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Background.
During my current block at Groote Schuur Hospital (GSH) Learn about GSH! 
, I attended a Multidisciplinary meeting which addressed the pathological process and the ethical considerations during the treatment of a patient with locked in syndrome, Click here!. A common concern among the healthcare professionals at the meeting was the issue of whether or not they thought the patient will go on to live a meaningful life and how does their perceived beliefs of “meaningful” affect the quality of treatment and level of respect for the patient.
Life can be defined as “the property of quality that distinguishes living organisms from dead organisms and inanimate matter, manifested in functions such as metabolism, growth, reproduction and response to stimuli” (Collins, 2019). The word meaningful is subject to the beliefs and values of the individual. Some of the healthcare professionals felt that if they had LIS, they would rather choose Euthenasia. This refers to the decision to purposefully terminate an individuals life for the sake of that person (Rowe, 2019).
Locked in syndrome (LIS) is a diagnosis, in which the patient is cognitively alert and capable of communication, however the patient cannot speak or move their limbs (Physiopedia, 2019). LIS is most commonly caused by ventral pontine strokes which are caused by basilar artery occlusion 
. Due to the damage to the brainstem, the patient typically maintains cognition and vertical eye movements. However the patient may also present with dysarthria and minimal movements in their limbs (Physiopedia, 2019). LIS is commonly known as a pseudo-coma, as the patient has a normal electroencephalogram and is able to hear and see what is occurring around them. GSH has had an influx of patients diagnosed with LIS, this has prompted members of the MDT to engage in conversation, with regards to adaptation of their roles when treating patients with LIS.
Individuals may view a patient with LIS as having an unmeaningful life. This may be due to the fact that he or she may not be able to take care of their family, progress and communicate. The patient may be viewed as helpless and constantly dependent on external support. During our meeting, health professionals felt that this made them treat the patient with a lesser degree of quality and often forgot that the patient could hear them.
A recent study done by Rosseau, Baumstark, Alessandri, Blandin, Villemeur and Auqier in 2015, found that persons with LIS live a relatively satisfactory level of Quality of Life. The same study also reports that these patients had almost no demands for Euthenasia, as well as the fact that a great number of the patients expressed a desire for resuscitation if required. These the individuals must therefore view their lives as meaningful enough to live for.
This study concluded that patients with LIS should be taught alternative methods of communicating, such as the usage of infrared eye movement sensors, which allows the patient to maintain a sense of autonomy 
click here! It also found that these patients also experience a greater quality of life if they are allowed to live within their own home environments.
As health professionals we should be aware that our role is to rehabilitate our patients. Sometimes this means that you have to have a conversation with your patient to see how he or she is doing. This also involves being respectful to your patients at all times, although you might think that he or she cannot hear or see you. 
References
Life definition and meaning | Collins English Dictionary. (2019). Retrieved from https://www.collinsdictionary.com/dictionary/english/life
Locked-In Syndrome. (2019). Retrieved from https://www.physio-pedia.com/Locked-In_Syndrome
Rousseau, M., Baumstarck, K., Alessandrini, M., Blandin, V., Billette de Villemeur, T., & Auquier, P. (2015). Quality of life in patients with locked-in syndrome: Evolution over a 6-year period. Orphanet Journal Of Rare Diseases, 10(1). doi: 10.1186/s13023-015-0304-z
2 thoughts on “Living a meaningful life: Locked in Syndrome.”
Hi Umar,
Thank you for sharing this piece. I enjoyed reading this as it’s something that I have personally thought about in my current experience of treating a patient with severe Guillan-Barre Syndrome. Similar to the patient in the video, my patient is unable to speak or move and is relying on mouthing of words to communicate. It would be amazing if South African ICU’s had access to the eye communication technology shown in the video. This made me think, is one’s life more meaningful when they are able to communicate?
I’m going to follow the rubric as I give feedback.
Context: You have chosen a topic that is definitely ethics related and something we have discussed in class. I especially like the fact that you have addressed how the perceived beliefs of the phrase “meaningful life” affect the medical personnel’s level of respect and quality of treatment toward a patient- you only stated this in the beginning, I suggest fleshing it out as it is so interesting and relevant. You could also go on further to describe the patient-physio relationship in this scenario and how might respect and patient management change because of the automatic beliefs that the patient cannot see/hear you etc. Your piece was quite short, there are points (like these) you have made that you can draw out more, explain, counter argue and justify. Also add a picture that resembles LIS, it doesn’t have to be specific to a human but something that you think would trigger the thought of this condition or resemble the view you’d like to create, for example a picture of someone behind bars or just a barricade on it’s own? To make the writing piece more ‘professional’ you can add the video as a ‘click here’ instead of a copy and paste url. The video is very effective- great stuff with this.
Argument: you have not made an strong argument as yet, you have made claims but have not explained these claims and justified them with counter points. You could argue more about why LIS does not lead a meaningful life and why it would. I think the idea of technology in these specific cases makes a big difference, perhaps there is literature on this?
References: I like that you have included studies in your writing, it adds strength to your piece but once again can be fleshed out more. Find more literature to support your current claims and the new claims you can make (from the above suggestion).
Writing: I did not notice any major spelling or grammar errors, only one- ‘How do their perceived benefits…’ I think you can structure your piece differently, I suggest introducing the idea of a meaningful life first, then go onto describe LIS. Your following paragraphs could then be claims as to why a patient with LIS would or would not live a meaningful life. This would be logically consistent and strengthen your views.
I think you are on the right track and I look forward to reading the final piece.
Thank you,
Jemma
Hay Umar
Context
It feels that you grasped the ethic assignment well, it is very related to our Ethics subjects discussed in class.
I believe that the video is very powerful and that it is very relevant to your piece.
I think it will be nice to explain what a physiotherapist and patient(in this condition) will be able to achieve and what we need to strive for. I also wanted to know while reading what you would of felt if you ever met this kind of patient and what you felt in the video, so I thin it will be nice to add about your feeling in this reflection.
Argument
Knowledge claim made but it feels like it is not fully claimed yet, I think giving more information about the LIS and meaningful life. I was able to grasp the communication aspect but not quite on the Meaningful life. It flows nicely and I am able to follow nicely
Reference
Everything looks good but I think a few more references will help to improve the writing
Writing
Im very weak in this area, so might not able to help but I believe that the piece was well written 🙂
Good luck in your block 🙂