Prolonged disorders of consciousness

This information has been primarily written for the families and loved ones of people in a prolonged disorder of consciousness state. We understand that this is likely a very difficult time. You will probably have many questions and concerns that the medical team are unfortunately unable to address right now. You might also be dealing with a significant change in your circumstances and many difficult emotions. 

With so much on your mind, it might be difficult to take information in, especially where this might seem confusing or very technical. We encourage you to take your time with working through this information, focusing on the sections most relevant to your personal circumstances. The contents section below should be able to help with this.

What are prolonged disorders of consciousness?

Prolonged disorders of consciousness (PDOCs) are states of reduced consciousness that can affect people following serious brain injury. They are distinct from a coma, which is a complete loss of consciousness lasting over 6 hours. However, many people who are initially in a coma progress to a PDOC state.

The two types of PDOCs are vegetative state and minimally conscious state.

• A vegetative state (VS) is a state in which a person has periods of time where they are awake, and periods of time when they are asleep. A person in VS has no awareness of themselves or their surroundings.

• A minimally conscious state (MCS) is a state in which a person also has periods of time when they are awake and periods of time when they are asleep. However, a person in MCS is sometimes aware of themselves and their surroundings.

The following sections explain these states in further detail.

Vegetative state

A vegetative state (VS) is a state in which a person:

• is awake but unaware - this means that they will look like they are awake as their eyes will sometimes be open, but they will be unaware of their surroundings or themselves;

• is able to reflexively react to stimuli (such as light or sound), for instance turning their eyes towards a loud sound;

• may have some spontaneous behaviour, such as moving their arms or legs, making grunting or groaning sounds, or grinding their teeth.

Unfortunately, none of these behaviours are done with conscious intent. Therefore, while it is often tempting for family to think that someone displaying these behaviours is reacting to something they have said or done, in VS this is sadly not the case.

Even if a person in VS smiles, sheds tears, changes their facial expression or moves their eyes around after a family member has said or done something, this is probably a coincidence at this stage. However, if this happens frequently, or the behaviour appears to be intentionally oriented to the surroundings (such as attempting to reach out for an object after someone has named the object), it might be helpful to mention this to the clinical and nursing team. You can also discuss the option of recording your interactions with your loved one, and reviewing the recordings with the clinical team.

Some people find the term ‘vegetative’ upsetting and offensive, but the term ‘vegetative’ is nothing to do with ‘vegetable’, and instead originates from the clinical features of this state.

Classifications

A person who remains in a VS for over 4 weeks can be classified as having ‘continuing VS’. If the person remains in a VS for over 1 year following traumatic brain injury, or over 3 months following an anoxic or other metabolic brain injury, they can be classified as having ‘chronic VS’.

The features and classifications of VS can be complex and difficult to distinguish. They are only included in this publication for awareness and to offer familiarity with some of the terms you may hear being used by the clinical team involved in your loved one’s care.

You should not attempt to diagnose or classify your loved one’s condition yourself, as only highly specialised clinicians are able to do this. However, if there is a term being used that you do not understand or feel you need more information on, don’t hesitate to ask nursing or clinical staff to explain this to you.

Minimally conscious state

A minimally conscious state (MCS) is a state in which a person:

• has severely altered consciousness;

• can interact with their surroundings to some degree;

• has periods of behaving in a way that shows minimal but clear awareness of their environment or themselves.

The behaviours showing awareness and interaction are not, however, done in a consistent way.

Classifications

There may be periods where the person in an MCS is able to interact with their environment and others, which can include communicating with family and problem-solving. This is classified as ‘MCS-plus’.

People who can show skills such as purposefully tracking movements or sounds, but are not able to interact further with their environment, are classified as ‘MCS-minus’.

These classifications are used to distinguish between the level of MCS someone may be in.

A person who remains in an MCS (either ‘plus’ or ‘minus’) for over 4 weeks can be classified as having ‘continuing MCS’.

If a person remains in MCS-minus for more than 1 year following traumatic brain injury, or more than 3 months following anoxic or other metabolic brain injury, they can be classified as having ‘chronic MCS-minus’. If a person remains in MCS-plus for more than 18 months following traumatic brain injury, or more than 9 months following anoxic or other metabolic brain injury, they can be classified as having ‘chronic MCS-plus’.

The features and classifications of MCS can be complex and difficult to distinguish. They are only included in this information for awareness and to offer familiarity with some of the terms you may hear being used by the clinical team involved in your loved one’s care.

You should not attempt to diagnose or classify your loved one’s condition yourself, as only highly specialised clinicians are able to do this. However, if there is a term being used that you do not understand or feel you need more information on, don’t hesitate to ask nursing or clinical staff to explain this to you.

Treating prolonged disorders of consciousness

Your loved one will initially be treated in a hospital intensive care unit.

They might need help from a machine to breathe, and artificial nutrition and hydration to be given through tubes. They might also have a catheter inserted to drain their bladder. There might therefore be lots of machines and monitors attached to them. These can make a lot of noise and frequently sound alarms, but this is usually nothing to be concerned about and is quite normal. Nurses will always be close by if anything is needed.

Your loved one will also be regularly re-positioned to prevent pressure ulcers from developing, and their joints will be gently exercised to prevent tightening. Their mouth and skin will also be cleaned.

Clinicians will monitor your loved one’s condition and check for any changes to their level of consciousness using clinical tools and observations of behaviours. They will be assessed regularly to check for any changes.

Any decisions regarding your loved one’s treatment will be made in their best interests. This means that while family and loved one’s input may be considered, they do not have the legal authority to make decisions about treatment on their loved one’s behalf, unless there is a pre-arranged, valid and registered Lasting Power of Attorney in place. In all cases, decisions regarding treatment and care should be situation-specific and made in the person’s best interests.

Information about what your loved one themselves would prefer may already be available, for instance if they have already made an Advance Decision to Refuse Treatment, sometimes called a Living Will, before their injury.

Being involved in your loved one’s care

It is natural for people to want to be involved in their loved one’s care, as this can allow them to feel more connected and helpful.

You could ask nursing staff if there are ways for you to help with basic nursing tasks, such as wiping your loved one’s face or brushing their hair. You should also be involved in discussions about their treatment, as families can often offer helpful information regarding the patient’s wishes and preferences.

Some people feel that presenting their loved one with familiar stimuli might help them to emerge from a prolonged disorder of consciousness (PDOC) - for example, playing music that they enjoy, reading to them from their favourite books, talking to them about daily life events, showing them personal photographs or placing familiar objects in their hands.

Unfortunately, there is limited evidence for the effectiveness of these activities, but you can still ask nursing staff about this if you think it will be a helpful way for you to get involved.

These activities might be helpful if your loved one is in a state where they are able to respond to or enjoy the stimuli you present them with. However, remember not to introduce too many of these activities to your loved one, and not to do these too often, as they will need periods of rest and may become overwhelmed if overstimulated. Occupational therapists will already be making sure that the environment is appropriately set up for your loved one’s needs. You should therefore only introduce these activities under clinical guidance.

Looking after yourself

Your top priority at this stage is likely to be the welfare of your loved one, and it is natural to want to spend most of your time at their bedside. You might be especially keen to be beside your loved one if they begin to regain some level of consciousness. However, it is important to focus on making an effort to look after yourself through this difficult time too.

Here are some things that you can do to look after yourself during this time:

• Take regular breaks from your loved one’s bedside. You do not have to be beside them all of the time, and will be able to cope much better if you take frequent breaks. If you want to stay on site to be close by, most hospitals have quiet rooms that you can use. It might be possible to arrange for a rota of family members visiting, but try not to include too many people visiting at once, as this may become overstimulating for your loved one.

• Accept as much help as you can get from family and friends, for example accepting offers for cooking meals, cleaning the house or picking children up from school. Remember that accepting help is a sign of strength, not weakness, and your loved ones will be keen to help however they can.

• Keep your employer informed of the situation. Your employer may be able to grant you time off or change your workload so that it is more manageable for you.

• Remember to eat a healthy, balanced diet during this time, and if possible, try to take some time to do activities that you enjoy or can help you to relax. Try not to feel guilty about this, as it is important for you to look after your wellbeing through this difficult time.

• If you jointly pay bills with your loved one and are struggling to meet payments, talk things through with your bank or service provider. It may be possible to reschedule any payments and budget for your new circumstances.

• Talk to others about how you are feeling. This can be with family, close friends, or other families in the unit if they seem comfortable with talking. Do consider, however, that everyone’s situation is different, and some families may not want to talk about their circumstances. You can also contact our nurse-led helpline for information or emotional support, or use our online communities to connect with others in similar situations.

Looking after children

Families with children may have unique challenges to face in terms of considering how much information to share, whether to bring them along for hospital visits, how to approach difficult conversations and what to do to best support the child through this time.

How much you choose to share and involve children will depend on the child’s age and their level of understanding. It usually helps to tell children of any age, even very young ages, something of what’s going on as children are very sensitive to changes and will worry if they notice that something is different but do not know why.

You will know your child best, so will be best placed to assess what and how to tell them about the circumstances. However, some general considerations are given on Children.

Emerging from prolonged disorders of consciousness

Clinicians will be regularly monitoring your loved one for any changes to their condition. However, it is unfortunately impossible to tell if and when someone will emerge from a prolonged disorder of consciousness (PDOC). This unpredictability can be one of the hardest things for family and loved ones to accept.

Patients that are initially in a coma may progress from the coma to VS or MCS.

Over time, people in a VS might begin to show signs of limited awareness, enabling them to be reclassified by clinicians as being in an MCS.

People in an MCS may further progress to regaining consciousness. This is demonstrated by their being able to communicate (either through writing, using ‘yes’/’no’ signals or using communication devices) and appropriately use at least two different objects.

In cases where people emerge from PDOC to eventually regain full consciousness, there may still be significant disabilities requiring input from rehabilitation teams. However, with the right input, even after emerging from a PDOC, people can and often do go onto recovering from brain injury and living fulfilling lives.

Permanent prolonged disorders of consciousness

It is important to state that in some cases, a person may be classified as being in a ‘permanent’ prolonged disorder of consciousness (PDOC) state. This classification is given when the person has remained in a chronic state of VS or MCS with no change for 6 months. In this case, they are likely to have severe, permanently disability if and when they emerge.

This classification may also be given if the possibility of the person regaining consciousness in future is highly improbable, for instance if they have sustained a very serious injury.

In these cases, it might be necessary to think about long-term care for the person and next steps.

This can be a very difficult thing for families to think about, but it is important to be aware of all possible outcomes. The team involved in your loved one’s care should sensitively and thoughtfully discuss next steps with you. Any decisions relating to your loved one’s care should always be made in their best interests. Further information on these matters is available in the sections below. 

The information on this page was produced with expert support from the following members of the Prolonged Disorders of Consciousness Psychology Specialist Interest Group for their assistance with the development of this publication: Dr Hannah Gallivan, Senior Clinical Neuropsychologist, The National Rehabilitation Hospital, Dublin; Dr Jane McLachlan, Specialist Clinical Psychologist, The Walton Centre; Dr Tamsin Miles, The Llandough Centre for specialist Spinal and Neurological Rehabilitation, Cardiff; Dr Patrick McKnight, Consultant Clinical Neuropsychologist, Northwick Park; Di Sian Hocking, Principal Practitioner Psychologist, PDOC Specialist Service, Cardiff; Dr Ashleigh Wood, Senior Clinical Psychologist, Leicester; Georgina Jones, AHP Lead PDOC Specialist Service and Dr Alistair Teager, Consultant Clinical Neuropsychologist, Manchester Centre for Clinical Neurosciences.

This information was last reviewed in 2024.