Advance Directives, also known less helpfully as 'Living Wills', are documents which allow people to express in advance how they would like to be treated, or how they would not like to be treated, should they become incapable of communicating their views to doctors and other healthcare professionals.
They are popular as they give people a sense of control over their future, and help them to cope with that fear of losing control which is so understandable and so human. But is this 'sense of control' true or can these documents actually be unhelpful or even dangerous? This short article sets the background to Advance Directives and attempts to assess them.
I qualified in medicine less than twenty years ago and I have already seen an enormous and generally helpful change in the entire approach of doctors to patients. I was trained at the end of the era of 'doctors' orders', when there was no discussion that 'doctor knows best'. Patients had very little or no say in their own treatment. This whole approach is called 'paternalism'.
We have all witnessed a steady move towards what is called 'autonomy'. The word literally means 'self-determination' and is perhaps best expressed in the title: 'Whose life is it anyway?'
Let me make it quite clear that basically I believe this move has been a good thing. Healthcare should be 'a partnership between two experts - between the doctor or other healthcare professional who is an expert in her own specialty and the patient who is an expert in how he feels and what he wants'. In my general practice years I tried to form such partnerships. Some recent experience as a patient finally convinced me that I was right! I believe Christians can give considerable support to autonomy in so far as it endorses the unique value of each human being - someone created in the image of God and for whom alone Christ died. However, Christians would always want to see the rights inherent in autonomy balanced by responsibilities, and many of the medical ethical problems that confront us today are the consequences of unbridled, uncontrolled, unfettered autonomy. Some demand rights but deny responsibilities. However, that's another story.
The current situation
Patients legitimately want the right to control their own futures, the right not to be overtreated for example, and Advance Directives seem to give that right. In the United States, the Patient Self-Determination Act came into force on 1st December 1991 and requires all healthcare institutions receiving Medicare or Medicaid funds to make patients aware of their right to make or hold an Advance Directive, and to record the details of that decision in the casenotes for any necessary subsequent action.
There is thus a huge natural experiment going on in the USA and the UK might be wise to wait and see the outcome of this. Early indications are that Advance Directives don't make much difference anyway - a Californian study showed that the treatment of coma patients who had signed an Advance Directive was as complex and expensive as that of patients who had not signed such a declaration. The administration of all this obviously adds to the burden of paperwork...
In the UK, Advance Directives are becoming more and more popular. Interestingly, the Voluntary Euthanasia Society is the most active group promoting them. Could there be a connection between Advance Directives and euthanasia?
The Terrence Higgins Trust and the Centre for Medical Law and Ethics at King's College, London have produced their own form designed for people with HIV and AIDS, and solicitors in England are now beginning to recommend their clients fill in a Living Will as well as a Last Will and Testament...
The British Medical Association is in favour of the principle of Advance Directives as pieces of paper but is firmly against them ever becoming legally binding.
What is the legal position in the UK?
At the time of writing, this is unclear. The All-Party Parliamentary Voluntary Euthanasia Group has a draft Bill to present to the House of Lords, which would make Advance Directives legally binding by statute law. This draft Bill now reads much more reasonably than earlier versions, but still betrays why it is being promoted by the Voluntary Euthanasia Society in the lines:
'that any distressing symptoms (including any caused by lack of food or fluid) are to be fully controlled by appropriate analgesic or other treatment, even though that treatment may shorten my life'
In other words, the VES is seeking legal powers to starve and dehydrate people to death, with medication to shorten the distress of this. Many believe it would only be a short while if such legislation were passed before it would be argued that this was not 'compassionate' and that a lethal injection should rather be given as soon as the decision was taken. Well-intentioned legislation in favour of otherwise reasonable-seeming Advance Directives might thus allow euthanasia in by the back door.
Whatever happens in statute law, however, it may be that Advance Directives in a case law sense already have some legal validity in the UK. In so far as learned judges have commented on them in two cases, they are probably now viewed as legally binding. The whole situation is unclear.
Should we support advance directives or not?
I have indicated above that I am all in favour of patients having more say in their treatment, and Advance Directives may well have limited value in this process, but I am convinced they should not be legally binding for the following reasons:
1. Practical Problems
When should they be implemented? There would have to be a clearly identifiable 'trigger event' - either the onset of incompetence or the occurrence of another event in the already incompetent. Could all those involved agree on this? Would incompetence have to be permanent, or temporary? (Many medical conditions would be readily reversible.) If permanent, how long should everybody wait to see that it is permanent?
b) Informed consent
How could people precisely foresee future situations? No-one signing an Advance Directive while well could possibly foresee all future situations or ways in which new medical treatments could affect those situations in years to come. It would be argued that documents could be updated regularly, but wouldn't most of us forget?
c) Changed minds
Could people really predict how they might feel? This is probably the biggest single problem. The healthy do not choose in the same way as the sick. When we become unwell our attitudes to what we want change. But an earlier Advance Directive might still be in force ...
d) Difficulties of diagnosis/problems of prognosis
The title of a BMJ paper says it all: ''Patients with terminal cancer' who have neither terminal illness nor cancer'. Doctors do get it wrong sometimes. Could the person holding the Advance Directive or those administering it ever be sufficiently sure?
2. Effect on the disadvantaged
The fear which drives many to sign Advance Directives is of losing control, and becoming a member of a disadvantaged group such as the severely disabled, the confused elderly or the terminally ill. However, these are the very groups whose treatment needs a positive approach, and the existence of Advance Directives further stigmatising these conditions would reinforce a negative approach. These groups deserve special healthcare with adequate resources.
3. 'Passport to euthanasia'?
As explained above, the fact that the VES is so keen to sponsor Advance Directives must make us look for ulterior motives.
What's the alternative?
Advance Directives have come to the fore because of patients' justifiable desire for a proper say in their own treatment, but they also reflect a lack of trust in doctors. CMFs Professor David Short has described Advance Directives as 'a vote of no confidence in the medical profession'.
We should work at rebuilding relationships with patients, relationships of trust in which written instructions may well provide helpful guidance, but as the BMA has concluded, legally binding Advance Directives will do more harm than good.
Rather, Christians of all people should want doctor-patient relationships to be a Christ-like sharing of the load- a 'partnership between two experts'.