My Adult Still My Child Website

Alison Cooke, Director of Care Rainbows Hospice

Why?

Best Interests Decisions• Under the MCA, where a person lacks capacity to make

a decision, that decision must be made in their best interests.

• A best interests decision must be made in the least restrictive way possible.

Who can make a best interests decision?• This will depend on the decision:

• Day to day decisions about care or activities of daily life, decisions can be made by the person’s main carer.

• In the case of many young people with palliative care conditions, this will often

be the parent(s) who may have already cared for the young adult all their lives.

• But from the age of 16, decision-making is governed by the MCA, and is no longer a right under parental responsibility.

Who can make a best interests decision?

• For decisions about serious medical treatment, the law says that the decision maker should be the person responsible for delivering the treatment – eg the lead doctor.

• This can be very distressing for parents who have made such decisions throughout their child’s life and are then then told that they can no longer be the sole decision makers when their child reaches the age of 16 and needs serious medical treatment.

Collaborative decision making• The best interests decision maker must be as fully informed as possible about the

person’s wishes, values and beliefs, and what they would want for themselves.

• “Best interests” decision making should always be collaborative: regardless of who is the best interests decision maker, the MCA places an obligation to consult others about decisions.

• For serious decisions there should be one or more meeting of professionals and others, such as the family, friends and others who are engaged in caring for the patient or interested in their welfare.

Deputies

• If a person loses, or never had capacity to make a decision, it is not possible to make an Advance Decision to Refuse Treatment or appoint a LPA.

• In such cases, the Court of Protection has power to appoint a “Deputy” as a best interests decision maker.

• Deputies are limited by the requirements of the MCA - decisions must be taken collaboratively and any serious dispute must be referred to Court.

• It is relatively unusual for the Court to appoint a Deputy for health and welfare decisions, including serious medical treatment, although this is becoming more common for young people with long term learning disabilities as part of their palliative care condition.