM, the boys were ready to go. The parents left to start the three-hour drive, and we got the boys on the plane. I completed my night shift and went home.

When I came back that evening for my next shift, I learned that the older of the two boys had passed away during the flight, without his parents by his side, and, sadly, right in front of his younger brother. The delay in processing paperwork had caused the family to miss the last window of opportunity to be together before one of the brothers died. The ModRN Health app--if it had been available--would have permitted and facilitated electronic signatures and document sharing from the very beginning. This, in turn, would have saved those several critical hours that then would have allowed the entire family to be at the children’s hospital together.