Most of us will have given some thought to our end of life care, and what we would accept and refuse in terms of treatment.
However, shockingly only 4 per cent of UK adults have taken the necessary steps to legally record these wishes, namely making an Advance Decision or appointing a Lasting power of Attorney, meaning that for many of us, how we are treated and cared for in our final days could be out of our hands, and out of the hands of our loved ones.
Worryingly, 48 percent of people wrongly believe that their family members have the legal right to make decisions on their behalf, should they lose the ability to communicate.
An Advance Decision is a legally binding document which, if applicable means that healthcare professionals must follow your wishes for treatment at the end of life, even if you are unable to communicate with them directly.
Making a Lasting Power of Attorney allows a person to appoint someone to make decisions about their end of life care on their behalf, should they lose capacity.
Compassion in Dying is the only UK charity set up to help people navigate their legal rights for end of life care.
Chief Executive Sarah Wootton shares her views on what the current options for end-of-life care are and how you can legally ensure that your final wishes are respected.
“Options for end of life care can often feel like a minefield, made worse by the fact that some healthcare professionals themselves are not fully aware of their patient’s legal rights.
“Unfortunately, Advance Decisions are often not recommended, or are overlooked if a patient does have one, and this can lead to confusion amongst both the public and health care professionals over how people should be treated during their final stages of life.
“From the research that we have carried out we know that 82 per cent of people have strong views on their end of life care, yet only a tiny portion of these people (4 per cent) then take the necessary steps to ensure that their wishes are carried out.
“Our main role at Compassion in Dying is to provide information and support for anyone who is uncertain of their options, making sure that as many people as possible are able to have their final days play out in the way of their choosing what they consider to be a good death.
“If you feel strongly about the care and treatment that you would want to receive, particularly if you are facing the end of your life, or are given a life-changing diagnosis or undergoing surgery, then it is important to plan ahead by setting out your wishes in an Advance Decision, and by appointing an Lasting Power of Attorney if there is someone you can trust to voice your wishes if you are unable to do so.
“Whilst it is crucial that people plan ahead using these tools, the system is by no means perfect. There needs to be a formal system for recording Advanced Decisions to ensure that once someone has made an Advance Decisions it can be located and acted upon if needed. At present the onus is on the individual to make healthcare professionals aware of their Advance Decision.
“However, it is still best to take the legal steps of appointing either a Lasting Power of Attorney or making an Advanced Decision, to give you the best chance to receiving the death you would choose.”
For further information on any of your end of life care rights then please visit the Compassion in Dying website – www.compassionindying.org.uk or call the free helpline on 0800 999 2434 to receive impartial information on the options available to you on end of life care planning.
Compassion in Dying works in partnership with the campaigning organisation Dignity in Dying, which campaigns for a change in the law to allow terminally ill, mentally competent adults to have the choice of an assisted death.
As a supporter of Dignity in Dying I watched the whole debate from my bed and was aghast to realise that this Bill was not what I had thought at all. It would not have helped Tony Nicklinson at all! Rather hundreds of thousands of pounds have been spent on lawyers’ fees to draft something that will be torn apart in committee and delay us still further.
The fact is the small number of us who are capable of making the decision need only a cylinder of pure Nitrogen and a face mask. Nitrogen is used for a type of welding and as it is 80% of the air we breathe our brains cannot detect the absence of oxygen and hence there is no sensation of suffocation! It is cheap ‘safe’ and can be used in our own homes. If anyone needs more information go to Michael Portillo’s website and download his BBC Horizon programme on the Science of Killing. His thought-provoking conclusion was that pure nitrogen would never be an acceptable as a form of capital punishment because it was too pleasant a way to die! The public would not countenance crims dying in a far pleasanter way than the rest of us! BUT that makes it perfect for those of us who choose to end our lives surely? And for many more just having the option in the cupboard would be immensely empowering. Compassion in Dying could take on the vital role of a guidance service for those who need it – providing evidence of choice etc. This was brilliantly shown in the BBC Wales drama ‘Frankie’ about a district nurse in episodes 2 & 3 https://www.youtube.com/watch?v=Iwpk8e9BjPY
But for those wanting out NOW it is not possible to wait for some sort of ‘Doctor Death’ led service. As Baroness Helena Kennedy pointed out the law needs to be involved as the post mortem and inquest will be mandatory. No doctor need break their Hippocratic oath and the majority do not want this. Since DiD have decided on the legal route – and not one that would assist those like Tony Nicklinson who do need something – I am setting up a FB site caritas4veritas to empower those who are looking for good options. And it is important to allay the very real fears that surround this issue. The fact is that only a small minority of people are psychologically able to overcome the instinct for living and actually go through with it; and thankfully only a very small minority are capable of murder and with proper evidence provided the police will be able to home in on anything suspicious that has by-passed the usual route.
The fact is that CTD (choosing to die) is legal. And only those like Tony Nicklinson who are physically incapable need special legal provision. The debacle of the DiD Bill showed that we have a long way to go still.
Anyone who is not paralysed can choose to end their life (I think the term suicide is not appropriate in this context because of its criminal associations). Breathing pure nitrogen is the safe and actually pleasant method already being used quietly by some. That only leaves the legal side of setting one’s affairs in order and evidencing that it was all ones own work – hopefully CiD will become a support service for the process one day soon.