Aphasia
Lamenting for the loss of words
They were there and now they are not
Shining like a woman with starburst eyes
vanishing leaving only a halo of tears in mine
searching for the words and their fate were
they kidnapped by a seducer a plunderer
drawn away in the hunting net of a thief who
cannot create but only appropriate
Have they been harmed molested are they safe
Lamenting for the loss of words
They were there and now they are not
To perpetrator the only thing sadder than the loss for words
is never having any of your own
-John Beam (2016)
I chose this poem called Aphasia by John Beam. The poem describes the grief and frustration that someone living with aphasia faces. The poet depicts an internal struggle with having the words but then having them stolen again and being unable to express what they are feeling. “Lamenting” refers to the grief and longing towards the loss of words, that comes along with the condition. The poet speaks of searching for the words but not finding them and wondering if they were stolen by a thief, not knowing where the words go. He then ends the poem by saying that the only thing sadder than being at a loss of words is never having any of your own.
This poem made me think of an aphasic patient that I was presented with. The patient became aphasic after she had suffered a massive stroke. When I began treating this patient I did not bother to ask for her informed consent on the assessments and treatments that I was doing with her because I was under the impression she was unable to make those decisions for herself and had no next of kin that could speak on her behalf. As a result I just greeted her and started my session with no explanation of what I planned to do. After a couple of sessions I noticed that the patient is not confused but actually alert and aware of what is happening around her which contradicts the information that I read in the file.
Aphasia does not affect the individuals intellengence, it is defined by the inability to use or understand words (Lava,N, 2019). As the poem illustrates, just as she tries to speak the words are stolen from her and she is left searching for them in an attempt to be heard and not grieve the loss of them. The poem has no specific structure or rhyme scheme which represents the lack of a set means of communication and expression that the patient suffered from.
Over the time that I spent treating this patient I realized that the patient’s attempts to communicate certain things to the medical staff and myself was very often ignored and disregarded because she cannot speak but is left to communicate using gestures, sounds and facial expressions. The line that reads “who cannot create but only appropriate” refers to the patient not being able to form her own words but having to use alternative and modified means of communication to express herself.
I then started speaking to her before every session asking closed ended questions and she would answer me by shaking or nodding her head or pointing to what she wanted me to see. In return, I would use demonstrations. The poem makes use of imagery by using metaphors and smilies to form a mental image of what is being described which represents the gestures, sounds, demonstrations and pointing that the patient and I developed as a form of communication. By immediately treating her how I saw her being treated by the other health professionals I took away her human right to have an opinion and give informed consent about what is being done to her. Informed consent is a process of communication where the patient makes an informed and voluntary decision regarding medical care, after recieving and understanding the information (“Informed Consent – ACOG”, 2009).
I believe that we are not adequately taught how to deal with a situation like this. We are, however, told to then speak to the patients next of kin or medical proxy but this patient had none. Physiotherapy student should be educated on aphasia and should be trained to support communication in all types of aphasic patients. The specific guidelines, regarding aphasic patients, we are expected to follow should also be provided to us so we are equipped to effectively deal with situations like this.
Due to my initial approach towards the patient, I became the thief stealing the patient’s ability to express what she wants and taking away her right to make an informed decision towards my treatment.
References
Informed Consent – ACOG. (2009). American College of Obstetricians and Gynecologists, Retrieved 23 August 2019, from https://www.acog.org/Clinical-Guidance-and-Publications/Committee-Opinions/Committee-on-Ethics/Informed-Consent
Lava,N. (2019). An Overview of Aphasia. Retrieved 23 August 2019, from https://www.webmd.com/brain/aphasia-causes-symptoms-types-treatments
3 thoughts on “Informed consent and aphasia”
Hi Tenealle, thank you for taking the time to create this piece of writing.
I think it was appropriate that you started off by providing an analysis of the poem. You really took the poem apart by explaining the meaning and purpose of individual words in the poem such as “lamenting”. Your poem “break-down” allowed for the scene to be set before continuing with your personal experience.
Additionally, I liked that you linked the analysis of the poem into your own experience. For example, when you unpacked the phrase “who cannot create but only appropriate”.
I cannot relate to your experience directly, as I have not worked with an aphasic patient before. However, I feel as though that I have taken something from your experience, which has provided me with tools to be better prepared for situations similar to this.
It is difficult for me to fault this piece of writing. However, if I had to give you one suggestion I would maybe ask you if you have considered mentioning that conditions such as aphasia are not well taught at university level in terms of preparing you (as a physiotherapist) on how to deal with these situations that you had to face in reality.
The analogy of you being the “thief” in the end was very powerful and thought provoking.
Thanks again 🙂
Dear Tanealle
Thank you for your lovely post. I applaud you for using a poem and think it carried your message over quite well, it definitely gave your piece a lot of emotion. I too, have gone through a similar experience as yourself regarding assessing and treating an aphasic patient and have also experienced how other students handle a similar situation. I commend you for being honest and realising your mistake and truly believe it is one many of has made or will make. Aphasia is an interesting topic and i myself only lately realised that one get expressive and receptive aphasia. I got from your post that we, as healthcare professionals, seldom understand the emotional and psychological aspect behind aphasia and more than often do not handle patients ethically the way the deserve to be handled, even though we often think we do. with your piece you have shed light on the topic and the great impact aphasia has on the patient. I would however like to know and maybe you can enhance your article by adding, how can we probably communicate with patients who endure this condition. I know you mentioned that the patient can nod or shake their head, but what id the patient is immobilised or also has a language barrier, maybe has expressive and receptive aphasia, etc? is there any evidence based advise or guidelines that you can add for instances as mentioned above? Also do you feel topics such as aphasia and how to truly communicate but also handle a patient with aphasia are taught adequately enough on an educational level, do you feel that we need more skills training when it comes to dealing with condition such as aphasia on an educational level? Lastly, are their existing policies in place to protect the patients and healthcare workers and a guideline on how to manage such situations?
Thank you again, for your post, I definitely have a better insight regarding what patients go through when faced with aphasia and I can see you too have had an eye opening experience that you have learned from. Thank you for your insights.
Stefanie
Hey Tanealle
I found this piece very fascinating. \
I loved the idea of the poem, which illustrates the feelings of aphasic patients in a different way. You did a wonderful job of interpreting this poem and connecting it to a personal experience you’ve had. I commend you for taking the patient’s feelings into account and making an effort to communicate to them. I cannot find fault with this piece. Wonderful job.