Thursday, 4 February 2010

The Right To Why

A major debate currently rages over whether legalised euthanasia should be introduced for those with 'life-limiting' illnesses (other than life itself, that is!)

It strikes me as quite shocking that what should be a last resort is blatantly being advocated as a first resort, in view of the fact that at least half the country has no access to proper palliative care, let alone in the speciality of geriatrics (a vastly understaffed field to begin with). Therefore the majority of patients in extreme pain have no effective means of pain management in order to gain the mental equilibrium necessary to arrive at such an irreversible decision. Still others are simply depressed and may not realise it, so this too needs to be ruled out as a factor in their decision making, particularly if treatable.

And no one in the country seems to have access to such a thing as cognitive therapy specialising in the treatment of those with dementia (many of whom couldn't give their consent in any case, even if the highly vocal author Terry Pratchett is choosing to give his ahead of time.) But if there is such a thing as the Peto Institute in Hungary to aid neurologically-impaired children into becoming more functional using conductive education, why not an equivalent rehabilitation system for dementia utilising this, perhaps combined with cognitive therapy? And why are drugs such as Aricept costing only £2.50 per day - considerably cheaper than 24/7 nursing care if it retards or plateaus the condition - being stinted on or outright refused to save money because the patient 'is not yet ill enough'?

Now we hear that for every £144 spent on cancer research, a mere £12 is spent on dementia research, no matter that dementia actually costs the nation a great deal more in care costs. Furthermore 60% of dementia has actually been linked to vitamin deficiency if an older person suffers from mild to severe malnutrition owing to their diet narrowing and liquid intake falling due to an inability to cook once widowed or lack of appetite owing to pre-existing medical conditions. Even long term hospitalisation where nursing care is inadequate is proven to leave patients malnourished, which means dementia could theoretically be a temporary and reversible condition for many sufferers, not least those who go into hospital with their marbles and come out without.

And even if a patient has had the luxury of being able to exhaust every alternative there is and has met every last legal and good practice criteria decided upon to be passed fit for assisted suicide, what right does he or she have to ask of a medic trained to heal rather than harm, to become a killer? There is no right to die, merely a perception that there is. Although not religious myself I still acknowledge that life is a gift and therefore not necessarily mine to take, however dire it may become.

My father (although not malnourished) has dementia but is lucky enough to live in Northern Ireland where you basically get whatever you ask for when you enter a Doctor's surgery and they don't seem to have heard of drug budgets. My mother requested Aricept for him and within the day was holding his first prescription of the stuff. It is early days in terms of knowing whether it is doing anything yet, but at least he has been given the chance and has not suffered any adverse side-effects. Meanwhile I have sent my mother a hypnosis CD on developing a better memory which I have suggested she tries playing softly under the bed as he sleeps and have also found a book optimistically entitled The Alzheimers Prevention Plan, which looks like it might be quite useful for people of any age. Though having been a bit of a late developer in life, I'm rather hoping I will be a late developer re my diseases as well!

Though just in case you thought life was becoming a little too disposable, at the opposite end of the spectrum you can always take this,solving all your health problems and living to 100 at a stroke.


Wisewebwoman said...

I'm so sorry to hear about your dad, Laura, these diseases are very challenging for all and I hope the drug and your CD help him find his way back or at least halt the progress.
As to euthanasia, I am a total proponent, there is no point in suffering so dreadfully or being warehoused with a slack jaw and drool for company. As I have witnessed with dear ones who made a clear case for their own termination prior to being sick and so housed. Their spouses refused and could not let go.
Switzerland seems to be the place to do this now. As to living to a 100, if I were in fine physical fettle and continent and coherent I would say why not?

Steve said...

This subject is a moral and human rights minefield. I find it interesting that you feel that nobody has a right to die as if death itself has become a legal currency. I suppose with our laws regarding murder and manslaughter it always has been to a degree. Regardless of this though everybody owns their own death. We all have one coming to us one way or another. I think morally and idealistically it would be nice if we could each choose the nature of that death as much as we can - I don't mean the cause so much (ooh, doc, can I choose sexual exhaustion rather than cancer please) as the environment and sometimes, yes, the when. Most of us would like to be at home surrounded by family when the time comes to shuffle of this mortal coil. If had an incurable disease which was going to erode my quality of life till I was little more than a vegetable that was going to burden my loved one I think I could see my way to requesting a one way flight to Switzerland. It's my life and my death. If the world isn't going to offer me a cure or way to improve my quality of life (other than rendering me pain free - and a lot of the time this goes hand in hand with again being nowt more than a vegetable) it has no right to demand I go on suffering if I choose not to. My life and my death are mine. They are the only things I truly own though I admit control of them is something few of us every achieve. But is it wrong to aspire to some control? I think not. However, this is all idealistic supposition. The problem with the human race is that any human right or legislation is open to abuse. Legalizing euthanasia worries many into thinking that we'll see a sharp increase in murders disguised as assisted suicides. I disagree. I don't think we'll see any more than we do now. Possibly less as legalizing it will see the act bound in so much red tape that people will exhaust themselves (possibly kill themselves) jumping through hoops to tick all the legislative tick boxes.

Nota Bene said...

Oh I like the idea of a super pill...on a sensible and serious note, I can see the pluses and minuses of the right to die debate. Of course, it should never be a first resort, or even a second. The question has got to be 'when is it the right choice?' For me, having seen my father deteriorate until he died last year from Parkinson's, my view is coloured by not wanting to end up the same way. I really don't want to be a pale shadow of my former self, dribbling and peeing everywhere and unable to do even the simplest things whilst (and here's the crucial point) a completely unsympathetic and uncaring NHS looks on willing me to die quickly to free up a bed.

Reluctant Blogger said...

I am really sorry to hear about your father. I do know how hard it is for everyone when dementia is thrust into a family. I hope the medication slows down the onset.
I do not want to linger when I become older. Or at least that is how I feel now. I would definitely take a decision to end my life if I was diagnosed with a progressive disease - but I would do it myself before I became too incapacitated. I could not ask anyone else to do it or help me do it. That would be too much. If I were stricken unexpectedly I guess I would just have to cope somehow.

I would certainly not ever suggest to anyone else that they should end their lives.

Norman said...

Laura. A day or so ago, I posted a comment gently, I hoped, correcting the misunderstanding about the Peto Institute. Maybe there was a technical failure; maybe you chose to moderate it out. But it has not appeared.

At the very least, would you very much mind editing the above post to replace "Aspbergers" with "cerebral palsy" which, though not fully accurate, would be very much more so?

Many thanks.

The Poet Laura-eate said...

Norman, sorry I can find no trace of the comment you refer to, but I have amended my posting as a result of your feedback, though I see that the Peto Institute no longer seem to be restricting themselves to cerebral palsy sufferers alone and so have substituted 'neurologically-impaired children', in the hope that this will prove an accurate description. Thank you for drawing my attention to it.

The Sagittarian said...

Very thought provoking post, Laura, and my sympathies to you over the situation your Dad is in. My own father died of cancer and his last few days were very hard on all of us. I really don't know what I would do for myself if I ever find myself in such a position.

NormanP said...

Thanks for the thoughtful correction, Laura.

Tessa said...

My mother had dementia when she died. It was problematic mainly in that she was unable to express to her nurses that she was in great pain (she had liver cancer), so I think she suffered more than she should have, until I requested that they just keep the morphine going, even when she did not ask for it. The week I spent watching her die, followed a year later by my experience with my friend H, who died horribly from lung cancer, made me a firm proponent of the right to die. I can't see it happening here in our lifetime, so, like Wisewebwoman, it's a one-way ticket to Switzerland for me when my health and faculties start failing. At least that's the plan now. Who knows how I'll feel when the time comes? And that's the real conundrum ...

Stephen said...

I'm sorry to hear about your dad, Laura. He was always really nice to me and my brother, and the last time I spoke to him, he said some very kind things.

Steerforth said...
This comment has been removed by the author.
Steerforth said...

What really frightens me is something I heard today on Radio Four (so it MUST be true!). Apparently, in Japan they're developing robots to look after old people (and I mean look after in the "caring" sense rather than the Bob Hoskins).

I suppose I wouldn't mind if the robot cooked, cleaned, poured glasses of wine and selected episodes of Midsomer Murders (because I'll probably like watching it by then), but I suspect that it will just be a sort of mobile CCTV device.

I don't have any strong feelings about euthanasia. I've witnessed some wonderful palliative care that shows that a "good death" is possible, but I've also witnessed my father die a long, slow death in conditions that would give Camp Delta a run for its money.

I'm concerned that euthanasia is cheaper than care and that if society overcomes its taboo over assisted suicide, individuals could feel under pressure to stop being a burden to their loved ones.

Brother Tobias said...

I agree with all that you say about palliative care and access to treatments, although I joined (what was then) the Voluntary Euthanasia Society and signed a living will when I was still at school. Quality of treatment and the wish to die are closely linked, as you suggest.

The Poet Laura-eate said...

WWW - I find your feelings entirely understandable.

Steve, you are not the only one who would chooose 'sexual exhaustion' as your preferred cause of death in extreme old age! I find your concept of 'owning' your own death interesting. What alarms me is how the government may start thinking all their christmases have come at once if a vocal proportion(not all of whom are physically ill) are now saying - kill me, please kill me! How long would the ownership of your own death remain yours for in view of all the governmental, societal and even family pressures that might begin to grow once assisted suicide became legalised? Better for it to exist unofficially surely in the doctor giving a little too much morphine to the patient with only days left anyway with their tacit agreement. If you think back to all the strictures on legal abortion which existed when it first came in, none of which have been officially swept away but if you are a woman who wants an abortion because you are going on a ski-ing holiday and it is simply 'an inconvenient time, perhaps next year' (as a friend of mine who worked in a Family Planning Clinic was confronted by), and who got her wish, then you will appreciate some of what I mean. The rest of what I mean is, where is our right to proper care and management of whatever medical condition or disease we are stricken with nationwide, and why are we not demanding THAT before we start demanding our 'right' to die? Surely demanding the right to die first is putting the carriage before the horse when not everyone has access to proper palliative and geriatric care or the latest treatments available.

Notabene, I agree that no one should feel obliged to die simply because the NHS doesn't have a bed for them. Yet that is the kind of thing I fear we will start seeing if assisted suicide becomes legal. Plus with proper palliative and nursing care, no one should be peeing themselves either (well not noticeably at least). That (and the drooling) is a poor care management issue.

Thanks RB. I think that you are right that few of us will know for sure how we feel until we get there. The human spirit can go either way - some people in enormous pain and with poor prognosis still want to go on, others don't. Then again enormous pain is often a care management failure rather than something a patient SHOULD be putting up with, alive or dead.

Sagittarian, like RB above, you sound like you will only know for sure what you want for yourself when the time comes (and given that technology and medical advances will probably be at a whole new level from what we are able to judge, based on them now).

Tessa, what terrible experiences for you and I completely understand how you have become a product of those experiences to date. Let's hope that things change as you date so you're never in such a bad postion. I'm all for patients having maximum options - as long as they remain the preserve of the patient. And terrible pain should not be allowed no matter how terminal someone is - there are surely trauma machines which could monitor brainwaves at regular intervals to help regulate medication.

Thanks Stephen.

Steerforth - 'a good death' should definitely be a human right, regardless of whether it is natural or assisted (with the full consent of the dying party that is). I don't think robots should be dispensing the TLC on the nursing side though and would be similarly alarmed to see them employed.

Thanks BT. I appreciate that you got the point of my posting about the mistake of putting the cart before the horse re assisted suicide becoming legal before nationwide access to palliative care/the latest treatments being facilitated. More alarmingly still, why would they bother rolling out nationwide palliative care for all if a percentage demand the right to die instead? Far easier/cheaper to for the NHS to assume they all want to die and stop providing better treatments and care.