What I Did Instead Of Falling Apart | The Coma Chronicles

For those of you who wept, thank you. That needed to be done. 

For those of you who prayed, thank you. That needed to be done. 

For those of you who gave, thank you. It is needed.

For those of you who had a good strong drink, thank you. 

Someone was going to do that and it wasn’t me. 

I notice many of my friends are navigating health crisis with loved ones lately. For this reason, I must share a few technical details which have made an impact on Imani’s journey.  Primarily, helping the health professionals know there is something at stake and people care.

1. Keep a detailed log. Write down the name, date and time of any person who has spoken with you about your loved one’s condition.  Write down what they said. Seriously, everything.

Example:  At 4:00 PM, on Day 1, they say, “no real change, withstood breathing trial for 30 minutes, undirected movement.” Write it down, because on Day 2 at 8:00 AM you may get a report from a different person, who says, “she’s doing so much better, the breathing trial lasted an hour, and she’s moving her hands and we think we are going to do ______ radical departure in treatment.  

You can ask, “Specifically, what changed in the seven hours between shift change which warrants ______ radical departure in treatment?”

2. Be the editor of everyone’s experience.  Every nurse, aide, doctor, social worker on you loved ones’ case has a bias.  Some are skilled at staying neutral; some are skilled at giving hope; some are skilled at conservative, cautious prognosis.  I viewed my job as my daughter’s advocate. That meant I needed to stay with the facts.  Stay with the science.  

3. Learn the routine.  What is the shift change protocol? When are assessments made? When are tests given? When is the patient turned? Then call to gather data in the “downtime” when the nurses aren’t busy caring for your loved one. 

Time table for when to call:

8:30 - one hour after shift change.

10:00 - immediately following assessments, tests, doctor evaluation.

1:00 - after lunch.

5:45 - 15 minutes before shift change as they are starting to gather their notes.

8:30  - one hour after shift change

10:00 - before bed.

4. Demand continuity of care. Doctors and nurses rotate. All they have are notes on a chart.  They don’t get the back story.  They don’t know your loved one. They have no ability to know your loved one.  The only constant in your loved one’s care is you.  You are the one who fills in the gaps in the chart. 

5. Make the doctors do their job.  If allowed, doctors will breeze through; make an exam; and decide treatment as if their word is law. Their word is not law.  You have a right to an informed decision. They have an obligation to provide you with information.  Repeat. You have the right to give informed consent.

Example: One doctor tried to use baby talk with me.  I informed him that I have the same level of education as he does. My specialty is simply different and that he would kindly speak to me like an intelligent, capable human being. 

Example: One doctor was obstinate about his aggressive treatment plan. His treatment plan differed drastically from the previous doctor’s. I pulled up my notes, told him verbatim what the other doctor said. Told him that I concur with the first treatment plan, and that I was now calling for a second opinion. If he was unable to collaborate with his colleague and provide continuity of care, I would do it for him.

6. Send cold, logical, detailed, factual feedback. Learn the chain of command and speak with the decision makers.  

Example:  There were two doctors.  One was very busy one afternoon speaking with someone at home about something on his kitchen counter.  Another doctor was simply too busy to talk to me and would not wait the five minutes I needed to get out of the car, into the house and get to my computer.  On both occasions, I wrote the Chief Of Staff an email about proper communication, listed the date and time, the incident and reminded him about the legal importance of informed consent. 

The outcome was that rather than me chasing down the doctors and pinning them to the wall, both doctors called me everyday as soon as they dealt with my daughter.  They took the time to discuss her treatment plan. They allowed me to review my notes to see whether they were in accord with what other doctors said. And gave me time to clarify every single step of the treatment plan. 

7. Do not let doctors exploit your trust.  We place a lot of trust in doctors. Their very training and the fraternity-like levels of hazing they undergo to get their medical license reinforces a notion of superiority.  Many think of themselves as smarter and more important than we are.  They are experts in a very specific skill set. Yes, you may give that to them.  

But, you, another family member, and the nurses are the ones who are actually doing all the observing of symptoms, changes and responses to treatment. You have as much data as they do. Make them work with all of you. The Lone Ranger was problematic for reasons more than race and colonialism. He wasn’t anything without Tonto. The nurses know what is up.  They are the people with whom you’ll be spending time. They see the hour by hour changes.  They are the most important data in your log.  

Example: One doctor talked about a cloud on the MRI. Another doctor said there was too much movement to determine anything.  A third doctor said nothing was there.  My question was: "On this date, Dr. 1 said ____ and on this same date Dr 2 said ______, and on this date Dr 3 _______.  I'm going to need a second opinion or you're going to have to give me a unified understanding of this result. Which will it be?" Well, we got a definitive answer. 

8. Know and plan for all potential outcome{s}. Today's American medical industry is exactly that ~ a profit driven industry. Ultimately, your loved one is a number on a bottom line.  As soon as they can insure that the patient will not be a liability (lawsuit,) they will hand them off to the next caregiver. They need to clear the bed to get paid.  This can happen in moments.

Make sure you know every detail of every potential outcome... even the worst.  Then ask for a long term picture. Make them take you through it step by step...pending each medical outcome.  If there is a short cut, the insurance companies will make them take it. Bet on it.

Example: The doctor said my daughter could experience a complete and full recovery.  When there was talk of an Assisted Nursing Living Facility, I asked "How does this fit in with the full and complete stated by Dr. X?"  Well, they had to change that didn't they?

Now, that she is in a Physical Rehabilitation Facility, "the insurance has authorized seven days of therapy."  But, they were counting her intake and discharge days.  I asked them to "read me back the language and tell me how this fits with Dr. X's recommendation to achieve a full and complete recovery?"  Asking them to read back the language got my daughter an extra day of therapy.  If the insurance is covering days of therapy, not days in the facility, the patient should not be denied that which they are entitled. 

This was no time to go pieces.  In these moments, I viewed myself as a knife, cold, impartial, logical, and clean. I am the piece maker. I could harm or I could heal.  I am still ready.   Imani Nia’s Recovery Fund helps me stay ready.