The final episode of The Split series aired on BBC1 earlier this month and addressed the difficult issue of terminal illness and advance care planning. One of the characters, Lenny, who is suffering from motor neurone disease, is advised by her divorce lawyer to put an Advance Decision (also known as a 'Living Will') in place and is introduced to a private client solicitor who can prepare this.
What is an Advance Decision?
An Advance Decision is an important document which enables an individual to refuse, in advance, specified medical treatment in specified circumstances in the event that they may lack mental capacity to refuse that treatment when needed in the future. It is a way of making sure that your health care professionals and family know how far you want treatment to go when you cannot make decisions for yourself (for example, if you were to suffer from severe dementia or be in a coma).
An Advance Decision can be used to refuse any form of treatment (beyond basic care), be it that which may cause discomfort or distress and/or that which would be life-sustaining, for example resuscitation, artificial nutrition and hydration or artificial breathing.
Advance Decisions can become invalid in certain situations; legal advice is therefore paramount to ensure that the circumstances when this can occur are understood and the Advance Decision can be suitably drafted. Discussions with healthcare professionals and, where relevant, those with experience of the progression of certain diseases, such as support organisations, should also be had so that the availability of potential treatments can be factored into the drafting of the Advance Decision.
Advance Decisions vs Lasting Powers of Attorney
An Advance Decision is one of the options available to those who wish to put in place a plan for their health and care decisions to be managed in the event of their incapacity. Another option that can be considered is a Health & Care Lasting Power of Attorney (LPA), giving someone else (the "attorney") the power to make decisions about your health and care, including life sustaining treatment, on your behalf should you become unable to make such decisions yourself.
For many, an LPA is a more flexible option to that of an Advance Decision as it avoids the risks that an Advance Decision carries in it becoming invalid if circumstances change or the precise treatment needed, or condition arising, is not specified. An LPA allows the attorney to take into account changing circumstances applying at the time (including, for example, developments in medicine and treatments available to assist) when deciding to refuse life sustaining treatment or not, in line with what the attorney believes to be in your best interests. Any attorney appointed would of course need to be someone you trust implicitly and should be made aware of your wishes over life sustaining treatment as well as your health and care generally.
Conversely, for some, an Advance Decision is preferred as it can provide more certainty, assuming it remains valid and applicable at the time, if there is concern that an attorney may decide to not refuse certain treatment you have indicated if they view it not to be in your best interests at the time.
LPAs must be registered with the Office of the Public Guardian. Advance Decisions do not have a similar central register; this can lead to uncertainty over whether an Advance Decision exists. Anyone making an Advance Decision should therefore provide their GP with a copy of it and make their family aware that one exists to ensure that it is not overlooked if and when it is needed. Carrying a card or bracelet on your person to confirm that an Advance Decision exists is recommended.
A combination of having a Health & Care LPA in place alongside an Advance Decision can also be considered but care must be taken to ensure one does not inadvertently revoke the other.
It is important that professional advice is sought at the earliest opportunity on the options available and what is most appropriate in the circumstances.
Assisted dying
It is also important to note that an Advance Decision cannot be used to request assisted suicide, euthanasia or any other intervention with the express aim of ending life. Such interventions remain illegal in the UK.
The long standing debate over whether current laws on assisted dying should be reformed, however continues, as was highlighted by the Assisted Dying Bill presented to the House of Lords last year. Broadly, the Bill calls for the Court to be able to authorise terminally ill patients being provided with specified assistance in order to end their life, should they so wish, during the expected final six months of their life.
Whilst the proposal might not become law, as a minority of Private Members' bills do so, it nonetheless brings into the spotlight the sensitive debate over how to achieve a person's right to die with dignity whilst preserving patient safeguards. With more countries legalising assisted dying in recent years, this is a debate that is not going to quieten down any time soon.
Amidst this, it is useful to have shows like The Split to highlight what is in fact possible under current laws to retain a level of control over what happens to us at the end of life, should we become unable to communicate our wishes in the future. It can still be viewed on BBCi player for those who missed it!