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(Updated) Vaccination, consent, and capacity in a care setting: how to decide?
At last, approved vaccines are here and being rolled out first to vulnerable people in care homes and the staff who care for them. We need to be clear about how decisions must be made for each individual, about whether or not they should be given it. The new government forms for care home vaccination decisions are a great help with collecting and organising essential information.
What does someone need to know?
For any medical procedure, everyone needs enough information, simply presented, to decide whether to accept it or refuse. For deciding about having the vaccine, relevant information includes:
- The anticipated benefits of vaccination
These include, from a week after the second dose, reducing very greatly the likelihood of severe illness or death if exposed to COVID-19, and hence, opening up chances of mingling and mixing with relatives, friends, and the wider community.
- The likely side effects from vaccination and any individual risks they may run
As with other vaccines, possible side effects include fleeting pain from a jab with a needle and a day or two with a sore arm, headache or mild fever. And it’s also relevant that there will be two jabs, and you won’t be protected from the worst effects of COVID-19 until shortly after the second one. Vaccination won’t be a magic wand for those longed-for get-togethers.
We also know that the NHS has identified special risks to anyone who has suffered an anaphylactic shock in the past and individuals who this applies to need to seek health advice before having the jab.
- The downsides of refusing the vaccination
These include living with the existing risk of serious illness or death from COVID-19, and needing to take precautions, such as avoiding relatives and friends, for quite some time to come. Unvaccinated people are likely to be more restricted in access to some settings in the future, than people protected by the vaccine.
If someone has capacity and consents to – or refuses – the injection
Many residents in care homes have capacity to decide this for themselves and are very keen on the vaccine. Do make sure, though, that individuals do understand and that they do consent; it is up to them.
To help them decide, ask them to read (or read to them) the letter and consent form from the government, which records their decision whether to consent or refuse. If some people supported by adult social care clearly understand, remember and weigh the information about accepting or refusing the injection, and the clear risks of refusing it, but still refuse to have it, this is their right, just as it is for everyone else. Some people just are very dubious about vaccines.
If a person lacks capacity to consent or refuse
Start by doing all you can to ensure they understand the information about the jab. This is, after all, the heart of the Mental Capacity Act (MCA), that you don’t accept someone as lacking capacity for a decision unless you’ve done everything practical to help them gain the capacity for this. If the person definitely lacks capacity to make the decision about whether or not to have the jab, it becomes a best interests decision.
No blanket decisions
It may be that for all those people you support, who lack capacity, this vaccination is indeed in their best interests. It will keep them safe and enable gradual easing of restrictions on freedom and mingling. But it is essential to consider each individual separately. The vaccination forms from government are a great help here to collect the right information.
A quick swerve into the legal position
If the person has made an advance decision to refuse treatment (ADRT) that says they refuse consent, say, to all vaccines, ever, this is binding unless they have changed their mind with capacity, perhaps when we were hit by a pandemic. If the picture is confused – does it cover this situation? Did they change their mind? – get legal advice.
If there’s a relative or friend with powers under a health and welfare lasting power of attorney (LPA), they are likely to have the right to ‘stand in the person’s shoes’ and make this best interests decision for the person. If so, they are also likely to agree the vaccination is in the person’s best interests: the government has helped here by providing a form to record attorney's consent or refusal.
If there’s no LPA or advance decision, the person giving the injection in the absence of consent needs to be sure that they believe the person lacks capacity for this decision, and that what they are doing is in the best interests of the person. They can, of course, assess everyone for themselves, but it’s customary that they rely on a plan, outlining the capacity assessment and best interests decision.
Individual decision-making and recording
The role of ‘next of kin’ gives no rights to relatives or friends without LPA powers to make these decisions, but they know the person better than paid staff ever can, and love them more, so their insights into what the person would want are of massive importance. Again, the government has helped here, by providing a form to record relatives' views.
Of great interest is a recent court case, the first looking at vaccination of people lacking capacity where a relative is against them having it. The judge decided, firstly, that it was not difficult to assess this person’s capacity to make this specific decision: when the assessor asked her, this lady had no memory of hearing about COVID-19, or about vaccination being discussed.
He then decided that it was overwhelmingly in her best interests to have the jab, since she is such a high-risk category for serious illness or death from coronavirus. He highlighted that she had always accepted vaccines in the past, and also that, when asked whether she would like the jab, her reply ‘Whatever is best for me. What do I have to do?’ showed that her nature was to have real trust in the health service.
As here, it is often clear that the person always accepted vaccines, and would have accepted this one, if they had capacity. This makes it easy to say it’s in their best interests, because the option of vaccination is one that aligns so well with this person’s known values and wishes.
If it isn’t clearly the case, it may still be actually in the best interests of this individual, although they might have refused it with capacity. The value of dodging the COVID-19 bullet and regaining more normal access to relatives and the community is clear; for most people the side effects are insignificant, and they will accept the jab with equanimity.
This case did not look at what happens if someone needs restraining for the injection. For any care or treatment, restraint, if needed, must be a proportionate response. In the case of any restraint other than the mildest and most fleeting, record the decision-making carefully, consult widely, and if in doubt, take legal advice. This is particularly true if the person lacking capacity is showing passionate distress linked to the prospect of vaccination.
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