The second week of May is Dying Matters Awareness Week, which aims to place the importance of talking about dying, death, and bereavement firmly on the national agenda. With that in mind, we asked David Metz to tell us more about My Living Will, a new website that provides guidance and advice about the right to receive or refuse medical treatment in later life.
All of us will be faced with uncertainty when we approach the end of our lives. There will be decisions to be taken about the kind of care we want, and where we should be treated. The heath care professionals will seek to understand our wishes if we are able to participate in these decisions at the time. But it is possible that we may not have the capacity to think clearly.
To deal with that prospect, we can take advantage of the law (the Mental Capacity Act 2005). This act includes provision for making an Advance Decision to refuse medical treatments in circumstances where the individual does not have the capacity to make decisions about their healthcare.
Advance Decisions reflect 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. Advance Decisions were put on a statutory basis by the 2005 Act as legally binding on healthcare professionals.
In addition, the Act makes provisions for an Advance Statement that allows expression of wishes and preferences, beliefs and values, to help those in caring roles act in the best interests of the patient.
Yet awareness of the possibility of making Advance Decisions or Advance Statements is low amongst people generally. A YouGov poll in 2014 found that 82% of people would want to be in control of life-prolonging medical treatments should they lose mental capacity. However, only 4% had an Advance Decision or had appointed a Lasting Power of Attorney for Health and Welfare to ensure their medical treatment preferences would be respected.
Decisions on what to include in an Advance Decision 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, from which 800,000 people in Britain suffer, with some 200,000 new cases diagnosed each year. People in the early stages of dementia will generally have the capacity to prepare an Advance Decision.
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 less the chances of recovery, with the eventual possibility of being in a persistent vegetative state. An appropriate Advance Decision that anticipated such a possibility would allow for life-sustaining treatments to be withdrawn.
There are a number of common treatments that individuals might wish to refuse as dementia develops or if they are in coma with poor prospects of recovery. These include resuscitation, antibiotic treatment for life-threatening infections and artificial feeding.
Until recently, there was no comprehensive source of advice and guidance on both the medical and legal aspects of Advance Decisions. This has now been remedied by a new website, My Living Will.
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, as well as dementia, and also by senior lawyers. The website is operated on a not-for-profit basis by a charity. It is open to all as a source of information. A small charge is made for downloaded documents for signature, to cover the costs of maintaining and developing the website.
My Living Will is available to individuals who wish to make their own Advance Decisions to refuse treatment and Advance Statements of preferences and wishes. It is also of use to those who wish to assist them, including health care professionals involved with end of life care. 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.
An Advance Decision is legally binding on health care professionals. The Advance Statement is not binding but wishes and preferences would be taken into account by the professionals. The website offers suggestions in a number of categories, including personal care, place of care, and treatment of chronic illnesses. These suggestions can all be edited to meet individual needs.
Availability of the Last Power of Attorney (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 a LPA and an Advance Decision.
Decisions about end of life care are not easy. Most people put them off as long as they can, but then it may be too late to think clearly about the options. My Living Will helps people collect their thoughts in good time and then record their wishes.