Empowerment Matters provides specialist independent advocacy for those in PDOC. Jakki has worked extensively as an advocate in this area and been involved in many of the Court of Protection cases where decisions have been made about life sustaining treatment for patients in this situation. Jakki was also on the RCP national clinical guidelines working group and is currently the only practicing mental capacity advocate that specialises in this area.
*New* Interim guidance on withdrawal of clinically assisted nutrition & hydration (CANH) in PDOC available here: CANH Interim Guidance
What is a Prolonged Disorder of Consciousness?
Coma (Absent wakefulness and absent awareness)
A state of unrousable unresponsiveness, lasting more than 6 hours in which a person:
cannot be awakened
Vegetative state (VS) (Wakefulness with absent awareness)
A state of wakefulness without awareness in which there is preserved capacity for spontaneous or stimulus-induced arousal, evidenced by sleep–wake cycles and a range of reflexive and spontaneous behaviours.
VS is characterised by complete absence of behavioural evidence for self- or environmental awareness.
Minimally conscious state (MCS) (Wakefulness with minimal awareness)
A state of severely altered consciousness in which minimal but clearly discernible behavioural evidence of self- or environmental awareness is demonstrated.5
MCS is characterised by inconsistent, but reproducible, responses above the level of spontaneous or reflexive behaviour, which indicate some degree of interaction with their surroundings.
|Source: Royal College of Physicians National Clinical Guidelines|
PDOC: The term used when above persists for more than 4 weeks following sudden onset profound acquired brain injury.
How do I appoint an advocate?
If the person is ‘unbefriended’ i.e. no family or friends who are willing or able to be consulted with, which may include families who feel they cannot represent their loved ones wishes then it is likely the person will be entitled to an Independent Mental Capacity Advocate (IMCA) and therefore funded by the local authority. Details of local services are easily available online.
However for most people in PDOC they will have friends and family and therefore the person will not fit the criteria for an IMCA. Th most common route of instruction is where P has a property and affairs court appointed deputy who can make a best interests decision to appoint an advocate and use Ps funds to do this. For some PDOC patients a deputy may not yet have been appointed, for example because there is an ongoing personal injury claim but advocacy can be considered as part of the claim and funded that way. Alternatively family members can make a choice to fund the advocacy role themselves or seek advice from the local authority / CCG or Trust if there is a need identified that independent advocacy will benefit P. For further information please get in touch.
The role of an advocate in PDOC
Advocates normally help people to express their views and wishes, secure their rights, access information and to be involved in decisions that are being made. Someone in PVS or MCS is often unable to be supported to express their views, but advocacy still has a crucial role to play and this may include:
- Helping to collect and represent the person’s prior expressed values and beliefs
- Ascertaining proposed courses of action
- Gathering the views of professionals and paid workers providing care or treatment and of anybody else who can give information about the wishes and feelings, beliefs or values of the person
- Accessing any other information they think will be necessary
- Considering whether getting another medical opinion would help the person who lacks capacity.
- Ensuring that the person’s rights are upheld.
The advocate then prepares a report, which would be taken into consideration in the determination of the person’s best interests.
The research at the Coma and Disorders of Consciousness Centre (CDOC) has shown that:
- Patients in permanent vegetative and minimally conscious states are ‘lost’ in the system – there is no register of such patients, they are dispersed into long term care homes with little specialist expertise about the diagnosis/prognosis/law.
- Patients are hidden by a ‘wall of inertia’ – with no one sure who is/should be taking decisions or even a (false) sense that no decision needs to be made (unless something changes, such as a feeding tube becoming dislodged).
- Families feel abandoned and left ‘in limbo’, staff suffer ‘moral distress’ and patients ‘best interests’ are not being addressed e.g. patients are having on-going artificial nutrition and hydration (because withdrawal needs a complicated court application) – but are not being given antibiotics – so they have repeated bouts of untreated pneumonia over several years in an effort to ‘allow death’ without having to go to court.
- Applications to court (in the small minority of cases where they are made) are experienced as hard to understand, intimidating and slow (with a knock on effect on others considering such applications).