Once again, the High Court is being asked to quantify ‘enjoyment of life’. This time the vanishing point has been moved forward from the ‘futility’ of the Bland case.

I am at a loss, as ever, to imagine how even those nearest and dearest to the ‘patient’ can make such a judgement. How an objective judgment can be made  by the Court of Protection, based on written evidence,  is beyond me.

I have had the advantage – and privilege – of having met hundreds of close relatives of those who dwell on the outer reaches of life as we know it. I have only ever met two individuals who had even countenanced deciding whether life for their loved one was futile or not; for obvious reasons I cannot discuss an individual case.

However ‘close’ you are to someone, you only have your own subjective opinion as to their enjoyment of life. I cannot climb Everest – does that make my life less enjoyable than Edmund Hillary’s? I can not do what he could do, yet I am completely content with my life as it is – if for no other reason than that I cannot imagine what it would be like to climb Everest and yet not be able to.

The Bland case was ground breaking in that the High Court were satisfied that Tony Bland had reached the vanishing point of absolute zero in terms of enjoyment of life. He was not asking to be relieved of his life – his parents were, on his behalf.

I will not pass judgement on how much of that request was objective and how much subjective – I have expended too many boxes of Kleenex listening to the tortuous arguments that those given the task of caring for someone who society says they should love and cherish for life, but who no longer resemble the person they were once moulded into, conduct within themselves.

If you are a young girl of 24, married for six months to someone you promised to cherish ‘till death us do part’, but who now lies immobile and insensate in a rest home, how do you come to terms with his parents who turn against you when you contemplate divorce? Should you really spend the rest of your life caring for someone who bears no relation to your husband, give up hope of having children, a normal life, in order to avoid the judgement of society (and his parents) that you have ‘run out’ on your marriage vows, that you are a disgrace,  a heartless bitch? These are unfair pressures.

Yet what are we saying when the court agrees to such a ‘divorce’ on behalf of the patient? We are saying surely, that it is unreasonable to expect their partner to diminish their potential enjoyment of life because of what has happened to the patient.

That society is that judgemental was brutally illustrated to me once. A young woman, I shall call her Alice, suffered from Down’s Syndrome. She was around 30, a happy laughing soul, content with her life within a small unit containing maybe three or four companions similarly abled. I enquired about family, visitors. No, there were none. She had no brothers or sisters. ‘

‘They never risked the same thing happening again’ sniffed the woman in charge. ‘Doctors, both of them, he drove down here with Alice the day after she was born and we’ve never seen them since, just a card at Christmas’.

Her disapproval was palpable, even after 30 years.  I got the impression she would cheerfully have seen them tarred and feathered for their abdication of parental duties – and yet, and yet.

Somewhere, several hundred miles North of Alice’s home, a pair of childless Doctors continue to go about their business, saving lives, benefiting the community they live in – and scorned for not giving Alice, what? What exactly would they have given her? How, precisely, has their wish to remake their lives, been to her detriment?

The decision that the Court of Protection has to make in the current case of ‘M’ is far more serious than divorce or the permanent fostering of a child – and yet part of the principle is the same – it is the wish of the parents or carers to ‘move on’, in that ghastly American phrase.

Now we are potentially talking of the death of the patient being required in order that the rest of the family can ‘move on’  – and I recoil. It is a price too high, to me at least.

I know not why. I came, albeit reluctantly, to terms with the Bland decision along the same lines as I came to terms with the decision of the parents of Alice, or the many young men and woman who wished for a divorce in similar circumstances.

The partners and family had their rights too, social constructs of what a marriage should be, or how a Mother should behave, were not relevant when you could discern no tangible benefit to the patient.

The case of ‘M’ is different though – for the goal posts have once more moved beyond my understanding.

‘M’ is not in a permanent vegetative state, unable to discern any quality of life, ‘M’ is ‘minimally conscious’, she has likes and dislikes, responds to her immediate carers – or at least, they believe that she does.

The High Court is no longer considering whether an absolute zero quality of life is to be preserved, but whether a lesser quality than you or I enjoy is worth preserving – I do not know any way in which you can make that decision, beyond saying ‘that this is not our decision to make’.

I await the final judgment with trepidation. Truly Judgment Day.

john malpas July 29, 2011 at 00:38

This seems very moral. Yet there must be statistics to clarify
things.
What do the great unwashed do. Say the producers of children out of
wedlock – these are a great multitude. Do their progeny give a damn when they
nearest fall into being a burdon.?
The UK seems a vey self indulgent
country – responsibilty is not born willingly – so when does the state step in
.

A frequent
visitor. July 27, 2011 at 21:32

Blimey, Anna, you do pick them. I post here q. often, but for obvious
reasons, I’ll put my head below the parapet at present.

In 1999, my dear father fell over. By the time a reliable diagnosis was
available, it was clear to me that he was in serious trouble. A catastrophic
fall in blood pressure (for which read – hardly any) caused by an aeortic
aneurism. He was only 72. He had played hockey for his Army Corps until the
age of 47. All through my childhood/young manhood he had been irritatingly
active – when I wanted to go out and chase girls, he wanted to build a wall,
or lay a terrace.

He was in a coma, descibed to me as irreversible. I went through the
obvious options; there was space available to look after him, there was even
money available to look after him – the first thing I realised was that my
mother was simply not up to the task, and so I tried to think on Dad’s behalf.
There was no rush, I thought, until I was advised that gangrene was setting in
and that attention was urgently needed. So, I thought that through, too. When
it transpired that his leg had to come off – I mean all of it , right up to
the details, I realised that there was a huge decision to be made. I’d held
his hand, whispered in his ear – nothing…

And then my brother arrived and I was stupid enough, or distressed enough
to permit a ‘family vote’. I knew what I thought, which was to let him go, but
my brother, who had no stake in this (i.e. actually looking after him)
persuaded my Ma, who really had no comprehension about what was at stake, to
combine with him and outvote me.

Needless to say, I was (and still am) upset, because what happened next,
which had to be described in detail and which I could not pass on to my
Mother, was horrible.

This had been the bloke who had taught me to ride a bike, taught me to ride
a horse, taught me to drive a car, was now still in a coma, a quarter of him
had gone, his ‘quality of life’ (odious, but apt phrase) was unrecoverable. It
was virtually impossible that he would ever come round and , if he did, I
could not imagine what he would be like. I thought I knew, but it was never
put to the test, because about five minutes after another blazing row, the
‘phone rang, and that was that.

It can never be easy…

Jack Savage July 27, 2011 at 18:03

I have told my nearest and dearest.

If what you see on the hospital bed is not me…then let it die.

This way you can spare your loved ones an agonising decision. Make a
“living will”.

MickC July 27, 2011 at 21:08

Entirely agree with this.

The living will is the most sensible way to proceed. However, it probably
won’t apply to those who are young and never expect the unpleasant things
might happen to them. That comes with age and experience.

ivan July 27, 2011 at 17:55

I can add now, especially after reading the above posts, the fact that no
one can shirk their personal responsibility – they will all make a decision,
even if it just to decide not to make a decision and leave it to someone else.
Whatever their decision is they WILL have to live with it for the remainder of
their lives.

Leaving it to someone else to make that decision is, in my opinion, an
admission of failure – a lack of moral fibre and courage.

In many cases it is very hard to make a decision and then there is the
added worry about ‘is it the right decision’.

Unfortunately, in present day society there is an attitude of ‘someone else
will tell me what to do’ which is just wrong. It appears that people have
either given up or been taught not to think for themselves. As a consequence
of this and peoples inability to take personal responsibility for their
actions, society is headed into, as philip walling says, a terribly dark
and frightening country.

PT Barnum July 27, 2011 at 17:41

I would not judge a spouse or even a parent who could not stand by an
irrevocably changed loved one. I never been in those shoes, and would never
ask anyone else to make such a committment-at-any-price for me.

But for a family to want the state to murder that loved one to bring an end
to the emotional burden, rather than that they confront their own feelings and
act on them, is just so wrong as to be bordering on a crime itself. And if
their request is granted, the wedge has got very thick indeed.

philip walling
July 27, 2011 at 16:40

There’s the right thing to do and there’s what human beings do.
Some get
pretty close to the right thing, but still never achieve it, others remain a
long way off. But none of us ever gets it right. We can only bewail our
manifold sins and wickednesses and pray for forgiveness. The agonising over
what is rthe right thing to do misses the point that if we were God we would
give all that it took of ourselves, even our lives, for the benefit of those
for whom we are responsible, but because we are not God we must do our best,
and if that is not good enough we must take whatever consequences follow.

If we ask forgiveness, because we were unable to do what was needed, we
will be forgiven. But if by sophistry we convince ourselves that letting those
people down who depend on us can be justified by balancing our ‘right to move
on with our lives’ against the welfare of the person who is let down, and that
we’re doing the right thing by being selfish, then we even lose the
opportunity to see ourselves for what we are, repent and ask to be forgiven.

All these cases involving the court giving its permission to absolve
someone from doing something he is obliged by the law of God to do, allow
judges (usually limited human beings with attitude) to blunder into areas in
which they have no power and even less right to be. They are moving to fill
the vacuum of authority left by our pushing God out of our consciences. But
with their left/liberal perspective and instincts modern judges seldom
understand what they are doing, although that doesn’t stop them trying.

There was a time when judges believed in God and knew the extent of their
powers; but now they think they are God and are leading us into terribly dark
and frightening country.

Zaphod July 27, 2011 at 19:39

Those who resolve a dilemma by reference to a god’s will, should remember
that it only works for the followers of that god.

Many of us have no such belief. We are obliged to think. You have nothing
to offer in the way of help.

We also object strongly to judges following the law of some god.

Ancient &
Tattered Airman July 27, 2011 at
23:10

Exactly.

Rob July 28, 2011 at 11:47

The Tao of man, as CS Lewis put it in “The Abolition of Man”, is more
about natural law. Things that we instinctively know to be the right or
wrong thing to do. This does not need to be attached to a God. The
philosophy that binds the religion is often ignored by Atheists (I know I
was one for many years) but it is important to understand that without a
structure of fundamental laws that we cannot change we will wander around
in confusion debating the semantics of exactly when murder is
acceptable.

One can imagine all kinds of scenarios that can aim to justify the
kinds of decisions we are talking about. Yes some scenarios will be much
harde than others, and we can understand why people might make those
choices, we may even think that we would do the same but we must not fool
ourselves into thinking that this re-writes the natural law of right and
wrong.

The difficulty of making all moral points subjective, which is what
many atheists do, is that then you can justify all sorts of actions that
would never be countenanced otherwise from killing babies in the womb for
convenience to mass homicide in warfare in a pre-emptive strike. These
fundamental laws (as opposed to say contract laws) are not ours to
change.

Little Black
Sambo July 28, 2011 at 19:15

“Many of us have no such belief. We are obliged to
think.”
You presumably have no idea how supercilious that
sounds.

Zaphod
July 28, 2011 at 19:56

When I’m told yet again that somebody’s god is always right, and
therefore I am wrong, without any other justification or explanation; my
response is often equally arrogant.

I don’t believe in any god. None. Yet I have quite well-developed
morals and ethics. Those who follow rules don’t need these, and are
effectively forbidden to explore their implications. Those people really
have nothing to contribute. I don’t mean to be rude, but they start it
by telling me their unarguable “rules”. What’s left to discuss?

“Rules are rules”?

Matt
Wardman July 28, 2011 at
20:26

Usually there’s a political negotiation between the rules that
somebody else believes in, and the rules that you believe in.

That’s what democracy’s about, surely?

berenike July 27,
2011 at 15:15

I damn well hope my husband would look after me till death (and consider
this normal) if I ended up in a coma six months after our marriage, given that
was what I would have thought I was signing up to (and would consider normal,
not some selfish desire on his part or weird emotional masochism on mine) in
the event of him ending up in a coma six months after our marriage! “In
sickness or in health, till death to us part” – isn’t that in the Sarum,
Anglican and current English Catholic rite of marriage? Not “I promise to
cleave to you, unless /until you really need me in a way that I feel is going
to cost me too much”.

Rob July 27, 2011 at 15:01

Parents or spouses may abdicate their responsibilities. They may leave the
caring to the state (others to pay the price). It is a choice they can make
and a choice they should be judged on. It is, however, no place for the law or
the state unless they take matters into their own hands. If the burden on an
individual is balanced with the “quality of life” for the patient, what
happens in the future when the carer is the state?

Marriage is forever, it is pointless otherwise. “In Sickness and in Health,
til death us do part”. You are still free to decide that you do not have the
character to uphold such a vow. If you cannot then you should not make that
vow.

Parenthood is also forever. I have nothing but contempt for the GP parents
you mention. Forgiveness would require their repentance and is not for me to
give. Maybe they are busy saving lives to assuage their guilt (the card at
Christmas an admission of guilt). Ones profession does not define your
character.

We are all dealt a different hand and we will all be judged on how we deal
with what life throws at us. Sometimes outrageous talent is not such a gift,
more a burden. The simple man who lives honorably is worth 10 genius bastards
and will trump their intelligence with his wisdom.

We are only equal in the eyes of the lord.

Rob July 27, 2011 at 15:05

I should add that anyone suffering such a tragedy has my deepest
sympathies. Anyone who carries on caring for their loved ones following such
a tragedy has my utmost respect for their incredible courage and
compassion.

GildasTheMonk
July 27, 2011 at 14:31

I am very very sorry to hear that Ivan. What is the answer to this type of
medical legal and ethical dilimma . I could not possibly say. It is
unfathomably complicated

ivan July 27, 2011 at 13:35

Anna, as you say it is a decision in which you are damned if you do make it
or damned if you don’t.

I have been in that position. My 16 year old daughter got malaria when we
were in Papua New Guinea and went into a coma. The type of malaria was the one
that destroys the brain, though I didn’t know it at the time. A doctor friend
and specialist in malaria came from Australia and said it might be possible to
keep her alive if we could get her back to Australia but she would never be
the daughter I knew again.

I agonised over this for a day, should I or shouldn’t I? Could I make that
decision? Was it right for me to decide her fate?

In the end the decision was taken out of my hands by her death.

That was 40 odd years ago and to this day I still don’t know the answers to
those questions even though I’ve thought about them many times.

Maybe someone not emotionally involved can see the whole picture and make
recommendations but in my opinion they should only be recommendations. No one
can make that decision for you because YOU are the one that has to live with
it.

Anna
Raccoon July 27, 2011 at 13:51

Ivan, my heart goes out to you…

berenike July
27, 2011 at 15:18

I am very sorry.