Consent to coronavirus (COVID-19) vaccination

People with dementia are in the current priority groups to receive any new coronavirus vaccine. Deciding whether to have the vaccine or not is a choice for those who are offered it but some people with dementia will not be able to decide for themselves.

Why is vaccination so topical?

Early results from a number of different vaccine trials suggest they provide very high levels of protection against coronavirus and severe COVID-19.

If these vaccines are approved as safe and effective, some could be offered to people very soon. They could be available in the first months of 2021, or possibly even before the end of 2020.

The government produced interim guidance on who should be the first to be offered a new coronavirus vaccine. People living and working in care homes came top of the list, with people aged over 80 and other health and social care workers next. 

These groups include many people living with dementia, some of whom will have lost the ability to make certain decisions. This raises important legal and ethical issues for the person and those who care for them. The Mental Capacity Act 2005 (MCA) is a crucial law in these situations.

What if the person still has mental capacity to decide?

This is fairly straightforward. If a person with dementia is able to make the decision for themselves, they can choose whether to have the vaccine or not. They just need to give informed consent to do so – the same as for any medical procedure. That decision is theirs to make and must be respected, even if to others it seems unwise.

A health professional should explain how the vaccine works and how it can keep them well, together with any risks such as side-effects. Any discussion of the risks and benefits should be tailored to the person as much as possible, taking into account their age, gender, ethnicity and other health conditions. The professional must communicate with a person with dementia in the way that works best for the person and consider how quickly or reliably they are able to process the information.

When going over the risks, the health professional must explain the potential consequences of not having the vaccine clearly and simply. Even with a vaccine that is 90–95 per cent effective in reducing the risk of catching coronavirus and getting severe COVID-19, not everyone is protected. A person’s risk of COVID-19 will also depend on whether those around them have had the vaccine. 

If appropriate, these risks and benefits that go beyond the individual should be explained. For example, if the person is vaccinated that may help protect other residents in the care home, and so have a wider benefit. But there must be no coercion, if the person has made an informed decision to refuse.

What if the person with dementia no longer has mental capacity?

The Mental Capacity Act 2005 (MCA) says that we must always support decision-making. As well as giving people information in a way they can understand, this could mean communicating with them at their most alert time of day. The MCA also says that we must assume capacity unless we have reasonable doubt. If there is reason to doubt capacity, this needs to be assessed by an appropriate person, often their GP. 

If the person does not have mental capacity to make the decision themselves then a ‘best interests’ decision about vaccination will need to be made on their behalf, although they should still be involved as much as they can. If the person with dementia has appointed an attorney for health and welfare, the attorney should discuss things with professionals but it is ultimately the attorney’s decision.

Otherwise, the decision will be made by health professionals in consultation with those closest to the person and those who know them best. The best interests decision-making must focus on the individual person and include looking at the risks and benefits of them having or not having the vaccine.

Under the MCA, the best interests decision must also take into account the person’s past and present wishes and feelings. For example, have they held strong views against vaccines? Have they always been public-spirited, thinking about the well-being of others first?

There may be indirect benefits to the person from vaccination, such as the possible relaxation of rules about visitor contact. These might also be relevant when looking at the person’s best interests. 

The care home may have an interest in all its residents being vaccinated but it must not exert undue influence or seek to over-ride a best interests decision.

Where similar issues have arisen over consent to coronavirus testing, legal opinion in most cases has so far been that it is in the person’s best interests to have a test. Government guidance on testing for someone without mental capacity aligns with this. It seems likely that the same will apply to vaccination, but an individualised approach is still needed.

Where can I find out more about the benefits and risks of coronavirus vaccines?

Coronavirus vaccines have been developed a lot more quickly than normal. At present, results of trials are emerging every few weeks, sometimes more often. 

As with other aspects of coronavirus, there is a lot of misinformation being spread about COVID-19 vaccines. Be especially wary of sensational stories or claims made on social media. 

Further advice

You can get an independent general overview of progress with COVID-19 vaccines at websites such as Wellcome

The British Society for Immunology has a video on YouTube about COVID-19 vaccines.

For more specific advice about your situation speak to a health professional you trust, such as a GP. 

If you want to take part in a vaccine trial, visit the NHS coronavirus vaccine research page.

 

Last updated 20 November 2020.

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