Living Wills

by John Kidney

I sometimes get asked the question “ I have a Tremor, should I make a Living Will?”

There is a lawyer’s answer but the short answer is that no-one needs to make a Living Will ( now called an Advance Decision ) simply because of having a  Tremor. There are all sorts of good reasons for wanting to make an Advance Decision but not that particular one.

In 2007 the Government passed the Mental Capacity Act. This effectively replaced the term Living Will with the new title “Advance Decision” SO THAT Living Wills have now died.

An Advance Decision can be made by anyone who has the mental capacity at the time of making it. It can be used to set out in advance what decisions a person would wish to make concerning personal welfare issues should he or she become unable to make those decisions later in life due to illness or injury e.g. due to Dementia or being in a coma.

An Advance Decision can for instance set out the medical treatment or procedures to which a person would or would not consent in the event of being deprived of the necessary mental capacity to make such decisions later in life. We have all heard people say “If I was in a coma with no chance of recovery I would not want to be kept alive on a life-support machine”, or “If I had Dementia I would not want someone dressing and undressing me and taking me to the toilet and wiping my bottom……I would simply want to die with dignity.”

Well, an Advance Decision can, within limits, set out these sorts of decisions in writing whilst the person making the decisions still has the mental capacity and those decisions will be respected.

There are, however, some restrictions on what you can and cannot decide:-

1.      You cannot ask for your life to be ended. This amounts to asking someone to murder you. It is not right that any person ,doctor or not, should be compelled to comply with such a request.

2.      You cannot ask for a treatment that doctors agree you should not receive.

3.      You cannot nominate someone else to make a decision for you (but you can execute a Lasting Power of Attorney in which you can do exactly this).

4.      You cannot refuse basic nursing care such as routine hygiene.

5.      You cannot ask to be deprived of food or drink by mouth. (You can ,though, ask not to be fed by mechanical means.)

6.      You cannot ask for an illegal act to be committed e.g. refusing treatment in defiance of a Court Order.

If I suffer from a Neuro-degenerative condition such as M.S. or Parkinson’s Disease I can, if I wish, make an Advance Decision that I do not want to undergo surgery or be fed by a pump or even be resuscitated. In years to come I may not be able to tell doctors this so my relatives or close friends can produce my Advance Decision and I will get my wishes.

In the case of Living Wills there was no Legislation which gave them the force of law.Since the Mental Capacity Act 2007, however, it is clear that if a person is subjected to a medical treatment medical procedure contrary to the wishes expressed in an Advance Decision then the person carrying out the treatment or procedure can be guilty of a trespass of the person ( not a criminal offence but a civil wrong) and possibly a criminal offence of Assault. Failure to provide a specific treatment or procedure requested in an Advance Decision, however, is not likely to be actionable.

This is the general idea of an Advance Decision. I make the obvious point that it is useless making an Advance Decision unless those around you ( including your G.P.) know of it’s existence because you will be unlikely to be able to tell anyone when you need it! You can also change or revoke it at any time whilst you still have the mental capacity.

Getting back to the original question, I do not think it is necessary to make an Advance Decision because you suffer from Tremor. This is because Tremor does not generally rob you of mental capacity. It is a condition which will progressively deprive you of your physical capacity but you should still be able to convey your wishes to the doctors.

All those who suffer from Tremor know that it progressively diminishes physical capacity, whether it be in walking , writing or even standing in a queue. These problems can make it very difficult to manage one’s affairs easily. It might be worthwhile considering making a Power of Attorney. This used to be a cheap, quick and easy way of appointing someone else (someone close like a relative or very good friend) to look after your money and property on your behalf. You appoint an attorney, who does not have to be a lawyer, but who can pay into and draw out of bank account, collect your giro or even sell buy mortgage or let houses on your behalf.

Normally a Power  of Attorney is limited in time, ideal if the Donor (the person making it ) is going out of the country or into Hospital. However it was possible to make an Enduring Power of Attorney which would last until specifically revoked or until death. It would even remain valid if the Donor became of unsound mind! These had to be registered with what is now called the Office of the Public Guardian, and of course a small fee was payable.

Once again the law has changed the terminology. Whilst existing Enduring Powers of Attorney are still recognised, new Enduring Powers of Attorney are referred to as Lasting Powers of Attorney. The forms used are longer and more complex and all Powers must be registered with the Office of the Public Guardian .A fee of approximately £150 is payable and the Attorney must file annual accounts showing all transactions affecting the Donor’s property.

Overall it has become a bit more complex and demanding, as well as more expensive, to make a Power of Attorney. This will undoubtedly be off-putting for some, particularly as there may well be simple and more practical devices to overcome the difficulties caused by the Tremor such as a stamp bearing your signature or asking the same close friend to go to the Bank or Post Office, especially with your Tremor card by way of explanation.

A Lasting Power of Attorney can also regulate personal welfare issues. Basically you can stipulate what decisions your Attorney can make on your behalf concerning medical treatment. These are limited to the decisions you set out in the Power of Attorney which will then come into effect only once you have lost the mental capacity to make the decision yourself. An Attorney can for instance be appointed to sign medical consent forms for surgery etc. The Power can be revoked at any time providing you still have mental capacity. The Power must be registered and the fee paid. The Attorney must at all times act in your best interests and in accordance with your last known wishes.

Generally speaking an Attorney cannot consent to treatment that is specifically refused in an Advance Decision, but if the Lasting Power of Attorney is made after the Advance Decision and gives the Attorney the power to consent to or to refuse treatment then the Lasting Power of Attorney takes precedence.

Powers of Attorney are not the cheap and easy solution that they used to be to the problem of managing your affairs. Like Advance Decisions they are not imperative for Tremor sufferers but as with Advance Decisions they can be useful in the event of deteriorating mental faculties.

Anyone wishing to access more information on Advance Decisions or obtain forms can contact Dignity in Dying at 181 Oxford Street Marylebone London (tel no.08707777868) or visit www.dignityindying.org.uk

Anyone wishing to access more information on Lasting Powers of Attorney or obtain forms can   contact the Office of the Public Guardian at P.O. Box 15118 Birmingham B16 6GX(tel. no. 08453302900 or visit www.publicguardian.gov.uk

 ……….Alternatively you could consult a local solicitor.