Kingston-upon-Thames health and disabilities team.
This week's panel considers a case where a disabled person demands that his carers assist him in his heavy drinking.
Case study
Situation - Martin Burke (not his real name) is wheelchair-bound and unable physically to care for himself, although he manages to live alone. He has extensive home care support, including a live-in carer. He also has a personal assistant while he works at a voluntary disability agency. He drinks heavily.
Problem - Burke appears to his carers to be alcoholic - although this condition has not been formally diagnosed - and begins each day with a large glass of vodka and orange. He drinks steadily through the day (mainly strong canned lager) and in the evening prefers red wine and more vodka. He cannot buy or serve himself a drink and has to ask the carers to do it for him. Burke himself has said that he is so depressed with his life that drink makes it more bearable. He has also said that he is very aware that he is drinking himself to death and is now saying this is exactly what he wants to do.
The local authority, which employs Burke's home care assistants, is instructing its workers not to buy or give Burke any alcohol if he asks for it as it is clearly damaging his health. Burke disputes this - saying it is his right to choose what to do with his money. If he could buy the drink himself, he would. But as he can't, the authority is discriminating against his disability.
Panel responses
Samantha Robinson
Martin Burke obviously has a serious alcohol issue. The
difficulty is that he does not seem to have any desire to stop
drinking and therefore does not have any real insight into the
effects that it is having on his life. The alcohol dependency seems
to be his way of coping with his depression. I think it is
important to attempt to discuss the situation with Burke when he is
sober. This is the only way to gain an accurate assessment of his
true views and wishes. A way of attempting to tackle the situation
would be in the first instance to offer Burke counselling, in order
to assist him with the depression, explore the reasons why he is
drinking and to see whether he can acknowledge the effect that this
is having on his life. This may motivate him to reduce his alcohol
intake. The consumption of alcohol will ultimately worsen his
depression even further. As a consequence his alcohol intake will
probably increase over time.
A referral could be made to the community drug and alcohol team. They will not be able to assist Burke effectively until he acknowledges the effect that his alcohol dependency is having on his life and has a desire to stop drinking. Once he reaches this stage then inpatient detoxification could be an option, alongside long-term support or therapy, which is essential if Burke is going to abstain from alcohol in the future.
It may be pertinent to alert his GP about his current mental health needs and the potential deterioration in his physical health. The GP may then refer to the psychiatrist or arrange for an assessment of his general health needs, if appropriate. However, this would probably require Burke's permission.
The alcohol dependency must affect other aspects of Burke's life. For instance, is he making an informed choice to purchase alcohol, rather than paying his bills or buying food? If so, another option, which could be explored with him, is an appointeeship. This would assist Burke with managing his finances, ensuring his bills are paid and so on, restricting the amount of available income he has to purchase alcohol. However, the local authority would need Burke's permission to proceed with an appointeeship. Burke may not agree to this.
Ruth Sadler
While Burke is making an informed choice to continue
drinking, there is a need for clear guidelines to be adopted in
order to ensure that he is not compromising the position of all the
people who are caring for him and working with him. Burke is
correct to state that it is his right to choose what to do with his
money.
However, he does not have the right to expect the carers to assist him with drinking when this is potentially damaging to his health. This is not something that they have to or should be doing. Burke is effectively compromising their position and in such a set of circumstances it is reasonable to argue that the local authority would not be discriminating against him. There are other options available to Burke that could be explored, if he wanted to continue his drinking, which do not necessarily need to involve the carers.
For instance he could consider a home delivery shopping service - many large supermarkets now offer this service and it should be easy enough to set up. Also, Burke may well have other contacts, such as friends or an extended family network to draw on.
Health and safety issues become a potential concern if Burke is intoxicated, when the carers attempt to provide him with personal assistance. Clear guidelines need to be in place to ensure that the carers do not place themselves or Burke at risk when providing him with assistance. Care should not be provided if Burke is intoxicated.
This is a safeguard necessary to prevent accidents from occurring. The voluntary disability agency that Burke is employed at should also have similar guidelines in place. It is not acceptable for Burke to be working while he is intoxicated. This approach may or may not lead to a moderation in his drinking habits.
Is Burke's alcohol dependency affecting his relationship with the carers? Are the carers being supported? This is a very demanding situation for carers to cope with, particularly the live-in carer, who will be spending the majority of time with Burke. His current care package as well as the relationship with his carers could be explored, although he may resent this intrusion.
User view
Personal assistance at home should, ideally, be non-judgmental and solely directed by the client. In practice, it is always a process of negotiation between client and carer. All parties must have their dignity and sensibilities taken into account. What a dilemma. Burke feels that his home care assistants should be there to enable him to conduct his life as independently as possible; the local authority has a responsibility to make sure that the risks to his safety are minimised; the assistants are there to provide their client's "arms and legs" but should not be put into the invidious position of doing something that would clearly harm Burke.
In many ways, Burke is trying to put himself in the same position as Ms B, who went to court, demanding that she be allowed to die by getting her ventilator switched off. However, the situation isn't identical, in that his helpers have to be more active in contributing towards his death than the medical staff in Ms B's case. I can imagine that this would be tremendously distressing. As a side note, if Burke died as a result of his helpers supplying him drink, would they be entitled to sue the local authority for post-traumatic stress?
I can sympathise with Burke's point of view. I am a smoker: if my assistants refused to light my cigarettes, I wouldn't be able to smoke. We all realise that this is a dangerous habit, and might be the eventual cause of my death, but this is seen as an acceptable lifestyle choice. Burke might say that he is just speeding up this process. He has already connected his drinking to his current feelings about his disability. His implication is that, if he weren't disabled, then he wouldn't be drinking heavily, and maybe this is one of the keys to unlock this dilemma.
He is not and neither am I currently predisposed to alter our behaviour, and nobody changes their habits without some degree of motivation. Although he doesn't see a way out of his drinking at the moment, maybe Burke should be offered counselling for his feelings of depression, so that he can at least act on his perception of his disability and social situation. Perhaps he could be invited to look at the possibilities of changing either his situation or the way that he feels about it. Maybe then he can find some motivation to fight the fierce desire to drink so heavily, and then he can be offered the appropriate help.
Simon Heng is chairperson of Worcestershire Association of Service Users and is a wheelchair user.
