A Serious Moral Question

[VinnieK]

So why is currently called "their pillow angel" when she could already be out enjoying this so-called "quality oif life" ?

 

The article says the name is based on the fact that she stays in place when she's put on a pillow, not that her parents leave her on a pillow in the corner of the room all day or otherwise deny her the life this treatment allows her to have. It's simply a nickname, given to her by parents who are clearly trying to cope with the situation as best they can - in this case referring to a symptom of her condition, her inability to move herself, in a way that conveys love and how special she is to them.

[John Wright]

I feel great sympathy for Ashley and her family and anyone in a similar situation.

 

There are no right or wrong answers here. Its a question of your belief system. Its no different in theory to abortion, or choosing the sex of your baby or its sexuality. It isn't much different to stem cell research which the religious right have managed to ban in the States, but this apparently is acceptable.

 

40 years ago children like Ashley would not have been born alive or would have died shortly after birth. The question of how to keep them alive and manageable would not have arisen.

 

They are a creation of medical science which has preseved their lives without addressing what effect that has upon them and their families.

 

For sure we do not know what, if anything, Ashley experiences. We do know of people locked in, who do experience the world but cannot react. We know of patients in a persistent vegetatative state who have one day woken up, after doctors have said switch off the life support.

 

Medical ethics and medical ethics law are difficult and dangerous areas. They are also in a position of change and review.

 

Gone, I hope, are the days of DNR (do not resuscitate) written on records. Doctors are not gods, nor even demi gods. Neither for that matter are lawyers. Indeed the more we can keep lawyers out of medical decision making the better, but at that cutting edge it is inevitable that we are.

 

First and foremost a persons body is sacrosanct. To carry out operative procedures and or to introduce drugs without the consent of the person being treated is assault and poisoning at its worst. Of course not everyone can give consent. The very young, the very old, the unconscious and thse with limited mental capacities. The fact that they cannot consent dose that make a difference?

 

Well in young children it's the parents views, those of the hospital medics and if there is a dispute the courts who decide. The test is what is in the best interests of the child. What about the child who needs a blood transfusion, whose parents say no for religious reasons, the courts will give the go ahead everytime, not withstanding that this may create a child rejected by her family and her church, excommunicated. Is that in that young persons best interests? I don't know.

 

Harder cases are young teeens who are anorexic, should they be force fed once they have decided to die, or young mothers who are refusing essential treatment, say a blood transfusion, again refused on religious grouinds, for their as yet unborn child. Here the law really acts badly and in an extreme patriarchal form. The courts almost inevitably declate them insane, not capable of reasned judgement and decsion making and authorise the intervention.

 

Then there is the person unconscious and needing emergency treatment, well that treatment is clearly in his or her best interestys. So intervention is allowed on the say so of medics only. Bit paternal that.

 

What about the long term sick, the unconscious, the insensate, never expected to recover. Well they may have expressed their wishes in a living will or advance directive to say turn me off. Alternatively the doctors can ask court permission and if given allow the patient to slowly starve to death

 

As for the elderly its much the same, most nursing homes arrange flu vaccibation even for those who cannot say yes. That is strictly ilegal but it happens. It reduces the burden of caring

 

I did the very first application for a young mentally handicapped girl to be sterlilised that was erad inthe IOM, I did it for free as well. She had reached puberty. She had a boyfriend but would not have understood pregnancy or been able to cope with a baby. I got the court order. I see her and her boyfriend occasionally. They live in sheltered acconodation now. They certainly seem to be fond of each other and they do cope, with help, withy day to day life. I do ask myself if what happened was correct. I tend to think it was. The alternatives are an unwanted uncared for baby or series of babies or separating her from her boyfriend for life. Locking her away. That is not acceptable is it.

 

I suspect that we have become caught up in the eugenics debate, because of what Hitler did, unable to say that there are circumstyances where someone should be allowed or encouraged to die. It ties into the debates on disability and ending your own life when terminally ill. It pervades the question of saving unviable lives from day one instaed of letting them go. It is a minefield

 

Noned of what was done to Ashley was really for her benefit, it was for the conevenience of her carers, keep her light and she camn look angelic on the pilow, remain our baby forever. That sounds mawkish and wrong to me. If she is born and styas alive she has the right to grow up. That has to be the starting point. If growing up brings with it consequences that her carers and family don't wish that apperas to me to be no resaon to surgically and medically intervene.

 

I know that the counter argument is that it is for her benefit, by staying small she can be liftef personally, taken for car rides, not require impersonal hoists and chairs and contraptions to get in and out of bed and bath. Is that really a reason for her or a reason for the parents and carers to lighten their load. If its the former then OK, if the latter I'm not so sure, actually I am very sure, it shouldn't be allowed.

 

lets just say that at birth the doictors had recognised the potential problems and said OK we can keep her manageable by cutting off her legs, lets say that was what they said now. Would that be acceptable?

 

I don't know enough about Ashley and her family. I an glad of the debate. Difficult questions make hard law and hard moral choices. I am just glad they are not mine to have to make.

[matty]

I'm still on the fence on this one!

 

- Excellent and thought provoking post John.

[Gladys]

It is one of those situations that can only be judged on the specific factors, not in a hypothetical, in principle way. Both sides of the argument are equally valid, but I feel we have to defer our views to those of the people, both the parents and medical practioners, involved. As John says, a hard call and one I am glad I don't have to make.

[WilDDog]

It's got nothing to do with anyone else but the parents of the child as far as I'm concerned.

 

If the way they've chosen gives the child more opportunities and she is better cared for I'm all for it and don't see a problem.

[Albert Tatlock]

I always think about where decisions like this lead us. If this is 'ethical', what might become ethical next?

[Gladys]

Perhaps there is a wider debate on what degree of intervention is medically ethical. Just how far should science intervene? Should it intervene to an extent where is successfully saves an individual from almost certain death, to consign that individual to an uncertain life thereafter?

 

There has been a recent debate about the treatment given to severely premature babies with the result of a child surviving but with terrible handicaps and a life spent under continual medical treatment. A very hard question because medical science can assist very premature babies, but with what result?

 

Of course, some premature babies make a full recovery and continue to develop well with only a few relatively minor complications. I have a friend whose baby was two or three months premature, and is now a very normal toddler with only some digestive complications, so in that case, all was well. But how do you make that judgement?

 

I know that if I was a parent in that position I would want the doctors to do everything possible to save my premature baby, but, objectively, am I the right person to make that judgement?

 

It just seems to me that there are a number of examples where medical science in one field, particularly in acute survival techniques, far outstrips development in others dealing with the more chronic ongoing results.

[VinnieK]

Noned of what was done to Ashley was really for her benefit, it was for the conevenience of her carers, keep her light and she camn look angelic on the pilow, remain our baby forever. That sounds mawkish and wrong to me. If she is born and styas alive she has the right to grow up. That has to be the starting point. If growing up brings with it consequences that her carers and family don't wish that apperas to me to be no resaon to surgically and medically intervene.

 

What are you basing the assessment that none of what was done was really for her benefit? The consequences are not merely ones that her carers would have to deal with but don't want to, but ones that she'd have to deal with as well and would stand a good chance of giving her a rotten standard of life (which is surely a right as fundamental as the right to grow up). Also, I'm sorry to say that the implication that a factor in the decision to perform it was so that Ashley could "look angelic on the pillow, (and) remain (their) baby forever" is near reprehensible, almost suggestive of a cynical, perhaps even prejudiced view of the parents, the medical professionals, and the ethics board who presided over the decision to go ahead with the procedure.

 

I know that the counter argument is that it is for her benefit, by staying small she can be liftef personally, taken for car rides, not require impersonal hoists and chairs and contraptions to get in and out of bed and bath. Is that really a reason for her or a reason for the parents and carers to lighten their load.

I think you're making a bold distinction between the two (Ashley's benefit and lightening the parent's load) when there is at best only a vague, conditional distinction (if not entirely non-existant). If the parents have a lighter workload, and a lessened financial burden in providing care to their daughter they are then enabled to provide a better, more intensive level of care, as well as simply involving their daughter more in their lives than would otherwise possible. Somehow I doubt being of adult size would be much compensation for having to spend her entire life in a care home, measuring the rest of her life out in visiting hours and the scheduled attention of the home's staff.

 

lets just say that at birth the doictors had recognised the potential problems and said OK we can keep her manageable by cutting off her legs, lets say that was what they said now. Would that be acceptable?

 

This is a deeply problematic analogy, and I suspect one that isn't that productive. Regardless of which, if the doctors said "you can either have her legs, which are pretty much useless to her, amputated, or she'll spend the rest of her adult life in the best care home you can afford" then maybe it would be acceptable.

[John Wright]

I agree that you can l;ook at it either way.

 

I think I detect a divide between what would be acceptable in UK/IOM and what has just become acceoptable in US

 

I don't think a British Court would endorse this operation.

[Lonan3]

I've taken some time to think about this and I've also read theblog created by the girl's father - which I think is essential before making up one's mind on this particular case.

As dwatterson commented in an earlier post, it's difficult to come away from that without being convinced that the parents have acted purely and simply in what they believe to be the best interests of the girl. There is no doubt that, if they had not had this treatment available then the child would, ultimately, have been confined to some kind of institution surrounded by strangers who, however well-meaning and caring, could never truly replace the affection that the child would receive from her parents.

As someone else has said, it is the advances in science and in medical practices that have enabled someone with these problems to survive, and the consequences are that this person then has to be cared for, throughout their lives, in the best way possible.

The parents have clearly been aware of their responsibilities from the beginning, and because of the genuine love that they have for their child, have probably lived in dread of the day when they would no longer be capable of giving her the care that she needs.

There was an oportunity for them to extend the amount of time that they would be able to spend in close and loving contact with their daughter. They agonised over it, investigated it and, not without considerable misgivings, decided to pursue it.

I am convinced that they have acted in the best interests of the child - not simply pursuing a course that made life easier for themselves.

It has to be said, however, that is a very individual case. It should not, under any circumstances, set any kind of precedent for future cases of this kind.

Personally, I admire their courage, respect the obvious devotion that they have shown towards their daughter, and wish them well. But I would be seriously concerned if other such cases suddenly came to light claiming some kind of 'right' to the same, or similar, treatment.

There is an element of this that could be seen as deeply disturbing and one can only hope that every case of this kind is judged purely and simply on it's own merits without reference to others.

[VinnieK]

As someone else has said, it is the advances in science and in medical practices that have enabled someone with these problems to survive, and the consequences are that this person then has to be cared for, throughout their lives, in the best way possible.

 

I agree with the rest of your post, but feel it necessary to counter this view. The blog suggests that Ashley was not immediately diagnosed as even having a problem (this is actually quite common for this kind of condition):

 

"Our daughter Ashley had a normal birth, but her mental and motor faculties did not develop".

 

Furthermore, the condition is non-progressive and the method of keeping her alive seems no more sophisticated or medically advanced than feeding her through a tube, something we've had the ability to do for hundreds of years. She is now no more enabled to survive by recent medical advances than someone with a similar condition born thirty years ago would be by the same techniques, and, as such, the only way she could naturally fail to survive is if she was consciously starved to death.

 

The importance of this is that it counters suggestions that in this case medical science is resorting to ever more drastic methods and procedures to deal with the consequences of its own actions (which can be seen as a particular varient of the thin end of the wedge view of modern medicine). If anything, Ashley's predicament highlights not so much the advances of medical science as it does its current limitations, particularly in the area of pre-natal diagnostic scans.

[John Wright]

It's got nothing to do with anyone else but the parents of the child as far as I'm concerned.

 

If the way they've chosen gives the child more opportunities and she is better cared for I'm all for it and don't see a problem.

 

Are you really that sure

 

Ashley has undergone gross invasive surgery that was not medically called for.

 

Where would you draw the line. Is it OK to subject her to an hysterectomy but not a face lift to stop people on the streets staring when she goes out. Both are elective, ie choice procedures, she cannot chose.

 

Once upon a time children were the possessions of their parents, goods that parents could use at will. The same used to be true of women, mere chattels of their husband with no separate legal existence

 

So you are a woman, you live in a society that recognises that a married woman belongs to her husband and can take no decisions of her own. He does not want children,, but he does want unprotected sex, he books you in for an hysterectomy. Is that OK or not.

 

If Ashley had a life threatening illness that required intervention its very different, as it was growing up was going to make it difecult for those around her to care for her as they wished. Where do we draw the line if that is acceptable. Growing up is not a medical condition to treat, its part of life, for us all, including Ashley.

 

I am afraid the more I analyse it the more I think its the slipppery slope.

[Chinahand]

One thing that I think is important is to discuss the medical problems that do result from having quadraplegic adults who do not have the ability to control their limbs, bodily functions or communicate their sanitation needs.

 

Uro-genital infections are a continual problem. Bladder and kidney failure are real risks as are problems produced by genital infections - hysterectomies are not unlikely!

 

Bedsores, ulceration and necrosis of the skin are also serious risks with the weight of the body continually pressed down on the bed.

 

Amputations from infections caused by these problems spreading are also real possibilities.

 

The long term care of these types of people are categorically not just a matter of feeding one end and keeping the other end clean ... though obviously these are very important! Serious medical issues develop from being unable to control the body and being continually prone with no ability to shift weight.

 

I think the comments made above saying "why don't they chop their limbs off" miss the point. The long term prognosis for a bed ridden quadraplegic is very likely to include amputations.

 

Yes invasive surgury has been done, but to baldly state it was not medically called for is too simplistic. Menstral cramps are one issue, but the difficulties from infections due to menstral blood not draining fully from the body and becoming food for bacteria are another (probably too much information hey!!).

 

It is a sad fact the life expectency of people/children like Ashley is short. Not due to lack of love or care, and only partly due to the difficulties of giving them adequate nutrition (more often accidental than deliberate), but simply due to the fact the body is not designed to stay in one position for years on end. If you cannot control your body, it withers away and often decays in the process and that can be fatal.

 

Being small and light is a definite advantage - it allows you to be able to be moved and stimulated - and that can be life saving.

 

This is a most complex debate and I don't think it should be reduced to simplicities.

[The Godfather of Manx House]

I'd just like to make clear that I don't actually have a problem with the decision of the Parents per se. My isuue, as someone else pointd out, is that they were given this decsion in tne first place. I haven't read The Blog...I don't need to. I simply fundamentally disagree with the decision to stunt the natural growth of a child for whatever purpose.

 

As I said initially...where do we go next ? As JW points out, down a very slippery slope...

 

...GOMH*...

[Albert Tatlock]

Not meaning to trivialise the debate - but as there is a 90% probability that the rest of your body will eventually kill you (cancer, heart attack etc.) couldn't many of us end up like this as science advances? They could be fitted with convenient carry handles for carers and easily stacked to save money, in fact one carer could look after dozens kept on the mantelpiece. It is a fact that, after death, many people are freezing just their heads cryogenically these days (Clicky).