On Being an Advocate

ad·vo·cate: one that pleads the cause of another; one that supports or promotes the interests of another

The most important thing that anyone has told us during this experience was, “Be an advocate for Zoe”.

I can’t possibly state how important this idea is for someone dealing with a child (or anyone) who is ill and facing a long process toward recovery, particularly when that person cannot fully advocate for themselves. I’d like to offer a few thoughts on that for anyone who encounters this blog, just in case no one says the same thing to you when you are faced with anything like what we have been.

During our first days of confusion, fear and uncertainty, as we became aware that Zoe was in an extraordinarily fragile state and the worst could happen at any time, we really didn’t know what to do to help. The feeling of powerlessness, of helplessness, when a child is ill is very nearly overwhelming. We didn’t know what to do, how to help, or even how to get out of the way.

The night that Dr. M came in to tell us what Zoe was facing was a dark and difficult night. The next night, when we spoke again, had clearer heads and were able to gather more information, we asked what we could do, how we could be of help in getting Zoe through this. Dr. M told us that the very best thing we could do was to “be an advocate for Zoe”. I’m not sure I can say we understood what he meant then, but we do now in very concrete terms.

As the days have gone by in the hospital, there have been numerous occasions when we were confronted with moments when we weren’t sure about what was going on, and were it not for the early encouragement of some of the hospital staff we might have simply remained silent. I’m not certain we would have ever become so involved in Zoe’s treatment that we felt confident questioning and occasionally challenging the situation to ensure the best level of care were it not for those words.

Being an advocate to me means always thinking of what’s best for Zoe in each moment and each interaction with doctors, nurses, staff, and equipment. It means setting aside my own resistance to “rocking the boat” or saying to someone “what are you doing and why”. It means trying to be nice, but not so nice that we let things go unchallenged when they need to be.

I’m not suggesting that manners are out the window by any means, simply that we have to be the front line for Zoe, the strongest defense against any possible errors, mistakes or oversights, and that sometimes means being firm when we might instinctively be easygoing.

Some examples:

  • Asking what and why all the time until we understood exactly why each procedure and medication are necessary — not to challenge the expertise of the staff, but to make sure we understood so that when new staff or different staff are on, we can help keep things consistent
  • Being firm about cleanliness, requiring staff to wash after coughing (which even nurses do not always do on their own), asking volunteers and well-wishers to stay away during uncertain times
  • Asking doctors to come back and re-explain or elaborate on procedures if you don’t feel comfortable with your understanding of what’s going on
  • Asking nurses to come back later when Zoe is upset and they need a “vitals” reading, giving her time to calm down even if for a few minutes — this was particularly necessary when her BP was reaching dangerous levels and we felt we needed to intervene lest she become even more upset by the attempts to test her
  • Being firm about taking readings from the same arm for consistency, since that sort of thing isn’t consistent across nurse shifts
  • Watching what medications are administered and when
  • When concerned about something — blood pressure, temperature, or other symptom relevant to another condition — asking to have it checked more often until you feel the situation is properly monitored
  • Asking to have lines removed if they are no longer in use so as to be able to properly comfort her — there are times when IVs are left in for convenience but may not be used until the following day, for example
  • Asking to have dressings changed if you feel they might have gone too long without it
  • Asking someone to stay in the room with a child if you have to leave, even for a few minutes, so that someone is always there to comfort her

One might easily think that many of these things are done by routine, that there is not a need to remind or ask for them, and you’d be right in many cases. Where advocacy comes in is ensuring that they are always done, that the level of care is always high, no matter what else is going on.

Any good doctor or nurse should welcome questions and welcome your assistance in providing the best care. We encountered push-back from staff only one time, and it was quickly remedied when that person spoke to another person who had been on an earlier shift and confirmed what we were saying, and the treatment orders were quickly altered to reflect it as well.

Those of us who aren’t in a medical field can perhaps forget that doctors and nurses are not superhuman. Everyone is tired at times. Everyone has the potential to make a mistake. Everyone has a bad day, a bad mood, a forgetful moment, is anxious to leave at the end of a long shift.

The parent or advocate’s job is the ensure that when that moment comes, a gentle reminder or a firm request is there to keep the level of care consistent and protect your charge. You are the only one(s) that are there all the time and see everything, and you are therefore the only ones that can ensure the best and most consistent level of care for your child or loved one.

4 thoughts on “On Being an Advocate

  1. Evan and Michelle,

    As I read this post I am reminded of the many months I was sick and how on top of everything you needed to be. Alot of times when you thought what you were asking was ridiculous or redundant, you knew you needed to be persistent and for your own peace of mind you needed to be firm. Doctors and nurses are human, they get tired and they do things over and over each day that it is so easy for them to not be on top of their game that you need to have an advocate to make sure the best of care is given and received. Continue to be an advocate for Zoe she cannot do that and as parents you have every right to do this. Hang in there and hopefully everyone will be home on Friday!

    Love,

    Gail

  2. Pingback: Taking our Medicine : HLH Journal

  3. Pingback: DAY +11 | Liam's HLH Journey

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s