If you are reading this blog and are under 30 (or are over 30 and got lucky) or are the parent of a child with a disability that requires hospitalizations you have hopefully met a child life specialist or 2. Maybe you are a child life specialist. As a future child life specialist, my job is to help children who are in the hospital or who may have a lot of outpatient medical visits to deal with their psychosocial needs surrounding their medical situation in a developmentally appropriate way. I know back in the dark ages of medicine, and still even sometimes now, that the psychosocial needs of children were sloughed off as insignificant. Thankfully now for the most part the medical community has recognized how much hospital stays or repeated procedures can affect a child’s development. I don’t have a specific reference, but I do know that the American Academy of Pediatrics has recognized that child life specialists are an integral part of a health care team and has recommended that there be at least one in every hospital (that will happen one day I hope). But what about adults? There are plenty of adults who have complex medical needs. Their number will keep increasing as medical technology increases and baby boomers age. The framework of the American medical system is the same framework whether the patient receiving care is 3 or 83. Frequent interaction with medical personnel can still affect an adult’s psychological well being.
I have thought about this issue previously and am glad that I finally have a medium in which to share my ideas. My mother was diagnosed with leukemia back in 2000. She is still not in remission, but at least she’s alive, so I guess that’s a good sign. Over the last 7+ years she has dealt with this remarkably, until March when she entered a clinical trial at Johns Hopkins. When she signed the consent form it was like she signed her life over to them. They seem to think that it is totally ok for them to make appointments for her at the last minute or cancel appointments at the last minute (less then 30hrs notice). My mom has a job and she has friends and a significant other who she makes plans with. She tries very hard to make a life for herself even on all the drugs they have her on. What if she has something to do? Also, Hopkins always tells her to bring someone to drive her home (we live over an hour away). Who says she can find someone on only 30hrs notice? One doctor even threatened to kick her out of the trial because he thought that she was asking too many questions. If I kept going, the examples I have may reach 50 pages. They flat out treat her like a lab rat and see nothing wrong with their behavior. What if she were to continuously cancel appointments last minute? Would they kick her out of the trial? It happens that I go to school 25 minutes from Hopkins. I have a friend also going into child life who volunteered at Hopkins Children’s. Volunteers get their parking paid for. Lab rats do not.
My mom had yet another incident with Hopkins today and I’m glad I was around to validate her feelings. No one else ever does. They just tell her to calm down. Isn’t medicine dehumanizing she said? Yes it is, I replied. That is why I do what I do. They don’t teach this stuff in medical school. A lot of what child life specialists do is doctor and nurse education. My mom also has issues with having a lack of control. With children often doing something as little as asking them which band aid they want or which arm they want to have their shot in can give them back a sense of control. My mom is 50, I don't know what to do to give her control.
My mom was so upset (rightfully so) that she began to throw stuff. She needed an outlet for her anger. I immediately thought of 4 different things that I could try with a kid in this situation. Again, my mom is 50; none of those options seemed appropriate. The first was to rip up a phonebook (I personally have done this and find it rather cathartic). The second was to pound clay or to recreate her cancer drugs out of clay and then smash them. The third was to make a target, wet gauze so as to make it like a spit wad and throw it at the target. The last idea is this thing that involves paint and marbles. Of course you wouldn’t call the person a child life specialist, but why isn’t there someone who works in a hospital with adults to help them work through their issues and to educate doctors and nurses?
4 years ago my aunt was found in a coma. She was in the hospital for 8 weeks (most of that time not in a coma). Do you know how boring that is? The hospital was one of those that has a children’s hospital within a hospital. I’m sure there’s tons of stuff to do over there. But there wasn’t even one VCR on my aunt’s unit.
I have sat in the waiting room at Hopkins with my mom for an hour between appointments. In pediatric waiting rooms there are toys to help pass the time and take your mind off why you are there. Again, what about adults? Would there be harm in having decks of cards, suduko books, or maybe chessboards along with the magazines? If it were me, I’d even like to color. What about free hot chocolate/ coffee/ tea? I surely think that would increase patient satisfaction. A child life specialist’s job is sometimes just to listen. Having someone available to listen while you wait could be very beneficial.
This is another post that I cannot end with a neat and tidy conclusion. I wish there was an answer to this problem but there is not one.
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