Patient Advocacy on Behalf of Hospital Patients

By: Loolwa Khazzoom, Founder, Dancing with Pain

December 3rd, 2008 • Patient AdvocacyPrint Print

Given what I have seen in my mother’s hospital care recently, I have come to understand that there is a dire need for patient advocacy on behalf of hospital patients. I was by my mother’s side for two full weeks, watching her like a hawk — which turned out to be absolutely necessary for ensuring her proper treatment.

Of course, I finally had to leave and get back to my own life. Once I returned home, I faxed over key information (below) for the nurses and sitters (also known as CNAs, or Certified Nurses Assistants).

I then had to stay on top of making sure that the caregivers were reading what I had sent. We cannot, I have found, trust that medical practitioners will pay attention to or remember everything we communicate with them — especially in the case of hospital care, where there is a new doctor, nurse, and sitter on call at least every 12 hours.

So several times a day, I check in — first asking the people on call if they have read what I sent, then going through a list of the most important issues:

  • Has my mom taken her meds?
  • Has she been turned regularly?
  • Has she received physical therapy?
  • Has she eaten enough? 
  • Is she receiving Glucerna (a diabetic proetin shake) to supplement the food? 
  • Is she getting her pain meds frequently enough, especially before turning?
  • Is she getting her asthma spray?

Here’s what I faxed over: 

1. Picking at the stitches

My mom has developed a habit of frequently picking at the stiches on her head. She is very responsive every time I tell her to stop; she just keeps forgetting, because it itches.  For the CNAs, please keep an eye on her and remind her when she forgets.  I have told her it’s fine for her to rub her scalp, just not pick at the stitches.

2. Hygiene

I have seen a few things that have concerned me in terms of hygiene.  As a reminder, if something falls on the floor, please do not put it back in my mother’s bed.  In addition, please make sure that anyone drawing her blood sanitizes his/her hands and wears a glove.

3. Tips for turning my mom:

My mom has been terrified of being turned, because on numerous occasions, she has been in excruciating pain during the procedure.  I have witnessed a few things that have made a night-and-day difference in how my mom is moved — leading to no pain, and therefore to my mom’s full cooperation:

a. Please make sure that her pain medication is still highly active before she is turned. In other words, if it has been four hours since she received her pain medication, please give her another dose before turning her.

b. Please go extremely slowly when turning my mom — letting her know verbally each move you are about to make, before making it. In other words, before turning her back to the right, say, “We are going to turn your back to the right.” Then pause, giving her a little bit of time to absorb the information and prepare her body for that move. She will say okay when she is ready.

c. Please also listen carefully to any information my mom gives about hand position. I have seen my mother scream in pain when someone’s hand is in one place on her leg, but have no pain when that person’s hand is held just a few inches away from that spot on the leg.

d. By communicating with my mother in these ways, my mother not only will brace her body for each move (and therefore feel less jolted), but also, my mother will feel more empowered. It is incredibly distressing when she feels people are yanking her body around without her having any say in it, especially considering her fragile state at the moment. It makes all the difference in the world — both to her pain level and to her emotional state — when she is an active participant in the process.

4. Movement

Please make sure that my mom gets out to the patio as much as possible.  If she seems resistant, please let her know that the more she moves, the sooner she will get out of the hospital and get home.  She is very eager to get out of the hospital, so that is an effective way to motivate her.

5. Pain medication and asthma spray:

My mother has suffered from waiting for pain medication on an “as needed” basis or even every six hours.  For this reason, the doctor I spoke with a November 28 authorized giving my mom Vicodin every 4-5 hours on a regular basis.  I think this is something we can revisit in a few days, when hopefully her pain levels will have gone down.

In addition, in my conversation with the doctor on November 28, I discovered that there has been an oversight in my mother’s medication in the two weeks prior — namely, she had not been receiving her asthma spray.  She needs to take the spray one puff twice a day, on a regular basis, to keep her lungs clear.  When she was not receiving her medication, she had a hard time breathing and was wheezing so loud that I could hear it sitting down next to the bed. 

She did not seem to need the nebulizer treatment anymore, at least when I was there, once she began her asthma medication.  Prior to that, she was requesting it regularly.

6. Resistance to Medication:

Since becoming cognizant, my mom has been very resistant to taking medications.  She has been concerned that she is being given too many unnecessary drugs that are fogging up her brain.  I have explained to her many times what medications she is getting and why, and I have told her that I have confirmed that each of these medications is necessary. 

On Sunday, November 30, she had a breakthrough — understanding that she may not fully “get” why she needs to take each of the medications, but that she needs to take them anyhow.  She then took the medications that the nurse gave her, without a fuss.

Another issue going on here is that my mom is a very creative person who does not like to do things in rigid ways.  She keeps feeling that the nursing staff is rigid, because they are insisting that she takes medications when they want her to, instead of one she wants to. 

I have explained to her numerous times that the medications need to be taken every certain number of hours in order to be effective.  On Sunday, November 30, she also seemed to understand this for the first time since becoming cognizant, which contributed to her cooperation.

If my mom ever refuses to take her medications, please call me, and I will be happy to speak with her

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