“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”

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.

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.

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 report 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.

Danielle Hamm, Director of Compassion in Dying said:

“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.

“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.

“One of the key failures in implementing the Mental Capacity Act was a lack of provision of information by local authorities. Compassion in Dying has recently received funding to roll out its advocacy project My Life, My Decision nationally after a successful pilot in East London. This project 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 look forward to this successful approach being implemented through the Care Bill in line with the recommendations of this report.”

***ENDS***

 

Notes to editors:

Mental Capacity Act Committee Report Executive Summary Extract
Lasting Powers of Attorney

53.  As with other aspects of the Mental Capacity Act, low levels of awareness have affected implementation of the provisions relating to Lasting Powers of Attorney. Awareness needs to be raised among the general public of the benefits of Lasting Powers of Attorney in order to encourage greater take-up, especially for Health and Welfare matters. We support the initiatives of the Public Guardian to improve take-up by simplifying the forms and reducing the cost of registration, as well as identifying other barriers to take-up. (paragraph  191)

54.  Recommendation 25: We recommend that the Government, working with the independent oversight body recommended in chapter 4, and the Office of the Public Guardian:

  • address the poor levels of understanding of LPAs among professional groups, especially in the health and social care sector, paying specific attention to the status of Lasting Powers of Attorney in decision-making; 
  • consider how best to ensure that information concerning registered Lasting Powers of Attorney can be shared between public bodies, and where appropriate with private sector bodies such as banks and utilities; 
  • issue guidance to local authorities that their new responsibilities for provision of information in relation to care contained in the Care Bill should include information on Lasting Powers of Attorney; 
  • consider how attorneys and deputies faced with non-compliance by public bodies or private companies can be supported in the absence of specific sanctions;
  • review the apparent anomalies in the current arrangements with regard to successive replacement attorneys, and the status in England of Scottish Powers of Attorney. (paragraph  192)

 

Advance decisions to refuse treatment (ADRTs)

55.  Advance decisions to refuse treatment are an essential means of allowing individuals to determine their care in the event that they lose capacity. As with other aspects of the Act, the general public cannot benefit from this opportunity if they are not made aware of it. Similarly, advance decisions that are not recorded and shared with relevant public bodies are likely to be ineffective. Poor understanding among health and care staff needs to be addressed in order to promote the benefits of advance decisions to patients, as well as to ensure that they are followed when valid and applicable. (paragraph  199)

56.  Recommendation 26: We recommend that the Government, working with the independent oversight body:

 

  • urgently address the low level of awareness among the general public of advance decisions to refuse treatment;
  • promote better understanding among health care staff of advance decisions, in order to ensure that they are followed when valid and applicable;
  • promote early engagement between health care staff and patients about advance decisions to ensure that such decisions can meet the test of being valid and applicable when the need arises;
  • promote the inclusion of advance decisions in electronic medical records to meet the need for better recording, storage and communication of such decisions. (paragraph  200)

 

Compassion in Dying
Compassion in Dying is a national charity (no. 1120203) that aims to support people at the end of life to have what they consider to be a good death by providing information and support around their rights and choices.  We are a leading provider of free Advance Decisions in the UK and we also conduct and review research around patient rights and choices in end-of-life care.  

Compassion in Dying was set up in 2007 by the campaigning organisation Dignity in Dying to take on the charitable aspects of its activities.  The two organisations now work in partnership.

While Compassion in Dying aims to increase people’s understanding of and empowerment around existing end-of-life rights through information, research and education, Dignity in Dying campaigns to extend and defend individuals’ rights at the end of life.

For more information on Compassion in Dying visit www.compassionindying.org.uk

The End-of-Life Rights Information Line
The End-of-Life Rights Information Line is available on freephone 0800 999 2434, or by emailing info@compassionindying.org.uk or writing to Information Line, Compassion in Dying, 181 Oxford Street, London W1D 2JT.  The phone-line is open between 11am and 3pm Monday to Friday. 

Advance Decisions
An Advance Decision is a document that allows individuals to set out their wishes and preferences for medical treatment in advance, in the event that they become unable to communicate with their health team (for example, if they fall into a coma or develop dementia).  Advance Decisions were given statutory force under the Mental Capacity Act, 2005 (in October 2007) meaning the refusal of treatment is legally binding.  The Compassion in Dying Advance Decision is fully compliant with the Mental Capacity Act.
Free Advance Decisions are available by calling the Information Line or to download from www.compassionindying.org.uk 

Lasting Powers of Attorney
A Lasting Power of Attorney is a legal document. It allows you to appoint someone that you trust as an ‘attorney’ to make decisions on your behalf.
There are two types of LPA: property and financial affairs and health and personal welfare.  A Lasting Power of Attorney cannot be used until it is registered with the Office of the Public Guardian.
Attorneys for health and personal welfare can make decisions for you when you lack the mental capacity to do so.