We welcome these recommendations as we know that although the majority of the public have strong opinions on their own end of life treatment, only 4% have made these wishes known in an Advance Decision or by appointing a Lasting Powers of Attorney.

Danielle Hamm, Director

Today the House of Lords Mental Capacity Act Committee published its report into the Mental Capacity Act, which has found that vulnerable adults are not being fully protected or empowered to make decisions for themselves. Crucially, the report calls for an independent body to be set up which would oversee and hold professionals accountable for the implementation of the Mental Capacity Act.

As well as their report the committee has also published a video [youtube=http://youtu.be/RiKD8BPQekc]

The report recommends raising awareness of Advance Decisions (AD), which allow a patient to set out their preferences for their own end of life care, including the refusal of life prolonging treatment, as a matter of urgency.  It also urges addressing the poor level of public understanding of the legal provision individuals have to appoint a trusted person to make decisions on their behalf, should they lose capacity, via a Lasting Powers of Attorney (LPA).  The report recommends that local authorities need to provide information on LPAs as part of their provision of information in relation to the Care Bill as it recognises the negative effect this lack of awareness has had.  My Life, My Decision aims to raise awareness in both these areas.

Awareness amongst care professionals and the general public on end of life rights is low, and this needs to be urgently addressed. The report states Advance Decisions are ‘an essential means of allowing individuals to determine their care in the event that they lose capacity’. Better understanding amongst health care staff of Advance Decisions and the need for early engagement with the patient on these matters was also recommended by the report.

Crucially, the House of Lords report also recommends that the lack of systematic recording of Advance Decisions and LPAs is addressed, so that health and care professionals can access this information when it matters.  This is something which has also been highlighted by our pilot in East London and by callers to our Information Line.

“Compassion in Dying was set up to facilitate the public to take up their legal rights to make an Advance Decision or appoint a Lasting Power of Attorney for health & welfare.  We speak to around 200 people a month, via our free information line, and provide advocacy support to many more. We are acutely aware of the peace of mind people gain from making provisions to ensure their wishes will be respected.  People commonly tell us they have wanted to make an Advance Decision for some time, but until they came across Compassion in Dying, haven’t known how to go about doing it.  We also hear several reports of professionals failing to engage with patients about their Advance Decision.

Danielle Hamm, Director

Our pilot in East London has been empowering people through local service providers, by informing residents on how they can take control of their care in the event that they lose capacity. We are looking forward to extending this successful approach nationally, and sharing our learning and experience with local government and health services.