The Government has responded to a report published by the Mental Capacity Act Committee which found vulnerable adults were not being fully protected or empowered to make decisions for themselves. The response has acknowledged the importance of individual patient rights and involvement in decision-making.

The Government has rejected the implementation of an independent body to oversee the Mental Capacity Act (MCA) but is considering proposals for a new Mental Capacity Advisory Board. The importance of Advance Decisions to refuse treatment (ADRT) and the need to do more in raising awareness of these important patient tools, was re-emphasised by the Government’s response. The Government set out a vision that making a Lasting Powers of Attorney (LPA) becomes a ‘matter of course in life planning’ and this has resulted in a commitment to an electronic register for LPAs.

Sarah Wootton, Chief Executive of Compassion in Dying, said:

“We welcomed the recommendations when they were first reported and are pleased that the Government has taken these on board in their response. We look forward to the possible establishment of an independent Board which must allow for a strong representation of patient and public voices.

“The recommendations and subsequent response have consistently highlighted the importance of ADRTs and it is critical that healthcare professionals not only follow the recorded decision, but also take an active role in informing and supporting individuals during the process of making an ADRT. The Office of the Public Guardian has done some outstanding work in raising the awareness and uptake of LPAs, and this continues alongside a concerted effort to raise the public profile of ADRTs. Both tools should support eachother and work together, and ADRTs are incredibly important in situations where a patient may not be able to rely on someone else to give informed consent on their treatment.

“The electronic register of LPAs is a positive development for patients facing the end of life. This needs to be extended to ADRTs too, as we know from people who contact our information line that a common concern for those who record their wishes is whether these will be known by healthcare professionals. This is incredibly important in situations which may involve emergency teams, where there is only a minimal amount of time to ascertain a patient’s treatment wishes.

“The Government’s response comes at a critical time, when end-of-life rights are in the spotlight. In August, Compassion in Dying will start work on My Life, My Decision nationwide, after securing funding from the Big Lottery Fund. However it is not enough to simply inform people, there needs to be a clear and efficient structure in place to ensure the patient remains at the centre of decision-making in end-of-life care.”

***ENDS***

For more information please contact Jo Cartwright, Press and Campaigns Manager on 020 7479 7739/07725433025 or jo.cartwright@compassionindying.org.uk

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.