Module 3: Language and Labels
3.1 “Vegetative” & “UWS”
This module (Module 3) focuses on the language used in relation to Prolonged Disorders of Consciousness [PDoC] and the attempts sometimes made to deploy sub-categories within the continuum of PDoC.
Diagnostic labels like “vegetative” or “minimally conscious” [MCS] as subcategories of PDoC can be useful for clinical research purposes in some circumstances (and a lot of research papers use such terms, or go further using refinements such as MCS+ and MCS- in order to test interventions or assessments and map broad patterns of outcome). Historically such distinctions were also important because they made a difference to how patients were treated in the courts. However, in many countries, such as the UK, this is now no longer the case as courts have moved toward a patient-centered (rather than diagnostic-deterministic) approach. In court cases, it is now common simply to hear that a patient has a PDoC, followed by discussion of potential for positive/negative experience. Indeed, many clinicians now argue that, when working with an individual, it is better to explore their quality of life and prognosis in their particular case, rather than focus on categorising them as VS or MCS. This approach allows everyone to focus on thinking about how the condition of this individual contributes to understanding their needs and best interests (ie centering the patient, rather than diagnositic categories).
The term PDoC also avoids some of the negative connotations of the category ‘vegetative’ and it is also important to think about the pros and cons of different terms in relation to communicating with families.
It is hard to know what language to use sometimes. For example, the word “vegetative” can sound very offensive – as if you are dismissing the patient as ‘just a vegetable’.
- “Vegetative” is the term often used in the UK in official guidelines (at leat historically) and it is at least familiar and relatively easy to understand.
- The professional bodies in the United States, however, recently decided to adopt another term: “Unresponsive Wakefulness Syndrome” (UWS).
Below we have summarised the findings from some research about how people feel about these different labels – you may find some of these findings surprising.
“Unresponsive Wakefulness Syndrome” versus “Vegetative State”: which is better?
A survey of how people responded to the term ‘unresponsive wakefulness syndrome’ [UWS] versus ‘vegetative state’ [VS] found that people had different associations with the two diagnostic labels. Also, although 60% preferred UWS, 24% preferred the term ‘vegetative state’. (See Kondziella, Cheung & Dotta (2019) Public perception of the vegetative state/unresponsive wakefulness syndrome. The Journal of Life and Environmental Sciences).
When we’ve asked families of patients in the UK about the term ‘unresponsive wakefulness syndrome’ we also found some people found it confusing. They felt their loved ones were ‘responding’ (even if just startling to noise in a reflex response) and so the label ‘unresponsive’ didn’t feel the right ‘fit’ to them. There were mixed feelings about the term ‘vegetative’ – some people found it derogatory, but others felt it was honest, easy to understand, clear, and even ‘a relief’ to have that label applied.
What do you think people liked or disliked about the different diagnostic labels for the same condition?
Look at the comments below under the terms ‘Vegetative State’ or ‘Unresponsiveness Wakefulness Syndrome’ select the comments you think people linked to the terms.
Post a response?
What do you think about the terms “Unresponsive Wakefulness Syndrome” and “Vegetative State”? Some people doing this course have already shared thoughts below – is there something you’d like to add, or a comment you’d respond to?
22 Comments
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Unresponsive wakefulness syndrome sounds more optimistic compared to vegetative state as if there is more change of the individual recovering. However, could also lead to false hope. Both are vague in conveying the likelihood of recovery.
Totally agree.
The term UWS sounds there is hope of recovering rather than VS.
I agree with Samantha, the UWS sounds more optimistic and cureable. I’ve never really liked ‘vegetative’ as I thought of it as dehumanising however now that I understand it comes from the fact that the vegetative functions are intact, it does make more sense and feels more appropriate.
I was actually surprised by the responses given for the ‘vegetative state’ label. for me, There is dire completeness of ‘point of no return’ with the term ‘vegetative’ and I am always uncomfortable when the diagnostic findings reflect this state of consciousness.
I think that the term vegetative state is much more direct and truthful. However, I find it extremely uncomfortable when using it, particularly with family members,but also colleagues… so much so that I always say “the person is deemed to be in a vegetative state” as if I am not taking responsibility for the term. I always then link it to the meaning that there can be little or no chance of quality of life. I always think that with vegetative state , the person has no awareness of positive awareness, but also no awareness of negative things either, which may be comforting for some family members, in terms of lack of awareness of suffering or pain. I don’t think people are aware of the term “vegetative functions” and therefore vegetative just sounds like vegetable. Unresponsive wakefulness syndrome is too long and confusing. A middle ground would be better.
Agree on all points with Sarah. Both UWS and vegetative state are difficult or inadequate to reflect truthfully how a patient in this condition is seen/perceived. UWS seems also particularly not suitable to to be used as it is easily misleading.
I have similar thoughts with the comments made.
I think for a ‘non professional’ or even some ‘professionals’ with limited understanding of PDoC the instant link to a ‘vegetative state’ is comparing a person to a ‘vegetable’ rather than relating to a ‘vegetative functions’. Which understandably sounds more dehumanising and more upsetting but than direct and likely more ‘relateable’ . But on the flip side UWS does more gentle but also can give more ‘hope’ and make it more difficult for families to understand or accept. A half way between the two would be more ideal but I’m sure that’s easier said than done.
Vegetative state sounds more harsh in my opinion, like there is no hope. where as UWS is less harsh sounding, however, opens up for misunderstanding
Although it may be the reality, vegetative state sounds less humane than UWS. However, I will not go for one over the other totally, I believe both can be used based on the case/situation at the moment as well as the feelings and thoughts of family members.
I also believe education levels of family members will play a role in which term they are more comfortable with.
I struggled with the term ‘vegetative state’ until I knew that it referred to a clinical description of functions – that helps a lot. I personally find ‘unresponsive wakefulness syndrome’ challenging to say and I could see it being abbreviated to UWS for speaking and writing, which then loses all meaning.
I remember reading the consultant’s notes from my husband’s best interest meeting and seeing “vegetative” used as a description for his condition. In my case I found it relieving to know that he was at this end of “unconscious” spectrum but even so it was very difficult to see this word being used to describe my previously vibrant and energetic husband.
When I first heard vegetative state, I wandered why this could be used to describe someone’s situation. I personally think it is too harsh and dehumanising. Preferably UWS sound more human than Vegetative state.
The term VS is more direct than UWS and in a sense implies that the person will not be able to gain consciousness and generally elicits feelings of denial and upsets relatives.
UWS somehow gives hope that the patient may regain consciousness at some point
Both terms can be confusing to the family. I think UWS is more human as opposite to ” vegetative state”.
In our country, the term vegetative state is used. I use “a person in a vegetative state” in my work. When I came across the term UWS in my dissertation research, by making a request among family members of people in a vegetative state, they thought the term UWS sounds milder, more hopeful, and curable.
In our country, the term vegetative state is used. I use “a person in a vegetative state” in my work. When I came across the term UWS in my dissertation research, by making a request among family members of people in a vegetative state, they thought the term UWS sounds milder, more hopeful, and curable.
This is really interesting. I was not aware of UWS and personally prefer it as it feels kinder and less rude but I can see that it is useful to have a term like VS which everyone understands.
As the daughter of a patient in vegetative state, I don’t feel like the term itself is derogatory (people do treat my father “as a vegetable”, but they’d do that regardless of how we call his condition). In my country pretty much nobody says “unresponsive wakefulness syndrome”, and I think most people wouldn’t understand the meaning.
interesting section
good differentiation
I think ‘Unresponsive Wakefulness Syndrome’ is difficult to understand and slightly confusing as people have said in terms of prognosis and how much awareness the person might have. On the other hand ‘vegetative state’ in the UK is used more often and so maybe more familiar but can feel like a devolution of person-hood from the person. I think I might prefer the term ‘vegetative state’ personally though as it seems more direct and if the function it links to is adequately explained and communicated, might be better overall.