Authors:David Metz and Michael Daly
Created:2016-05-01
Last updated:2023-09-18
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Making living wills accessible to all
David Metz and Michael Daly provide an overview of advance decisions and statements, and look at My Living Will, a new website that aims to provide assistance regarding end-of-life choices.
A 2014 YouGov poll found that only four per cent of respondents had an advance decision or had appointed a lasting power of attorney for health and welfare.
The Mental Capacity Act (MCA) 2005 provides a framework for making decisions on behalf of individuals who lack capacity. This includes provision for making an advance decision (AD) to refuse medical treatment in circumstances where the individual does not have the capacity to participate in decisions about his or her healthcare at the time.
It is a general principle of law and medical practice that people have the right to consent to or refuse medical treatment, even if they lose capacity in the future, and even if this results in their death. ADs were put on a statutory basis by the MCA 2005 as legally binding on healthcare professionals, who could face a charge of criminal assault if they fail to follow a valid AD. In addition, the Act makes provisions for an advance statement (AS) that allows expression of wishes and preferences, beliefs and values, to help those in caring roles act in the best interests of the patient.
There was no official information or awareness-raising campaign following the commencement of these provisions of the MCA 2005. It is not surprising, therefore, that awareness is low among people generally. A YouGov poll, commissioned in 2014 by Compassion in Dying, found that only four per cent of respondents had an AD or had appointed a lasting power of attorney (LPA) for health and welfare to ensure their medical treatment preferences could be respected.
What an advance decision might include
Decisions on what to include in an AD require some understanding of the medical conditions to which they might apply and of the consequences of refusing treatments. A common condition in later life is dementia, with some 200,000 new cases diagnosed each year.
1Martin Knapp and Martin Prince, Dementia UK: the full report, Alzheimer’s Society, 2007. People in the early stages of dementia will generally have the capacity to prepare an AD.
Another, less common, situation is coma arising from stroke or head injury. Here the prospects of recovery may be unclear initially. Generally, the longer the duration of coma, the lower the chance of recovery, with the eventual possibility of a persistent vegetative state. An appropriate AD that anticipated such a possibility would allow for life-sustaining treatments to be withdrawn.
A new source of information
Until recently, there was no comprehensive source of advice and guidance on both the medical and legal aspects of ADs. This has now been remedied by My Living Will (
www.mylivingwill.org.uk). This website has been developed by academics at University College London with an interest in end-of-life issues, aided pro bono by senior healthcare professionals expert in palliative and intensive care, and dementia, and also by senior lawyers. It operates on a not-for-profit basis and is hosted by a charity, the Centre for Innovation in Voluntary Action.
My Living Will is available to individuals who wish to make their own ADs and ASs, but may also be of use to those advising clients on wills and family affairs. The website allows structured exploration of the range of possible choices in relation to particular clinical conditions. Selected choices are compiled into a personalised document that can be downloaded, signed and witnessed. It is open to all as a source of information. A small charge of £10 is made for downloaded documents for signature, to cover maintenance and development costs.
The MCA 2005 states that for an AD to be valid, the treatment referred to must be specific, as well as the circumstances in which this treatment is being considered. Accordingly, the website offers decisions to refuse treatment that are specified in terms compliant with the legislation and that cannot be edited. This is intended to minimise uncertainty in a legally binding document. A senior member of the Court of Protection has reviewed the website and is content that it conforms to the Act both in detail and spirit.
In contrast to an AD, though, an AS is not legally binding. Accordingly, individuals are able to choose their own words to express their wishes and preferences. My Living Will offers suggestions in a number of categories, including personal care, place of care, and treatment of chronic illnesses. However, these suggestions can all be edited to meet individual needs. ■
Lasting powers of attorney and advance decisions
Availability of the LPA for health and welfare is generally well known, with good advice on the GOV.UK website. My Living Will explains the complex relationship between LPAs and ADs. The LPA can be used instead of an AD, in which case the attorney will act on behalf of the patient lacking capacity. If both an LPA and an AD exist, the last to be made will be the binding instrument. The website allows the person who prepares an AD to name an individual who is not the attorney as a ‘key person’ to be consulted when there are discussions and possible decisions to be made in the best interests of that person.