Lawyers and healthcare professionals have created a pioneering tool to help people control end-of-life decisions.

Joshua was in the early stages of dementia. He still had capacity and recognised the course his dementia would relentlessly follow.

He created an advance decision (AD), stating which treatments he would want to refuse. He also stated at what point in the course of his dementia he wanted his AD to come into effect (when he did not recognise himself in a mirror, or no longer recognised immediate family members).

Although he had made a lasting power of attorney for health and welfare (LPA), Joshua went on to make an AD because his two grown-up children had expressed doubts about refusing treatment. His AD left no doubt as to his wishes about refusal of treatment. In the advance statement (AS), Joshua expressed his wishes and beliefs, his values and preferences, as well as his spiritual beliefs. He said he wanted his wife Melanie to be involved in all decisions about his care and named her his ‘key person’.

The Mental Capacity Act 2005 provides the legal framework for making decisions on behalf of individuals who lack capacity. It is a general principle of law and medical practice that people have the right to consent to or refuse treatment even if they lose capacity in the future, and even if this results in their death. This has been a principle of the common law which the act has refined in statute, allowing far greater clarity. The same rules apply whether the decisions are life-changing or result in death.

A valid and applicable AD to refuse treatment has the same force as a contemporaneous decision. Healthcare professionals must follow a valid AD, as long as it applies to the particular circumstances and specific treatment being considered. If they do not, they could face a charge of criminal assault. The act’s underlying philosophy is to ensure that any decision made on behalf of someone who lacks capacity is made in their ‘best interests’.

The act also introduces an AS of preferences and wishes in relation to ‘best interest’, although an AS is persuasive only, as against the legally enforceable AD. Decision-makers must consult with named individuals in the AD or AS. They may have legal powers of attorney, or be recognised as key persons.

A new tool has just been launched to help people control end-of-life decisions, especially where they have lost capacity. My Living Will (MLW) is an online tool that provides comprehensive information about an AD and AS. It enables an individual who has capacity to create a personalised, individualised AD to refuse treatment and an AS of preferences and wishes. If the person has not appointed an LPA, they are asked to name a ‘key person’ (following the example of ‘key worker’ in social services), who could be party to discussions and decisions about the person.

The act states that for an AD to be valid, the treatment must be specific as well as the circumstances in which this treatment is considered. In MLW, the different clinical circumstances when loss of capacity may arise are comprehensively covered. These include dementia, head injury or stroke resulting in coma or a diminished state of consciousness. Also covered are patients living with a terminal illness, including all forms of neurodegenerative conditions, cancer, heart or respiratory failure, as well as kidney and liver failure.

The individual is given the opportunity to state at what phase of the illness they wish the AD to come into effect. The specific treatments that can be considered for refusal for each of these conditions are dealt with, including the consequences of the refusal of each treatment. When the person chooses any specific treatment to refuse, they are shown the treatment and circumstances in which the treatment is being considered. To avoid confusion or contradiction, the wording cannot be changed.

MLW also offers guidelines and suggestions for what the AS might cover. These fall into various categories, including personal care, place of care and chronic illness. The wording of each suggestion can be altered or edited by the person. The AS puts the AD into the context of that individual’s life, by covering values such as religious beliefs. That is because, under certain circumstances, especially in the setting of intensive care, healthcare professionals may be reluctant to implement the AD without knowing the context of the person’s lifestyle, values and beliefs.

MLW advises the person to both consult and give signed copies of the AD and AS to their GP as well as family members.

The relationship between the AD and the LPA for health and welfare is complex and fully explained in MLW. If the AD is made before the LPA, then the AD is rendered null and void. However, if the LPA for health and welfare is created and registered first then the AD is valid. The advantages and disadvantages of both an AD and an LPA are explored and discussed. There are good reasons to create both.

The LPA gives attorneys the authority to make decisions about the person who has lost capacity. The AD spells out exactly which treatments the person would want to refuse, under which circumstances, and at what point in the illness. This becomes even more relevant when there is disagreement between family members as to what each member believes the ill person wants. The LPA must be registered with the Court of Protection to be valid, while the AD is valid once it has been signed and witnessed.

MLW has been created by a diverse group of senior healthcare professionals, senior lawyers and an ethicist. A senior member of the court has reviewed the website and is content that it conforms to the act both in detail and in spirit. MLW is hosted by the charity Centre for Innovation in Voluntary Action.

Those in the legal profession dealing with wills and family affairs would find it useful to alert clients to MLW, and to support clients in creating an AD, AS and establishing attorneys for end-of-life control.

Dr Isky Gordon is emeritus professor imaging at University College London, Institute of Child Health; Godfrey Cole was a legal academic and has held various legal appointments. He has contributed to this article in a personal capacity