A living will or advanced decision in the UK and Wales (Advanced Directive in Scotland), otherwise called an Advanced Care Plan is a non-legal document which stipulates, for example, whether you want to be resuscitated, or should you become seriously ill, what life-prolonging treatment you might wish for, or who you would like to be informed.
It must be signed and dated whilst you are mentally capable. Hospices and care homes usually instigate an Advanced Care Plan when a patient or resident is first admitted. Or you can download your own living will, which you could give to potential carers. If so, it is advisable to give a copy to your GP or your solicitor, as well as to any next-of-kin who need to know your wishes.
Liverpool Care Pathway for End-of-Life Care is used within the NHS and most hospices. Many dying patients are placed on the Liverpool Care Pathway, or the equivalent, by medical staff in the last few weeks or days of life to ensure the delivery of appropriate physical, psychological and spiritual end-of-life care.
Important lessons learnt about living wills
Living in the same location as two octogenarian couples is a salutary experience. One couple, Brian and Enid, are fully engaged with the reality that time is running out. The other couple, not.
Let’s start with Brian and Enid (all names have been changed).
Before I go on, it’s important to make clear the difference between a living will (what’s called an advanced directive is generally used in Scotland), or advance decision as it is more commonly referred to in England and Wales, and a will:
- A living will, or advance decision, is a document that stipulates what kind of end-of-life care treatment you wish to receive, especially when you are unable to respond to doctors. For example, whether you would like to be resuscitated, or, should you become seriously ill, if you want to receive life-prolonging treatments, such as antibiotics, or even food and drink.
- A will is a legally-binding statement, often signed by executors of your estate, or trustees, or legal representatives such as solicitors, which enables you to bequeath, upon your death, personal property and financial settlements to those you have named in it. You may also wish to write down what you wish your funeral and burial arrangements to be.
Returning Brian and Enid, Enid has been diagnosed with dementia, and is horrified to think that her life may be extended unnecessarily if she is unable to make end-of-life care decisions for herself.
‘Why on earth would I want my life extended, especially if I’ve lost the plot?’ she asked. ‘I’ve had a good life, done lots of the things, and when it’s time to go, it’s time to go.’
Brian is still bursting with vitality, but very aware that it won’t be long before his health also begins to decline. ‘We’re decided to do this now’ they said in unison, seating themselves on either side of me, ‘so there’s no misunderstanding between our children.’
‘Don’t want any falling out around the deathbed,’ said Enid, pragmatically, and then raising her eyebrows at me. ‘You know what families can be like.’
They handed me the advance decision their son (great to get adult children involved at this stage) had downloaded from the Alzheimer’s website. It is an excellent document, giving clear instructions of what you might wish to happen for your end of life care.
It also provides an opportunity to add your own personal requests to the types of medical intervention you would find unacceptable (for example, both Brian and Enid state they do not want to be hydrated just to extend their life unnecessarily, but are happy to receive drugs for pain relief).
Before the signature line, there’s a statement saying you have the right to revoke your advance decision at any time, but unless you do so it should be taken to represent your continuing directions.
I felt honoured when they both asked to be their signed witness. Here was a couple taking full responsibility for their lives and, most important, their deaths.
Sadly, the second elderly couple, Peter and Rose, are not engaging with their end of life process.
Both increasingly frail, Rose particularly so, they spend most of their time driving to and from hospital appointments and the GP surgery, in heightened states of anxiety.
‘I can’t understand what’s wrong with her,’ Peter told me, clearly very distressed when I met him in the road. ‘She keeps falling asleep all the time.’
‘It’s what happens to folk of your age,’ I replied, gently.
‘But, the doctor said…’ he responded, his eyes glazing over, and he was off, telling me about the litany of ailments Rose was suffering from, and how this or that drug was or wasn’t doing the trick.
Of course she’s falling asleep, she’s getting ready to die, I wanted to say to him, but he wasn’t prepared – or, more importantly, able – to listen.
Even so, I was amazed that seemingly, neither the GP nor hospital specialists had sat them both down and explained the dying process to them. It made me question how many people are approaching the end of life without understanding what is happening to them.
The difference between Brian and Enid and Peter and Rose is a huge lesson for me. Death is part of life, my life. I want to be prepared for it. Good heavens, it could happen tomorrow – under the proverbial bus, or even later this evening if I am knocked off my bicycle, cycling to choir practice. It is a real possibility.
But, too few of us are willing to face the fact that life is uncertain, and we are mortal – extremely so.
An intensive care anaesthetist I interviewed for The D-Word told me how he astounded he was that in his 20 years of working as a doctor, he had never yet looked after a patient who had made a living will, nor someone gravely ill who had given enduring power of attorney to a next-of-kin.
‘Actually, he told me, ‘I think it’s irresponsible not to consider the fact that one day you may become so ill that you are not able to express your wishes about how you want to end you life. It puts a huge burden onto relatives who are then expected to second-guess if you want life-prolonging treatment or not.’
So I’m taking on the lesson that Brian and Enid brought to my door. Although I made an advance direction a couple of years ago, I am updating it, using the same form from the Alzheimer’s Association. My husband is also doing one too. Somehow it makes life feel much safer, and gives us that all important permission to talk about our deaths openly and honestly.
For an advance direction to be valid, you must be over 18 years old, and the document has to be signed, witnessed and dated while you are mentally capable. It is advisable to give a copy to your GP or your solicitor as well as to any next-of-kin who need to know your wishes should an emergency arise.