Module 3: Language and Labels
3.3 The “Permanent” label
For reasons discussed in earlier units sometimes it is simply appropriate to refer to patients as being in a ‘Prolonged Disorder of Consciousness’, using this as an umbrella term. However, it is often important to do detailed assessments to refine diagnosis and prognosis, and sometimes it may be appropriate to apply labels such as ‘Permanent Vegetative State’.
Clinical guidelines in the UK from the Royal College of Physicians spell out when a vegetative or minimally conscious state can be called ‘permanent’. The term is applied when little or no change is expected in the patient’s level of consciousness. Factors to take into account include: the nature of the original injury, how long the patient has been in PDoC, any trajectory of change, and where they are on the vegetative/minimally conscious spectrum. Clinicians also need to rule out anything which may be artificially suppressing consciousness (such as sedative drugs).
If it is part of your job to determine whether or not a patient’s condition should be diagnosed as ‘permanent’ then obviously those are the guidelines to rely upon and a detailed assessment is required. It is important, however, that the whole team has some sense of the issues around defining the permanent vegetative (or permanent minimally conscious) state.
Diagnosis of ‘permanent’ – “too early” and “too late”
- Labelling a patient as being in a Permanent Vegetative State (“PVS”) too early, or without taking key factors into account, can lead to misdiagnosis and mean patients don’t get appropriate care.
- There is also the opposite problem – when a “permanent” diagnosis is given too late (or not at all) then families may be left living with false hope and the patient may receive treatment that is not in their best interests.
It may be tempting to try to reassure families by emphasising any behaviours that might indicate awareness. However, it is important to reflect on whether or not you have the right skill-set to be able to assess this – and recognise how this might actually mislead families and, in the end, lead to more distress for them (and potentially distort their input into decisions about their relative).
Similarly, it may be tempting to say things such as “Where there is life, there is hope”; “Never give up!” or “Only time will tell’ in an effort to be encouraging. Alternatively staff may share memories of another patient who made an unexpectedly good recovery. Such comments may be really appreciated by families at the time; but later they may feel that was unhelpful (or actively unkind) if the situation has not changed. Realism about the future is important to help families input into best interests decisions.
At the “Coma and Disorders of Consciousness Research Centre” we’ve been approached by families who’ve had relatives in vegetative states for a very long time (over three decades in one case), and no one made the diagnosis crystal clear to them and consulted them appropriately. They wished the clinical team had been explicit with them, and feel a PVS diagnosis would have been helpful.
For some families, the diagnosis of “Permanent VS” provides clarity, resolves doubt and means they feel able finally to let go. Others will resist the diagnosis because it is a devastating blow that removes all hope. For others, what matters is not whether the vegetative state is permanent or not but whether or not the person will ever recover to a quality of life that they would have considered worthwhile. For other families the fact that the person is still breathing is the focal point, their loved one’s physical presence, even without any consciousness, is of value to them (and some are clear that this would have been valued by the person themselves).
The term ‘permanent’ still has its place in discussion of PDoC, whatever the response from families. Try two quick quiz questions now.
Debates about the “permanent” label
There are some debates about whether or not ‘permanent’ is the right word to use to describe patient very unlikely to show significant changes. In the UK, the Royal College of Physicians (when producing their guidelines in 2020) kept the label ‘permanent’ because it is considered clear. Professional groups in other countries have taken a different position.
Have a look at guidelines below, from America, published in 2018. Note the reason given for abandoning the term ‘permanent’, and the extra information that should be given along with any label to help clarify expectations.
Guidelines from the US published in 2018 recommended that the prefix ‘permanent’ should be replaced by the prefix ‘chronic’ when referring to long-term vegetative states (or unresponsive wakefulness syndrome). The rationale was that this reflects the fact that a small minority of people with a ‘permanent’ diagnosis can continue to recover some degree of consciousness. The report concluded that the term ‘chronic’ was therefore preferable and should be:
“accompanied by a description of the current duration of the VS/UWS, as evidence supports a decreasing likelihood of recovery with longer duration of unresponsiveness.”
The guidelines also stress that:
Because most patients with late recovery of consciousness will remain fully or partially dependent upon others for activities of daily living, prognostic counselling should emphasize the need for long- term care and specify the type of supportive care required.”
(Giacino et al. 2018. Practice guideline update recommendations summary: Disorders of consciousness, Neurology, 91(10). pp. 450-460).
Optional Continuing Professional Development (Unit 3.3): Reflection on language and labels
If you want to think more about some of these issues click on the optional CPD exercise below – otherwise scroll past.
CLICK HERE for Optional CPD exercise: Language and labels
- The term ‘permanent’ is still commonly used and recommended in the UK. Write an analysis addressing the following questions: Why do you think professional guidance differs in different countries? What do you think are the benefits and costs of using the term ‘permanent’ versus ‘chronic?
- What are the pros and cons of the terms ‘VS’ versus ‘UWS’?
- What are the problems with the terminology ‘Minimally Conscious State’ and what is the problem with the spectrum covered by this term?
- Why do some people prefer to talk about PDoC than use the terms VS/UWS.
Congratulations. You’ve completed module 3.
14 Comments
Leave a reply
You must be logged in to post a comment.
Having learned from this module that some cases of PDOC deemed with a ‘permanent’ diagnosis can continue to recover some degree of consciousness, I certainly agree that the term ‘chronic’ would be more suitable.
I am pondering how it may be very easy miss labelling/diagnosing if there are not enough qualified and experienced persons on MDT to accurately assess patients in PDoC. And the fact that it can lead to inappropriate care and treatment.
I hadn’t known about the discussion of ‘permanent’ versus ‘chronic’.
I quite like chronic… I thought the discussion around hope in some of the previous modules was interesting. Whilst I feel strongly that as professionals we need to remain quite clinical and explicit in our approach, the immediacy of the word ‘permanents’ can make an already difficult situation even worse for families (I am mindful that actually so much of our care is directed toward families). I think ‘chronic’ is equally clinical and explicit, but somehow feels like its a better fit…
I find the significance of words fascinating and it makes me realise how important it must be in this situation to establish what is understood by a particular word when it is used. Seeing that the medical meaning for a word can have a different meaning outside the medical context; thinking of ‘vegetative’; then mix that in with the emotional responses to a situation, would make it inevitable for 2 people in the same conversation to have 2 completely different interpretations of that conversation. At a time where families must be desperate for information to help them understand what is going on for their loved one, how do you provide information that helps them feel informed. Especially if we are then talking about informed decision making. I can really see the need for an MDT approach.
MDT approach is the key to achieving better outcome and delivery holistic care that meet the needs of individual. Also, involving patient and family into their care will enlighten them on some of the basic medical terms used.
I like the term ‘chronic’ it sound patient will still get back to normal. Also, MDT approach is comprehensive assessment for a person centre care of individual.
As part of my dissertation, I conducted a survey among the relatives of people with prolonged disorders of consciousness, there are different opinions about the terms permanent and chronic. The majority believe that by using the term “permanent” recovery to a certain degree of consciousness is impossible, while with the term chronic it is possible to expect some hope of recovery.
It is helpful to have this clarity regarding terminology, but it is also important for the team working with people and their families to be consistent regarding the words they are using when talking to the family about their loved one. If there is a lack of consistency of message especially without evidence this can be very unhelpful.
it is very helpful in our clinical knowledge
Thanks for the presentation which help me to improve my practical knowledge
It enhanced my practical knowledge about vegetative patients.
informative
The word permanent does imply more heavily that there is no scope for recovery of consciousness and this may be helpful for some families in coming to terms with the diagnosis however it doesn’t acknowledge that there is always some uncertainty and that there may be a small percentage of people who may still regain some level of awareness. But I do think the word ‘chronic’ is not as well conceptualised by the general public and people also generally tend to hold on to hope that their relative will be in the small group of people who show some improvement when it seems that the reality is that most don’t and this may delay moving conversations forward about care and treatment. It would be interesting to know what the exact numbers are in order to guide how we frame trajectory/prognosis with families.
Thanks for these thoughts Hannah – and for everyone’s thoughtful reflections on this – the court hearings around such cases are really interesting for the way they unpack some of this complexity. If anyone would like to watch such as hearing live, then do have a look at the ‘Open Justice Court of Protection’ project which facilitates this.