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Diapers for lack of trunk control

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    #1

    Diapers for lack of trunk control

    I recently came across a campaign to raise awareness of synthetic "marijuana" run by the parents of a girl who had suffered strokes after taking a lot of it last December. A week ago they published a photo of the young girl, Emily Bauer, crying, claiming that she had been crying "help" for 45 minutes because she needed to pee. She was wearing a diaper, and the rehab staff believed it was not safe to lift her onto the toilet because of her lack of trunk control, so she was expected to just pee in her diaper. They do not say what she does about bowel movements.

    The page is here: https://www.facebook.com/safe4emily

    And the photo of her crying is here, with comments: https://www.facebook.com/photo.php?fbid=335057916605618

    I discussed this with a friend, who herself uses them for other reasons (she has some degree of incontinence, but she is bedbound, has bladder spasms and would otherwise be on the bedpan pretty much all the time), and she told me that there are in fact supports that are available for when someone in this sort of situation. Emily does have spasms, and a baclofen pump is being considered.

    Does anyone else know if this is a good enough reason to keep someone in diapers if they're not incontinent? Or are the rehab staff being lazy, or incompetent? (They also did not talk to her mother, who is there with her, about range of motion exercises - she found this out by herself.)
    Last edited by IndigoJo; 11 Feb 2013, 10:21 AM. Reason: Info about spasms & pump
    Tags: diapers, rehab, stroke, trunk control
    #2
    Is she actually in an acute rehab unit/hospital, or in a nursing home? Is she in the USA? They should have a mechanical lift to get her onto a toilet or commode if she actually has voluntary control over voiding. Diapers should be a last resort, as should an indwelling catheter in this situation. I would urge you or her family to approach the head nurse or director of nurses about this situation...the patient advocate (if there is one) if that is not possible. This is below the standard of care.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

    Comment

      #3
      Originally posted by SCI-Nurse View Post
      Is she actually in an acute rehab unit/hospital, or in a nursing home? Is she in the USA? They should have a mechanical lift to get her onto a toilet or commode if she actually has voluntary control over voiding. Diapers should be a last resort, as should an indwelling catheter in this situation. I would urge you or her family to approach the head nurse or director of nurses about this situation...the patient advocate (if there is one) if that is not possible. This is below the standard of care.

      (KLD)
      I think it must be some sort of neuro-rehab place. It's no longer acute as such as she is regaining mobility (she also lost her sight but is getting that back), and has been able to partially feed herself.

      She's in Texas. I'm in the UK.

      Comment

        #4
        Acute rehab centers in the USA are those who provide a minimum of 3 hours of therapy daily (at least 15 hours weekly) counting only PT, OT, and speech therapy, and which are so designated by Medicare (as an IRF).

        Nursing homes sometimes call themselves rehab centers or LTACs (long-term acute centers), but are technically only providing sub-acute rehab, which at best would include only 1 hour of therapy daily, and rarely are staffed with trained rehabilitation nurses.

        Find out how this place is accredited. She should have access to either a patient advocate or ombudsman (depending on the facility).

        (KLD)
        The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

        Comment

          #5
          She's at the Memorial Hermann rehab centre in Houston, TX.

          Comment

            #6
            TIRR is a well recognized acute rehabilitation center, although not CARF accredited. I would recommend that she or her family speak with her case manager first, as well as the head nurse, and then also ask to speak to the patient advocate if that does not resolve this issue. They can also discuss this in a patient/family/team conference, which they have the right to request if not already offered to them.

            Spice is a potentially very dangerous drug that is causing many of these types of tragic outcomes across the country, primarily in young people:

            http://www.cnn.com/2013/02/04/health...marijuana-irpt

            (KLD)
            The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

            Comment

              #7
              I posted this comment on the photo, having asked various other friends about what they are doing to Emily:

              I've asked around about this as I have a number of friends who have disabilities or have close relatives who have, including the mother of a 15-year-old daughter who has cerebral palsy. They all told me that what the rehab centre staff are doing is wrong and unnecessary. The last person I asked (a disabled woman in the UK) said: "that's abuse. Plain and simple. That's dreadful. She needs a tilt in space commode/shower chair with Giberet toilet!" (I think she means Geberit, which is a Swiss brand, so perhaps other suitable products are available). I was also told that supports are readily available for pretty much every such need - the mother of the girl with CP said "we have this bar that goes all the way round - it lifts to let her sit and then closes and it's about chest height so no problems there".

              This is something you should be taking up with the staff - they do not always make the right decision or know what is best, and they may be looking for ways to make their own lives easier. I would have thought that if you refuse a person with a brain injury the use of a toilet, they might partly lose that ability because they don't need to hold it in as long as people often have to in normal life. Also there may be some judgemental attitude towards her because of how she got her injury. If they are talking about discharging her this month, it's vital that they should be training you in these things (like safe lifting techniques or the use of a hoist) and obtaining the equipment she will need. The bottom line is that safety is no excuse - they should be making it safe.

              Comment

                #8
                Is her family in Houston?
                Blog:
                Does This Wheelchair Make My Ass Look Fat?

                Comment

                  #9
                  Originally posted by betheny View Post
                  Is her family in Houston?
                  Her home town is Cypress or North Cypress. I think her mother is in the rehab facility with her, though. (She reported that she was changing the pads and she can be changed quickly, when I asked, and Emily was coping with it better for this reason.)

                  Comment

                    #10
                    Just attempted to post this through the rehab centre's contact form (however, it gave a "page cannot be found" error when I clicked Send!).

                    Dear Sir or Madam,

                    I have been following the case of a young lady who has become a patient of yours, Emily Bauer, who sustained a brain injury in December after taking synthetic marijuana. Her family have been running a campaign, Synthetic Awareness For Emily (SAFE), which at present is mostly conducted through a Facebook page.

                    On Feb 4, they published a picture showing Emily looking upset, with the caption:

                    Morning started off with a 45 minute crying spell for "Help" because Emily didn't want to have to use her "brief" to urinate. Sadly, there is no way to move her to the toilet safely yet.

                    Breaks my heart. I think it's an important aspect of this story to share though. People that are continuing to smoke synthetic- are you going to be okay with your loved ones (and strangers- the hospital staff) changing your diapers?? (end quote)

                    This is obviously a highly inappropriate and personal thing to reveal about their daughter, who is a young disabled woman. It is not a suitable method of raising awareness of the impact of drugs; the pictures of her in a coma, for example, already serve this need very well.

                    However, if as the caption implies, Emily is continent, and as they claim in responses to my inquiries, Emily is being kept in diapers because it is not safe to use the toilet due to lack of trunk control, this is also highly inappropriate, it is degrading and some would call it abuse. It is up to your staff to provide suitable aids and supports so that she can use a toilet if she is able to. I have asked various people who have expertise in this area and they all tell me that supports exist to enable people with all kinds of disabilities to use toilets and there is no need to keep a continent person in diapers for this reason.

                    I trust that your staff will take due steps to ensure Emily's dignity and end this abuse, if it is indeed happening.

                    Yours faithfully,

                    Matthew J Smith

                    Comment

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