Managing your care in England and Wales if you haven't planned ahead
You may worry about who will make decisions about your care if you haven’t planned ahead and were to become seriously ill and unable to make decisions for yourself (because you have lost capacity to do so).
The ways people can plan ahead vary across the four nations of the UK (England, Scotland, Wales and Northern Ireland) and there are also some legal differences. The web pages in this section are about the ways people can plan ahead if they live in England and Wales. If you live in Scotland or Northern Ireland you should ask a healthcare or legal professional to give you information that’s relevant to that country.
Best interests decisions
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Usually your carers and family will be involved in making everyday decisions about your care. However, sometimes a decision may need to be made about your medical care or treatment. In this situation, a senior healthcare professional will make the decision based on their experience and understanding of your circumstances. They will discuss the decision with your family, friends and anyone else who might be involved in your care.
These decisions, whether they are made by your carers, family or a healthcare professional where you have lost capacity, are known as best interests decisions.
The Mental Capacity Act 2005 sets out several factors that should be considered when making a best interests decision. These include:
all the relevant circumstances
the person’s past and present wishes, their values and beliefs
the views of anyone caring for the person, such as a family member, friend or carer.
‘As a family we knew this was what he wanted and we all agreed to rally around to help Joyce cope with his care’
The Act states that a best interests decision should not be based on a person’s age, condition, appearance or any aspect of their behaviour.
It provides safeguards to ensure that those who make decisions make them in a way that requires them to consider all the relevant circumstances about your care. It also makes sure that the motives of the person making the decision are proper and in your best interests.
Decisions made by healthcare professionals
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If a best interests decision is made by a healthcare professional and is about life-sustaining treatment, they can’t - when considering whether treatment is in someone’s best interests - be motivated by a desire to bring about their death. They should look at the appropriate treatment options available to make sure that the best interests of a person are met.
While the views of family members and friends will be taken into consideration in any best interests decision, the final responsibility for the decision remains with the decision maker, usually a senior healthcare professional. Occasionally, this will mean that the views of family members are not followed. In this situation, the healthcare professional should explain the law regarding best interest decisions and the reason for the decision to the family.
Independent Mental Capacity Advocates
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In some situations, medical staff may need to appoint someone as an Independent Mental Capacity Advocate (IMCA) to act as your advocate and represent your interests if you can’t do so yourself. This will only happen if you don’t have a health and welfare attorney and have no family or friends able or willing to represent you.
IMCAs are usually appointed if a non-urgent decision needs to be made on your behalf that involves serious medical treatment, such as:
giving new treatment
stopping treatment that has already started
withholding treatment that could be offered.
‘I don’t think my dad could have had any better end to his life. Him being in his own surroundings was great.’
In this situation, the IMCA will consider how giving, stopping or withholding treatment will affect you and whether your life is likely to be made better or worse. For example, giving you a new treatment may cause side effects such as sickness or pain and may prolong your life by only a few weeks. The IMCA will work with your medical team to ensure that your civil, human and welfare rights are respected and all options are considered before a decision is made.
The Department of Health has more information about the Independent Mental Capacity Advocate (IMCA) service.